Learning to Live with M.E.

by Melanie Jane Edgar

 

mj_edgar

 
 

The story of how it all began…

 

Summer 2007 I completed my AS-levels. The exams went well but whilst studying for them I developed a cough. The symptoms gradually got worse and my mother took me to a doctor; we were told it was most likely a viral infection and would clear up on its own, given time. However, instead of clearing up it just stuck around, and as I had planned for a busy summer I decided to just carry on with things. It started with a family holiday to Italy; despite the warm climate the cough still wouldn’t go away. When we got home it was back to the doctor’s; again we were told it was most likely viral and would clear up on its own.

Still coughing away, I embarked on a Duke of Edinburgh Expedition, the aim of which was to walk 10-20km per day for 5 days. I thought I was going to be able to get through it but I was very soon proved wrong. The first day we had barely walked 3km before I was struggling to breathe and shivering. Our instructor allowed us to cut short our route to make camp and I did improve, but as the expedition went on my symptoms just got worse.

By the time I returned home I was really struggling. I should point out now that I come from a stubborn family when it comes to illness. I grew up in a family who are great believers that, whenever possible, you have to keep going and not give into illness. I firmly believe this (even now), and so, instead of resting up after my expedition, I went to Reading Festival with friends. Looking back, I know it was a stupid decision. In my defence I was a generally healthy teenager and the doctors did keep saying I would be ok. At Reading Festival my symptoms worsened again, I struggled to eat due to breathlessness and chest pain and therefore spent four days living on coffee and water. After the festival was over there was no time to recover; I went straight back to school to start my A-level year.

My first month back at school wasn’t fun. On top of the coughing I suddenly didn’t have much energy, and I suffered from muscle pain or cramps and spasms. Again my mother took me back to the doctor’s, but this time they were more concerned. The doctor told me to return in a month or two if the new symptoms hadn’t improved and they would run tests. They didn’t! I returned to the GP in late October and they started the 6 months’ worth of tests that lead to my eventual diagnosis of M.E. During this time, my cough did improve but my energy levels didn’t. In my AS-level year I was a studious, active and healthy 16-year-old girl. I did several hours of ballet and jazz dance training per week alongside sport activities at school. I helped out with charity events, I sang weekly in the school choir and I loved spending weekends with my friends. The contrast when I started my A-level year was stark: I didn’t have the energy to put on make-up, fix my hair or do the amount of exercise I’d been able to do before, and I seemed to permanently have a sore throat or some other mild infection.

 

The gradual decline…

 

After my diagnosis was confirmed I was sent to see a consultant. The consultation was horrendous; he confirmed the diagnosis of M.E., told me there was no treatment and that I shouldn’t bother trying to sit my A-levels or continue at school as I wouldn’t be able to cope. I have never and will never forgive him for this statement; I left that appointment so upset but determined to prove him wrong. I managed my symptoms as best I could myself, I reduced and eventually stopped exercising, I focused on my school work and largely abandoned my social life, but I did manage to make it through and complete my A-levels.

I started at Durham University in September 2008. I studied biological sciences, which is quite an intensive subject with lots of lectures and laboratory work. When I started I didn’t want to tell anyone about my condition. I thought that I could handle it on my own without support. However, things started to go wrong almost immediately. I found that I really wanted to get involved in the social life at university; I guess I was sick of being the studious kid and just wanted to have some fun. I had no idea how badly this was going to affect my health.

I partied like a normal university student, I went out 3-5 weeknights with friends, we drank, we danced and just had a laugh. But within the first month I realised I was suffering more than the others after these nights out. Others would recover from the hangovers and late nights within a day maximum, whilst I never really did and simply lurched from exhausted state to party to exhausted state until my body gave out, when I would crash out for several days in bed and then start all over again. I wouldn’t admit that anything was wrong but everyone around me could see it. My immune system appeared to crash; I got flu twice, had 2-3 viral chest infections, bronchitis, and a kidney infection all within three months. I started to miss lectures and stopped completing coursework in an effort to just keep my body going. In December it all came crashing down. I contracted glandular fever and tonsillitis. I found myself stuck in bed for over a week, only emerging for meals, and was struggling to manage my condition.

I headed home for the Christmas holidays. I think my parents and my friends were shocked at my deterioration. The decision was made that I wouldn’t be going back to university. I spent the next few months at home trying to get my health back under control. I did eventually manage it but I never got my energy levels back to their pre-university level. However, stubborn determination and rest meant I recovered enough that by June I was able to take on a part-time job to try to see if I could go back to university.

Having managed to work consistently, I quit my job in September 2009 and returned to Durham University. Second time round I decided to do the complete opposite. I was so frightened of making myself sick again that I focused on my academic work and keeping my health under control, I had very little social life outside the occasionally movie night with my flatmates and friends. I still got regular infections, particularly kidney infections, and I still struggled with my energy levels, but it was much better than the previous year. However, I managed to get through the entire year with minimal drama and was allowed to continue on to the second year.

At some point during the year I think I got overconfident. I signed up to go on a conservation expedition to Madagascar in July 2009, so after a fairly stable year at university off I went. Amazingly I managed the expedition fine; granted I didn’t do as many walks as the other volunteers did, but I did lots of things at camp and had a truly incredible time. A month later, however, it was a different story.

In August 2009 everything changed. My health collapsed for no discernible reason. I have no real memories of this period, which lasted about two months in total. I think I spent most of it on the sofa; my mother and stepfather must have helped me upstairs to bed but I don’t remember. I’m sure they made sure I ate, but I don’t remember that either. Instead that time is a blur of exhaustion and pain. I don’t think I was asleep, I just laid on the sofa in a kind-of-comatose state, unable to do anything. Light hurt. Noise hurt. Simple tasks like eating or speaking were too exhausting to contemplate. I have no idea how and when things got better, I just know that eventually they did, and being stubborn, I decided I would still return to university to start my second year.

When I returned to university I started to have regular relapses in my health. Every few weeks I would suddenly take a turn for the worse; my muscles would weaken overnight so I’d be unable to walk or sometimes even stand. My flatmate at the time was incredible. She never made me feel embarrassed about my relapses, instead she hugged me when I needed it and laughed at me when I needed that too. It was through her that I discovered that laughing at myself when I do stupid things because of my condition is sometimes the best treatment. I remember getting up one morning, or more accurately trying to, but my legs were too weak and I landed flat on my face on the floor – at this point there were two choices: cry or laugh. I chose to laugh and, having rushed up the stairs to check I wasn’t injured, so did my flatmate. Making friends when you have M.E. can be really hard; people don’t understand you anymore and believe me, I’ve had my fair share of problems with people over the years, but I find the best people are the people who are prepared to accept your condition and who just let you get on with it and laugh with you about it rather than feel embarrassed or awkward.

Despite my best efforts to keep everything under control in second year I fell in with a difficult crowd of people who didn’t really understand my condition, which made it very difficult to manage. As a result of this, my relapses got steadily worse and eventually a relapse occurred that was more serious, and in April 2010 I was forced to drop out of university again. At this point I became reliant on crutches to walk around, which I hated, and still hate, the way people stare at me when I use them, but they allowed me to move around and keep some independence. At this time, despite issues in the past, the support provided by the university was excellent. They allowed me to return home to recover and study in peace and I sat my examinations in August rather than June, was allowed rest breaks and to take food into the exam. Despite being on sticks and in the middle of a relapse during the exams themselves, I managed to pass the year.

 

Turning my life around…

 

I managed to secure a work placement at an aquarium during my second year at university, so in September 2011 I moved to Devon. At the time I just needed a break from university life and a chance to get things back on track and remind myself why I chose to pursue a career in research. Little did I know how much this year would change my life, both in terms of my future career and my health.

During my work placement in Devon I had a fantastic supervisor who allowed me to organise my time myself. This was a revelation. The biggest problem I had, and sometimes still have, with university life is the scheduling. I find people who have had M.E. long term tend to be good at organising their own lives, but when the rest of the world wants to interfere with their lives it can make the condition much more difficult to manage. Over the course of the 12 months I was based in Devon I managed to get my relapsing under control and after 6 months I’d stopped relapsing altogether. I was no longer using my crutches to get around and was able to walk independently. I still suffered from exhaustion, muscle pain and some light sensitivity, but all of these symptoms were much more under my control. After 10 months in Devon I started an intensive course of occupational therapy. This course was a revelation. For the first time since my diagnosis I finally felt that someone was trying to help and support me. The therapists never said “you can’t do that” or “this is stupid”; instead they suggested mechanisms and coping strategies to put in place to help keep my condition balanced and hopefully improve my symptoms in the long term.

 

Getting things under control…

 

I returned to university in September 2012 to complete my final year. Using everything I’d personally learnt in Devon alongside the coping mechanisms I’d learnt through the therapy, I had a relatively calm final year. I did have the occasional relapse, and towards my final exams I did have to return to using my walking sticks for a couple of months, but for the most part I managed my symptoms.

During my final year I spent some time debating the future. Some people, doctors included, thought it was time I stopped and rested for a year. However, both I and my family worried that if I stopped I’d never get going again, and I didn’t want to. I decided, through my experiences in Devon, that I needed to find a career path that would allow me, within reason, to determine my own work schedule so that I could keep my condition managed. Consequently, in September 2013 I started a research master’s in London. The structure of this master’s allowed me to pursue a career in research whilst managing my condition, and incredibly I barely had a single relapse during my master’s year.

I was lucky enough to secure a PhD position during my master’s and I started my PhD in September 2014. I’ve had to move cities, and adapting to that was tough in the first few months, but things have settled down now and I feel that I have things under control.

 

Looking to the future…

 

I don’t want people reading this to think that I think that I’m cured. I still worry every single day that I’ll relapse; I don’t think I’ll ever not worry about relapsing. Every night before I go to sleep I worry that when I wake up I won’t be able to walk or open my eyes, but every morning I wake up and I haven’t relapsed is another tiny victory. Somewhat controversially, I don’t believe that this condition will ever go away, I believe that sufferers simply learn to cope with and manage their symptoms, and I hope that in the future these coping strategies will become so much part of my life that I don’t notice I’m doing them.

I also still really worry about what people will think. Many of my colleagues aren’t aware of my condition because I don’t feel comfortable discussing it with them due to negative reactions towards my condition in the past. I struggle explaining it to new friends, particularly if they have no experience of the condition before, and I have old friends who still struggle to understand it. I do try to hide to worst symptoms and occasional relapse from family and friends as much as possible, because I feel they’ve been through enough with me and because I want to be able to deal with things on my own, although I will also admit this is not always a good idea. I’m hoping through writing this I will feel more comfortable talking about my M.E. and people will feel more comfortable discussing it with me.

I have left bits out of this story. There are plenty of other anecdotes, both good and bad, that I could have included but I thought it was long enough as it is. I’ve found writing this post extremely tough; reliving the relapses and the emotions surrounding them has been difficult but strangely rewarding, as it makes me realise how far I’ve come and how much I’ve learnt. I hope one day that I can help others with this condition, even if it’s just reminding the many sufferers that they’re not alone, as this condition can make you feel extremely isolated. I am currently undertaking a course of physiotherapy, which is tough but really rewarding, and managing my diet alongside managing my work schedule so that I can keep my M.E. under control. I hope this will be successful for me.

 

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