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.

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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