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.

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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…

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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