My illness began in 1987. I was twelve years old and the school term had started in the September. On a scary Monday morning I woke up, I wasn't the same person. Mum came in to my room as I wasn't preparing myself for school; so unusual, I was keen and lively on a Monday morning. By eight o'clock I would have been playing the piano for 20 minutes before breakfast.
Two weeks later our doctor had seen me twice and had taken various blood samples. A virus was diagnosed, similar to meningitis. I was prepared again for school, but not quite the same person. I became lethargic, but battled on through and it was thought I would 'get over it'
In January, on the first day of the school term I was again exhausted. I woke up in a state of dizziness, blinding pain in my left ear. Another infection, more antibiotics. Another two weeks away from school turned into three months and a fungal infection deep in the inner ear. By this time something else had happened. I was in bed, curtains closed, shocked by quiet, loud noises. My enthusiastic nature had become an exhausted, lethargic, helpless nature; I was irritable, I couldn't concentrate. I knew I was ill, I just couldn't do anything about it.
A paediatric consultant decided I was afraid of school, was being bullied and should go back immediately. Our GP supported us, having already diagnosed my ME, and suggested a gentle approach to help integrate me back into a more normal life. Through the Easter holidays I was getting dressed every day and started back in the summer term. Two mornings a week at school became three, became every other day and before I knew it I was back for full weeks. A day at school needed lifts in cars there and back. The bed would be waiting for me when I returned at four o'clock and I did start integrating back into normal, what was by then, teenage life. Or did I?
I remember weekends in bed, not doing PE because I was 'tired', watching my brother and sister go on a bike ride and me having a quiet afternoon with my Mum. It wasn't the same, I wasn't well. My parents were great, just let me integrate into family life, didn't make a big deal about it. If I needed a quiet day, I had a quiet day, I had numerous afternoons on the sofa watching films, with the volume, brightness and contrast turned down to almost nil! I would fall asleep and no one would bat an eyelid. I wasn't made to feel odd or different, I was me.
Two years later, 1990, it was October half-term, the Sunday before school began towards the run-up to Christmas. I was playing a board game with my Dad and brother. I had my first seizure. Everything went downhill from there. It was the last year of school, mock exams were looming in the following spring and final exams were in the summer. I was a wreck. Everything scared me. I had another reason to miss PE, or have a day off school. My peers didn't understand, they weren't supportive and that just made it all the more difficult and confusing to cope with. There was just one friend who I saw every Monday afternoon, when we were put in the office of the Home Ec. Rooms to 'do our homework' (we would sit and chat for 2 hours!). She was ill too and we had a connection. While everyone else was doing PE we were sharing our woes and found an empathy for each other's situations.
Three years down the line I had attempted college and A-Levels three times. The regime was too much and I realised it early on, I just seemed to think that the only way in life was to do as they all do. Within a couple of months of each start of year I was in bed 24/7, having regular seizures and recovering from...overdoing it. How I hate that term now. "Overdoing it" might seem like a trivial pairing of words. But to me it is a disappointment, a failure, an absolute, epitome of deficiency and inadequacy. Overdoing it gave me bad things. Days in bed, confusions, seizures, humiliation, embarrassment. In those times I relied on others; by believing I could cope for myself, I just showed myself three days later that I couldn't.
In those years I spent months in bed, years without walking more than a few paces indoors or round the garden, I lost three stone in about 6 months at one point. Recovery was always my goal and with my family's support I reached it over time, but only ever so far.
The wheelchair has come in and out of my life twice and I now have it for a third time. I thought it was in my past but yet again two years ago I was guilty of 'overdoing it'. I thought I was becoming a healthy person, a 'normal' just like everyone else, person. Hindsight gives many things. I am sure anyone with ME or CFS will recognise these ideas. Putting those years behind me has been a regular thing through my life. Everyday has been the next step on the path to recovery. I think I may have finally found it. The one catalyst for this has been finally getting a foothold in the door of my seizures. For the first time I can see that by working together with my various doctors a combination of medication has been found which gives me control. I don't have the unenviable task of waking up in the morning and discovering a blinding headache, aching limbs, aching muscles which I'd totally forgotten existed and a memory wiped of the previous evening. This was frequent in the past, totally unpredictably a few times every month, two, three or four times a night I would exercise all my muscles without my knowledge! According to my husband I would also turn blue and decide to hold my breath for 2 or 3 minutes! Now that my seizures are much less frequent flyers I have the starting point. I found that point about 6 months ago. I was trying to keep up to date with friends, I was trying to be a dutiful family member and realised that my idea of putting it all behind me and continually climbing the ladder of health again was not an option. I had to find that bottom rung and sit down for a while, to give myself the stability to start climbing. I had done it in the past, the difference now was that it was my choice and I wasn't being pushed by my carers, my doctors or my seizures; I wasn't doing it with heartache and a feeling of failure. I decided to step back, sit on the floor and wait for calm to find me; I wasn't going to let the illness push me over to the floor. So I did it and I think I'm climbing again... I know I'm climbing again.