• Rosered - My Story

    I don't know whether my story will depress you or give you hope. I guess it depends what your own starting point is. It is meant to give hope to those of you at the bottom end of the scale.

    It was 1982 and I was 14 when I caught Glandular Fever, I guess that was the end of one bit of my life and the start of the life I now have. Looking at the AYME chart I guess I was in the 20-30% bracket for four or five months - not as bad as it can get, but bad enough for me.

    I returned to school to find that I could only cope with two or three days out of a week before I was back in bed again. My school like most at that time had never heard of ME, actually I'm not sure that name had even been invented! They did not get that whilst I could manage (just) to be in school, the ability to go home and do homework was quite beyond me. They were not sympathetic in the least - I was not only expected to carry on with 8 O Levels but catch up on all the work I had missed.

    When I had missed more school than I had attended they sent me to an Educational Psychologist for "refusing" education! Bless their caring hearts. Fortunately the psychologist had recently been on a conference about this new disease, again not sure what name they gave it at the time, but she sent a very strongly worded letter back to the school urging them to support me in what I could do not pressure me about what I could not. They let me give up 4 of my O levels and this worked for a while but sadly I had another relapse and they politely suggested that I leave school. I had home tutoring for Maths and English O level, one hour a week. Mmmm that will get me through the exam!

    My GP was very sympathetic which I guess was quite enlightened at the time although he had no answers other than rest, take pain killers and multi-vitamins. I had numerous blood tests which never showed anything after the initial bout of Glandular Fever apart from my white cells count being slightly abnormal.

    Having had six months of no school and generally resting I began to feel well again. Stupidly, I thought that the illness was gone so I enrolled at College to take my O levels. That lasted about 5 weeks before the first cold of the winter struck and I was back in bed for months.

    To cut a long story short, I ended up going back the following September to do my O levels at Adult Education classes, all on a part time basis. I was learning to pace myself before that had been invented too!

    In August of 1986 I got my proper job... I can't tell you how excited I was to be part of the "real" world. I was living at home still and would work 5 days a week 9-5. I had dinner when I got home and then went to bed just so I could be up the next day for work. I had met a wonderful chap, now my husband, who was hugely sympathetic and gave me wonderful support and confidence. He used to lie on the bed and hold my hand till I fell asleep and then would go home (probably off to the pub with his mates!). The weekends were spent doing as little as possible to preserve my energy for the working week. I don't think this was a healthy balance but I so wanted to feel normal that holding down a real job was my goal and all else had to take a back seat. Social life....what social life?

    Over the years I improved slowly and also learnt to recognise the symptoms as they appeared. I knew when I had to stop, when I had to sleep, and that basically for every bit of energy I borrowed on one thing, I would have to pay it back, the greater the energy cost the greater the debt I owed myself. A late night Saturday, and I am only talking about staying up beyond 10, well Sunday would have to be spent in bed.

    When we got married and had our own home, my husband used to do the housework, the food shop and help with the cooking. I worked and then if I had anything left I would do some of the household chores - He could always tell if I had had a good day as he could smell dinner cooking as he came in the door. I had a really kind Aunt who used to do my ironing and later when we could afford it, a cleaner to do the major weekly chores.

    In 1994, during a round of voluntary redundancies I took the option to go part time. We wanted to start a family and there was no way I would fall pregnant all the time I was so tired. This was definitely the start of a better life for me, I actually had a bit of energy to do some of the things other people do, you know like a couple of hours shopping - just for pleasure.

    I think by this point I was probably at about the 80-90% mark on the scale and this is really where I stay most of the time. Before my emphasis was too much on fitting in with what I perceived was normal by everyone else’s standards but I have since re-adjusted my views on that, I don't have a normal existence, but I have made it work for me.

    I went on to have one child - A beautiful boy. I had a very hard time due to lack of sleep and my son has spent one night a week staying at my Mum's house since he was three weeks old and I was on the verge of a very severe relapse. I found that if I slept when he did, usually for a good hour and a half after lunch, and then had one night mid week of sleep I could struggle on till the weekend when my husband was home and could help. It was just a grind during the first few years, until he went to nursery and I could sleep whilst he played. It has got easier since he started school and I can sleep or rest as and when I need to. He is 11 now and goes to bed later than his Mum, which he thinks is highly amusing.

    I now work 10 hours a week and do all my own house hold chores, OK I am never going to be Hyacinth Bucket (or bouquet as she would have it) but as my fridge magnet says "My house is clean enough to be healthy and dirty enough to be happy!"

    My ME is normally manageable but every few years (like this one) I have a really hard time. Because I now know all the signs I can normally stop things deteriorating too badly but there is only a certain amount that sleep and rest, vitamins and a positive attitude can do.

    My GP (the same one) remains sympathetic but still has no real answers. He sends me for a blood screening when things get bad just to make sure we aren't missing anything by using the ME label. I have low times but on the whole I try to be pragmatic...I'm not dying even if sometimes I feel that I am. I have a good man, a wonderful boy and a few well chosen, understanding, supportive friends.

    My life is never going to be perfect. It has taken me over 20 years to realise that but it is my life and the ME is only a small part of it despite its best efforts to take control.