All I can really remember about what I think was the start of this illness, was getting chest pains. Apart from that I was extremely fit and well.
I worked in the day at a clothes retailer, and a couple of evenings a week I was a youth worker, trained to teach trampolining. I also played squash, badminton, tennis, swam most days, and our family holidays were walking ones, we've done the Lake district, Wales etc....
I'd be up at 6 in the summer hols, water the garden, do the housework, then get kids ready to go to beach hut. Spend all day swimming and playing with the kids, walk home, feed and get them to bed, then work in the garden until it was dark...life was so good.
There might have been other odd bits and pieces, but I don't really remember anything in particular, apart from I must have gone to the docs about being tired at some stage as she gave me something that I was told like an amphetamine? To speed me up a bit as the doc put it.
One particular visit to the doc, he asked me if my heart was always this slow...I hadn't realised that it was. But about an hour later, while I was at home sat down, my heart just seemed to go berserk...at first it felt like it was fluttering in my chest, and then it beat so fast, I had a job to take my pulse. I began to have severe chest pains too, so was admitted to hospital. The first of many admissions. They couldn't decide what was wrong with me, some said about wolf Parkinson Wight, and having open heart surgery, some said nothing was wrong....all I knew was that I felt so ill and drained.
Then the severe nausea kicked in, I lost over 3 stone in weight over a short period of time, so they then started testing me for thyroid, because I'm dark skinned also. The bouts of tachycardia came from nowhere, and could last from a few seconds to 10 days. It always seemed to be accompanied by nausea and diarrhoea. I couldn't eat or drink.
In between bouts of this I'd sort of return to normal, but each relapse would drop me further down the scale, and the climb back up would see me at a lower level than before. More and more symptoms appeared, the dizziness, fuzzy headed feeling, headaches, temperature all over the place, muscles twitching.
Over these years I struggled to keep working, every so often having to have periods of time off. I had to keep dropping down the hours down that I worked, gave up youth work, until before my final big relapse I was down to two, four hour shifts. I did nothing else in between, but rest, so I was able to go to work.
It took me about 5-6 years to get a diagnosis, even then I had to go and see a private consultant, he read all my notes and told me I had ME, we'd never even heard of that at the time. So I knew nothing about it.
Even when diagnosed, I wasn't really offered anything. My G.P. was good and would listen to me and be sympathetic, but could offer nothing. They did try me on beta blockers twice, but these made me so ill, that I said I wouldn't take them any more.
8 years ago I was referred to the Dorset ME clinic at Wareham, where they taught me quite a few coping skills, as well as about pacing and resting, but there again, once you finished the course, that was it , sianara...you're on your own.
I feel strongly that all people with ME should be having regular appointments to see how they're doing, and to check out any new symptoms, as I know that most of us tend to put anything new down to ME...and like the OT in the clinic said, 'just because you have ME, it doesn't stop you from having anything else!' It also concerns me that living such an unhealthy life style (i.e. no exercise) that it may be storing up more problems for later, and would rather find these out early, and nip them in the bud, or at least deal with them.
I'm now in the situation where I'm mainly housebound, laid up in a bed a couple of days a week, just been awarded DLA high rate for mobility, and low rate for care indefinitely...so I guess that luckily, the doc who came to do the examination believed in ME. Apparently, he says I have quite severe muscle wastage on my legs, and should be trying to do some exercise to help with this. (My daughter is working on this one).
I really believe that had I had an early diagnosis, and know what I know now about resting/pacing etc then I would not be this incapacitated. I guess there was even less knowledge around 20 odd years ago about ME, than there is now.
There have also been positive things though from this illness. I went on to have another child (who is now 15) which had I not been ill I wouldn't have had. I also realise what a great hubby I have, he's very supportive, as are the rest of the family. My kids too, having grown up with me ill a lot of the time, are caring, and have learnt things from my illness.
I like to follow the debates that go on about ME, and am often seen writing furiously at my computer a letter or e-mail to someone or other about the plight of ME sufferers.