Part 1 is available here.
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 Graded Exercise Therapy (GET) 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 insignificant. 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.