My life with ME

I have called this My Life with ME because I truly believe I have had this problem all my life. I had a traumatic birth followed by every childhood illness known to man before I was two. A touch of polio, chickenpox twice, scarlet fever, etc etc etc. Clare Francis the yatchswoman who has had ME for many years once said how she had been a sickly child, often being collected from school complaining of stomach pains and just generally feeling sick. Several years ago I spoke to an old family friend about my condition and she said she remembered my mother doing that. Then in the last few days an article appeared in Canada http://tinyurl.com/2zqtpj about a woman who was severely disabled with this illness for many years and it suddenly occurred to me that I was in that state for years when I was about 18-19 only we didn't have a name for it. I was always sooooo tired and depressed but sheer bloody-minded independence and willpower forced me to carry on pushing myself to at least try to live a "normal" life. I still had a social life, I tried to keep working, I even tried to go back to college when working was obviously too much to cope with. I was absolutely as low as this woman but I simply wasn't in a position to "give in" to it. I was not the most rational person during this time, often hysterical and always weepy but I fought on for years until my first major collapse when I was 23 and I came home from work one day after feeling very low with a series of bad colds , went to sleep at 6 o'clock and woke up the next morning at 9.30!! feeling like I hadn't slept a wink. I continued to deteriorate over the following months until I got to the stage where I cd only eat toast and plain pasta and I cdn't bear to hear the phone ring let alone answer it. It was another 8 months out of my life before I cd cope with getting on a bus without having a panic attack. Once I felt capable of working again I was lucky enough to find a job in a very small company 5 minutes down the road from my flat. From then on for a few years I lived a reasonably normal life though I tended to go through periods of months where I did not feel up to going out at all, it was either work or social life but both was too much. Shirley Conran was another woman with ME who has described her battle to carry on running a business, having kids, dealing with a marriage all the while feeling so tired you can barely even breath anymore and crying almost 24/7. A huge problem with anyone accepting that I am really ill is this fact that I will carry on regardless and I try very hard not to show just how bad I feel so people don't see the reality. I am my own worst enemy in that respect.
When I met my husband 19 years ago, I was in a reasonably normal phase though the party I met him at was the first I had been to in probably years. I was working until after about a year I began to have panic attacks and spells of unexplained dizziness and nausea which eventually cost me the job I had. Then when the nausea became almost permanent throwing up and the exhaustion was 24/7 we were sent to a consultant at the local hospital who did every test he cd think of including a nasal endoscopy, berium meals and various xrays all of which came up fine. We had a certain amount of articles and info about this ME but I don't think that influenced him. He eventually concluded that this was the right diagnosis simply because there was nothing else wrong and the symptoms fit. At last I had an explanation for how I've always been but even then it didn't occur to me that the way I was at 18 was the same thing. I believe if I were any less strong, stubborn and independent I wd have sunk as low as the woman in Canada. But the pushing myself so hard to live normally resulted in the relapses and if I had ever got that bedridden etc maybe I wd have had a diagnosis earlier and my life cd have been so different. I now have an autistic son which I may also have had a lot more help with if the medical profession had been a bit more willing to look beyond my illness and believe that his behaviour was indicative of a problem with him rather than a problem with my ability to cope with motherhood (a comment on my medical records that I found motherhood to be overwhelming - well anyone wd if you had a child like this!!!!). When he was 8 I got a diagnosis from one of the world's leading experts in the field but it has still been a battle with the local education authority and if we had not been able to afford to have him in a small private school I doubt I wd be talking to you now, I wd have killed myself by now. That may sound over dramatic but anyone who has dealt with illness, depression and an autistic child (plus a husband who can't cope with stress and has undiagnosed problems of his own but that's a whole other story) - and trust me there are MANY of us - will know that I am not exaggerating, there was a time when I cd have driven a car into a brick wall without thinking twice about it. I have wanted to get all this out there for years because I believe it is important for anyone newly diagnosed or struggling with the symptoms without a diagnosis yet to know that they are not alone. I have often gained a great deal of strength from other people's history and experiences and if I can help even one person through that awful misery this illness reduces your life to, then it's worth the effort of all this typing! Many friends have said I shd write a book about my experiences but this is going to have to do for now. I guess this shd go under the "About me" section but for now it can stay where it is. I don't care if anyone's interested really I am doing this more for my own therapy I just hope it might interest someone.