Most Doctors dont have a clue, years ago i mentioned ME to a doctor after a consultant i was seeing at Greenwich hospital Said to me, I think what you read in that book ( a book about ME ) is what you might have, said to the doctor the consultant said ME, He said sorry what ? i said ME, he said ME sorry whats that, I looked on a wall in the doctors office where it had something about ME on it ( might have been phone numbers i cant remember ) i pointed it out to him, and he seemed even more confused, like whats that doing in my surgery, like he had never seen it before.
Anyway the consultant i saw at hospital ran a few tests, and saw me 3 times every 3 months then just didnt bother making a new appointment, even though i knew she could tell that what i was describing sounded seriouse. She just didnt know what else to do. So i became untreatable and now isolated.
Even though i was describing flu like attacks with high ( at least 102 F if not occassionaly higher) i was sent to Kings college for more cortisol tests, ( a little theory they was playing with, ) then it was upstairs to see Mr Wessley, i sat in hes office describing high temperatures shivering one min burning hot the next, chest infection that felt like i had breathed Fibre glass dust stuck to my chest.
Told him i would go pure white ( white green in the face ) found it hard to eat, or even drink water as i felt so ill. that my penis was even shrinking when these attacks were happening. That i was scared, that i would start crying because i knew what was coming for me when the attack started,
often with the chest first, then the flu tempeture, aching all over headache nausea extreme lack of appetite ect.
I thought he was listening, i thought he would order more tests, i thought he was my friend. Years later i found out who i was telling these private personal things too. Now i just feel anger, nothing else, anger, and pity on him for being such a piss poor medic Cheers Simon.
I was sent to harold wood hospital after i learned it had a ME clinic of some sort. I thought now i will get some help. Two doctors listened to me, they looked at each other and mentioned something about cytokins, when i left, They booked a appointment for somekind of excercise program ( yeah you know ) I told the same story to another shrink they got me to see, who diagnosed CFS and told my GP in writing, CFS recovery within five years, but might have a Psychological explanation,
I went back to the shrink, and felt let down, and told him so, he then became quite angry and said to me, I wrote on the letter CFS didnt i.
One doctor i had was good. be he didnt have a clue what to do, though i could tell he knew i was ill, and not a fruit cake. I had hes respect, just not hes help. No one helped me, i got so scared now just left to get on with it, that i kept thinking its ok if i dont get better anymore after each attack, i can kill myself. that helped for a while knowing i didnt have to die, weak trembling, burning hot, and just plain panicky untill death.
Slowly i got better after years of helping myself, with amazing healing foods ( many types of salad veg, fish )
vit pills, magnesium tablets hi strength vit c tablets, evening primrose. I just clawed my way through the years, with relaspe remission relapse remission, on and on. I did get better after years of better sleep that a side effect of amtriptylene gave me, knocked me out for hours ( great ill take that side effect ) as by now i was on 4 hours sleep every 48 hours,
Contary to what people might think, anti deppressents didnt stop the crashes, they continued for years. But the sleep enhancement may have saved my life. As untill then the panic by now was just suffocating, i was verging on extremly traumatized. My heart always racing through little sleep, anxiety, And the ME symptoms. I will never fully mentally recover from this Ordeal, In the winter months i lock myself away and never go out, incase i catch flu. Pettrified of illness after that life.
Doing so much better now. but still get relapses at varying time scales and durations now. But weaker than those dark days.
Yes i feel abandoned and let down by my country. its just plain wrong. but im lucky. look at poor lynn Gilderdale, my heart crys for her. But i didnt even know her. But her suffering and fear i might have tasted a little. rest in peace lynn, your country and doctors have nothing but shame on them. RULE BRITANNIA bollocks
