What is actually wrong with you?

I know it’s been a while since my last blog post but I guess there’s nothing new there! Many of you know that over the last 10 months I have been receiving treatment at Breakspear Medical, a private hospital in Hertfordshire, just outside of London in the UK. Over those months my health has gradually started to improve and I’ve begun to reverse the last 10 years of decline in my health. I’ve shared much of my journey on social media, such as Facebook (Emma Franklin) Instagram and Twitter (@myblondevoyage) and Snapchat (@emma_louise999), despite this, many people still ask me, ‘What is actually wrong with you?’ This is probably due to the complexity of what’s ‘wrong’ with me so it can be quite confusing for people! I thought I would try my best to explain in this blog post using my initial test results from Breakspear so you can have a better understanding of what has actually gone ‘wrong’ in my body. The delay in this blog post is also because I’ve spent the last 10 months processing what all of this means and I haven’t been quite ready to put it into words and out there for the world to see, but now I am ready… Or at least I think I am?! Writing this blog is sort of like therapy for me. It helps me process chapters of my life, it helps me come to terms with and accept certain things but most importantly of all, it helps me close certain doors of my journey in order to continue to move forward both physically and mentally.

In my previous two blog posts, I covered details of my initial consultation and the initial tests I had done with my doctor at Breakspear, which you can read about here. I then posted about the first course of treatment I had (before my test results were back), as well as the initial tests I had done with the neurologists, which you can read about here. It usually takes about 2-3 weeks for all of the initial test results to come back, so patients usually book a follow up consultation for around the time all of the results are expected to be back (Breakspear let you know when this will be). However, when just a few of my results were back, Breakspear contacted me to say they had some results back and my doctor, Dr Monro, didn’t want me to wait two weeks for the rest of my results to return – she wanted me to book a follow up appointment to see her ASAP. I obviously expected my test results to reveal some abnormalities and irregularities, which would explain my ill health but I guess I wasn’t prepared for the actual amount of things that Breakspear found had gone so terribly ‘wrong’… I use the term ‘wrong’ because I see sickness from a biological perspective – so when our bodies are healthy they are functioning optimally but when someone is sick, something in the body isn’t working properly. I think the tests that Breakspear offer do an incredible job at finding out what’s gone ‘wrong’ because only then can you attempt to fix it!

I will now share with you the results from my initial tests at Breakspear eeeek… Most of the tests already come with explanations but I’ve also tried my best to summarise what the results mean so you can actually scroll past the test results to my explanations if you like. I’ll also share details of the laboratories the tests were performed at incase anyone is interested in having these tests done for themselves…

Vitamin D (blood) Test with The Doctors Laboratory 

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Despite not having left the house for over 9 months back in January 2016 and living in a black out room (resulting in no sunlight at all touching my skin for almost a year), curiously somehow my Vitamin D levels were NOT extremely deficient which is what Dr Monro had predicted on the day of my initial consultation. I was given a Vitamin D injection straight after my initial consultation before these results were back because of this predication so once the results were in we wondered did I need that injection after all? It turns out I did because Breakspear don’t follow the same reference range as the lab who ran this test and Breakspear actually consider my result as low, which is why the injection was a necessity. My pain levels did reduce a little for a few days after the injection! WOOOOP! Breakspear have different reference ranges for adequate Vitamin D levels than the NHS references. As we have seen in the news this Summer, the NHS have changed their guidelines recommending everyone in the UK to take Vitamin D supplement in the Winter because their Vitamin D recommendations before were much too low!

Lyme Serology Panel B (blood) Test and Viral Panel Comprehensive (blood) Test with Immunosciences Lab 

LYME MULTI-PEPTIDE IGG ELISA ESSAY 

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LYME MULTI-PEPTIDE IGM ELISA ASSAY 

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After 10 years of being sick, being diagnosed with groups of symptoms such as Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) and Fibromyalgia on the NHS, I saw this trailer (below) for a Lyme disease documentary online. It changed everything I had ever thought about what was wrong with me. I watched this and I knew I had Lyme. How? Because 10 months ago, before I went to Breakspear, the people in this video were me. I felt as if I was looking in a mirror and Lyme was staring back at me. At the time I was so sick I couldn’t have contemplated sharing anything with you about Lyme, yet alone writing a blog post!

If you don’t read anything else of this blog post, please watch the trailer for this film. These few minutes will help you understand Lyme better than anything else I’ve seen so far.

My Lyme disease results were POSITIVE! Lyme disease is an infectious disease caused by the bacterium Borrelia Burgdorferi which is why it is also know as Lyme Borreliosis. You get Lyme disease when you are bitten by a tick which carries the bacteria (recently it has been discovered that you can also get it from mosquitos!). At some point in time I would have been bitten by a tick or mosquito, although I don’t ever remember seeing a tick attached to my skin. How would I have seen it if it was in a place I couldn’t see though? Also, ticks are so small they are barely visible to the human eye! 30% of people who contract Lyme from a tick get a bulls-eye rash around the site of infection so they know they’ve been bitten and have been infected with Lyme. I don’t ever remember seeing this rash but then again what if it was in a place I couldn’t see? Side Note – my mum just told me as I’m about to share this post that around the time I began to get sick I had ‘ringworm’ where a red circular rash appears around the site of infection – we are now wondering if this could have been the bullseye rash for Lyme all along?!?! There’s also the point to make that 70% of people with Lyme don’t even get a rash. So, you 100% can have Lyme disease even if you don’t remember a tick bite or a rash. If you take antibiotics as soon as you are infected with Lyme disease you can prevent it from turning into a chronic condition. I have been sick for 10 YEARS with UNTREATED Lyme so for me it’s a different story. I have LATE STAGE CHRONIC LYME DISEASE. From further investigative tests at Breakspear I have found out that the bacteria is so far spread around my body that it has infected my muscles, my heart, my gut, my joints, my urinary system, my nervous system and my brain. THIS IS THE REASON WHY I HAVE BEEN SO SICK!!!! Finally an effing answer after 10 years!!!! Unfortunately treatment is a whole other story when you have late stage chronic Lyme disease. If only it was as simple as taking a few weeks’ worth of antibiotics. It pains me deep inside knowing that a few weeks of antibiotics all of those years ago could have saved me from this living hell. My life may never have turned out this way and that is the sole reason why raising awareness is so important; so others don’t have to experience what so many of us have. Oh there’s one more key thing – there is NO CURE for CHRONIC Lyme disease! I will write more about Lyme disease and treatment options in a future post. I hope that short summary gives you a little bit of knowledge about Lyme or if you have any questions please comment below 🙂 Also – there is a Lyme disease test available on the NHS in the UK but it is only 30/40% accurate/reliable so 60-70% of people who actually have Lyme disease get a negative result from the NHS test. This is why so many people go undiagnosed on the NHS and why we have to go private to get reliably tested.

One of the many problems with Lyme is that when you are bitten and infected with the Lyme bacteria, you are usually infected with other infections as well, which are known as ‘co-infections’. To sum it up, you are infected with whatever other nasty diseases the tick is also carrying! Whatever bit me and infected me with Lyme was also carrying Babesiosis – a rare, severe and sometimes fatal tick-borne disease caused by various types of Babesia, a microscopic parasite that infects red blood cells. It is a relative-species of malaria that caused the same symptoms as malaria and damages the body in the same way. I will write more about this, the symptoms and treatment options in a future Lyme blog post.

Another problem with the Lyme disease bacterium is that it suppresses the immune system. This is the reason I have a positive active Epstein-Barr Virus (glandular fever) test result. It’s a fact that 98% of the population have antibodies to EBV meaning they have had EBV at some point in time but most people don’t know it and don’t get symptoms because they are healthy and have strong immune systems. I either caught EBV after I got Lyme and my body has never been able to fight it off or I had it before Lyme, I fought it off, it became dormant and then when my immune system became suppressed because of Lyme disease it reactivated and has been a chronic active infection ever since! I will also talk more about this, the symptoms and the treatment in a future blog post.

Haematology, Biochemistry Profile with Electrolytes (blood) Test with The Doctors Laboratory 

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Immunology Profile (blood) Test with The Doctors Laboratory 

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These haematology and biochemistry tests are the general blood tests that Breakspear do to check if everything is working properly. They are quite similar to the general blood tests GPs on the NHS will do when you go to them complaining of various symptoms. As you can see from my results, there are many abnormal results highlighted in red, which give some indication to what has gone ‘wrong’.

My neutrophil count is too low… my neutrophil count has been too low for as long as I can remember. Around 8 years ago when I first started going to my GP with my mum about my physical symptoms, the GP took blood tests to see if they could find out what was wrong. My neutrophil count came back too low and has been that way ever since. The GP referred me to an immunologist on the NHS who conducted more extensive tests but they obviously didn’t find anything. I was told ‘there is nothing wrong with you’ for the first time out of hundreds, if not thousands, of times to come! Once my first lot of test results were in, Breakspear repeated these general blood tests and my neutrophil count was once again too low. Breakspear diagnosed me with neutropenia because my neutrophil count is consistantly too low. Neutrophils are an important type of white blood cell in your immune system. They are made in the bone marrow and travel around the body in the blood to help the body fight off infection (particularly those caused by bacteria) by sensing infections, gathering at the site of infection and destroying the pathogens. Without enough neutrophils, your body can’t fight off infections. Having neutropenia increases your risk of many types of infection as well as difficulty in fighting them off – this definitely correlates with my history, symptoms and the rest of my test results! I also recently found out the co-infection Babesiosis/Babesia can cause low white blood cell counts.

My monocyte count is too low… Breakspear also diagnosed me with monocytopenia due to these results. Monocytes are white blood cells that help to fight off infection so a low number of monocytes in the blood usually indicates an increased risk/susceptibility of infections. A low monocyte count occurs in a range of illnesses that affect the bone marrow such as rheumatoid arthritis, HIV, lupus, leukaemia and aplastic anemia. It can also be caused by bloodstream infection, certain medications such as chemotherapy or vitamin deficiencies. Lyme disease/Babesia has suppressed my immune system so severely that my body can no longer produce white blood cells properly in the bone marrow.

My creatinine level is too low… Creatinine is a chemical waste product that is produced when Creatinine Phosphate is metabolised and broken down in the muscle. Levels that are too low can be caused by a diet low in protein, in conditions that cause muscular atrophy (decreased muscle mass) or from aging.  It can also indicate severe liver, kidney and heart disease. As you know from reading my previous blog posts, when I first went to Breakspear I weighed just six and a half stone and had severe muscle atrophy in my arms, legs, and neck so I couldn’t use my arms to feed myself, use my legs to stand or walk or use my neck to lift my own head up. We originally thought that this was due to deconditioning from being bedridden for so long but after extensive tests at Breakspear we now know that one of my main sites of infection for Lyme disease is my muscles. So Lyme destroyed my muscles causing the muscular atrophy. Obviously, being bedridden didn’t help the situation though!

My LDH level is too low… Lactate Dehydrogenase is an enzyme found in nearly all living cells that helps convert sugar into energy. Levels that are too low can be caused by a genetic mutation which causes exercise intolerance, fatigue, muscle breakdown and muscle pain. All I have to say is that fatigue, muscle wastage and muscle pain are some of my worst symptoms!

My uric acid levels are too low… Uric Acid is a chemical created when the body breaks down substances called purines, which are found naturally in the body and in some foods and drinks. Levels that are too low can indicate kidney disease because it’s the kidney’s job to filter out uric acid from the blood into the urine. It can also be seen in chronic alcohol use which is interesting because over the years my uric acid levels have always been too low on the NHS tests. NHS doctors have often asked me if I drink a lot… the answer was obviously NO. It can also be caused by exposure to toxic compounds which you can read more about in my test results further down in this blog post.

My iron levels are too high… Breakspear went on to repeat these blood tests 5 times over the next few months and each test found that my iron levels were too high. My Dr suspected I had the condition haemochromatosis, so I had a test called Haemochromatosis Genetic Test to see if I have the faulty gene for this condition. The test came back positive and indeed I have haemochromatosis. This is a metabolic disorder causing the body to absorb too much iron from food and to deposit it in the vital organs, which can be very dangerous! The main symptoms are fatigue and joint paint which we know I have! I will now have to have blood drawn whenever my iron levels are too high. I’ll speak more about this, the symptoms and treatment in a future blog post.

Coxsackie Virus (blood) Test with The Doctors Laboratory 

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The Coxsackie virus is also known as hand, food and mouth disease. It’s part of the enterovirus family of viruses (including polio and hepatitis A) that live in the human digestive tract. Many people with Lyme have this virus but thankfully this test came back negative!

Intestinal Floral Immunity (blood) Test with Alletess Medical Laboratory

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This intestinal floral immunity test is looking at the good bacteria present in the gastrointestinal tract (the gut). I have low IGG antibodies to E.coli and Lactobacillus… low IGG antibody response to this normal microflora indicates a reduced or blunted immune response or underlying immunodeficiency, which we know I have because Lyme disease has suppressed my immune system. Normal microflora prevents the growth of pathological microbes and regulates many immune functions including allergic response to food. It also helps maintain the surface of the intestines and produces vitamins B and K. Therefore low microflora can indicate an inflammatory response and can contribute to leaky gut syndrome – this is where food and microbes can cross the wall of the gut into the blood stream, causing allergic reactions and food sensitivities. You may have read in my previous blog post about the severity of my food allergies and sensitivities! The IGG Comprehensive Food Panel (blood) Test you can see below tested me for allergies to many different foods – the ones in red are the ones i’m allergic to. 1* means mildy allergic and 2** means moderately allergic. I’ve been having Low Dose Allergy Immunotherapy (LDI) at Breakspear to treat my allergies, which you can read about here, in this previous blog post. The LDI also helps to stabilise my immune system and my autonomic nervous system.

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Candida (blood) Test with Alletess Medical Laboratory

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Candida Albicans is a fungus that grows as yeast and is one of the few species of Candida that causes Candidasis in humans. Everyone has candida in their gut, as it’s a type of healthy yeast that lives in your body. It becomes a problem if it grows out of control. As you can see my IGG, IGA and IGM antibodies are all abnormally high. This indicates a recurrent on-going chronic overgrowth of Candida, as well as suggesting it has crossed the mucosal barrier into my blood stream. My results indicate a serious problem with my immune system due to its inability to keep candida in check, which we already know I have due to Lyme Disease suppressing it.

Organic Acids (urine) Test by The Great Plains Laboratory

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N0 7 (high) Arabinose is a sugar produced by yeast so this indicates a yeast/fungal overgrowth in the gastrointestinal tract which we know I have – candida!

No 9 (high) Tricarballylic Acid can be caused by the intake of corn or corn-based foods contaminated with fungal mycotoxins/moulds. Tricarballylic is released from the mycotoxins when they pass through the gastrointestinal tract. They inhibit the enzyme aconite from working which therefore stops the Krebs cycle (energy making process) from working properly. The main symptoms of aconite deficiency is exercise intolerance which we know is one of my worst symptoms!

No 10 (high) Hippuric Acid may derive from GI bacterial activity, which we know is happening from candida and my microflora test results I talked about earlier on.

No 17 (high) 4-Cresol in the urine is most commonly due to C. difficile being present in the GI tract. High 4-Cresol is associated with the most severe clinical symptoms in autism, multiple sclerosis, neurotoxity and other neurogloical disorders. Prior to going to Breakspear I was being investigated by the NHS for MS due to my MS symptoms and further down you can read about the neuro toxic poisoning I have.

 

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No 21 (high) Oxalic – oxalic can be deposited in joints, muscles, kidneys, eyes, brain, blood vessels and heart which can cause the pains associated with Fibromyalgia and heart abnormalities. Oxalates are often a byproduct of Candida which causes autism. We know I have Candida, Fibromyalgia and heart problems!

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NO 46 (high) Methylsuccinic – this may be due to a fatty acid oxidation disorders. This is when the body can’t break down fat properly to produce energy. In turn this can cause lethargy which is one of my symptoms!

NO 53 (high) Vitamin B2 Riboflavin… this indicates a B2 deficiency. It also indicates a problem with fatty acid oxidation.

 

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NO 61 (high) Aspartame, salicylates or GI bacteria… in my case it is likely that this is too high due to problems with GI bacteria.

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Comprehensive Stool Analysis Test with Doctor’s Data

This stool sample test was done to test for parasites which thankfully I don’t have wooo!  However, this test really shows the damage that Lyme disease has done to my gut and my immune system. Many people with Lyme have problems with their gut and the majority of us have a suppressed immune system when the Lyme becomes chronic.

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These results show that I have yeast overgrowth, which we already know I have. Yeast overgrowth can infect virtually every organ system, leading to an extensive array of clinical manifestations. Although there are many symptoms that result from candida overgrowth, some of the most common symptoms are brain fog, fatigue, cravings for sugar or carbs and sensitivity to smells (perfumes, chemicals, environment), all of which I suffer from!

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This test found that I have red blood cells (RBC) in all 3 stool samples which shouldn’t be there. I have gone on to have a faecul occult blood stool test since then which came back positive for blood. I then did another faecul occult blood test after cutting out meat for a few days to check it wasn’t from eating meat and this came back positive. I’ve now been referred by my Dr at Breakspear to Dr Sean Preston at London Digestive Health on Harley Street in London so he can investigate to try and find out where about in my gut I’m bleeding from. I’ll post more about this at a later stage…

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This high secretory IGA level indicates an upregulated immune response in the immune barrier of my GI tract.

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Short Chain Fatty Acids (SCFAs) are too low…  When bacteria ferments dietary fibre, short chain fatty acids are the end product. They play an important role in the health of the GI tract and are essential in the gut to decrease inflammation, stimulate healing and contribute to normal cell metabolism. SCFAs also decrease the PH of the intestines and make it an unsuitable for pathogens including bacteria and yeast so if there is a problem with SCFA then bacteria and yeast can thrive in the GI which we know has happened to me!

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Toxic Compounds (urine) Test with The Great Plains Laboratory

This Toxic Compounds Test I had looks for chemical poisoning… The black markers in my results should all be below the LLOQ line, if they aren’t this indicates poisoning of that specific chemical. There are also explanations of each chemical below. Many people with Lyme have chemical poisoning and problems with detoxification. I will talk more about the reasons behind this in a future blog post.

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A few years ago I developed Multiple Chemical Sensitivity, a condition which I’ve previously written a blog post about here. From the test results above, I can now understand why I have so many issues with chemicals. The toxic load of chemical poisoning in my body is so high that when I encounter every day chemicals such as perfume, cigarette smoke, cleaning products or car exhaust fumes it makes me so sick because my body simply can’t handle any more chemicals in the body! Many people with Lyme have Multiple Chemical Sensitivity because we have serious problems with detoxification. I will write about the significance of this to our health in a future blog post.

Monro Fatigue Panel (blood) Test & Lymphocyte Sensitivity (blood) Test with Acumen

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This test result indicates a problem with fatty acid oxidation which I’ve spoke about earlier on in this blog post. Fatty acid oxidation issues seem to have come up a few times in my test results but i’m still not really sure what it means/the clinical significance of them??

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Above is the chemical sensitivity test that I had which shows some of the chemicals I’m abnormally sensitive to. The substances with a result over 100 are the ones I have problems with. I already knew that petrol exhaust makes me more sick because every time I walk down a road with lots of traffic or when I’m in cities, in a car, at a petrol station and especially in a car with the windows down stuck in traffic, I react really badly meaning many of my symptoms get much worse so I feel much more sick. I also already knew that I’m allergic to nickel because whenever I wear glasses or earrings that contain nickel they literally burn off layers of my skin! Nitrosamines is a chemical in cigarette smoke, which I know makes me so much worse because when I used to smoke it made me soooooo much more sick and even just walking down the street makes me more sick because of all the people smoking around me.

Due to this build up of chemical poisoning in my body, some of the chemicals have attached themselves to my DNA. Toxins attached to the DNA are carcinogenic and can lead to genetic mutations which cause cancer so this is an extremely important test result! I have 3 different toxins attached to my DNA which you can see along with explanations below.

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To summarise:

Nitrosopyrrolidine is a Nitrosamine which comes from burnt organic matter, burnt food, rubber and, most commonly, cigarette smoke. I smoked for many years before I became too sick to smoke so this is likely where it came from! (I know it’s bad that I only stopped smoking because I became too sick!)

Benzo(a)pyrene is a PAH from grilled/burnt food which I have always eaten a lot of because I love eating well-cooked and burnt food!

Chromium is found in stainless steel so this could come from using stainless steel pans!

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I also have four toxic chemicals blocking my mitochondria (the parts of the cell which make energy) so that they can’t make energy properly. Chromium and nitrosopyrrolidine are two of the four toxins that are attached to my DNA. Another is a large lipid complex and the fourth is Dioxin.

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These test results below show how effectively the energy making cycle is working. It has found that 31% of my mitochondria are blocked with toxic chemicals which means 31% of them can’t make energy properly! No wonder I have such problems with energy!

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This test below found that I have DNA floating freely in my blood plasma. It shouldn’t be there. It should be inside cells. So somewhere in my body, cells have degraded releasing DNA. Oh dear!!!!!!

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Mycotoxin Panel (urine) Test with Real Time Laboratories

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This Total Mycotoxin Panel (urine sample) test I had tests for mycotoxins, which are also know as moulds. I live in an extremely old barn conversion in the countryside which is hundreds of years old and I feel much more sick when I’m at home compared to when I’m in other places so my doctor suspected mould to be growing in our house. Many people with Lyme have mould issues but thankfully this test result came back negative which I’m very happy about because mould is so difficult to treat! I’m now on a quest to discover the reason that I feel much more sick when I’m at home compared to other places… our house is surrounded by fields covered in pesticides/insecticides etc which are some of the chemical poisoning I already have in my body so could it be that this is continuously making me sick? Could it be because my house is absolutely FREEZING and i’ve recently had tests with the neurologists which explain why i’m so much more sick in the cold (will explain at a later date)?  My dad sent me an email recently saying that some people get sick from oil heated houses so could it be that I’m sensitive to our oil heating? The current answer is – WHO KNOWS!?! Hopefully I’ll be able to answer this question one day 🙂

So we’ve come to the end of my initial test results (finally! I know, thank goodness!). The main reason I was so scared of sharing these results because they are so personal to me and my journey (LOL it makes me laugh when people say my journey! like I’m on some sort of spiritual healing path). They are the first time since I began to get sick 10 years ago that any test has been able to give some sort of explanation of what is ‘wrong’ with me. They explain why I have these symptoms and finally answer the question I have spent half my life wondering – what on earth has happened to me? Where did it all go so wrong?! The significance of these test results show how closely they correlate with my complex medical history and provide explanation of the wide variety and severity of my symptoms. They are a reason, they are justice, they are evidence and most importantly they are proof of everything I’ve ever felt over the last ten years. Only now I can begin the road to recovery because only now do I know what is ‘faulty’ and what needs ‘fixing’. I have never been able to understand how some people expect me and others to get better if we don’t even know what’s wrong?!?! It’s like trying to fix the well oiled machine when you don’t know which part isn’t working! It makes NO sense to me but that’s probably my logical way of thinking not allowing me. My friends and now doctors at Breakspear have said to me that I’m extremely ‘methodical’ with my way of thinking but to be honest being methodical was my only way of figuring out what went wrong which was the only way to know how I could get better. I’ve already begun to write my next blog post which is all about treatment! I will share in detail the things that have helped me take my first steps on this treacherous road to recovery. This is not the end, this is just the beginning of a possible life long road which will lead me to a future full of laughter, love and life.

*** I just want to say that I’m not a doctor or a scientist so my interpretation of these test results if based on my prior research and knowledge as well as everything I’ve learnt from the doctors, neurologists, nurses and fellow patients at Breakspear Medical along the way. If anyone has any questions please let me know and I will try and get back to you guys as soon as possible!

I hope that in some way shape or form, this has helped someone in some way. Bye for now, Emma x

PS. Don’t forgot to subscribe to my blog  to receive a notification when I publish a new post by entering your email in the subscription box which you will find on the ‘About Me’ page on mobile or the ‘Home’ page on desktop…

Breakspear Part 2

Hey everyone, I’m back again with another post about Breakspear Medical Hospital! You can read my previous blog post here to find out about the process of applying to Breakspear and my first day there, which included an initial consultation, numerous tests and far too many needles! I first started going to Breakspear back in January 2016; at the time I couldn’t travel the 3 hour car journey from my home in Staffordshire to the hospital in Hertfordshire then go straight into hospital so we stayed in Hemel Hempstead the night before my first day there (and the night after) … it’s a good job because they wanted me to start treatment with them the very next day!

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The treatment I began the day after my initial consultation is called Low Dose Allergy Immunotherapy (LDI). This is a technique where vaccines are used to treat food and chemical/inhalant allergies. The reason I began this treatment immediately is because I had already become intolerant to gluten, grains, dairy, refined sugar and many of the chemical additives, preservatives and colourings found in processed foods. I already lived on a very strict diet consisting of meat, fish, veg, fruit, nuts and seeds meaning no grains (this obviously includes gluten), no dairy, no legumes, no refined sugar, no processed foods and no foods with chemicals, preservatives or additives. I had already developed intolerances to many of the foods I was still eating without even realising! What usually happens once food allergies begin is that as time goes by more and more allergies develop (this was the case for me) until eventually people end up not being able to eat anything because they are allergic to literally EVERYTHING! I actually have a few friends who have reached this point and survive solely on nutrition shakes or cucumber and potatoes. This is the direction I was heading in so Breakspear needed to put a stop to this and halt the progression ASAP!

On arrival for my first day of LDI testing, the day after my initial consultation, we were given a list of over 500 different foods and other common allergens that Breakspear offer vaccines for. The most important foods to begin using this technique with are the ones that you most commonly eat; this is to ensure you don’t develop any new food allergies on top of the ones you already have and to make sure that you can continue to tolerate the foods you still eat. Here is the list of substances you can be vaccinated against…

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As well as choosing individual substances to test for and add to your vaccines, you can choose a combination of substances to test for in one go. The mixed vaccine substances give a coverage for combinations of foods but they aren’t as specific as testing each substance individually so this is only appropriate for patients who are less sensitive to these specific substances. Here are the mixed substances you can choose from…

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If LDI is a treatment that has been recommended to you by your doctor then during the initial consultation they will have discussed with you which substances they think you should test for but you are also given this list of common foods and chemicals for some guidance. The nurses conducting the testing are extremely knowledgeable, very experienced in this field and also there to help guide you with your choices.

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The treatment begins with a fine injection in the arm just under the skin ,containing the first substance you are testing, which in my case was a food. Once this substance has been injected, the body will react to it, producing a bump or wheel around the site of injection. After a few minutes the wheel will either remain active or disappear. After ten minutes if the wheel is still active the nurse will then weaken the concentration of the substance and inject you with the new weaker dose. Ten minutes later the wheel will be evaluated again for it’s reaction and depending on the size of the wheel, the dose of the substance concentration may be lowered again. This process continues until NO REACTION IS PRODUCED – the dosage where no reaction is produced is known as the ‘end point’. You can fit 25 substances in one vaccine so the same process is repeated with each substance you are testing. Once the ‘end point’ has been found for all of the substances you are testing, the pharmacy at Breakspear then put all of the correct concentrations together to build the vaccine. The second step of this technique is the actual treatment – you take the vaccine home with you and take it at least once every day… don’t worry though you don’t have to inject it! You can push the syringe and let the fluid be absorbed underneath your tongue instead. By now you are probably wondering how on earth this is going to help treat allergies and sensitivities?!?!? I will try my utmost best to explain it for you (apologies in advance if I don’t do so well – brain fog has taken over) …

The substances in your vaccines are known as ANTIGENS – a protein, which is usually foreign to the body, that stimulates an immune response, resulting in the production of an antibody. Each day when the patient takes the vaccine the antigen enters the body and it stimulates the production of an ANTIBODY – a protein manufactured by the white blood cells to neutralise antigens. When an ALLERGEN – substances that cause the body to react next enters the body, the body already has antibodies ready to neutralise it so it is already prepared to deal with it before the substance provokes any symptoms/an allergic response. To sum it up, the vaccine contains a tiny amount of certain foods that are enough to stimulate an immune response (antibody production) but not too much to cause the patient to provoke an immune response/allergic reaction. Then once the actual substance whether it’s a food or chemical enters your body, the immune system is already prepared with antibodies to neutralise the food allergens before an allergic reaction/symptoms are produced because taking the vaccines each day maintains the levels of antibodies in the body. How mad is that?!?! I hope it makes sense and you are having a eureka moment like I am!

Now let’s talk costs: a full day of allergy testing is 6 hours and costs £230… it is split into 3 hour blocks… testing from 9-12 pm, lunch from 12-1pm and testing from 1-4pm. Half a day of allergy testing is 3 hours and costs £115 and there is an overrun charge of £60 which applies to up to 60 minutes, after which time a half day charge will be applied. I managed two hours of testing on my first day doing LDI and considering the physical state my body was in, this itself was a HUGE achievement! Those two hours of LDI had ensured that my body had been pushed about a thousand times beyond it’s limits because each time you are injected with a substance, it is provoking an immune response from your body so every ten minutes you are having an allergic reaction, which comes with a hefty load of symptoms and imagine the amount of energy that is demanding from the body every ten minutes! A week later I returned to Breakspear to finish making my first vaccine, which included testing the foods I most commonly eat; this gave me a broad coverage of foods and the best chance of preventing new allergies to the foods I could still eat. As well as creating a vaccine for foods, I also created a second vaccine containing histamine and acyclovir. It was important for me to have a vaccine with histamine in it because my allergic reactions to foods, chemicals etc were so severe that I needed this histamine vaccine to take a few times a day or whenever I needed to help neutralise an allergic reaction. If you are wondering what acyclovir is, it is the anti-viral drug my doctor, Dr Monro prescribed me on the day of my initial consultation to treat chronic active viral infections she suspected I had (you can read more about this in my last blood post here). When I first started going to Breakspear, my body couldn’t tolerate any medication AT ALL – I would have extreme reactions to all medication including nausea, stomach cramps, vomiting, hallucinations, dizziness, fainting and black outs – even taking just one paracetamol would black me out for an hour! My body was in far too much of a ‘crisis’ state to tolerate anything entering the body which was a concern for Dr Monro because how was I going to be able to take any medication to help me get better?!?!? The answer to this was LDI! By adding acyclovir to the vaccine which I could take every day for a couple of weeks helping build up my tolerance to it and prepare my body for when when I started taking the actual acyclovir medication. It takes 2-3 weeks for the vaccines to work properly so after two weeks of taking the vaccine containing acyclovir, I started taking the acyclovir medication and I had no reactions to it!!! This method of treating food and chemical allergies was actually working!!! I really could not believe it!

Here is a list of the substances in my first two vaccines…

 

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The technique Low Does Immunotherapy originated in the United States and is used by doctors all over the world but Breakspear is the only place in the UK who offer Low Dose Allergy Immunotherapy, which you can read more about here. This is different to the low dose immunotherapy used in America for treating infections such as Lyme disease, candida etc… it is purely an allergy treatment for food and chemical sensitivities. Here is some extra info for those interested in this method of treatment…

  • You can’t take any anti-histamines for 3 days before testing as it may interfere with results and you’re not allowed to take pain killers during testing incase it masks symptoms (this was one of the most difficult parts of LDI for me because I needed opiate pain relief to simply be awake in my own bed let alone out of the house doing something that was physically demanding on the body).
  • You can’t eat or drink anything apart from water during testing as it may interfere with results. You can bring your own lunch to eat during the break or you can order food from the kitchen at an additional cost(everything cooked to order and all diets catered for).
  • You need to wear sleeveless tops when testing because the injections are on the upper arm.
  • There is a ward in the hospital for drips/infusions, a ward for allergy testing and 5 private rooms off the side of the ward, which I was in during LDI because I was far too sick to be on the ward with all the light/noise/movement etc.. most people do the testing on the ward but you may request a room when making the appointment if you feel you need one. This can’t be guaranteed though as the staff decide who gets them based on patients clinical needs.
  • The length of time it takes to build a vaccine massively varies between individuals because it depends on how much you react to a substances and therefore how long it takes to test each substance – it can take anything from a few days to a couple of weeks to build a new vaccine.
  • The number of days you need to book in for testing will have been recommended to you by your doctor during the initial consultation but if you don’t require all of your booked sessions you can cancel at reception.
  • Once you have the vaccines ready to take home with you, they must be kept frozen apart from when you’re defrosting them to use them (obviously duhh).
  • You can’t eat or drink for 30 minutes after taking the vaccines so I take them after breakfast but sometimes I take them 2-3 times a day if I feel that I need to and I take the histamine vaccine more frequently than the food vaccine because that is used for all types of allergic reactions.
  • The other costs involved in LDI are the actual vaccines which cost £3.95 per substance which works out at £98.75. The actual testing is much more expensive than the vaccines. There is also the price of the needles which you buy per box but i’m not sure of this cost sorry!
  • The vaccines last 3- 4 months then they need re-testing.
  • and finally if you are scared of needles then this is the treatment that will cure your fear!!!

neuroscience-treatment

 

Dr Monro wanted me to have one last set of tests at Breakspear before I returned home to recover from my first few weeks at the hospital… During my initial consultation with Dr Monro, she identified certain physical signs which indicated I have severe dysautonomia (I spoke about these in my previous blog post, which you can read here). Dysautonomia is an umbrella term used to describes several different medical conditions that cause a malfunction of the autonomic nervous system (ANS). The autonomic nervous system is the part of the nervous system responsible for the control/regulations of our organs and bodily functions that we don’t consciously direct, such as breathing, the heartbeat and digestive processes. Breakspear is the only place in the whole of Europe who offer tests of the autonomic nervous system, which explains why people come from all over Europe and the world to be patients there! They offer two sets of tests of the autonomic nervous system: the Baseline Autonomic Index test which is basic testing of the autonomic nervous system and the Quantitative Inotropic Fatiguability & Transcutaneous Gas (QIFT) test, which is a more in-depth version of autonomic nervous system testing. During the initial consultation with doctors, if the doctor suspects possible autonomic dysfunction in a patient then they will recommended the baseline autonomic index test and then if the results do show some autonomic dysfunction, the patients will later go on to have the more extensive QIFT test. However, because my doctor found signs of severe autonomic dysfunction during my initial consultation she recommended I go straight in with the QIFT test.

These tests are not conducted in the same area of the building as the main wards and the doctors consultation rooms… they are unfortunately undertaken in the neurosciences department which is down some stairs… uh oh… you can probably sense the dread in my voice upon hearing the word STAIRS. Stairs and people who can’t walk more than 2-3 metres even on flat ground do not mix well… OBVIOUSLY I couldn’t go up and down the stairs (we counted recently & there are 6 stairs) so I was wheeled out of the building, around the back and entered the neurosciences department that way instead. I run into some trouble with the stairs again at a later date so the one thing I wish Breakspear had but doesn’t was a lift!!! The main specialist neurologist, Dr Julu, was working away in Sweden at the time of my appointment (most of the doctors at Breakspear work abroad in other hospitals as well, which you can read more about here) I saw Dr Shah who is a part-time clinical neurophysiologist at Breakspear and runs the test and performs the analysis of the test results before discussing in detail(what actually happened at every heartbeat). He asked me lots of questions about my autonomic symptoms, which would indicate to him what’s going on with my autonomic nervous system and then we moved through into another room where there were lots of machines and wires waiting for me to wired up (its not as scary as it sounds)!

I don’t remember anything that happened whilst I was in that room because I was so sick at the time that I was in a semi-state of consciousness but I’ve spoke to Dr Shah since about my experience with the QIFT for the purpose of this blog post. Before the tests could begin, Dr Shah had to clean areas of the body he wanted to attach electrodes to (he usually uses alcohol to do this but because of my chemical sensitivities I couldn’t tolerate this so he used water instead) then electrodes were attached to 2 areas of my chest, another on my stomach and another over my liver to measure the oxygen and carbon dioxide levels deep in the tissues. A blood pressure reader was attached to my finger, which had to be at the same level as my heart so my arm was put into a long sling to raise my finger as close to my heart as possible (he said he didn’t usually give patients the option of having a long sling but he knew I wouldn’t have the strength to keep my arm up near my heart in a shorter sling). Next he placed a band around my stomach to measure my breathing rate which he kept loose due to the excruciating pain my ribs were in when they weren’t even being touched. The slightest soft touch on my ribs felt as if I was being stabbed! Finally, warming blankets were placed on me because I have bad circulation which can make the readings inaccurate so the warmth helps with circulation. The tests last about an hour and a half in total (I think) although it was all a blur and my memory is poor so I could be totally wrong! Knowing how sick I was, before we began the tests Dr Shah said to me, “Just do what you can and when you need to finish we will but the more you can do the more information we have so the more we can find out what has happened to you. I understand you won’t be able to do some of the tests though and this is okay.” There was no doubt about it that I was going to push to the absolute max to give them as much information as I could! I’d waited almost 10 years for someone to do tests that would actually find out what is wrong with me! I wasn’t going to give up now as I was SO close to the answers I’d been searching for!

The tests began with me lying lying down in a semi-upright position (about a 30 degree angle) for a few minutes (usually patients did this for 15 minutes but my heart couldn’t take more than a couple). He then lay me flat in a supine position which is definitely my favourite way to be! My body is much calmer when lying flat! After a few minutes lying down and recovering from the previous tilted position he lifted me up and I gave it my best attempt to sit up which was more of a slumped over state with him holding me up but back in January 2015 I couldn’t sit up without support at all. I lasted 1 of the 3 minutes expected which was impressive to say the least! I recovered from that before moving onto the next tests which were deep breathing exercises, which I couldn’t do very well because of the excruciating pain it caused me to expand my lungs (I had naturally begun to breathe into my throat instead of my lungs so my upper body didn’t move when I breathed). Next was a carotid massage sinus massage which involved applying pressure to the areas of the neck where arteries are located and then came the toughest part of the tests… usually patients sat on a low stool with no back support for 5 minutes but I couldn’t sit on a low stool so he lifted me from the bed onto a chair and held my back up for a couple of minutes. The next task was to stand up for 5 minutes so he lifted me up, holding my body weight up but I passed out within a few seconds but it was okay because Dr Shah was there to catch me! Dr Shah has recently told me that I passed out a fair few times during the tests and he was aware it was about to happen just by the reading on the screen but typically I don’t remember much! I then had to sit down again and exert pressure onto a squeezy thing (poor description I know I’m sorry my brain is tooooo foggy!), which didn’t go very well due to the muscle wastage in my arms & hands & my lack of strength. The last thing I had to do was blow into a tube for as long and as hard as I could… so it’s safe to say I didn’t manage all of these tests successfully but I tried by best and that is what counts!

This was the most physically demanding tests I have ever done but at the same time they were the most fascinating set of tests I have ever done! Heart rate, blood pressure, breathing rate, oxygen levels, carbon dioxide levels and abnormal brain activity were just a few things being measured and you could see absolutely EVERYTHING that was going wrong in my body on the screen (well I couldn’t but my parents could!). Whilst I had been doing the various tasks the lines and the graphs on the screen were going utterly bananas! Dr Shah nor my parents could believe what they were seeing. FINALLY after all these years I had REAL PHYSICAL PROOF I was sick. YOU COULD SEE ON A SCREEN I WAS ILL. You have no idea how long I had waited for this and what it is like to be sick for 10 FREAKING YEARS and for NO-ONE, NOT ONE SINGLE PERSON be able to find ANYTHING wrong with you on ONE SINGLE TEST!!!! All I wanted to do was cry with happiness but I was too sick for that. My body did’t produce enough energy for me to cry. YEP THAT’S NOT A JOKE. This was most definitely a HALLELUJAHHHH moment and little did we know that this was just the beginning! All I had to do now was return home, recover and recuperate from this crazily intense few weeks at Breakspear and sit tight (well lie down in my case) patiently waiting for all of my results!

*You can read more about the neurosciences department at Breakspear here.

**You can subscribe to my blog by entering your email on the home page and it will let you know when i’ve published a new post 🙂

 

Breakspear Medical Hospital

Hey everyone! I’m back with another chapter of my story and this time it’s about Breakspear Medical Hospital! You can read my previous post here to find out what happened to me prior to going to Breakspear and why I decided to go there. Instead of my usual descriptive, story-telling posts I’m going to be doing a series of more informative posts for people who are considering going to Breakspear and want to know more about it. Also for friends and family who are interested in what I’ve been doing for the last few months 🙂

First off, Breakspear is in a town called Hemel Hempstead in Hertfordshire, England. It is a PRIVATE hospital, not an NHS hospital. For those of you who aren’t in the UK, the NHS is our National Health Service; it is the publicly funded healthcare system for the UK. A few years ago you could get a referral from your GP and apply for special funding on the NHS to be a patient at Breakspear but this option is no longer available as the NHS have cut the funding (surprise, surprise). To get an appointment at Breakspear you simply have to call, make an appointment directly and pay privately (costs cannot be covered by private health insurance though). An initial consultation with a doctor costs £220 and typically takes up to 90 minutes. This is the amount of time you will be booked in for but you can use less of it if you don’t need it all (I think the price is a set rate though so less time doesn’t mean a cheaper appointment). You have to have an initial consultation before you can have any tests or treatment. There are 5 doctors and you can choose to book an appointment with a specific one or go with the nearest available appointment, which can be anything from a few days to a few weeks waiting (check this?). Many people go to Breakspear based on  word of mouth recommendations so they might choose a specific doctor based on those recommendations. I heard of Breakspear through a friend who told me a family friend of hers went there after ending up with an ME/CFS diagnosis on the NHS – Breakspear managed to find the causes of her symptoms, treat them and now she is back at the gym and working full time! This person saw Dr Jean Monro so I went with her as well, who I probably would have chosen anyway as she is the medical director and founder of Breakspear Medical Group and she has the most experience out of all the doctors considering she began her private practice back in 1982! Click here for information about the different doctors which may aid your decision.

*You can also read more about the different chronic and environmental illnesses Breakspear treat here.

When you have booked your initial consultation, you are sent various questionnaires regarding symptoms and medical history. Back in January 2016 (date on the form is a year out as I must have had brain fog at the time of completion), I was unable to grip a pen, let alone write due to muscle wastage/weakness and lack of energy, I also couldn’t read or absorb any information so my mum had to fill out most of mine for me. If it’s too difficult for you to fill out then you can enlist someone to help you and remember to pace and break the paperwork up into sections so you don’t over do it!

This is the medical questionnaire all new patients have to fill in:

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This is the symptom scoring chart all new patients have to fill in (you also fill this symptom chart out every 6 weeks so your progress can be measured):

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When we booked the appointment we told Breakspear that I already had ME/CFS and Fibromyalgia diagnosis’ on the NHS so I had to fill in these pain and fatigue forms as well:

 

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We also told Breakspear that I wanted to be tested for Lyme disease so I had to fill out this Lyme disease questionnaire and symptom checklist:

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Some of the other paperwork you have to fill in are: a supplement and medication form detailing what you are currently taking, a consent form, a patient record card indicating whether you want information to be sent to your GP or not (I chose the option for information to be sent to my GP). The final form you have to fill in is a payment form were you include the payee’s information along with card details from a Visa, MasterCard or Debit card. This is where the consultation and any future tests or treatment will be charged to.

Many people have asked me how I was able to go to Breakspear considering how sick I was… if you haven’t read my previous blog posts, here is the severity my health was at and my level of functional ability back in January 2016: It’s taken from AYME’s ME/CFS Functionality Ability Scale you can see here.

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Months prior to booking the appointment at Breakspear we enquired how they would manage with someone ‘as sick as me’ and we were told, “We are sorry but you are too sick for us to help you and you are too sick for us to facilitate your needs.” Oh if I had a pound for every time I have been told this over the years… I would have millions! A few months later and it was a completely different story; by January 2016 I was ‘too sick’ to NOT go to Breakspear. I no longer had a choice. You can read the reasons why in my pervious blog post here. Many people say they are ‘too sick’ to go to Breakspear due to the consequences it will have on them and their ill health. I completely understand this but for me the risk and the consequences of staying bedridden for any longer were much higher than the risk and consequences of me going to Breakspear. I had no idea what would happen to me if I went but I knew what was most likely to happen if I didn’t go. If I had stayed in that bed for a few more months then I probably wouldn’t be here now. Going to Breakspear was my only option. It’s as simple as that.

My family pushed for me to be moved to Breakspear by stretcher and to travel down in a private ambulance as it seemed the only feasible option to get me there but from previous experience travelling to hospitals via stretcher and ambulance, I knew that this would make me much more sick than having my family move me themselves. Extreme hyper-sensitivity to noise meant that the noise of the heavy ambulance doors slamming, the noise of the machines, the noise of the vehicle, the noise from the traffic and the outside world, the noise of the paramedics talking, my body would not be able to handle. Imagine standing next to the loudest speaker you can ever imagine whilst someone is screaming in your ear, that is how a whisper or a tweet of a bird outside my window sounded to me. My body didn’t register noise as a sound, it registered it as pain, the most excruciating pain you can imagine. Extreme sensitivities to chemicals, scents, perfume, aftershave, laundry detergent, make-up and leftover smoke the paramedics usually wore tightened my chest, leaving me, nausea, faint and difficulty with breathing. There was absolutely no way no way that I would be able to endure THREE HOURS of this for the length of the journey it would take to get to Breakspear. It was decided that instead, my step-dad, good old Roger, would carefully lift me from my bed, carry me downstairs and gently placed me into a ready-made bed in the front seat of the car. Good job I’m only small! (By the time we left for my appointment I was severely underweight, and weighed just six and a half stone.) I remember those few seconds I spent outside as clear as a blue sky, my eyes were closed but I could feel the wind on my face as it’s the first time I had been outside in about 9 months. I never could have imagined something so simple could have felt so good and little did I know that soon enough I would be sampling that wonderful feeling on a regular basis.

That first journey to Breakspear was with my mum who has had to give up work to be my full time carer as I needed 24 hour care. She’s become accustomed to my needs and was able to facilitate me exactly as I needed to minimise the impact the journey would have on my ill-health. Here are some tips for spoonie travelling: we pushed the front seat of the car as far back as possible so I was in a lying down position because if I was placed upright I would immediately pass out. We padded the seat out with duvets underneath me to reduce the pain that the impact of a moving car caused me. We filled out the leg space with pillows to raise my legs as having my legs bent was far too demanding on my body and also caused me to faint. There was no talking allowed; obviously no radio or music noise at all, as well as using earplugs and headphones to reduce the noise from the car and the outside world. An eye mask was needed to block out all light and ensure I had no visual stimulation (what I saw when I opened my eyes, the moving traffic, colours etc) because having my eyes open alone would have emptied my energy pot for the entire day. I remember a friend wishing me good luck for the journey and suggesting I look at the outside to distract myself from the pain I was in. My response to her was, “I can’t open my eyes. It makes me much more sick.” How is it possible that I had got to a point where I was too sick to even open my eyes?

Breakspear is a day clinic so depending on how far you have to travel and how well/sick you are, you may travel on the same day or stay at nearby hotels the night’s before and after the appointment. There are two Premier Inns and two Travelodges in Hemel Hempstead so patients usually stay in one of those. Most of the patients who travel from abroad stay for a period of a few months to have the initial consultation, testing and treatment so they rent apartments nearby. Breakspear also have a self-catering guest house which is well suited for those with chemical and electrical sensitivities, you can read more about it here. This would have been perfect for my needs but unfortunately the only toilet is up a flight of stairs which I clearly wasn’t able to manage when I first went to Breakspear so we stayed in a nearby hotel the night before and after my appointment. There is no way I could have had the appointment and travelled on the same day! In the past, my mum and I used to always share a room when we were travelling away from home but when you need 24 hours a day complete rest just to survive to the next day, no light, no noise, no talking, no communication and no movement within the room meant separate rooms were a necessity for my mother and I. An accessible room allowed me to be wheeled straight to the bed, lifted out and then wheeled to the toilet when I needed. I had a commode at home but that wasn’t the type of thing you wanted to take around in public with you!!! At this point my fluid intake was limited as I only had the energy to be moved from the bed to the toilet a couple of times a day. Yes I’m baring all in this post aren’t I! To sum this up, I highly recommend an accessible room to those who may benefit from it 🙂

*A couple of important things to be aware of before you go to Breakspear is that anyone entering the building isn’t allowed to wear anything scented or perfumed – you have to be completely SCENT FREE which includes washing clothes in scent free washing powder, wearing scent free deodorant, wearing scent free make up or no make-up at all because there are many chemically sensitive patients attending the clinic who react to just a small amount of a wide variety of smells. You can read more about becoming scent-free here. There are also no mobile phones or other electrical devices allowed inside Breakspear. Many of the patients have electrical sensitivity meaning that they react to electrical devices and it makes them much more sick. It is important to respect these rules because if they weren’t in place, lots of the patients who are electrically and chemically sensitive wouldn’t be able to attend Breakspear for testing and treatment.*

On the morning of my initial consultation when we arrived at Breakspear (my dad travelled down to meet us for the appointment), my parents lifted me out of the car into the wheelchair, which was padded with blankets and pillows so I could be as close to a lying down position as possible. I was wheeled a few metres from the car park to the entrance of the building and through the double doors, which my wheelchair fits through quite nicely! I have actually heard people complain that they have difficulty fitting their wheelchair through the door because usually only one of the double doors is open so if your wheelchair doesn’t fit through then all you have to do is ask at the reception desk and they will unlock it for you! As soon as the staff saw the state I was in they took me straight to be lifted into a bed on the ward. I was unable to lift my head, move my arms, move my legs, open my eyes, talk or communicate. They don’t usually offer beds out as most people go to the waiting area until their doctor is ready to see them. If you do need to go in a bed however, there are a few on the ward as well as private side rooms so if there are any free then they will allow you use them. Remember to ask and advocate for what you need! After a few minutes I was moved into a consultation room (again most people sit in a chair but if you can’t and this isn’t obvious (they aren’t mind readers!) then ask to lie down in the bed). The blinds were closed and the lights were turned out because despite the fact I was wearing sunglasses, after 5 months of not leaving my bedroom, having the blinds constantly closed, the lights off and living in almost pitch black, the mild light shining through the doctors window whilst I had sunglasses on and my eyes closed still felt as if I was staring, directly into the blinding sun. Extreme hyper-sensivity to light may even be an UNDERSTATEMENT.

During the consultation, due to my limitations, lack of strength and energy, at most I could whisper a few words. My impaired cognitive function left me unable to listen to people talk and absorb information so my parents did most of the talking and communicating for me. The majority of the consultation is spent going over the paperwork and discussing an in-depth detail of history and symptoms so the doctor can begin to build a picture of ‘what has gone wrong’. For me this went something like this… when Dr Monro asked my if I had ever experienced whiplash, I did have to reveal a car accident I’d been in at the age of 18 and had hidden from my parents for all these years! At the time I had been under strict orders from my mum not to leave the house because I was extremely sick (how ironic) but as she left the house for a few hours I decided to sneak out to my boyfriends, only to crash, sustain injuries to my neck, back and knees and then be too scared to tell anyone about it! My parents got a nice SURPRISEEEE during our consultation! The doctor also conducts a brief physical examination… as Dr Monro walked over to me she stated, “You are over breathing. You take too many breaths per minute and your breathing is erratic. I suspect this is alveolar hyperventilation, which will be causing respiratory alkalosis, a decreased pressure of CO2 in your arteries and an imbalance of acid in the blood which will be putting too much strain on your liver.” She then felt my pulse and said, “Your heartbeat is erratic and fluctuating too much.” She took one look at my face and explained, “You have lymphadenopathy. Your lymph glands under your chin and along your jawline are swollen. You will have chronic active viral infections.” We could never understand why I had a ballooned out, swollen face and about five chins (grose I know) when I was severely underweight?! She then went onto test my neuroglical sensations. She asked, “Can you feel this?” I responded, “Feel what?” I looked down and she was holding a vibrating piece of metal on my legs, my feet and my knees and I couldn’t feel a thing. I took my sunglasses off so she could shine light into my eyes where she found, “Your pupils don’t react to light. They are constantly widely dilated.” This along with me being unable to hear noise vibrations near my ears meant that I have developed severe dysautonomia. The autonomic (automatic) part of my nervous system is seriously malfunctioning. I was actually in shock. How had she been able to find all these things wrong with me in a matter of minutes when the NHS couldn’t find one thing in 10 years?!!?!? This is the initial plan that was created for me after the consultation:

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Once the consultation is over most patients go back to the waiting area where there are drinks you can help yourself to whilst you wait for test recommendations but I was moved into a private room on the side of the ward. Remember if you aren’t automatically moved to a bed and you want/need a bed then just ask if there are any free. Advocate for yourself and your needs! Dr Monro compiled a list of test recommendations based on my history, symptoms and physical examination, then a member of staff from the patient liaison team came to discuss the tests and costs with my parents. They even offered to talk outside of my room due to how the noise and movement within the room effects me (have you ever heard of medical staff so understanding, aware and accommodating??!?!) Usually the tests are put into two priorities – priority one and priority two. This obviously depends on how many tests are recommended to you because if it’s just a few they won’t be put into priorities. The amount of tests recommended to you really varies person to person, it can range from 1 or 2 to 10-15 like I had. You can see my test recommendations below (I will explain what the tests mean when I share my results). Some of the blood tests are done in Breakspear’s laboratory but most of the tests are sent to different laboratories around the world!

Priority One

  • Monro Fatigue Panel (blood test)
  • Haemotology & Biochemistry Profile with Electrolytes (blood test)
  • Immunology Profile (blood test)
  • Vitamin D (blood test)
  • UOA + GPL + TOX (urine sample)
  • Immunoserology of Lyme Panel B (blood test)
  • Viral Panel Comprehensive (blood test)
  • Coxsackie Abs (blood test)
  • QIFT Test (tests with the neurologist)

Priority Two

  • Lymphocyte Sensitivity Test (blood test)
  • IgG Comprehensive Food Panel (blood test)
  • Intestinal Flora Immunity + Candida (blood test)
  • Comprehensive Stool Analysis with Parasites X 3 (stool sample)
  • Total Mycotoxin Panel (urine sample)

I am extremely grateful to be in the fortunate position where we were able to say to Breakspear, ‘do whatever it takes’. Other people aren’t so fortunate so when choosing tests, many patients only choose priority one to begin with because of the costs, then if they are able to do priority two tests further down the line they do so whilst other patients choose the tests that they feel will be most beneficial to them. Remember you are the one who is ultimately in control of the decision making, Breakspear are there purely to guide you. Most patients have the blood drawn for the tests after their consultation so they don’t have to return to the hospital at a later date. This is what I did and I had 25 vials of blood taken in one go!!! Back in January my peripheral neuropathy (damage to the nerve cells that lie outside the brain which you can read more about here) meant that the slightest touch of a finger upon my skin or the brush of a piece of clothing left me flinching, screaming and crying in agony. My body registered touch as pain, the sharpest pain you can imagine, it was as if I was being stabbed. Two nurses either side of me did their best to keep me conscious. My body’s usual automatic response to any intrusion such as an injection or blood being taken by a needle was to black me out because it was in such a crisis mode it didn’t know how else to cope! The nurses then injected me with Vitamin D, in my bum! Going to Breakspear was the first time I had left the house in 9 months so they predicted my Vitamin D level would be be close to non-existant …  it felt strange because prior to being sick I found injections incredibly painful but it actually felt nice to have pain that was only temporary? Dr Monro passed by briefly before we left… she prescribed me Acyclovir, a broad spectrum anti-viral drug she wanted me to begin straight away as she highly suspected I have chronic active viral infections suppressing my immune system. At first we questioned whether we should wait for the comprehensive viral panel test results before I started treatment? What if I didn’t have any active viruses? Would this treatment then be harmful? We also wondered whether we should have waited for my vitamin D test result before having the injection? Oh well too late for that now! We were all in, there was no doubt about it. I remember lying there, unable to talk, unable to be awake, praying that this would be the answers I had so desperately longer for. There was absolutely no guarantee that any of this would help me and knowing that my life was in their hands was terrifying to say the least but it really was my last and my only chance of survival.

After our consultation Dr Monro wrote this letter to my doctor at my local GP surgery:

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Can you believe it? All that in one day! They wanted me to return for more tests and to begin treatment the very next day! And so the journey had begun, the journey I had longed for so many years before; the journey that would reveal the answers that I had been searching for, and the journey that would save the life that I had already mourned for.

  • I would like to say that my experience at Breakspear is not the same as that of other patients, everyone’s journey is unique and I am simply sharing my individual experience and opinion. Please feel free to ask any questions and I will try my best to answer them. The one thing I’m not willing to discuss is how much we have spent at Breakspear so far. I will discuss the costs of specific tests or treatment I’ve had but not overall costs so please respect this and bare it in mind. If there is anything in particular you would like me to write about in future posts then let me know!

***Don’t forget to subscribe to my blog by entering your email on the home page to receive notifications when I publish a new post 🙂

 

 

ME Awareness Month

I have been avoiding writing this post for a while now… I was scared. Frightened. Terrified of the truth. The reality of what had happened to me… it was all too much. The extent of the damage within my body… I could not handle. I was not able to accept nor admit that my time was running out. The actuality of the pathway I was on, the pathway that was leading me to the end of my life journey. The pathway I so narrowly escaped. I am ready now to finally share it, once and for all.

July 2015: I had just been discharged from my local hospital after being an inpatient on a stroke ward. During my time there I had undergone investigative tests to try and find the root cause of my health problems. The NHS suspected bone cancer, multiple sclerosis, tuberculosis, a stroke, lupus, meningitis and brain damage. On admission to the hospital I experienced paralysis of the arms and legs, I had no feeling in them at all and reflex tests confirmed it when my hands arms legs and feet would not move. I had been told that I wouldn’t be leaving the hospital until I had learnt to at least sit, stand, walk and talk again so we were preparing for a long-term inpatient stay. As the time went by it became ever more clear that the NHS could not and would not continue to try and find my cause. I questioned, “What am I supposed to do now?! Spend the rest of my life in bed?!” I was no better than when I had entered the hospital and in fact I was probably much worse. “How am I supposed to get nutrition? I’m unable to eat, unable to chew!” The stroke consultant I was under told me that I would have to be tube fed & there was nothing that he nor the hospital could do to help me as they didn’t have the ability to understand what was going on deep inside. I was deemed a medical mystery, a patient too complex to understand so ultimately, I was discharged – unable to walk, unable talk, unable to stand, unable to sit up, unable to lift my own head off the pillow. My family lifted me out of the hospital bed and into the wheelchair, lifted me from the wheelchair into the car and carried me from the car back to my bed, where I remained for another 7 months. I was stuck with the three diagnosis/labels that I already had before I’d entered the hospital:

  1. Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) also known as Systematic Exertion Intolerance Disease (SEID).
  2. Fibromyalgia (Fibro/FM) also known as Fibromyalgia Syndrome (FMS)
  3. Multiple Chemical Sensitivity (MCS)

These diagnosis’ are based on symptoms only; there are no diagnostic tests to come to these conclusions. Everyone who has an ME/CFS diagnosis will have gone to their GP at some point complaining of an overwhelming fatigue/exhaustion that is DEBILITATING – meaning that it affects their every day life, preventing them from being able to undertake daily activities. The exhaustion is not comparable to the type of exhaustion healthy people experience as it’s PERSISTENT and CHRONIC – meaning it’s NOT relieved by any amount of sleep or rest. It NEVER goes away! After being made aware of this ongoing debilitating energy problem, the GP will run tests (usually a combination of blood & urine) to try and find the cause of the patient’s symptoms. The patient may then be referred to a specialist such as an immunologist, rheumatologist or neurologist for further investigation but ultimately when a cause cannot be found with the basic tests the NHS offers (yes even their investigative tests are basic), an ME/CFS diagnosis is made. As well as the ‘exhaustion’ experienced, the patient has to have just one other symptom that lasts for 4 months or more in an adult & 3 months or more in a child for an ME/CFS diagnosis to be given. These are the other symptoms people with ME/CFS may have:

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Similar rules apply to diagnosing Fibromyalgia. The main symptom is widespread pain all over the body but as well as widespread pain people with Fibromyalgia may also experience:

fibro_symptoms

If you go to your GP complaining of these symptoms with the predominant symptoms being pain, they will routinely do tests to identify a cause & when their tests do not show anything you may also be referred to a specialist, usually a rheumatologist. If they cannot find the cause of your symptoms then a diagnosis of Fibromyalgia is given. See my previous blog post here for more info about Multiple Chemical Sensitivity.

August 2015: Not long after I was discharged from hospital, I remember a friend asking me, “Were you in hospital because you were extra exhausted?” I was in shock; totally speechless and completely frustrated. No actually… I wasn’t frustrated, I was angry. I was so ****** angry! That’s when I realised… this is what people think! They actually believe I’m tired, i’m fatigued and i’m suffering with exhaustion! I know it makes sense considering the name of one of one of my diagnosis’ is Chronic FATIGUE Syndrome but fatigue is just one of my 30+ constant chronic symptoms I experience every second of every hour of every day of every month of every year for the last 10 years. For once in my life I was actually speechless. People actually believe I’m fatigued. I’m not fatigued. I’m not tired. I’m not exhausted. I’m sick! I don’t even remember what it feels like to feel exhaustion, let alone feeling fatigued or tired. Those years were long gone… That moment in time sparked something within me. It was when I realised that something had to change. I could not and would not accept what went down during my hospital inpatient stay. I would not take no for an answer. I would not spend the rest of my life bedridden with a diagnosis of symptoms based around the word ‘fatigue’. People are not bedridden because they are fatigued! I was a prisoner in my own home and I did not know how much longer I could go on living my life like this. That’s when I decided, ‘If the NHS are not going to find out what’s wrong with me then I will find out myself!’ I had no idea how I would do this due to the severity of my ill-health but I WOULD find a way. A way out of this living hell I endured day in, day out, 24 hours a day, 7 days a week, 365 days a year. Oh and by the way, me being speechless didn’t last long and the response to my friend’s question went something like this:

Autumn 2015: There isn’t much to tell about Autumn to be honest. Those months I spent bedridden felt like years. I managed to get dressed twice that Autumn. Once for my birthday and once for Halloween.

These photographs show a snapshot of a specific moment in time. To the outside world they represent the truth but those photos are not the truth. They are a lie. They are a front to the world and a mask of the reality of what goes on behind closed doors. I know I said I got dressed that Autumn, but I didn’t. Someone else dressed me. Someone else spent 8 hours dressing me. Between each item of clothing, I was left bedridden for an hour. Those photos show me sitting up, holding my head up high but they don’t show that the second the camera finishes clicking away I collapse in agony, unable to hold my own body weight up for more than a few seconds. The way I’m sitting is a lie. They don’t show my head as heavy as a bowling ball as if it’s being held up by a twig, rolling, falling to the side, too heavy, too big for my muscle wasted neck to support. They don’t show me being lifted, carried, cradled for 2 metres from my bed into the wheelchair only to be carried back just a few seconds later as soon as the camera turns away. They are a lie. What a difference clothing, make-up, a smile and a brave face can make. They were my shield, my armour and my protection from the world.

I fooled you. I fooled all of you. I even fooled myself. To be honest I was afraid, afraid of sharing the truth. Fearful that people would judge me because of how sick I looked. Little did I know that hiding the truth meant people would judge me even more. It led to confusion and disbelief with comments such as, “Well you don’t look sick!” and, “How can you be sick when you look so good?!” I didn’t mind the comments though. They made me feel good about myself. I was doing a good job at lying to the world. I was doing an even better job of lying to myself. I saw the look on people’s faces when they entered my room. Those close to me tried to hold back the tears at the state I was in. At times that wasn’t possible and they cried for me, cried at me, cried as they left and walked out the door. I thought I would scare people away if they witnessed the truth and that others would dislike me for who I had become. This wasn’t me. It was disease. Disease which had taken over my body, my life and my soul. I’d already lost so many people along the way. I just couldn’t bare to lose anymore. Many former friends had vanished, disappeared as the length of time I’ve been sick has gone on, whilst other friendships have flourished, prospered and thrived during these dark times. The ones you least expect to stay are the ones who surprise you and stay and the ones you most expect to be there for you the most have silently said their goodbyes.

I am grateful now to know the true meaning of friendship. Friends are those who lie next to me in silence when I’m unable to move, unable to talk. They are the friends who allow me to be comforted with their silent presence because I so terribly do not want to be alone. They are the friends who allow me to cry, not touching or hugging me because of the pain it causes to be touched. They don’t judge me. They don’t offer me their advice or their opinion. They are simply there for me and the best thing of all, are the most important and the most simple words they utter, “Emma, I understand.” They are the friends who text me letting me know that I’m in their thoughts whilst not expecting nor wanting me to spend my energy on a reply. They are the friends who ring my parents for updates on my situation, offering their help and their assistance, asking if there is anything at all they can do to lend a helping hand. They are the friends who offer to take care of me for the day or for the night so my mum can have a break from providing 24/7 care. Equally they are the friends who understand that being here for me involves them not being here for me, physically I mean, as I need time and space. They are the ones who say, “Even if it takes another year, another two for me to visit or for us to meet again, I will still be here for you. No matter how long it takes.” They know a friendship with a sick person, like me, is an uncertain and unreliable one to say the least. It’s been two years now being bedridden and many of those friends are still here, waiting for the day we meet again. I only hope that one day I will break away from disease and will be able to return the gift of friendship to those who matter the most. Sadly, I know of others who aren’t as lucky as me; they have lost friends; they have lost family; they have lost them all. So spare a thought, a text, an email or a card for those who you know who are sick, who are struggling and who have been left all alone.

December 2015: Let’s get back to the story shall we… where were we? Christmas was almost here and our extended family had arrived for our annual Christmas celebration. My uncle transferred me from my bed to the downstairs sofa. I guess I’m like a baby who can’t do anything for itself (at times my 2 year old and 4 year old nieces helped my mum to take care of me). So on that day I lay down for a couple of hours amongst the family; my feeble attempt at joining in with the Christmas festivities. Those couple of hours were the only celebrating I did that Christmas, it took its toll and after those couple of hours my body had nothing else left to give.

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Can you spot me? My neck muscle is too wasted to hold my head up so my uncle held me up for a few seconds… I thought the camera had finished clicking (but it hadn’t) so I fell back down.

 

From reading my previous blog posts, you ought to know by now what was destined to come next?! Here we go then… In typical ME fashion… following those couple of hours I spent lying on a sofa, a downward spiral occurred. However, this one was about to trump them all. As the years went by, each significant deterioration was BIGGER and more SIGNIFICANT than the last. Almost as if ME was trying to show off and it had to out do itself every single time! 1 week later, 2 weeks later, 3 weeks later and the downward spiral continued… breathing became more and more difficult as the days went by. There was someone above me, pushing me down under the water… forcing me, trapping me, drowning me as the air was quickly running out. Whoever it was released me, allowing me to fight my way up, choking for a single breath. I gasped, grabbed and clutched at the air, begging for relief, pleading for it to stop. Only there was no-one there was they, it was just me, alone, struggling to breath. My breath, so shallow, so rapid, was beyond anything I’d experienced before. The air entered my throat and then it stopped, disappeared, vanished, not making it all the way into my lungs. My lungs were flat and collapsing, neither inflating or deflating. What were we to do? Call my GP? No. She wouldn’t do anything. She never did. Call an ambulance? No. They wouldn’t do anything. They never did. Go to A&E ourselves? No they wouldn’t do anything. They never did. Days later and my new symptoms continued to progress. I couldn’t keep up with the pain, shooting 100 miles an hour around my chest like jolting lightning bolts, as if fireworks had exploded inside my lungs. Tingling spread like wild-fire throughout my body, bombs exploding within me with every second that went by. The bombs ensured they destroyed whatever was in their way so numbness followed, taking over and leaving me with no feeling or sensation at all. The next thing I knew someone was stamping on me, jumping up and down, again and again, crushing, snapping and breaking every rib that was in its way. Whoever this was beat me with a baseball bat until I was left black and blue. Screaming out in distress, please stop!!! Why won’t you stop!!! Please me leave me alone!!! There was no one there though was there, just me, all alone. My muscle tremors were usually confined to my limbs but a few days later and they were no longer. They spread to the muscles lining my lungs causing my upper body to repeatedly jerk, shake and convulse over and over again. I feared a seizure was on its way. Something was living inside of me, a monster, an alien, ripping me apart from the inside out, tearing my body completely to shreds. The pain was beyond anything I could ever have possibly imagined and my body was completely out of control. There was no monster though was there inside of me; it was just me and my body, all on our own. My mum stayed by my side every step of the way, watching over me day in day out; she spent her nights in a bed next to me, tears streaming down her face, fearing what would happen to me if she left me on my own. There was no where or no one to turn to. There was no help to be found. Nothing. Absolutely nothing. It had been 8 years since I first got sick and it had been 8 years we had been left all alone. How many more years would I survive this way? How many more months? How many more days?

So who did we call??? My friend. My friend who is a medical student because by this point in time I trusted her more than I trusted the NHS. She had been trying to convince me for days to call an ambulance or to call my GP at least but she knows that for me that is the ultimate last resort. She drove out to the countryside where I reside at 2am on a Saturday night and when she saw the state I was in she wouldn’t take no for an answer. She phoned for an ambulance who arrived shortly after and guess what they found???? Absolutely nothing! Absolutely nothing at all!!! Well what a surprise that was! They suggested taking me in for further testing but something inside of me held me back… I think I have no worked out what that was…

I couldn’t do it. It was as simple as that. There would be no point going into hospital, I just knew it. What more tests could the NHS possibly do that they hadn’t done already? It had been 8 years and the NHS tests had found nothing wrong with me! Not one single thing so what would be different this time around? It wasn’t just about the tests though was it, it was about the joy and the hope that entering a hospital filled me with. The hope that there was a possibility they would find my cause. The hope for answers and the hope for an explanation of my failing body. Over the last 8 years hundreds of doctors, specialists, consultants and GPS, have filled me with hope only to snatch it a way as quickly they handed it to me, telling me that I cannot possibly be helped and leaving me with nothing at all. 8 years is a damn long time! I couldn’t do it to myself anymore, I just couldn’t put myself through it any longer. I had had enough and there was absolutely no way in hell I would spend my Christmas on another stroke ward. Not long after the paramedics left, my friend lifted me out of my bed to carry me a couple of metres to the toilet. She looked at me as she hoisted me off the toilet and said something to me I had wanted to hear since this journey had begun, “This is not fatigue. This is not exhaustion. You are not exhausted. You are seriously sick. Something needs to change and something needs to be done.” That special friend later went on to choose ME/CFS as the subject of her 4th year medical student project. She taught her entire class about ME/CFS and her tutor who is a practicing GP said that she will never treat her patients with ME/CFS the same again. I would like to take this moment to say thank you to my friend and thank you to every single individual who fights our corner for us when we are too sick to advocate for ourselves. I am simply a tiny part of a much bigger picture of people who are too sick to fight for themselves so please do what you can, I’m telling you now that one tiny step you make will help lead the way to a shift in society we really do desperately deserve. No matter how big or how small, every step we make, we are one step closer to making a great change. Change so that there is a hope even if it’s not in our lifetime, there is hope that future generations will not have to suffer just like so many of us have.

January 2016: The last few years haven’t felt real to be honest. I mean physically my body has been here but inside I haven’t really been present. My body and my brain have been switched off and I know that in a strange way I’ve almost been MIA. I feel like I’ve been living in an alternate reality, most of it is a blur, a hallucination or a hazy fog as if I’ve been asleep for two years and my life is me acting out some sort of bizarre dream. I had been functioning at 0% on the CFS Functional Ability Scale for a while now (see below) … we started to wonder, what would happen if I went below 0%? Was that even possible? I’d been on a constant decline for 8 years so why would it stop now? How long could i sustain living at 0%?

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I vaguely remember a brief phone call with a friend, a sick friend because I always fear a healthy friend or family member will never understand. I spoke softly with a whisper, my voice weak, incoherent, almost unrecognisable but Taylor had only known me since I was sick so this is the me she knew and this was the me I felt I was allowed to be. This is probably the most honest conversation I’ve ever had, “I know this sounds crazy Taylor… but… but… there is something inside of me. There is something living inside of me and I can actually feel it moving around. I can feel it taking over different parts of my body and gaining control. It is a parasite and I am it’s host. I’ve spent the last two years searching for answers and I think I can understand something of what’s gone wrong. I still don’t know what is causing it though Taylor I still don’t know my cause. Whatever this is, last month it took over my lungs and now Taylor, it’s taking over my heart. I can feel it Taylor. I can actually feel it infecting and taking over my heart. I have nothing left for it to take Taylor. This is it Taylor. I’m dying. I am dying Taylor. I am dying.” I never thought those words would leave my mouth but they did. That one time and that one time only. I don’t know how to tell you how I knew, all I can say is when you know you know. Her response was, “I know Em, I know.”

Days later and my usual chronic cardiac symptoms – pain in the chest wall, heart palpitations, pain and tenderness when touched on the chest, shortness of breath, a pressure on the chest as if it’s being crushed, shakiness, blurred vision, dizziness, light-headedness and blackouts were becoming ever more severe than usual so we decided to monitor my heart rate for a few days. We phoned my GP surgery to let them know I had a resting heart rate that was consistently at 160 BPM. A normal resting heart rate is anywhere between 60-100 BPM. The GP we spoke to told me that I would have to be admitted to hospital ASAP. My regular GP was sent out to see me with the intention of admitting me to hospital. Did she actually do that though? Of course she didn’t! What she did do is give me three new labels to slap onto my symptoms and add to my current diagnosis’:

  1. Costochondritis – inflammation of the cartilage around the heart that joins your ribs to your breast bone (sternum)
  2. Postural Orthostatic Tachycardia Syndrome (POTS) – a consistent abnormal increase in heart rate when going from a lying down position to a sitting and standing position. The increase needs to be above 40bpm and over 120bpm when sitting or standing for a POTS diagnosis. When a healthy persons stands up, blood vessels contract and heart rate increases slightly to maintain blood supply to the heart and brain. In POTS, this automatic adjustment to an upright posture is not working correctly because there is a dysfunction in the autonomic nervous system, resulting in excessive heart rate and reduced blood supply to the brain which causes a group of specific symptoms. See here for more information.
  3. Postural Orthostatic Hypotension – a drop in blood pressure when going from a lying or sitting position to a standing position which causes a group of specific symptoms. See here for more information.

I was SO sick of accumulating labels for my symptoms. Everyone accounted for by the NHS was absolutely pointless. All I wanted was someone to tell me why this is happening to me! My GP went on to explain, “Your body has forgotten what to do. It has forgotten how to work properly. Your organs are slowing down. These symptoms are because your heart and lungs have begun to shut down. This is what happens to people when they reach the end of their life. What happens to 80 and 90 year olds is happening to you. ”

Then she got up off the stool she perched on beside my bed, she turned around and she walked right out the door and she never looked back…

I would not be left to die in this bed for any longer. Mum phoned for another GP who came out to see me straight away. This GP was absolutely horrified at the state I was in. She could not believe that no-one, not a single GP, consultant, specialist, physiotherapist or the likes had been out to see me in the last 6 months. No intervention whatsoever. She was gobsmacked that I had been left like this. She was lost for words, in total shock. She said that she would be coming out to see me each week but unfortunately she also did not know how to help me. She justified it with, “I don’t know how to help you. The NHS cannot help you. We are under strict rules and regulations to follow certain guidelines and protocols. Your complex case does not fit in within the guidelines. You need to go private and you need to do it now. You don’t have the time to wait any longer.”

At this moment my darkest thoughts were confirmed. Whatever this is, it is killing me.

The diagnosis ‘Chronic Fatigue Syndrome’ had fooled me. It had blinded me and my family for the last 10 years. By now we were left with no other options at all… We knew that if I didn’t go private immediately then there was little chance of a better future ahead. There was no guarantee that a future even existed at all. You are probably wondering as people often do, why didn’t we go private any sooner? The gods honest truth is that we had already gone private… I’ve seen specialists in immunology and neurology who diagnosed me with ME/CFS, Fibromyalgia and Multiple Chemical Sensitivity but even though they are both private, they also work within the same guidelines that the NHS uses (NICE Guidelines) so they weren’t any different or any better to the NHS as a matter of fact. We had trusted the NHS. We had trusted them entirely and we had trusted that my life was safe in their hands. We trusted that they could do their job to keep me alive and breathing. We are brought up in a society where we are taught that they know it all. We are raised to believe they hold the key to the answers and that they can do no wrong because they are trained above and beyond anything we can comprehend at all. We were wrong to have that blind faith and only hindsight has told us that. And so it was our time to leave the NHS… we left it behind as we set out on a new journey of discovery with a quest for answers, explanations and ultimately for solutions as well as resolutions. Little did we know at the start of our new journey, what we were about to discover and realise now is that they; the NHS doctors, do not know it all. This new pathway we were on meant that we were about to uncover the truth, once and for all.

PS. Please share this post to help raise awareness and understanding these complex chronic illnesses so desperately need!

 

 

Invisible Illnesses

I began to write this blog as a place for myself to figure out what went wrong in my body, how on earth did I end up like this? It was a safe place for me to chronologically write out my journey to discover the missing pieces of the puzzle – perhaps if I could find out how this happened I could find a way to fix it?  It was also a place where I could express myself freely in order to process what has happened to me. I guess it was self-indulgent and now I’ve figured those things out I’m satisfied, I no longer seek to learn more about myself and my journey via my blog. This leads me to a place where I often find myself thinking, that’s enough now, I won’t write anymore, I’m content with leaving my blog as it is. That’s partially because I also have to consider is it worth it? Remember guys I have a certain amount of limited energy because thats’s the way ME works, the body doesn’t produce energy as it should. Each decision we make is based on energy, energy controls our entire existence and every single choice we make. Energy is like money to us, it’s a currency and it has value so we have to ensure we spend it wisely. That’s why I wonder is it worth it? What do I gain from this energy spent? Each time I receive texts, emails, phone calls (most of the time I don’t have the energy to answer the phone so these end up being answerphone messages) and letters from people all over the world, most who I’ve never met and probably will never meet, it gives me the strength and the motivation to share another chapter of my story. As we move forward in time each post becomes more and more personal and that can be quite scary, intimidating almost to put out there for the world to see but with each person it could possibly help, it gives me the courage to keep going, to keep writing and sharing my story.

So, where were we up to guys???

September 2014: I had just spent 7 months abroad in the wonderful world of Oz… Australia! I’d been on a university exchange for part of my second year at uni and saw a significant deterioration in my health during the time I was there after spending the previous 6 years ever so gradually deteriorating, although the rate of decline in Australia had drastically increased. By the time I left the lovely land of Oz, I was down to functioning at around 30% percent and was edging my way into the ‘Severe ME’ category. Whilst I was abroad, I’d spent five months interning at the online fashion platform FashionizerTV who covered the latest fashion shows from across the globe and now London Fashion Week was approaching, it was my job to be the fashion correspondent for FashionizerTV. Up until this point, my Australian boss Sophie had no idea whatsoever of my ill-health as I had been doing most of the work from my bed (literally) in Sydney whereas she was based in Melbourne so I decided it would be for the best to forewarn her of my condition and recent deterioration ahead of our jam packed fashion week schedule. As fashion week arrived, I was bestowed the honour of a media pass for the entire grounds of Somerset House, which meant I could attend any and every show at the London Fashion Week location and of course my overly optimistic self devoted every ounce of energy I possibly could to doing just that! After each show I would scramble back to the media room where fellow fashion nerds were desperately rushing to upload their images & videos to social media, blogs and websites in an attempt to be the first media outlet to report on the latest show. I loved the hustle and bustle, the fast paced life; it’s what I lived for!

My time at fashion week was devastatingly short-lived (in typical ME fashion) as after a mere few days or a few hours (I can’t quite remember as the entire week resembles a hazy blur), I was mid-show, phone out, wildly photographing each covetable look at either the Eudon Choi or Jean-Pierre Braganza SS15 show (memory loss is a symptom of ME) when all of a sudden something hit me. Oh dear lord I was about to pass out mid fashion show, this wasn’t happening, it couldn’t be, it wasn’t possible! The only thing I knew is that I needed to get out of there, IMMEDIATELY, and somehow make my way back home to the safety of my beloved bed. I stopped at about five coffee shops on the way home, collapsing every few minutes along the way, with each second that went by my body was shutting down even further; and the very next day it decided to give up on me once and for all. It was the final straw because not only did my body physically shut down but my brain shut down too; within an hour of waking I wasn’t even able to use the images, videos and information sent to me to continue working from my bed. In a desperate attempt to not let the team down I offered the job to my friend Leila who had a similar sort of fashion background to me. Within a few hours she was in London and I handed her my London Fashion Week job on a plate. If you know me personally, you know how much it would have taken for me to give up such an opportunity (there are no words to describe how this felt). I then had to spend another five days in bed in order to just make the two hour journey home.

October 2014: That was it. My body was done. It was done trying, it was done fighting. It just couldn’t do it anymore (at the level of function I was expecting from my body anyway). I was due to start back at University for the Creative Arts to complete my third and final year of my Fashion Promotion degree but realistically that wasn’t going to happen was it. After fashion week I was down to functioning at probably a little under 30% and I was well and truly inside the ‘Severe ME’ category. That was it. It was decided and ME had decided for me – I would take one year off from university to have some much needed rest and respite and during this time I would simply get better and be well enough to go back to university to complete my degree. It actually makes me laugh that I thought this; oh how naive I was.

My body was still reeling from what I’d subjected it to during fashion week so that as my birthday arrived I decided to push myself (oh how I despise those words) to leave the house for a few hours to celebrate with my family, with an agreement that they would park as close as possible to the restaurant’s entrance to minimise the walking distance for me,  (I think it must have slipped their mind or they didn’t understand how much the difference of walking a few metres was beginning to mean to me). I wasn’t getting off the hook that easily though as both my friends and my dad’s side of the family wanted to celebrate too! ‘Oh no I really can’t do this, I’m not well enough, leaving the house for a couple of hours once a week was already a massive push. I can’t do anything else on top of that!’ It didn’t take much persuasion though so the very next day I celebrated with my friends and again the day after that with the rest of my family. I needed to grow a back bone really didn’t I?! These situations I often found myself in were clouded by emotions such as, guilt, fear, disappointment, loss, sadness and also pressure so sometimes it was easier to say yes and suffer the physical torment afterwards than to have to deal with the emotional torment attached to saying no. This was a real inner struggle for me and something I’ve learnt along the way is that saying no takes practice, it takes time and it takes an unruly amount of self-discipline. For how long would I continue saying yes until my health finally became my priority?

Don’t get me wrong I’m not looking back on these memories with self pity, that couldn’t be further from the truth. I look back on these memories and I see the good, the enjoyment, everything I’ve achieved and done with my life despite facing chronic illness. I only share my story in order to educate, to help people understand because an understanding really does make the world of difference to people who spend their lives fighting the ongoing, turbulent battle of being chronically sick.

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Beth’s 21st Birthday Party with friends from my primary school

December 2014:

FLUCTUATING – this is a key word that describes ME. Our symptoms fluctuate in severity throughout the course of each day, each week, each month, each year and for some people an entire lifetime. This explains why sometimes we are able to do things whilst other times we’re not – I often encounter this query with ‘healthy’ people and the answer is as simple as ME is a fluctuating illness. Looking back to December 2014, I remember my best friend, Rachel and I took a trip to Birmingham’s German Christmas market to get ourselves into the festive feeling. To both of our surprise, the day didn’t go as planned, and not in typical ME fashion – I was able to both stand and walk for much longer than we had anticipated meaning we could spend more time shopping for some wonderful winter delights! I guess you would call this one of my ‘good’ days, still bad in relation to back when I was deemed ‘healthy’ but ‘good’ for me and an example of how unpredictable the fluctuations can be.

 

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Christmas Crepes with Rach

 

POST EXTERTION MALAISE – The predominant symptom of ME is severe constant exhaustion that isn’t relieved by any amount of sleep or rest and secondary is the malaise (these are the 25+ other symptoms of ME) following any sort of activity/when any amount of energy is spent. You’re learning a lot of things about ME today aren’t you! The full extent of symptoms only becomes apparent around 24 to 72 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity and if this is the case then it’s even longer). This is what makes ME so difficult to predict because we often have stable symptoms during an activity, meaning they’re present but not worsening during the activity, and then they only begin to worsen when your energy pot is already empty and you’ve already gone into your ‘debt’ or ‘minus’ energy. To sum it up you’ve already over done it before your symptoms start to worsen to warn you you’ve over done it. This often means it’s too late. These symptoms can then continue to worsen for days, weeks and sometimes months until they stabilise and then ever so slowly you begin to improve. This varies enormously depending on the severity someone has ME and how much you’ve over done it or gone into ‘debt’ energy so everyone’s recovery periods for different activities is different. This recovery period is also known as ‘the crash’ or ‘payback’. Does that make sense? Fellow ME folk comment with tips of how to simplify this if you can!

January 2015: By not allowing myself to recover from almost every activity I’d done in the last seven years meant that as we entered 2015 I was down to functioning at around 25%. An example of this level of functional ability is that I was now conscious of the large amount of energy opening and closing my bathroom door and lifting my arm above my head to flip a light switch was draining out of my energy pot.

Around this time I began attending the CFS/ME Service at my local NHS hospital (this was once a week and the only time I left the house in January). I assumed that this meant I would get treatment for my ‘ME’ and I would be on the road to recovery in no time. When my medical team of occupational therapists and physiotherapists told me otherwise my eyes finally began to open up to the reality of what an ‘ME’ diagnosis really meant. Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a group of symptoms (that’s what the syndrome part means) with an unknown cause meaning there is no cure and no treatment. What we do know from biomedical research into ME is that there are physical abnormalities in the immune system, the nervous system, and the energy production/muscle system. This means that ME doesn’t effect just one bodily system, it affects many systems hence why finding the cause is so damn difficult! It’s thought that there isn’t a singular cause but an accumulation of different causes which can be compared to finding a needle in a haystack. ME is known as a ‘serious, chronic, complex, systematic disease that can profoundly affect the lives of patients’ (taken from the prestigious US Institute of Medicine report Feb 2015). Prior to attending the CFS/ME Service I knew none of this so upon learning this I realised that it was unlikely I would be well enough to be able to return to university in 9 months time and it also meant that I would need to start using a wheelchair on a permanent basis so my small pot of energy was spent on more essential things (yes walking was no longer considered essential).

I began to realise how complex this illness really is and that the only thing that the NHS could offer to help me was ‘symptom management’. This was to help me live my life as best as I could with a chronic illness and by chronic I mean long-term and ‘it’s not going to go away’! Healthy people tend to not understand this part. I felt like I had changed my life so much already to accommodate this illness already and I thought it was enough but I guess it wasn’t so I chose to take on this illness as if it was a subject and I was studying a degree in ME. I spent the next year learning everything I possibly could to aid my situation. After all knowledge is power!

Throughout my research something I became aware of was the CFS Functional Ability Scale and it made me realise how sick I had actually become (I was totally unaware of the different severities of ME until I started at my local CFS/ME clinic). I use a combination of Dr Myhill’s Scale (she is one of the leading researchers & specialist doctors of ME in the UK) & AYME’s Scale (the Association of Young People people with ME is one of the leading charities for ME in the UK). You can see the scales below… They can be used to identify the severity of ME & whether people are improving, stabilising or deteriorating. This is how I’ve been able to go back to the beginning of my ME journey and chronologically map out my gradual deterioration.

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Lets fast forward a few months to May 2015: On May 12th 2015 I held an ‘Afternoon Tea for ME’ as part of international ME Awareness Day and ME Awareness Week. I am very proud to say that we raised a total of around £500 for a charity called The ME Association.

 

For about a year or so I’d been experiencing a strange new symptom/feeling and the only way I can describe it is that it feels like I have been hit by a bus. Imagine being hit by a bus and what you can imagine is how I feel. It’s sort of like a dull severe constant ache as if I have intense bruising and soreness throughout my entire body. I’d also noticed specific tender points where if pressure is applied to them it causes severe sharp pain so I’d had to give up showering (don’t freak out – I bathed instead) because when the pressure of the water hit the tender points in my neck and shoulders it had become unbearable. On the day I held the afternoon tea I developed a new type of pain, a strange burning sensation that rapidly spread throughout my legs, it felt as if my leg muscles were actually on fire. It seemed to be that there was a pattern each time I ‘overdid it’ I seemed to develop a new sort of pain and once I acquired that pain, it never went away. I now have a variety of over 10 different types of pain present at all times but fluctuating in severity so when people ask me – “how’s your pain?” I reply with, “which one?”

June 2015: The movie ‘Cake’ starring Jennifer Aniston is one of my favourite movies of all time; it’s not often I can relate to a character in a film as well as I can with Claire (Jennifer Aniston), the protagonist of the movie Cake, who suffers from chronic pain. She captures a heartbreakingly true portrait of the trials, tribulations and limitations of a life lived in chronic pain. Aniston portrays the pain with such conviction that I feel her pain, I understand her pain and have empathy for the every day battles she faces both physically and emotionally. Cake shines a much needed spotlight 0f the true essence of suffering experienced by a person with chronic pain and successfully translates it from an invisible disease to a visible one for the audience to witness.

 

 

Not long after watching this movie I had a consultation with Professor Powell, a private specialist in clinical immunology and allergy who had diagnosed me with ME 3 years previously. On this occasion he went on to diagnose me with Fibromyalgia, a chronic pain condition and another condition called Multiple Chemical Sensitivity, both in addition to my ME diagnosis. Fibromyalgia (FM) is a chronic long-term musculoskeletal condition that causes wide-spread constant pain throughout the entire body, including in the nerves, muscles, tendons and ligaments every second I’m awake. It’s also known as Fibromyalgia Syndrome (FMS) or Fibro for short.

Multiple Chemical Sensitivity (MCS) is a chronic condition where low-level chemical exposure produces varied numerous symptoms. The chemicals are often common ones that enter the body either through inhalation, ingestion or through the skin, such as, perfumes, flowers, paint, toiletries, hair & make-up products, cleaning products, certain foods, petrol fumes, air pollution, hair-dye, medication, smoke, synthetic fabrics and pesticides. Any chemical that enters the body has to be ‘detoxified’ (broken down) and eliminated but in MCS there’s an alteration in the bodies ability to detoxify and get rid of chemicals, combined with an increased sensitivity to the effects of these chemicals on the body. The chemical load is simply too much for the body to handle/tolerate so I have to avoid these chemicals as much as possible because they make me even more sick than I already am.

July 2015: It had been 10 months since I’d returned home from Australia and it had been 10 months of continuous deterioration. This deterioration had been my usual steady and gradual decline until July 2015 when something different happened; I’m not entirely sure what it was but it was something different that’s for sure. One fine Summer’s day I made my monthly trip out of the house for a few hours to enjoy the sunshine only to find that when I returned home my body, my life and my health would quite frankly, never be the same again. Those few hours had taken me one step too far over the edge, it felt as if I’d walked off a cliff or I’d been thrown into a deep dark black hole. I was falling and falling, waiting for it to stop, to come to an end but it never did and like a never ending rabbit hole I watched my body, my life and my health spiral downwards out of control and free-fall infront of my very own eyes.

By the third week of extreme rapid decline, my functional ability had reached an all time low and I was well and truly inside the ‘very severe’ ME category. I was down to functioning at around 5% on the CFS Functional Ability Scale. I could no longer lift cutlery so I couldn’t feed myself and I didn’t have the energy to chew solid foods so I lived on a liquid diet for a while. I couldn’t lift my phone, I couldn’t type, I couldn’t even lift a pen. I was unable to talk so I did what my brain would allow me and developed a combination of signals to communicate with those taking care of me. This was also the first time I experienced complete paralysis in the arms and legs, which would last for either hours or days at time. This meant I was either carried to the toilet a few metres away from my bed or at times I would drag myself over the edge of the bed knowing I would fall onto the floor and then I could pull my body across the floor and lift it onto the toilet. The paralysis ensured I lost all feeling in my legs, they were completely numb and a dead weight as if they weren’t even attached to my body. My body produced so little energy that breathing was the most I could do with my body in a day. Just getting to the next breath felt like a stellar achievement and when I made it to the end of the day and awoke the following one, I was happy yet relieved to see that I was still alive and breathing. Much of this time I spent in a state of unconsciousness, the demand of being awake was simply too much for my body to handle and it was in such a ‘crisis’ mode that blacking out was my bodies automatic response to handle the state it was in. I wasn’t even well enough to be awake.

We know that ME is a fluctuating illness and after exerting energy during an activity we experience ‘payback’ or the ‘crash’, where we have to suffer more than we usually do during the recovery period for this so called activity.  A few weeks later we were unsure if this really was ‘payback’ as I had never experienced it to this severity or for this length of time before so we called my GP out to see what she thought. As well as a decline in functional ability my pain levels were through the roof. I could no longer wear clothes as the pain of the fabric touching my skin was all too much; and when the gp was examining my arms & legs, the slightest touch felt like someone was stabbing me so I was screaming out in pain! I have never been in so much pain in my entire life. Even being in bed with my arms touching the sheets was unbearable. My GP had no idea what was happening to me as she had never encountered anyone with ME this severe before so she immediately sent an ambulance to come and get me and I was admitted into a local hospital. She advised I went into the best hospital for a long term stay as she thought that as well as investigative tests I would be in there for rehabilitation so the specialists could try and get my condition under control.

Upon arriving at the hospital the nurses were horrified that I’d spent the majority of the last 10 months in bed with no hospital admission until this point in time. The doctors suspected, Multiple Sclerosis, Tuberculosis, Lupus, Meningitis, Bone Cancer or Brain Damage. I was put on a stroke ward whilst the tests were ongoing with access to occupational therapists and physiotherapists to help me to learn how to stand and to walk again just like the stroke patients did. I was told that I wouldn’t be leaving the hospital until my functional ability was beyond standing and walking again. Then five days later after all sorts of tests, a stroke consultant came to me and said, “I’m sorry but we do not know what is happening to you. Our tests do not show what is wrong with you and this hospital doesn’t  have the specialists and the expertise to find this out. This must be ME but unfortunately there isn’t an understanding of what that is yet, especially here in the UK. I’m a stroke consultant and I’m the person in this hospital who is closest to finding out what is wrong with you. We can’t help you so we have to send you home today and if you don’t improve you will have to be tube fed.” His words hit me like a tonne of bricks, it felt as if I’d been shot, I burst into tears, crying in pain, comforting my broken body. I didn’t understand so I asked him, “What am I supposed to do now? Spend the rest of my life in bed?” His response was, “I’m so sorry. It’s extremely rare for ME to be this severe. It’s less than 5% of people with an ME diagnosis who function at under 10% and are in the ‘very severe’ category.” I could not walk, I could not stand, I could not sit up and I couldn’t even lift my own head off the pillow. Then I was lifted out of my bed and into the wheelchair, lifted into the car and sent back home to carry on living my life from my bed. This was a huge blow for me and my family and it didn’t take long to establish that this wasn’t ‘payback’ or ‘the crash’ – this was my new reality and I’m still living in that same bed, 8 months later to this very day.

These photos show me during the few hours I left the house in June and July and just a few weeks later when I was admitted to hospital. I don’t usually take photos like the one in the centre because I don’t see myself and all I can see is sickness but my mum insisted on taking one so in the future I can look back and see how far I’ve come. People often make comments to me such as, “well you don’t look sick” or “you don’t look sick so how sick can you be” and “but you look so good so how is it possible you’re that sick?”. People cannot see our sickness – we don’t have cuts, scars, bruises and we’re not covered in blood so we might not look sick on the outside but that doesn’t mean we aren’t sick on the inside. The chronic illnesses I have are known as ‘invisible illnesses’, which leads to doubts, disbelievers and judgements of our ill health based on how we look. Over the last year and a half I’ve spent in bed I’ve been able to do a lot of thinking (when my ME brain allows me of course) and the more I think about it, the more I question whether these illnesses are actually invisible? I typically don’t allow any friends or family to visit if I’m functioning at below 15% on the CFS Functional Ability Scale and even when I’m above that level and I do see them, it’s only my ‘good’ days so they only see me at my best. ME is a fluctuating condition isn’t it so they don’t see how much more we suffer during the recovery period of ‘the payback’ and ‘the crash’ and they don’t see us on our ‘bad’ days. So next time you encounter someone with a chronic illness and you judge them based on how they look – take into account that it’s most likely their best day possible and really have a think about what may be going on behind closed doors. A little empathy goes a very long way to those who are chronically sick and I’m telling you now that it will do the world of good for your friends or family members who have an ‘invisible illness’ for you to understand that their illness isn’t so invisible after all.

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