A short sad history of ME/CFS

ash4becks

cepheus wrote: »

Longer with ME than with fibro, in fact my GP at the time of the former illness threw me of his list! I had to go private for a while.

who dignosed you in the end , i have a rhemy appointment was going to be next week but they put me down for the wrong clinc grrr now not till next month

sunnyone

ash4becks wrote: »

who dignosed you in the end , i have a rhemy appointment was going to be next week but they put me down for the wrong clinc grrr now not till next month

ME and fibro arent a diagnosis, they mean that nothing else can be found to be wrong with you.:p

ash4becks

sunnyone wrote: »

ME and fibro arent a diagnosis, they mean that nothing else can be found to be wrong with you.:p

coming from you i would expect that if its not a dignosis why is it classed as a medical condtion :silenced:

sunnyone

ash4becks wrote: »

coming from you i would expect that if its not a dignosis why is it classed as a medical condtion :silenced:

A medical condition that means that you have no proveable diagnosis?

ash4becks

sunnyone wrote: »

A medical condition that means that you have no proveable diagnosis?

it is a case of elimation of other condtions look at ivdi's post i wouldnt ever self diagnose , but look at hms which i have its simalar but with the examination to show the condtion how many more condtions use the same process,

little is known about the condtions and little spent on reserch problebly why there is no test at present

sunnyone

ash4becks wrote: »

it is a case of elimation of other condtions look at ivdi's post i wouldnt ever self diagnose , but look at hms which i have its simalar but with the examination to show the condtion how many more condtions use the same process,

little is known about the condtions and little spent on reserch problebly why there is no test at present

Its elimination of all clinical conditions that can be proved in any other way, I was diagnosed as HMS nearly 30 years ago and then it was seen as nothing much on its own but add to it my juevinile scoliosis it became something to keep an eye on but it didnt stop me doing anything at all never mind being a disability.

I was fine until my accident, as are most people with HMS at your age unless there are other factors.

ash4becks

sunnyone wrote: »

Its elimination of all clinical conditions that can be proved in any other way, I was diagnosed as HMS nearly 30 years ago and then it was seen as nothing much on its own but add to it my juevinile scoliosis it became something to keep an eye on but it didnt stop me doing anything at all never mind being a disability.

I was fine until my accident, as are most people with HMS at your age unless there are other factors.

that is what you question me over you no fine well i have balance isuses, mental health and whats being looked into atm 2 years ago i was dignosed i thought nothing of it, now 6 months ago i really know about it and hate it depression was the only thing that really effected me all the time now, but it stops me doing so much it hurts, i would have got my disablited buss pass if doc didnt think i would quaifly

i love nothing more than wandering down the beach and walking for hours on end with my dog my shoping trips from 9 in the morning to 9 at night ,
theres noway even on a good day i could do that past 5 months i havent been able to do that

20 mins of very light housework few bit in the washer sitting down and feeding ella bit of tidying i have to rest for 2 hours or i just make myslef worse

every condtion isnt set in stone how it affects people realise that

SingleSue

I remember when ME was ascribed and mocked as yuppy flu...all very derogatory.

Unfortunately, I don't think people from that era have really moved on from that and understand how completely debilitating it can be....I certainly didn't until I came to this site.

sunnyone

SingleSue wrote: »

I remember when ME was ascribed and mocked as yuppy flu...all very derogatory.

Unfortunately, I don't think people from that era have really moved on from that and understand how completely debilitating it can be....I certainly didn't until I came to this site.

I have a friend with ME and she is totally disabled by it, it dosnt allow her to be totally fit one day and bed rest the next as some people think it can, its a perminante exhaustive state that means the bare needs of self care are impossible most days, not camping, walking the dog and going about normal daily life most of the time.

clouty

Exactly, Sunnyone, many people with ME are totally disabled, but you never see them, because they are stuck in their homes on the sofa or in bed, and going to the bathroom is as far as they get in the day.

I'm not that bad, because of the supplements and herbal anti-virals I take I can get out to the shops, once a week or so. Thank heaven for internet shopping! About three months ago, I thought "why am I taking all these pills?" - I never used to take anything, before I got ME - and I stopped the lot. Ouch that was a bad move. I then re-introduced things, one at a time, and I found that they really were what was making the difference between being stuck in bed all day, just managing to feed myself, and having a life.

Doctors and specialists I have seen have belittled my experience, because of the current received wisdom about this disease.

A thousand years ago, sick people were thought to be bearing the results of their sins, invaded by evil spirits, and other such gobbledegook. Sound familiar?

Until recently lepers were shunned, feared and driven out of society.

Two hundred years ago most diseases were treated by bleeding with lancets and leeches, poisons like mercury and arsenic, the black draught and the blue pill.

One hundred years ago, more people died of Spanish Flu than in the trenches. Polio, scarlet fever, an almost endless list existed of incurable illnesses, and some weird and wonderful treatments were used to little or no avail. Sound familiar?

Fifty years ago, medical science with its antibiotics seem to be able to cure all disease.

Thirty years ago AIDs hospices in Europe and North America were full of people dying painfully, dehydrated and with pain that made their skin scream at the gentlest touch. I know, it was my job to care for some. Mouths full of thrush. There was no treatment to halt the progression. Sound familiar?

Global understanding of HIV/AIDs was not a reality in 1990; understanding of our illness is not yet a reality, but it's coming: Progress, halting, limited, frustrating, is being made.

It's scary sometimes to try and get your father, sister, mother, boss to understand that you are just ill, !!!!!!, and unlucky, but every person you help to that understanding is one person closer to civilising CFS.

All we want is recognition, respect, acceptance, practical help and drugs that really work. Too much to ask? Every illness, once finally understood, has that much, here in the west at least. It is a long road, but be sure, we will get there. Stay positive, breathe free, have faith.