CFS – Diary of a Disabled Person.

M.E Awareness Week: Day 7.

In loving memory of Sylvia Everritt, 23rd September 1931 – 9th May 2019, strong matriarch & welcoming to all. She will be missed by all who had the pleasure of knowing her.

C.B.T (finally!).

At the beginning of February 2013, I began my course of C.B.T. The first appointment was the introduction, where I spent twenty minutes arguing with the therapist over where appointments would take place. As dad had to work, and mum could not push the wheelchair, we could not travel out to the CAMHS centre. She refused to do the therapy at home, as this was unsuitable. Eventually, we settled on a school appointment, during one of my free periods. She wasn’t happy, but it was the best we could do.

At this point, she asked my parents to leave the room, and she told me what C.B.T was all about. It focused on the cycles of thought and behaviour patterns. Negative thoughts and low self esteem often lead to unhelpful behaviour. The aim of C.B.T was to break this cycle, so that it did not spiral out of control so easily. It was a vicious cycle of depression.

However, the nurse refused to believe that I had depression at all, and simply said it was a low mood. This was cover for “get over it”. I could understand where she was coming from, but for a GP to refer someone as needing help, simply getting over it wasn’t an option. I needed help. Then, after discussing the cycles for a while, she gave me a sheet to take home and read.

I read the sheet the next day, when I had some space and time to think clearly about it. The sheet talked about activity being a good way to diffuse depression, which was a valid point, but not always achievable with M.E. The sheet then talked about bed resting being the worst thing for M.E. According to the sheet, getting out of bed and exercising more would sort the M.E out in no time. It was like the physiotherapy all over again. There was no way that I could possibly do this, as I struggled to walk around the house some days. If I followed the sheets instructions, the likelihood is that I would have another major relapse, and be set back by months.

On the next meeting, the nurse arrived twenty minutes late due to snow, so had to rush through my appointment in twenty minutes. I tried to bring up the point about the sheet being inappropriate to give to sufferers of M.E, but my point was disregarded as irrelevant. The point was instantly dismissed. It was like talking to a brick wall; anything I said was either ignored, or in some cases completely contradicted. After the rushed session, the nurse gave me the task of setting some goals, for short, medium, and long term.

I set goals about being more positive, having a high self esteem, doing myself proud, making changes for people with M.E, being better at pacing myself, and eventually to settle down with a family all of my own. I wanted to use the M.E as a learning experience. I was certainly different to when it all began. These goals would be the best way of challenging the depression.

On the third session, I showed the nurse the goals I had written, and she approved of them all. She was pleased that I had tried so hard with them. Surprisingly she took the time to read them, and listen to what I was saying. She also agreed that I actually had depression, and maybe a few anxiety issues too, that could be dealt with using the C.B.T. It was extremely pleasant, and the session was very productive. This time, she set me the task of recording my feelings when I got marked pieces of work back, including exam results. She told me to perform this on my strongest subject, biology, as this was the easiest one to be positive about.

I did the task as asked, which included the result from the exam in January (a B, pleasingly). However, on the fourth session she was back to her normal self, and barely even glanced at the work I had prepared.

I was in two minds as to whether I continued the C.B.T at all, but there were one or two useful things that I could gain from it, so I stayed as open minded as I could. My GP agreed that when it got to the sixth session, which was a review, that I should say that I was able to continue on my own, and be discharged from CAMHS. This I did successfully, and although the C.B.T hadn’t done much for me, there were one or two small things in place that helped me. The best of these was the ability to think calmly and rationally in a difficult situation, and I was never quite so negative on myself again.

Life was beginning to look up.

The Start of the End.

Even thought I was beginning to feel better, I had applied and qualified for the higher rate of DLA, as I couldn’t walk fifty metres without support. This also meant that I was allowed to have a blue badge, which made car parking a lot easier. It was a good feeling to be supported and listened to, after all my trouble with school.

Now that I was recovering, I had to be extremely careful to resist temptation, and not do too much. It was much harder to rest when I felt good, than when I felt really ill.

What I could use my energy for was thinking clearly about my experience of M.E, and to use it as a learning curve.

I’d learnt how to pace myself much better, and to be more patient with myself. It didn’t matter if I failed at something first time through, there was another chance. I had to accept that sometimes I needed help to accomplish things, and that was nothing to be ashamed of.

I’d learnt that I was stronger than I looked, and tougher too. I could take a lot of pain and illness before I began to crack, and even then, with a little help, I could push through most of it.

The importance of true friendship had become visible to me, as well. It was no good hanging around with someone who was a good laugh, if I didn’t feel that I could trust them. My new found friends were better, and much more trustworthy. I could talk to them about faith, illness, and misery. I also learnt that being a good friend was essential too. I had to be the shoulder to cry on sometimes too. To my surprise, I soon grew to love this role, and found that I really cared if my friends were upset.

I’d also learned that money couldn’t buy everything. It couldn’t buy true friends, or family, or good health, or happiness. Money was nice, and it could pad out the life with small luxuries, but it never did any good. The things of true value were the feelings of happiness and pride, and the love that I shared with friends and family.

Last of all, I discovered that it was OK to be “faulty”. I didn’t care what people thought of my looks, my taste in music, my “geekiness” (which I actually came to love), or my disability. The people I wanted to think good of me were the ones I cared about. If they liked how I was and could overlook my faults, then I was fine.

As well as my past, I looked towards my future. I dreamed of a complete education, and a good career. I also yearned for a relationship, someone I could trust & not feel ashamed of them seeing me at my worst.

***

Unfortunately, mum was still very ill, and had reacted to the tablet used to control her overactive thyroid gland. There was no replacement. She now had to suffer the weight loss and sickness; while waiting to see if there was anything else the doctors could do. There was a suggestion that radioactive iodine could be used to kill off some of the gland, forcing it to produce fewer hormones. This would mean that mum had to be kept in isolation for a month, but once it was over, it shouldn’t trouble her again for the rest of her life. Her health was monitored, and nothing was done for the time being. There was still a chance that the disease would correct itself of it’s own accord. Stranger things have been known.

Still, whatever happened, we would be a family.

The Ending.

I used the DLA I had earned to buy two walking sticks and a mobility scooter. I used the sticks round the house, and for trips out into the back garden. With the sticks my balance was much steadier, and I could walk further. I felt safer too. The mobility scooter gave me the freedom to travel out on my own. I could go to shopping centres, and visit one shop, while my parents went in another. I also enjoyed many trips around the park, where I could lose myself in my thoughts, and take in the views. It took a while to get used to the stares and daft comments of others, but I was soon able to cope with it. The freedom it gave me was well worth any negative behaviour.

I finish writing this maybe not quite at the end, but near it. The M.E is burning itself out, and eventually will leave me. I have at most a year to go, maybe even six months. My returning health is due to many things, including patience, good health care, and a positive attitude. I have many things to go ahead and achieve.

Mum is still ill, and will always remain so. With the support and medical care she needs, she should be OK though.

The end of the road is in sight for the M.E, and maybe this means so for the depression too. Someday, all this will be behind me, and I will be leading a normal life, hopefully as a wife and mother. I have learned a lot, and forgotten little. This has been the hardest lesson of my life; far tougher than anything A-level maths could throw at me (not to say that A-level maths was easy. It was just easier)!

This is what I need for my story; an ending full of hope and one or two loose ends. However, I can assure the reader that all these loose ends will sort themselves out over time. They always do.

Edit: Obviously I didn’t recover as I had hoped. I clung to this hope for far too long but once I had admitted to myself that recovery wasn’t certain, I actually felt a lot more positive about my condition. It took many years following on from this point, but eventually I learned to accept my lot in life and carry on.

M.E Awareness Week: Day 6.

Relapses.

Mum’s illness was progressing, and it affected her everyday life. She was told that the overactive thyroid gland had caused irreversible damage to her diaphragm. This in turn caused breathing difficulties with the asthma, as the diaphragm was not able to contract and relax fully. However, mum pushed on as normal. She didn’t have much choice, as the workload was affecting me badly.

While the schoolwork relieved the depression greatly, the physical aspects of M.E did not improve. I had managed to push through to the first few weeks of term, until eventually the M.E kicked off. I woke up feeling horrendously sick, and my muscles ached as if I had run a marathon. My back was screaming from the pressure applied on it from the mattress. I rolled onto my side, despite the pain, as I knew I had to ease the back ache before it got too much for me to handle. I opened my eyes, and even in the dimness of my room with the curtains drawn, the light burned into my eyes. It felt as though my skull was on fire. I couldn’t believe the state my body was in. I hadn’t realised how much stress my body was under, and now it was out of control. As I lay there, I thought about how well I done to get so far through the term without any time off. However, this didn’t ease the terrible guilty feeling in my chest that I would be missing important lessons. I couldn’t begin to imagine how I would catch up on all the missed work.

I forced myself to sit upright and get out of bed. Slowly I made my way down stairs, and got a coffee. I thought that a caffeine boost might lift me out of this dreadful state, and that I would be able to attend school. Ten minutes later I was back upstairs, having somehow managed to climb back up them. They felt like a mountain. I crept into mum and dad’s room, sank onto the bed, and burst into tears. They were quiet tears, as I didn’t have the energy for anything else. Mum took one look at me, and phoned me in sick. “Yes, I was far too sick to come into school. I should be commended for doing so well, not criticised for needing time off.” I hobbled back to my room, and fell asleep in my own bed.

Several hours later, they felt like mere minutes, mum woke me up with a drink. I tried to sit myself up, but couldn’t. My arms physically wouldn’t take the weight and trembled continuously. My back pain limited my flexibility. All I wanted to do was curl back up and fall asleep again, but I needed to drink something. Mum put her arm around my shoulders, took one hand, and between us we managed to get me upright. I slumped back against a pillow, which had been leant against the bed head. I hated to feel so dependent on others, and I felt guilty again, this time for making mum do so much when I knew she shouldn’t. I drank the tea while it was still warm, and then sank back under the covers for another sleep. I couldn’t sit up much longer as it was exhausting me.

The day passed in a haze of pain and depression. I was lonely and bored. I hadn’t been able to pass the time with reading, and my head hurt too much for music. I hadn’t eaten much either, as lifting the spoon up to my mouth and chewing took far too much energy. This meant I didn’t have any fresh energy for the next day, and had to take that one off school too. This did the depression and rising feeling of anxiety no favours, and the high stress made it harder to recover from the M.E. However, on this second day of relapse I could eat slowly, and read. I listened to my MP3 player. Music was a huge escape to me, as I could relate to it extremely well. It was the most effective way of relaxing.

Now that I was more relaxed I slept well. The next day I got up, all be it shakily, and went to school. I managed to collect all the work I had missed, and that weekend I ploughed through it all.

These relapses now began to repeat themselves every two weeks or so, sometimes requiring two days, sometimes only needing one. Every time I managed to get back, and get up to date with the work I had missed.

At around Christmas time (2012) things seemed to pick up. Despite lots of revision for the upcoming January exams, I got lots of rest, and didn’t have a relapse at all. When I returned to school, I got the exams done, and found that I was beginning to have a lot more energy on a daily basis. I could do more, and not experience any more fatigue or pain than normal. I stayed out to rewards ceremonies, and could attend school the next day with positive ease.

My medication had been altered a few times to relieve pain and nausea, and now it seemed to be working excellently. There were days when I felt worse, and there were days when I felt very well, but most of the days were spent on the edge of discomfort, content enough to plough through the days. However, the depression did not lift as I had been expecting, and hung over my mind like a dark and endless cloud. Seeing the positive side to anything became as hard as studying any A-level. Still, I told myself that CAMHS would surely be contacting me soon about the C.B.T, and then everything would ease up.

Now that I appeared to be healing I had to be careful not to push myself too hard. The temptation was to use my new found energy to the full, and not store it up. It was a hard impulse to resist, especially after not having energy for so long. However, I resisted, on the grounds the quickest way to good health was to rest up. I did allow myself one extra exercise though, and that was drumming for fifteen minutes at the weekend. I loved drumming. Being behind the drum kit gave me a feeling of safety and protection, as well as knowing that it was something I could do to a reasonable standard. There was no one judging me behind the drum kit, except the odd person telling me how unladylike I was. I loved being able to rebel slightly; I have always been one to break the mould. It was glorious. For those few precious minutes, there was no pain (there was when I stopped!), and no one could hurt me. I looked up to drummers like Harry Judd (McFly), Ronnie Vannucci (The Killers), Phil Collins, and of course Tre’ Cool (Green Day).

Two long years had passed now, and I had been ill for all of that time. Still, I could feel myself returning to my almost former self, but I knew that the M.E had changed my perception of the world. I was not so arrogant, and I was more aware of the dangers the world throws at people. I was ready to become a healthy teenager again.

M.E Awareness Week: Day 5.

The Return to School.

CAMHS had been informed of my suicide attempt of course, but we still had no response from them. It was a case of biding our time.

By this time mum was seeing countless doctors and specialists, and I had completely lost track of them. I could barely keep track of my own existence. I only knew that mum had occasional asthma attacks, and the overactive thyroid was causing the odd bout of weight loss and sickness, but again, it didn’t appear to be too drastic.

I decided to return to the same high school, despite my previous treatment. The teaching standards were high, and I knew that I could make new friends, who would be trustworthy and kind. After a few weeks fighting, the school agreed to give me an assistant to help me in lessons and around the building. I would be taking AS-level Maths, Chemistry, Biology, and Physics; I would need help with experiments, and fetching equipment and books. I would also need regular access to painkillers, as I was stepping up the work-load by a huge amount. I would also need someone to befriend me over the first few days as I tried to make new friends. I found it hard to trust new people, so the first part would be rather lonely.

The only problem that remained was transport to and from school. Mum still couldn’t push the wheelchair because of her bad asthma, and Dad worked 30 miles away. We applied for council transport, but we were turned down due to a lack of funding, even after appeal. The reasons stated were “not being able to get down (our) road”, and “(I) didn’t legally have to be in education”, as I was over sixteen.

School refused to help at first, so we relied on other people to push me back from school. Dad managed to push me in every morning. The friends in our community helped greatly, but most of them had children of their own to pick up, or were elderly, or had jobs to attend. School frustrated me, as they expected me to get straight A’s, but refused to help me at every little step. Having to fight for the smallest of resources put a huge strain on me, and I knew that if it continued for much longer my grades would really begin to suffer. Then, to add insult to injury, I noticed how school helped the kids who didn’t work, and who purposefully underachieved. They got transport to and from school despite perfect health, and trips out on a regular basis. It seemed really unfair.

Eventually, schools health and safety officer noticed how bad our situation was becoming. He looked over legal forms, discussed financing, and after plenty of arguing with officious members of the admin team, it was decided that one of the care assistants could push me home every night, if dad pushed me in every morning. This arrangement was perfect and worked smoothly. It was a great relief to us

The assistant who was given the job was kind and friendly. She enjoyed pushing the wheelchair as it gave her a break of fresh air every evening, before returning to staff meetings.

As soon as this was all arranged, my school life became a lot easier, and I began to really enjoy my lessons. I was doing subjects I enjoyed, and didn’t have to bother with the things I didn’t like. My carers were happy to help fetch and carry equipment for me, and were thrilled to aid me in experiments, which were often fun. They became friends, and I could talk openly with most of them.

As time progressed, there were a few issues with lesson lateness, and access to respite care, but these issues were resolved as speedily as possible. They were annoying while they lasted; but all of a sudden school had become a lot more willing to support me. Maybe they had recognised how much effort and care I put into my work, but maybe pressure had been applied by the head teacher to support me more. I never found out, to this day.

My old friends mostly ignored me. This hurt me of course, but as I made new friends, I soon realised what a false friendship ours had been anyway, and was glad to be well shot of it. It did pain me to see how little I mattered to them, but my new friends were supportive. We were a mixed group; it was wonderful to be surrounded by such diversity.

In class, I had friendships with people who shared the same passions with me. I bonded best with the other girls, as we were distinctly in the minority, as was to be expected. However, most of the boys were nice too, and I formed some strong friendships with them. Very few of my class members judged me, and I returned the favour by not judging them. We were from all different backgrounds, and lifestyles. We were all different. Yet we all shared similar interests. The new found friends greatly eased the depression, and my studies distracted me. I threw myself into them with all the vigour that I could muster up. I had found happiness again.

I loved my subjects. Despite miserable grades at the beginning (D’s and E’s), I still found enthusiasm and passion for them. I felt that for someone my age, in my condition, I was doing well.

Maths was hard, and not all of what we learnt was useful, however, I learnt lots of logic skills.

Physics was a very small group, 4 of us all told. This meant we got a lot of attention of the teacher, and we had a lot of fun. The seemingly ridiculous ideas and theories that Physics proposes became perfectly sensible to me.

Chemistry was mostly about industry, and was both useful and interesting. I found plenty of time to practice my logic skills, and also developed a lot of memory aids, as Chemistry required quite a bit of memorising equations.

Biology was my favourite. It opened a door to me; there were things the human body could do, that I never even had dreamed of. I saw how beautiful and precious life was. I learnt how a single heartbeat is controlled, how disease spreads, the inner workings of the lungs, and the digestive system. I studied DNA, microbes, plants, animals, taxonomy, epidemiology, and humans. I was in love. I didn’t want to leave the lab at the end of the lesson, and often went home and studied hard. It never felt like study because I loved it so much, I knew that this was what I wanted to do as my career, for the rest of my life.

It was a relief to my parents that AS-levels were such a joy to me. For the first time in just under two years, I was happy. I actually wanted to get out of bed and attend school every day. There were rough patches, but the good outweighed the bad.

M.E Awareness Week: Day 4.

TRIGGER WARNING: Please be advised that this post contains explicit details of how & why I attempted suicide. If you are affected by issues surrounding mental health, please refer to mind.org.uk for help.

From Bad To Worse.

By now mum had become very ill, but over the period of the summer, her asthma was not too troubling. Her overactive thyroid still caused issues, and fluctuated. She often felt tired and sick, but with the care of our good GP, and the endocrinologist, she seemed to be as healthy as possible under the circumstances.

Mum was always very determined to get through illness, and carry on as normal. Even when she was feeling really bad she would get out of bed and continue with the housework. This encouraged and inspired me to do the same whenever it was possible. She was the rock at the centre of our family, who supported and cared for us through the bad times as well as the good. She kept the peace during family rows, and supported me through my friends’ rejection.

Being left alone so suddenly had caused a lot of pain, and the sadness did not ease as the summer passed. In fact, the longer the silence went on, the worse I felt. I yearned for teenage company, face to face, as I had no brothers or sisters. I had AYME, but it was harder to type a message about it than talk freely.

***

At the end of June, I was given an appointment to go and see CAMHS. There, I met a psychiatric nurse and a social worker, who interviewed both me and my parents about the depression.

I explained my situation; that my depression was prominent but stable. I asked for some help controlling it and potentially overcoming it, as beating depression is virtually impossible to do without some form of support. In times of sheer desperation all I could think about was that I wanted the pain and the misery to end that very instant and never come back. It was impossible; the only way out was death. Suicide. I didn’t want it to come to that, but the thought kept haunting me. I didn’t mention this because it seemed silly and pathetic. I told CAMHS about how I felt like a failure, how I was angry about being ill, and how I blamed myself for my mums’ illness. My reasoning was that if I hadn’t fallen ill, and listened to doctors’ instructions, then the stress of looking after me would have saved mum from illness. I left out the part about my friendship situation; I wasn’t comfortable to talk about that. It was still too painful to me.

My parents stayed in the room with me, and were asked about my school and social life, what our home life was like, my behaviour patterns, and possible triggers.

At the end of the session, it was agreed that I should start a therapy commonly used for M.E patients called C.B.T (Cognitive Behavioural Therapy). It looked at thought patterns, and how they tied in with behaviour and emotions. It addressed the issues faced with depression, and aimed to get the patient thinking clearly, logically, and positively. It appeared to be a very good idea.

It was too good to be true. I was placed on the waiting list to receive C.B.T, and waited several months to hear anything at all. Once we did hear something, appointments kept getting cancelled, for lame excuses. It looked like I would never get the C.B.T after all.

There was a more present concern, however, and this preoccupied my mind for the rest of the summer.

The depression wasn’t as stable as I thought it was. I would break down in tears for no apparent reason, without even the tiniest trigger. I would become suddenly very angry and was easily irritated beyond control. I felt permanently useless, worthless, lonely, unwanted, angry, confused, hurt, sad, and downright miserable. I hated myself, and began to punish myself. I would scratch into my wrist with my fingernails and keys, drawing blood and leaving permanent scars. I managed to hide this from my parents by hiding the scar under my watch, a bracelet, or a long sleeve.

I spoke to others on AYME, and although they gave me a little boost, I would soon go back to feeling depressed again. I was trapped in a haunting reality with no escape. It was far too real to hide from, and it was far too strange and embarrassing to talk to people about. I kept my feelings clutched to my chest, where no one could see them, and use them against me. Depression is stereotyped and mocked at by teenagers and young adults. It is laughed off. Yet, for those that have it, it is no laughing matter.

Rock Bottom.

It was a mild and sunny day in July when it happened. I had been feeling particularly low for about two weeks, and the constant misery was taking its toll. I had heard nothing from CAMHS about the course of CBT, and I was still suffering the cold shoulder from my friends.

I was desperately lonely because of this. My estate contained very few teenagers, and those that did live there didn’t know me. I couldn’t even get out for a walk around the park. Loneliness leads to a dreadful, empty boredom that seems to stretch on forever. I began to brood again, and couldn’t stop thinking about the meningitis and the M.E. It didn’t seem fair. The poor treatment at school, mum’s illness, the silence from CAMHS, and my friend’s rejection ate away at me. I couldn’t see a possible way out, and felt cornered.

I remained uncommunicative about my thoughts. I thought that they were shameful, and that if I kept them to myself they would eventually go. Instead, they plagued me on a more regular basis. My parents didn’t know the way I felt, neither did CAMHS, or anyone else for that matter. I even kept it quiet from AYME.

All I could think of was how I wanted this journey to be over and done with. I wanted it to be behind me and forgotten. I was always one for a challenge, but this was too much. I was in too deep this time. The pain, grief, anger, confusion, misery, torment, and darkness was with me all the time, even during sleep. My dreams were sad, and full of friends’ faces- friends I no longer had. When I woke the pain was as fresh and prominent as ever.

I was sat in my room, as usual. There was some music playing in the background, but I wasn’t really paying it any attention. I was picking at the scar on my wrist, brooding, when the thought came to me. There was a way out. It wasn’t pleasant, and it would be regarded cowardly by some, but what did it even matter anymore. The thought was of suicide.

I wasn’t overcome with a tidal wave of emotion. There was no guilt, pain that it had come to this, or even misery that this was how it had to end. I felt numb. Being numb was sweet relief after all my confused emotions, and it was wonderful to feel so calm and tranquil. If anything, the only thing I did feel was hope for escape. The answer to my problems had been provided for me in one, glorious brainwave.

I ambled down to the kitchen, trying to look as aimless and inconspicuous as normal. I didn’t waste the time to write out a note; not when the end was so close. I pulled a glass out of the kitchen cupboard, and filled it with water. Then, I reached into the cupboard, and got the tablets. I wanted to do it this way because I would fall asleep, and my body would just forget to wake up. I would slip away quietly, in a warm haze of drugs.

Mum knew something was up. There was an atmosphere of calm that was unusual, and also an air of determination, something I had been lacking for a long time. She came through to the kitchen, and before the first pill had even reached my mouth, the packet had been wrenched from my hand, and the water was falling down the drain.

I tried to fight back, but all of a sudden I couldn’t seem to find my motivation or enthusiasm. I was back to the dark, lost way of life. Instead, I crumpled up into a heap, and cried. They were tears that had been held in for years. They were tears of frustration, and anger, and pain. They had been bottled up for years.

As I sat there and cried, mum phoned the CAMHS office for help, but apparently there was nobody in and help was refused. I was beyond caring. I was such a failure that I couldn’t even carry out suicide, and I didn’t want some nurse questioning me about it.

It would be a long and tiring haul. It would be endless hard work. However, I had to beat the depression. I couldn’t give in to it now. Billions of people suffer illness, deaths of friends and family, famine, poverty, war, abuse and much more besides, and they all pushed through it.

So I would too.

I would need support, love, care, and trust, but I would get there. It would just take time.

M.E Awareness Week: Day 3.

AYME.

A website popped up, headed AYME. There was some information about the disease; it’s diagnosis, possible causes, and treatments, as well as some information about the website itself. It was a chatroom similar to Facebook, and aimed at children and teenagers with M.E. They were a charity who operated the website, sold books about M.E, ran a helpline phone service, and a postal service between members of the forum.

Within a month I had signed up, received my membership, and posted for the first time. I was welcomed by lots of people of all ages up to about 25.

AYME had five main categories where you could post.

The first was Chat; here people talked about the lighter side of life. There were discussions about fashion and hair, sport, hobbies, books, music, shops, and there was the usual banter between friends. We could send each other “Get Well Soon” and “Happy Birthday” messages, and it was an easy way to access support when we weren’t feeling very well.

The discussion forum was used for more serious topics, such as diagnosis, medical practitioners who mistreated patients, religious beliefs, financial affairs, relationships, work and school, and all about how the symptoms of M.E could affect everyday life.

Education and work was used for talking about CV’s and job applications, options for school, home tutoring, and everything else to do with school and work. It was here that I discussed my options for AS-levels with other teenagers who were older and more experienced than I was, and I managed to help plenty of people with their GCSE homework, in particular Maths.

Then there was the medical forum, where different therapies and treatments were discussed. Medical reports about M.E and research into it were commonly posted there, as well as people asking for help with medication, physiotherapy, and whether using a wheelchair was the best thing to do. I found out that eating small amounts regularly, mainly savoury carbohydrates such as pasta or wholemeal bread could boost my energy, and maintain it throughout the day. I also discovered that a back massage or hot water bottle was useful for easing muscle pain. A hot shower was also capable of easing pain. Then, I managed to find lots of other sufferers who had received G.E.T, and gone through exactly the same as me. We agreed that G.E.T shouldn’t be used as a treatment for M.E, as nine times out of ten it failed, and the rest of the time it never made any improvements.

Finally, there was the thread for Games. We played lots of little word games, such as anagrams and forming lots of new words out of one old one. We asked each other silly questions, and dared each other to do daft things. We had the freedom to act like the children and teenagers we were, despite having M.E.

AYME became a lifeline to me. It was essential support, and a very important charity. It did very good work.

I received letters from other members of AYME via the special postal service on a regular basis. It was very welcoming, and cheered me up when I felt sad. I kept every single one, and stored them in a box of special memories, photographs and diaries. They deserved to be there. I often rifled through this box whenever I felt lonely or disheartened by my circumstances, and they often revived my spirit. I was amazed by the help and support, and I was glad because I was able to help other sufferers, even if they lived on the other side of the country.

There was never any cyber-bullying because AYME was monitored by adults. It was expensive to do, but it made the site a lot safer than Facebook or Twitter, where a lot of AYME members got bullied just for having M.E.

AYME was the single best thing about having M.E, because I would never have found it or be allowed to join without suffering from the disease myself. It provided the much needed friendship and support I had longed for, and I was able to advise others too. It was what I had so desperately needed to keep me pushing through the disease, which at times took an awful lot just to find the motivation to keep on going. AYME was everything to me in my hour of need.

School.

Mum had lots of blood tests and appointments at the GP that January. It turned out that she had an overactive thyroid gland, which caused the weight loss. It would also cause spells of where her body temperature soared, and then plummeted. Her hair began to thin out drastically. She was referred to the endocrinologist at the hospital, and with a little trial and error they managed to give her the correct dose of medication to stabilise the condition. For the time being her weight was stable, she even managed to gain a little.

Mum was still struggling to breathe, although the chest infection had cleared. She was diagnosed with asthma. Not only did she have to take two different inhalers, she had lots of tablets to take as well. Some widened her airways, others were anti-histamines. She was advised not to hang clothes outside to dry in the summer as pollen would get caught in them and irritate her lungs. She was also banned from pushing the wheelchair, as it was hard work in our sloping and hilly city. The strenuous exercise would do her far more harm than good. However, the asthma seemed to settle down, and life became a little more peaceful.

***

As the time passed, and Easter 2012 approached, the M.E seemed to get a lot worse. Even on my reduced timetable I was struggling, and had to take lots of time off. This meant I missed a lot of work, and then I had to do extra to catch up. This would then cause further illness. It was a vicious cycle. I had a poor concentration span, and weak short term memory. As always, I suffered from the back pain and headaches I had had since the meningitis over a year before.

The longer I took off school, the more frustrated I became. Missing lessons meant I missed some vital information from the teachers, and my final GCSE exams were fast approaching. I also missed my friends when I wasn’t in school, and when I was in school they wanted to walk around at breaks, so I was either left out or making myself ill again.

When I was at home, ill, I began to brood. I had spent over a year of life in illness, and felt no better. It was a year that I felt was wasted. It should have been spent being a teenager, fooling around with friends, and enjoying the last carefree years of my life. I would never get the time back, and I was still losing precious time. As far as I could see I was failing everyone, as well as myself. The expectations for my GCSEs were extremely high, and the pressure was incredibly hard to cope with on top of everything else. I felt useless, and worthless. My self-esteem was non-existent. I felt rejected, hurt, angry, lonely, confused and depressed. I had forgotten what happiness was, and how it felt.

I went back to my GP, and after talking for a while, he said I had depression. He referred me to CAMHS, a child mental health service, and then could do no more. I couldn’t start taking proper anti-depressants whilst using the amitryptiline, and couldn’t use them as anti-depressants until I was seventeen.

As my physical health deteriorated, I became more dependent on my wheelchair. Eventually, I could barely walk without it, and was denied the use of it around school for “health and safety” reasons. This meant that my attendance got even worse, but school just shouted at me and told me I was being lazy and attention seeking. This, of course, did nothing to lift the depression.

Eventually, dad would drop me off at school in the wheelchair, and mum would pick me up in it, while I walked around school all day. Mum had no option but to pick me up. Any friends in the community worked, or had children of their own to pick up at this time. Dad worked in Rochdale, and he was the only one well enough to bring in money, so he needed the job.

My depression grew worse, and I was still waiting to hear from CAMHS. No one could see how desperate our situation was, and how unnecessary it was, too. If people just compromised and helped me, I could improve my attendance, and keep everyone happy.

I asked about using my wheelchair around school again and again, until eventually they got so sick of my pestering that they had to comply. It wasn’t the best way to get it, but it was essential. However, school simply refused to give me an assistant to get me round the school. This meant my friends had to do it, and I had no access to the disabled toilet. I was also told that I had to sit my exams in the main exam hall, despite the fact that there wasn’t decent wheelchair access to my table, which was in the middle of the exam hall. This increased my stress levels before an exam immensely, which didn’t help.

I was finally rewarded extra time in my exams because I couldn’t write fast enough without hurting my wrists and my concentration level was very poor. As I was in the hall with everybody else, that meant that they were talking and clattering about as I finished my exam, which destroyed the advantage of extra time. I was jeered at and catcalled too; told that I was clever so didn’t need the extra time. According to them, I was also pathetic. Still, I did the best I could possibly do, and I knew that when I put the pen down at the end of each exam I had done all that I could. There was no more to do.

I was in my final GCSE year; therefore I got full exam leave. The worries about extra time, wheelchair access, and assistants evaporated into thin air. However, a new problem reared it’s very ugly head.

Whilst I had been in school, I had been able to keep close contact with the girls I called my friends. However, now that I was out of school, there were no text messages, no phone calls, no emails, and no visits. I tried to make contact with them, but to no avail. I couldn’t go and visit them as Dad still had to work, and I couldn’t let mum push me to my friends’ houses when it was so unnecessary. I kept telling myself that the next day I would hear something, but I never did.

It was devastating. I often wondered if I had done something wrong, and kept wishing that my friends would tell me and that it could all be put behind us. The stony silence was eerie and cold. Was I really that lazy and attention seeking girl that everyone else said I was? Was that what my friends saw me as? Had I said something, or done something to hurt somebody?

I spoke to others on AYME, and they provided the best support that they could, however, they couldn’t bring me everything that face to face friendships could.

I was heartbroken. What should have been the best summer of my life, was once again wasted in pain and misery.

M.E Awareness Week: Day 2.

Wheelchair?

When it came to October half term, I was more than ready to see the physiotherapist, and start the programme. I was looking forward to a feeling of less pain and more energy, as I had been promised.

The physiotherapist herself was quite brusque, but to the point and matter of fact. She discussed my current abilities, how far I could walk unaided, my limits, and what happened if I exceeded them. She asked me how long relapses lasted, and how often they occurred. She also inquired as to pain levels, and where the pain focused. After about half an hour of talking, she got me to do some step-ups and star jumps. I could manage about ten of each.

When the appointment came to an end, she said a letter would be posted to us containing a physiotherapy and hydrotherapy programme. I was to ring up with any questions, and return for an appointment in a few months time. Then, as we were about to leave the room, she called us back.

“One more thing,” she said, “It might be worthwhile to purchase a wheelchair for use over long distances.” I was never to use it on a daily basis, or around school, but it would free us up at the weekends. The NHS would only be able to lend us one, and as I might need it over a longer period, it would be better to buy one that we could keep and use for as long as we needed to. I wouldn’t be able to self-propel the wheelchair, I would need an assistant. If I pushed myself, I would be taking the weight of both me and the wheelchair on smaller muscles, and this would only fatigue me more.

I nodded at this insight, but can’t say that I took it in at the time. It wasn’t until a few days later, on actually purchasing the wheelchair that I realised what was happening. I didn’t think that using a wheelchair would be at all problematic; if anything I thought it would be fun.

When the letter came containing my physiotherapy, I was surprised at the rate at which I would be increasing exercises. Once a week I would increase each exercise by a time of thirty seconds. The exercises were to be done every single day of the week, without a break. The hydrotherapy increased at a similar rate, although it wasn’t such heavy exercise to begin with.

At first, the exercises seemed to make me tired for an hour or two, and then the fatigue wore off. However, after the first couple of weeks pain began to build, and I had to give up the exercises one day a week. I decided to increase the exercises once every two weeks as well, hoping this slower pace would rectify the issue. After another two weeks, I was still no better. Mum phoned the physiotherapist, but I was instructed to continue as I was, and that it was just a bad patch. I trusted the physiotherapist, remembering what had happened previously when I ignored a medical professional’s advice.

I carried on, telling myself that I would just have to break through the pain barrier. I was disheartened to find that every time I pushed through one barrier, I came up against another, even harder one. Eventually, I could take no more, and was forced to stop the exercises completely. They were too much for me to cope with.

For the short time I tried it, the hydrotherapy was blissful, as the water took my weight and relieved my pain. It was an oasis of relief, for two hours a week, and very welcome to me. However, once the G.E.T had destroyed any health I had, I could no longer continue with my hydrotherapy.

The problem was, even when I had stopped, my health continued to deteriorate. I was therefore discharged from the physiotherapy department.

Now that I was in more pain, I was also using the wheelchair a lot more often, over shorter distances. The reality of being disabled became frighteningly clear.

On crowded shopping days, people would push past me, ignoring me completely. I had my ankles kicked as people stepped over the front of my wheelchair, and I had to duck to miss several handbags and shopping baskets that were swung across my face. Doors were often allowed to swing shut in my face, and I was spoken to like a two year old. That was, if people spoke to me at all. Lots of people spoke to my parents, but ignored me, on the basis that having a wheelchair made me phenomenally stupid. Several shoppers would stop directly in front of me without any warning, not realising that the wheelchair was not so easy to stop suddenly, and then complained when they got bruised ankles. I seemed to be invisible. There were occasions where kind people would stop and hold doors open for me, or pass me things that were out of reach. Often enough, these were other disabled people, who suffered from the same problems as I did. One particular wheelchair user gave me tips about getting in and out of lifts- she said it was easier to go in backwards and come out forwards, as when you came out, you could see where you were going and who was stood in your way. Also, she told us about getting into lift queue’s first; as it was rare that people would share a lift with someone who was disabled if they could possibly help it. There were numerous times when I wanted to yell at people that I was a human being too.

The highlights of my shopping trips soon became when people flashed me a smile; this happened so little that being acknowledged at all seemed nothing short of a miracle.

***

It was about this time that mum began to lose weight. She was small anyway, and hadn’t done anything special to lose weight. If anything, she was trying to gain a few pounds. It was just another small worry among many, which got overlooked. Mum had had spells of losing weight before, and it had never amounted to anything of consequence. So, we simply kept an eye on it, just as we always had done, and pushed it to the back of our minds.

A visit to the paediatrician.

Mum developed a severe chest infection the week before I was due to visit the paediatrician, so she couldn’t come with us to the hospital, where she was likely to spread infection. She had visited the same GP that was treating me, and he had sent her to get an x-ray. The x-ray showed us that half of her left lung was completely filled with mucus and bacteria. She was given anti-biotics, and was asked to rest. Then she was told to return to the GP after the infection had cleared. We had to be extra careful not to give mum any more health issues, and now the weight was really beginning to drop off her, we were worried.

***

I managed to walk from the car park to the waiting room, as it wasn’t far. My appointment was with the head of the department.

When I went in, I told him what medication I was taking at the time, about my pain levels and the failing physiotherapy. He did a physical examination, and then confirmed my GP’s diagnosis. Next, he referred me to the nurse to have a few more blood tests done, so that he could see that there was absolutely nothing else wrong with me, which could worsen the symptoms. He prescribed cocodemol for the pain, and dismissed me.

***

The next day I started on an adult dose of cocodemol, and went to school as normal. Less than an hour later I was sent back home again with crippling stomach pains.

Mum took me to the emergency doctors later on that day, by which times the pains had subsided. I was checked over, and it was agreed that the cocodemol had caused these symptoms, especially as I had taken no more, and the pain had all but ceased. I was advised to stop taking them. Nothing else was provided as a substitute, so I was back to square one- the waiting game.

The following week I revisited my GP, and explained my desperate need for painkillers stronger than paracetemol. We still hadn’t heard anything from the hospital about my blood tests. My GP was concerned about me, and wrote to the hospital, asking whether I could start taking painkillers called amitryptiline. He could not give me these without permission from a consultant. Amitriptyline is a very general drug used to treat pain and mild depression. He also asked for the confirmation of my diagnosis in writing.

The next week we received the letter confirming the diagnosis, and instructing me to start on a course of amitriptyline, at 10 mg per night. Each week I could increase the dose by 10 mg a night, until after five weeks, I was at the maximum dose of 50 mg. It wasn’t advisable to start with this dose all in one go, because amitryptiline is known for making people very drowsy.

After five weeks, I was on the full dose, and my levels of pain had decreased miraculously. My life became a lot more comfortable, and I could begin to enjoy myself more on a daily basis. Although the drug made me drowsy at first, it was worth the sweet, and long sought after relief.

In all of this I was lacking for only one thing. Someone who could share their experiences with me and help me, and somewhere I could talk about the M.E with other sufferers. Someone I could share a common issue with, and get some understanding. My parents were supporting me well, but they could never truly know what the M.E was like, without having it themselves.

I was looking at M.E on the NHS website, and ways to cope with it, when I noticed a hyperlink called AYME (Association of Young People with M.E).

I clicked on it.

M.E. Awareness Week: Day 1.

How it all began.

It began on a perfectly normal day. On Thursday January 6^th 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.