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…

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!!!

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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 🙂

 

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:

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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!

 

 

Eye Of The Intern

So far i have shared three chapters of my story with you. You discovered how my ME symptoms developed in How It Began… Part I. I then shared the journey of my diagnosis in How It Began… Part II moving on to describe how I managed my first year of university with ME in How It Began… Part III. It is no longer the beginning as we are now half way through my voyage, I’m sure you will be pleased to know? Also BEWARE, some swearing exists in this post and I’ve politely substituted **** so fill in the gaps as you please!

September 2012: When I first moved to University for the Creative Arts (UCA) in Rochester, Kent, I had two plans: to flourish through my first year of university, which I can proudly say I successfully accomplished and to gain as much experience whist making as many contacts in fashion as possible, which is the tale I will share with you now.

When approaching the subject matters: INTERNSHIPS and CONTACTS, my initial thoughts were ****!!! How am I going to do this! I don’t know anyone in London and have no clue what the hell I am doing! We didn’t learn how to make contacts or how to get internships at school, or at college, even though I was studying fashion (it doesn’t make sense does it, shouldn’t this be part of the curriculum?). As always though, I was determined to succeed and to find a way to get my foot in the fashion door.

Fortunately, someone, somewhere must have been watching over me because almost immediately after moving to uni, when my mum attended one of her regular golf dinners, she discovered that her friend, Judy had some rather intriguing information, “Oh btw (Judy drops in the conversation casually) my sister works in the same building as a really famous fashion person.” My mums response was exactly the same as mine would be, “WHAAAAAT!! Find out who it is, now!”. This could be an extremely useful contact to have and it turned out to be no other than Sarah Doukas, founder of Storm Model Management and the women who discovered Kate Moss at JFK airport in 1988. OMGGGGGGG OMGGGGG OMGGGGGG it even turned out my mums friends sister, Sheron, was friends with her! What were the chances! That was it, we had to meet Sherron and find out more.

An impromptu meeting with Sherron at The Shop at Bluebird on the famous Kings Road in Chelsea had me nervous with excitement. It was sort of like going on a blind date, although my mum was also attending the date (awkward). Sherron used to run the Spa & Beauty area in the coveted concept store and introduced me to all of the staff who were simply fabulous. It was a marvellous afternoon and Sheron seemed to have many contacts to aid me through that ever revolving fashion door. These contacts included Gucci (ahhh hallelujah hallelujah) who are known for having an automatic delete system when people email them regarding internship opportunities and mine was being handed to them personally. This was it… definitely going to land my dream internship and then obviously get amazing job at Gucci and life will be made forever. That’s how this interning thing works right? It’s safe to say that I was a tad optimistic upon my big move to Kent/London because I never actually heard anything back from Gucci (insert crying emoji here). Oh well, onwards and upwards!

November 2012: Sherron was most definitely an angel sent from above. The Shop at Bluebird were hiring a visual merchandising intern and I had an interview for the position! It was straight down to business in the interview when the first thing that came out of the managers mouth was, “Before I worked here I worked at Prada’s Head Office in Milan. So, what do you do?” OH NO!!! What was I supposed to say, “I’m a 1st Year Fashion Promotion student at UCA?” WHAT HAVE I GOT MYSELF IN TO?!  I had seriously thrown myself into the deep end with this one. Feeling extremely frazzled, embarrassingly under-qualified  and completely overwhelmed, I without a doubt resembled Bridget Jones mid-major meltdown. All I could do was think fast so I turned the conversation back to when I first met her on my visit with Sherron and we bonded over our shared love of Tim Walker’s latest exhibition and complementary book stocked by the store. Thankfully she remembered me (imagine if she didn’t) and the fact I knew Sheron definitely lifted her sullen spirits… it was all laughs and giggles from then on! This is when the phrase ‘It’s not what you know, it’s who you know’ became a confirmation for me. The feedback was positively positive as they expressed their desire to take me on; although they needed me to work full-time and I couldn’t commit to that, so I had to pass on my first internship offer unfortunately. Although deep down a wave of relief came over me; at this starting point I was already terrified of how/if I would cope with an internship as well as uni whilst having ME. If you are a Made In Chelsea fan then you may have seen them filming at The Bluebird before, if not see for yourself this staggeringly stunning space. (images from Google)

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January 2013: My next internship opportunity arose after I scrolled upon a friends Facebook status, shouting about how she had managed to secure internships at both Topshop Head Office and with the upcoming designer J.W. Anderson. She had no experience in fashion (unlike me), had never worked in retail (unlike me) and was in her first year at a notoriously bad fashion course in the North of England (unlike me). I had no idea you could get internships with so little experience/qualifications as I had been relying on contacts thus far so if she could do it then so could I. (Feel like a bitch for writing that but just observing the facts!) Considering she had already secured the internship, I kindly asked her for the contact email address at J.W. Anderson and suggested how exciting it would be if we interned there together. Unfortunately for her, she thought otherwise. She refused to give it to me and claimed she had spent days looking for it, her answer was strictly NO. What a BITCH. She was supposed to be my friend. Screw her… I’m going to find this email and get this internship myself! Within five minutes I had an internship with J.W. Anderson (not even exaggerating) and was hysterically screaming down the phone to my boyfriend, “I got my first internship!!!!!!!!!!!!” “I didn’t even know you were applying for internships?” he replied. “Neither did I until five minutes ago!”.

It turned out that my ‘friends’ university wouldn’t let her take time off to go to London to intern so I guess some call that Karma? Further down the line she had the audacity to come to me asking for my internship contacts and what was my response? Strictly NO. Double Karma?

Below I’m with the other J.W. Anderson interns on our way to the Womenswear Autumn/Winter 2013 show at London Fashion Week. (spot the blonde, that’s meeeee) You can read a blog post I previously wrote about interning at J.W. Anderson here.

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At that point in time, the only people who knew about my ME were my immediate family and closest friends. I didn’t tell anyone at J.W. Anderson about it as I didn’t want to be treated differently to the other interns. I guess I was trying to contain it to my inner circle so if people didn’t know about it, it didn’t exist? Yes, I was still in denial and quickly became skilled at excuses and little white lies to cover my ME footsteps. It began on my first day of interning when I discovered we were expected to stay at the studio until 1/2/3am each night, only to return at 9am the next day. This was a highly unrealistic goal for me to achieve so I began to alter reality with ‘lies’ that couldn’t be mistaken for excuses as to why I couldn’t commit to these astonishing hours. I didn’t want to appear as if I didn’t care or that I wasn’t willing to work hard because I was, probably more than anyone, my body just wouldn’t let me. Deep down I must have been acknowledging the ME because of the adjustments I had begun to make to suit it, I just wanted to keep it my little secret.

June 2013: The severity of ME is measured by your functional ability level (see below). This is how I know whether my ME is improving, maintaining the same level or in this scenario, worsening. It had been six months since I first interned at J.W. Anderson and I found myself interning there once again. Looking back now, a significant deterioration must have happened in that period of time because this time around, I found interning almost impossible. I went from functioning at 70% to 60% and I continued to tell no-one at J.W. Anderson about my M.E. My inner circle was as tight as ever, the secret was bound by strong ties and I continued to blog showing no clue to what was going on behind closed doors.

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click on image to enlarge

In my blog post about interning at J.W. Anderson the second time around, I initially wrote about returning to J.W. Anderson to work on both the Menswear Spring/Summer 2014 collection and the Womenswear Resort 2014 collection but only one collection was mentioned in my post.

After the Womenswear Resort 2014 collection was complete and the lookbook had been shot, it was time to move onto the Menswear Spring/Summer 2014 collection. I had worked at J.W. Anderson for the lead up to fashion week before so I knew what was expected of us. Mentally I was ready for it and physically I thought I could only assume I was ready for it. It had only been six months since the last show so surely I could do it again, couldn’t I?

As show day drew nearer, the nights got longer and with every twenty-four hours that went by, I pushed my body, I forced it to function and I demanded from it every ounce of strength it could give. We worked from 9am until on average 2/3 am, seven days a week with not a minutes break (you ate lunch on the go) and it got to the point where the staff were even asking us to stay on their sofas, not far from the studio in Dalston so we spent less time travelling back and forth from our own places.

I knew things were coming to an end when one evening I was told I had to sprint to the nearest Tesco (it was midnight and about to close) because Jonathan wanted cigarettes and he wanted them NOW. But Jonathan wasn’t in the studio working was he, he was out to dinner with friends at a local Dalston restaurant. Were they serious? Were they actually asking me to do this? I didn’t have time to think, I had to leave there and then to make it in time and god forbid what would have happened if I didn’t. Fired maybe? There was an army of interns at the front door desperate to take my place (yes the fashion industry really works like this). Upon arriving at local hipster restaurant, I expected some sort of gratitude for doing this, especially considering I was doing this for FREE after all! But no, I didn’t get it and I didn’t even get an acknowledgement when I put the cigarettes right in front of him. He continued his intimate conversation with super stylist Benjamin Bruno as if I hadn’t almost killed myself to do this for him (of course he had no idea of my ME, that is beyond the point though). I walked straight out and never went back! Well, actually I wish that was the case – It seemed the iconic fashion film ‘The Devil Wears Prada’ was becoming my reality.

My friends and family called my experience of interning ‘slave labour’ and couldn’t understand why I was doing it to myself but I knew that is how most interns in the fashion industry are treated and if you didn’t do it then you would be replaced almost instantaneously, have no experience on your CV and you would never get a real-life paid job (yes they do exist). I found myself in a familiar territory, torn between my career and my health. I didn’t have to make the decision though because my body decided for me when it took ME to a whole other level. When I woke the following morning and placed my feet firmly on the floor, the excruciating pain shooting through them up and around my entire body was indescribable and unbearable to the point where I couldn’t stand and most certainly couldn’t walk. What on earth was happening to me??? The pain had been building up over a period of weeks, as was the difficulty I found walking. I really thought I had somehow seriously injured my feet and knew that this was the final straw. I dosed myself up on painkillers and hobbled to the studio, collapsing on arrival whilst explaining my injury and how I could no longer intern there. I packed up my London life once again to return home and found with complete bedrest the pain was completely gone within a week. There was absolutely nothing wrong with my feet, it was my body telling me it couldn’t take anymore, it wasn’t just the final straw for me, it was the final straw for my body and it told me this by not allowing me to walk. I had been masking pain for over a year, by taking on average twelve-fifteen painkillers in order to get me through each day until my GP explaining how dangerous this is so don’t do it fellow spoonies! (A spoon is anyone who suffers from a chronic illness, explained here). I now know that pain is a warning sign if you have ME, it is a dialogue between you and your body, listen to itThese are some of the wisest words I have ever heard when it comes to ME but hindsight is a wonderful word and will feature many times in the life of ME sufferers.

You are not going to believe what I am about to tell you but I’m going to tell you anyway. Just two weeks had gone by since I had left J.W. Anderson and moved my entire life back home to Staffordshire when I received a phone call from my friend (well another contact made through my mum and the golf club) she was Head of Marketing and Social Media at Religion Clothing and asking me to intern for them. I am crumbling whilst writing this… you probably know me well enough by now to know what I do when an opportunity of this sort arises. Do I say NO or do I say YES? Writing this blog has helped me piece my ever so complicated ME puzzle together into a journey I now understand and looking back, all I’m thinking is what the **** **** **** was I thinking?

I’m actually shaking my head to myself whilst writing this. You can read more about my experience interning at Religion Clothing here. Feeling very angry at myself right now!

I will try and keep this one short and sweet because I’m starting to sound  like a broken record! I am proud to say that I approached this internship differently to the last by negotiating my hours to ensure that I would ‘only’ be working 9am-6pm, I would have the weekends off and I would solely be working in the Head Office and not running around London. I even told them about my ME (big move here guys) so i wouldn’t have to do anything strenuous in the office. The first day could have been a sign for what was to come but for once I can happily say that it wasn’t (SMILEY FACE). As soon as I arrived at the office, I was asked to return to my new home in London to retrieve my laptop… for anyone else this wouldn’t have been a problem but for someone with mild-moderate ME the thought of walking another ten minutes was absolutely dire so I ran home in five, got straight into bed for another five, before hauling myself back to the office. There was no way I was going to cope if this was only the first day but by some sort of miracle, I actually lasted three months at this internship! This was a HUGE achievement for me, smirking, proud faces all around.

At Religion I worked in the sales showroom, learning how to sell the collection to buyers (including my personal favourite ASOS). There was just one other intern and two paid staff working in the showroom so there was much more opportunity to ‘prove myself’ compared to J.W. Anderson where I had fifteen other interns to compete with to ‘stand out’. I swiftly rose to the challenge, beginning by inputting orders into the system, moving on to observing how the collection is sold to the buyers, then to assisting the meetings and then onto actually taking the meetings myself, which I’m sure wasn’t part of the internship role! The opportunity to do so came about when my boss hired another intern who he met in a bar (not even joking) and then began dating her, whisking her away for lunches, which turned into afternoons and days off so I was left to take his meetings with the buyers! I used this opportunity to my full advantage and learnt more than I ever expected to but when the three month mark came by, I realised that I was actually doing his job, the job he was getting paid to do and I wasn’t. There comes a point whilst undertaking an internship when you realise there is nothing else you can learn from it and this is the point where you decide to move on. I am delighted to say that I left this internship by choice and not by the choice of my ME.

September 2013: Shortly after meeting super Sherron, she sent Storm Model Management my CV inquiring about internship opportunities for me, which I had no idea about until they emailed me asking me when I wanted to intern for them………… Can you imagine my face when I received this email. I actually thought it was a mistake because interning at Storm is HUGE. There was a year-long waiting list and a rota of two new interns each week, most who got on the list due to the ever so important term ‘contacts’, which is exactly how I got on the highly esteemed ‘list’. A year later and it was my time to shine. I was lucky enough for it to be during London Fashion Week, which for obvious reasons is the most exciting time to be at a modelling agency.


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The day-to-day tasks in the Storm office (images above from Google) were as expected; updating the models’ portfolios; online and offline, as well as assisting with their polaroid shoots. It was fashion week though so I spent most of my time multi-tasking, eaves dropping on the conversations happening around the office for all the insider fashion week info! As London Fashion Week was coming to a close and it was time for the models to move on to Paris Fashion Week, the office was sent into a state of frenzy when Cara Delevingne lost her passport and missed her flight to Paris for the Louis Vuitton show! The entire office was in meltdown, everyone had to stop what they were doing and ring everyone Cara knew, this was a code red EMERGENCY. It turned out that she had left it at Adam Levines house, WHAAAAAAT?? Who knew they were even friends (or more) ??

Cara is a BIG DEAL at Storm, she is the money maker and probably the most coveted model in the world right now. Each day we received hundreds of deliveries of goods for Cara to endorse, so much so that the entire office was bursting with boxes for her and the interns had to make regular trips to her home to deliver her goodies!

There was one moment during that manic week, which really stood out as a moment of pure happiness. The Burberry show was being live streamed into the office, the entire Storm team crowded round, each one of us filled with the same excitement only fashion lovers can understand, whilst Storm models were front and centre, gliding down that oh-so-important runway. Burberry is the most important and established show at London Fashion Week so when Sarah Doukas and her brother Simon (partner of Storm) returned from the show to tell us every little detail and Simon went on to discuss with me one-on-one, Christopher Bailey’s (Chief Creative and Chief Executive Officer at Burberry) aesthetics for the season, I knew that is where I was meant to be, I had never felt more at home.

I am sad to say that the fun at Storm didn’t last long when once again I was struck down with a nasty bout of flu. Catching a virus or infection when you have ME is one of the worst things that could possibly happen to you as the effects can be extremely detrimental to your already severely impaired body. The last time I caught a virus was in July 2015  after I had been spending time with family members unaware that two of them had what healthy people would consider, “just a cold”. When I found out, I went into extreme panic mode as I knew how sick a virus could make me (if you have read my previous blog posts you will understand). I was horrified when the person with the cold actually had the audacity to say to me “just drink some carrot juice and you will be fine, that’s what I did”. I could not believe these words actually came out of their mouth. I was raging with anger but had no energy to explain to them how what they said couldn’t be further from the truth and they should never say that to someone with ME ever again. Two weeks later and where was I? In an ambulance, being rushed to hospital because my ME had become so severe I lost complete use of my arms and legs, partial temporary paralysis is what was happening to me.

Let’s rewind quickly – As you can imagine, after the virus hit me whilst I was at Storm, I didn’t last much longer. I ended up becoming a fly on the wall, unable to talk, think, move or make any sort of impression whatsoever. I doubt they would ever take me back or even remember who I was. This is the first dream ME took away from me and I was down to a level of functioning at just 50%.

There were brighter days ahead though so lets fast-forward a few months after Storm to December 2013:

HELLO AUSTRIA! As soon as the Christmas holidays arrived, I hopped on a plane to the winter wonderland ski resort, Bad Kleinkirchheim (BKK) to visit my ski-instructor boyfriend, who spent the Winter seasons abroad living out his ski-ing dream. During the four weeks that I spent there, I saw enormous improvements in my ME to the point where I was able to walk for miles from our tiny hamlet Rottenstein (see below) to the centre of BKK almost every day and feel good for it! I could even ski for a couple of hours each day without the same levels of cruel payback which I had experienced the year before whilst visiting him in Canada. I wonder why I made such a huge improvement at this point in time? Does anyone have any ideas?

image_1 image_2 As always, I decided to take advantage of this so I applied for the next round of internships as we were coming up to the London Collections: Men, also known as mens fashion week. I managed to secure an internship at the then up and coming urban label KTZ, which I was more than excited about after taking a few months break from interning. Typical ME though and I was struck down by another virus as the New Year was ringing in, leading me to white lie once again, telling KTZ I couldn’t make it back in time to work for the week before the show and I would only be able to attend show day (due to weather and flights etc blah blah), when I actually needed to go to bed for a week in order to make it through show day! I somehow managed to drag myself through show day, read more about it here by desperately counting down the minutes until I could crawl back home and collapse into bed. I even turned down an invite to the after-party, what on earth was my life coming to, turning down a fashion party?!?! This virus pushed me even further down the CFS Functional Ability Scale, just as I was about to embark on the adventure of a lifetime… an 8 month university exchange to the opposite side of the world, the wonderful land of OZ. Can you predict what happened next?

Thanks for reading my blog (WordPress seriously needs to get emojis so I can insert a huge smiley face here!) I know that this is a lengthy post, I’m trying to catch you up to the present day as fast as possible. By then the posts will be short and sweet I promise. I’ll be back with the next chapter as soon as soon as my body lets me!

How It Began… Part III

August 2012: There I was, feet firmly placed on the ground, anxiously glancing from one side to the other… which road should I dare to choose at this unpredictable crossroad that lies ahead? A crystal ball would have shown me the consequences of this dire dilemma I had come to face, if only they existed; if only seems to be a phrase I often use when it comes to ME. I thought I knew what I was doing, I thought I was making the right decision. Some say it is the worst decision I ever made, the consequences are worse than you would want to imagine. Others say I lived the dream… until now that is. Those are the ones who believe the consequences are worth it. I ask myself, what does it really matter what others think when I am the one who has to live with the consequences of my decision every single day and potentially for the rest of my life? The frightful consequences are a constant reminder of the crossroads I once faced and how different my life could be if I had taken one step in the opposite direction.

How It Began… Part I and How It Began… Part II will lead you up to this moment in time.

September 2012: Less than one week after my ME diagnosis by Professor Powell, I began the gruelling, treacherous journey (you think I’m about to climb Mount Everest or something of a similar difficulty don’t you) leaving my tiny countryside hamlet, Whiston in Staffordshire to venture into the unknown… the big bad Kent. I’d never been to the South East before, no further than London anyway, unless we passed through Dover/Folkestone on our way to Calais to our beloved holiday destinations on the other side of the Channel. If you’re from the Midlands or from the North as people down South say we are… BTW we are not from the North! We are from the Midlands! When you think of Kent, you picture an abundance of vineyards, sun-filled seaside holidays and refined country estates (expectations definitely too high). The Medway towns, where my university campus was based couldn’t be further from what I imagined. OH DEAR! what had I got myself into?! Don’t ever go to the Medway towns, you will regret it. (Feel like people will think I’m a snob if I explain why so not going to explain why I’ll leave well alone there). There were a few perks of the town though, it wasn’t allllll bad. The Dickensian Christmas Festival was nothing like I’d seen before, this overwhelmingly extravagant Victorian style parade shut down the town, literally. The people there seriously loved/worshipped Dickens, he was born there after all. Upon the big move to Uni, I must have had great expectations to live life-like Charles Dickens did. I definitely need help – expectations of life continue to become far too unrealistic to handle.

Dickensian Christmas Festival

Dickensian Christmas Festival

Upon arriving in my new town and my new home, I was faced with my first ME obstacle. ME Specialist Powell had advised me to “avoid climbing stairs” as they had recently started to worsen my symptoms. Four flights of stairs to the top floor, aka my new home and no lift in sight, uh-oh… thank the lord for wonder women aka my mother who unpacked the car and all my worldly goods with a workout she could be proud of. I guess I didn’t have a choice but to ignore those wise words of Powells… not like I would have listened to him anyway! I was on a path to live an ME life MY way, actually it was more like I was on a path to live a life without ME.

When the immunologist, Powell diagnosed me with ME, I made the decision to ignore his words, ”don’t go to university or you will get severely sick” and soldier on, not letting ME affect my life like he said it would. I thought I had a choice in the matter and I could control IT, I later discovered that IT controls me. ME takes over like a parasite, sucking the life out of its host, slowly but surely, ensuring it’s causing pain, suffering & cognitive malfunction along the way until the host merely resembles a poor relation of the creature it once was. Later on in my story, you will see the results of how ME has manipulated my existence. It isn’t entirely bad though, countless positive experiences have happened a long the way!

I was due to begin the coveted Fashion Design course at University for the Creative Arts, also known as UCA. I have absolutely no idea how I was accepted onto this course, it must have been a miracle. Why was it a miracle??? During my interview, the interviewer (Fashion Design Course Leader) merely glanced over my portfolio and howled, “This is not fashion!!! What are you doing here? Why did you even apply for this course?!!! That’s enough… I don’t need to see any more (checks buzzing phone with urgency) Do you have any questions for me?” Err no… and I ran for it. Well, I calmly strolled out of the interview room in a nonchalant manner then when I was out of sight of crazed interviewer, I legged it with tears rolling down my face as far away from UCA as possible with plans never to return. I had spent almost a year preparing for this highly anticipated interview during my Foundation Degree in Art & Design, an interview which lasted a total of two minutes after a nine-hour journey disaster of a journey to get there. This was the art school where Tracy Emin shined, Karen Millen and Zandra Rhodes’ designs were born. What the hell was I thinking when I applied here. This is why I assumed a mistake had been made when UCAS notified me of my offer. I later learned that interviewers at art schools are known to ‘rip prospective students apart’ in order to test their resilience. The words “You won’t make it in the fashion industry if you can’t handle high levels of criticism” were later regularly drilled into my head by the fashion tutors.

Despite being accepted onto a Fashion Design course, I have never wanted to be a fashion designer. I quite simply suck at it and I don’t believe it’s something you can be taught, you are either born with it or you are not, and I am most definitely not. I only applied for that course because I knew that being close enough to London gave me the chance to make the contacts I knew I needed to, in order to ‘make it’. Another bizarre twist of fate happened when within minutes of meeting my new flat mate Rachael and learning about her course Fashion Promotion, I knew it was course meant for me. Fashion Promotion is about styling and photography, fashion film, fashion forecasting, visual merchandising (VM), fashion writing, public relations and marketing, social media, event management and creative direction. I was already working at Topshop, excelling at styling and VM so after another round of interviews and new portfolio submissions, I was accepted onto my new course! Lots of YAYS! followed this thrilling news.

During my first year of university, I managed to keep my mild ME symptoms (exhaustion after mild exertion, virus upon virus and flu-like symptoms) under control by solely focusing on university work. I was there to acquire the skills I needed to break into the fashion industry. I wasn’t there to make friends; I didn’t have enough energy to keep up with the ones I already had and I definitely wasn’t there to party. I’d been doing that since I was fifteen, and five years on, the Medway clubs were the last place I wanted to be. Even if I wanted to carry on with wild nights out, I was no longer able to. I tried it once during freshers week; I lasted two hours before severe exhaustion kicked in and my intolerance to alcohol became more apparent than ever before. Another night out a few months later at KOKO in Camden Town saw me falling asleep in the smoking area before realising I had to leave if I wanted relief from the unbearable exhaustion. After leaving early, I unfortunately saw texts from a ‘friend’ to the kind friend who had left the club with me saying, “Emma is such a wimp, she needs to man up. Come back to the club if you can.” This was the same so-called friend who had been saying to me all night, “don’t leave, just sit down for five minutes and then you won’t be tired anymore.” That is not how ME works. This was the first time I experienced how hurtful it is to encounter the wrath of those who are so ignorant when it comes to ME.

IMG_1546

That’s me on the left and Chloe on the right, attempting to beat ME and last through the night!

My limited capabilities for a social life charged my dedication to work even more and my time at university became a rollercoaster of work versus rest and sleep. My career was my number one. I was the ‘geek’ of the course, fashion was my speciality and this is where I thrived. Ironically I had won the award ‘most likely to drop out of university’ at our 6th Form Leavers Ball. That was probably due to my track record of skipping weeks of school at a time (academia wasn’t for me) but at university when at the end of the year, the course leader arranged us in order of attendance, I was front and centre, 99% attendance, star pupil and very annoying to the rest of the class.

Attending a creative university was nothing like attending your usual British universities. This was different, it was fashion and ‘mean girls’ was real life. I didn’t know bullying existed in adulthood until I unfortunately became the target on three separate occasions, in three separate terms with three different bullies.

Bully: It’s not fair, you haven’t been at university for two months (due to ill-health) and you got an A and I’ve been here every day and I’ve got a B. This is so typical. The tutors always give you As.

Me: (hear whispering and my name being mentioned) What are you guys talking about? Bully: What grade did you get Emma? Me: An A. Bully: I’m happy for you that you got an A but you don’t deserve it. I can’t believe they gave you an A. Me: Why, what grade did you get? Bully: I got an A too, it’s just unfair that you got one.

Bully: Staffordshire! Staffordshire! (throws ball of paper at my head) Are you coming out tonight? Me: No, it’s not really my scene going out in the Medway towns. Bully: Maybe that’s because of the people you choose to hang out with or maybe it’s a reflection of your personality… Me: or maybe you’re just a bitch. Bully: OOOOOO no you didn’t! Your’e gonna wish you didn’t say that. (sidekick stands up swearing at me) Let’s take it outside. Now! Come on, get up! Me: I’m not going to fight you. Bully: (still trying to fight me, beginning to realise HE is making an embarrassment of HIMSELF). We could have been friends you know so you better watch out because I’m going to make your life a living hell from now on (later found out HE and HIS posse beat up their flat mate and she dropped out of uni after they threatened to do it again if she told anyone). Yes that was a guy who tried to fight me!

How could these people be so horrible to me? What had I ever done to them? I quickly learned that everyone was in it for themselves. Jealousy and competition fuelled the burning fires and developing a thick skin was the only way to survive the brutal environment I found myself in. “Ignore the bullies, they will not succeed. You will see them struggle and fail. I doubt they will even make it through to the next year. Stick with the group you have. You and a handful of others are the only ones who will make it, you will see.” These unexpected words from the most agreeable, calm and peaceful tutor ensured that I stuck to the few friends I had like glue.

Brain Fog has now set in and it could be days or weeks before I am able to write again so I’m going to finish this post with a hint to the next. There was one more piece of the puzzle left for me to conquer and it proved to be my downfall with ME. Let the battle of the internships begin

Brain Fog is a common symptom of ME and is described by Dr Sarah Myhill as, ‘What allows the brain to work quickly and efficiently is its energy supply. If this is impaired in any way, then the brain will go slow.’ 

What she means by brain fog:

  • Poor short-term memory
  • Difficulty learning new things
  • Poor mental stamina and concentration – there may be difficulty reading a book or following a film story or following a line of argument
  • Difficulty finding the right word
  • Thinking one word, but saying another

You can read more about it here http://drmyhill.co.uk/wiki/Brain_fog

I hope it doesn’t last too long and I can share the next part of my journey with you soon!