M.E. Awareness Week: Day 1.

How it all began.

It began on a perfectly normal day. On Thursday January 6th 2011, while other people were busy attending school or work, or trying to lose the Christmas pounds, I contracted viral meningitis. At first it was a headache and a high temperature, and then I couldn’t stand having lights on as it hurt my eyes. Then I got a stiff neck, which was extremely painful.

My mum was worried- this wasn’t your average winter cold or even flu. I was never a sickly child, and I didn’t make up excuses to miss school. She typed my symptoms into the NHS website symptom checker, and within five minutes a doctor had called her back.

He asked mum if I had a rash anywhere on my body, which I didn’t. He then asked if I could remember my name and date of birth, which I could. Next, he spoke to mum without me, and explained the situation. Even though I didn’t have a rash, I had viral meningitis. Viral meningitis is not as severe as when it is caused by bacteria, as the bacteria can cause septicaemia, loss of limbs, and even be fatal. However, viral meningitis can still be very unpleasant.

He told mum to get some ibuprofen down me, as this should bring down my temperature. If my temperature didn’t come down within the hour, I would be flown out to Sheffield Children’s Hospital by helicopter, where I would be placed in isolation.

Fortunately, once I had taken the tablets, my temperature decreased to just within the normal range.  Now it was no longer a matter of life and death, but it was a waiting game. I was told to stay hydrated, clean, and well fed, and I was told to rest in bed for the next two weeks. This caused a problem.

In less than two weeks time I had to sit a couple of exams, one in Citizenship, and one in Biology. Mum contacted my teachers, and my Citizenship exam was postponed until the summer, where I could sit it along with any resitters. However, science insisted that I take the Biology exam, regardless of my condition. I was promised a well ventilated room, with a bottle of water. The exam would only take 45 minutes, and I was good at Biology, so I wouldn’t have to revise very hard.

The thought of sitting an exam with meningitis didn’t even bother me. Despite doctors advice I ploughed on with revision, and prepared myself as best as I could for the exam. Thinking I knew better than a doctor with years of training and experience was not one of my greatest moments, and is also one of the biggest regrets in my life.

The week leading up to the exam is very clear in my memory. Once I could sit up and lean against my pillow for more than a few minutes it became much easier to pass the time. As well as revision, I played games, read books, solved logic puzzles, and listened to music. I distinctly remember leaning back on my pillow and watching a light flurry of snow drift past my bedroom window, the day before the exam. It looked so peaceful. I, on the other hand, was not peaceful, or certainly not on the inside. I was fuming. Why did I have to get meningitis? Why did I get it just before my exams? What had I done to deserve it? Little did I know of what lay ahead.

When the day of my exam arrived, I just wanted to get it done and over with. I wasn’t especially nervous, just anticipating what sort of questions I would be asked.

I was taken to a side room as promised, but the window was jammed shut and there was no bottle of water. I shrugged off my blazer, which was the stuffiest part of my school uniform, and settled down to work. The 45 minutes passed all too quickly, and before I knew it I was handing in the exam paper. I could only hope that I had done well.

I barely had the strength to get into my pyjamas when I got back home again, and I slept for the rest of the day. I never realised how much energy exams took out of you.

***

I returned to school the following week; pale, tired, and simply wanting to put my experience behind me. I only did a part time timetable at first, as this was all I could manage, but gradually I built myself back up to full time. I attended the important lessons such as English, Maths and Science, and then returned to art, ICT, and performing arts.

It was a blessing to be out of bed and distracted from my circumstances, as every time I returned from school, I also returned to bed rest.  Inside, I knew I was still doing too much, but I didn’t believe that it would hinder me, and I wouldn’t even admit as much to myself. The only way I could see my situation was to plough on and push through it- the only way back to health was to force my body back into shape.

After a few weeks, I started doing P.E and Dance again. I didn’t have a doctor’s note to excuse me, and I was worried that my physical fitness was slipping too. I also began to drum again, so that I could perform with the bands I was in. I loved being behind the drum kit; it became a sort-of refuge.

I was dimly aware that something wasn’t right; however this feeling was overwhelmed by a strong sense of crushing anger. I felt I wasn’t achieving my full potential, and I still felt ill. I jealously watched everyone else be healthy and active, and this envy drove me on. I was even disappointed when my exam results came out, and I had “only” got a B for my Biology exam, despite having meningitis at the time. Had I been healthy, I could have got an A, or maybe even an A*. Looking back, I realise what an achievement that B was, in the circumstances, and it is one of my proudest prizes that I have achieved so far. I am also proud to say I refused to re-sit that exam, even though my teachers said it wasn’t good enough.

***

I had been told to allow myself a recovery period of six months from the illness, as my body needed time to recuperate and repair itself. However, six months after the disease, I still didn’t feel any better, if anything I felt worse. I had a constant ache, comparable with the type of ache got with flu, and all over my body. I had a permanent headache, so that sometimes intense light hurt. My back and shoulders were always hurting, and I could no longer rest lying flat on my back as the pain built up to unbelievable amounts. I still struggled with extreme fatigue, as if gravity had been increased or I was wading through thick mud. TV and computer screens could only be watched for a limited amount of time as they made my eyes itch and water. My concentration span and short term memory were also deteriorating by the day.

I was worried, as I was about to sit my next set of exams, and didn’t know if I could cope with them feeling like I did. Therefore, I went to my GP, before things were allowed to get any worse.

“There’s a disease called M.E.”

I saw a GP who I had never met before, and he was one of the rare doctors who is prepared to sit and listen, and doesn’t make you feel inexplicably small. I explained what had happened to me concerning the meningitis, and how I was still suffering from tiredness and other symptoms.

Once he had heard me out, he sent me for some blood tests to eliminate diseases such as anaemia that could cause the fatigue, and contribute to symptoms. He also discussed the possibility of me having a disease called M.E (Myalgic Encephalomyelitis), otherwise known as CFS (Chronic Fatigue Syndrome). There were no blood tests specifically for this disease, so everything else had to be ruled out first.

I looked M.E up on the NHS website. It was then that I knew instinctively that I had the disease. The symptoms matched perfectly, and the way I felt was exactly as it was described. It was now just a case of making sure that nothing else was worsening my condition.

The first set of blood test results came back all clear, and a second set of tests for viral infections also came back negative.

Over the course of the summer holidays I was told to rest, as the only other thing that could be causing my fatigue was exam stress. If my symptoms had not gone by the time the summer was out, I was to return to the GP. This time, I did as I had been instructed, and although I did some gentle gardening and went for a few strolls, I spent the rest of my time sat or lay down, relaxing. I went out on a few day trips with my parents when the weather was good enough. Almost too soon, the summer had slipped through my fingers and it was time to return to school again, and my symptoms had still not cleared.

The week before I was due to return to school, I revisited the GP. He diagnosed me with M.E, and advised that I took ibuprofen and paracetemol to ease the pain. He also gave me a tablet called ranitidine to control the mild acid reflux and nausea I was suffering from. Then, he referred me to the paediatrician and the physiotherapist at the local hospital. The paediatrician would have to do some more blood tests, alter medication as necessary, and most importantly, confirm the diagnosis, if it was correct. The physiotherapist would start me on an exercise programme called G.E.T (Graded Exercise Therapy), which would involve gradually increasing levels of exercise until I was able to do more. It promised to regain my general health and overall physical fitness. In the meantime, my GP said I was to return to him if I had any more health issues.

I came away not knowing how to feel. There is both and an up and a down side to getting a diagnosis. The up side is that you know what is wrong with you, and therefore how to deal with it, using medicines and physiotherapy. The down side is that you have a diagnosis at all, as this means that there is something wrong with you, and in my case, this was incurable. This does not mean that people never recover from M.E, they do, but that there is no medicine or surgery procedure to speed the process up.

I went back to school and settled down to do my final year of GCSEs. It was nice to be back among people my own age group, and to be studying something again, but I was nervous of over-doing it. As the term progressed I became more and more fatigued, and my symptoms grew much worse. I grew weaker by the minute. I missed countless days off, where I was made to lay in bed and rest. I ended up dropping P.E and dance, and eventually French, ICT, PSHEE, and Maths (I passed the GCSE early). I appeared to be failing all that I could achieve, and just had to hope it would all turn out well in the end.

I was also finding that I had an upset stomach while using the ibuprofen. The pains would sometimes be crippling, and on top of everything else, it was hard to cope with.

I went back to my GP, who, patient as ever, withdrew my ibuprofen. However, he could offer me no alternative but to increase the paracetemol, as I had not yet been seen by the paediatrician. Unfortunately, paracetemol does very little for any pain, even in large quantities, over a long period.

Now I was hanging on more than ever, hoping the physiotherapy would do something to help me. My symptoms were getting worse, and I felt as if I was slipping out of reach. No matter how hard I tried, I couldn’t be happy. I could only see the cloud, and not its silver lining, despite being promised that every cloud had one. I couldn’t even remember what happiness felt like, only the meaning of the word stayed with me. I felt guilty too- if I had listened to the doctor when I had had the meningitis, and obeyed him, I might not have got the M.E at all.

Also, the general perception of M.E was not making matters any easier for me. According to most others I was “lazy” and “attention seeking”, even though these were traits I had never displayed before. I was even told that it was all in my head. I knew I was ill; I was trapped inside my body after all. Mum and dad believed me too, as did the GP, which made things a little better to cope with, but I couldn’t prove it to anybody else, and people like to see evidence.

Having M.E was proving to be a lot harder than it looked.

Author: diaryofadisabledperson

My multi-award-winning blog discusses what life is like as a disabled bisexual woman. I have a 1st class honours degree in nutrition from the University of Leeds where I now work in medical research, an achievement which was undeniably difficult to reach. Outside of work I have a passion for wrestling, rock music, and the MCU. You can find me on Twitter, Facebook, and Instagram simply by searching diaryofadisabledperson.

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