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What are my odds?
Posted: Sat Aug 03, 2013 7:27 pm
by ChrisofCabra
Just roughly.
I'm 57, and have been formally diagnosed with CFS/ME.
My symptoms have been worsening for nearly three years despite round after round of "load shedding" in respect of activities, stress etc.
I'm now effectively housebound and have to spend the large majority of the day horizontal.
(as for typing this: I've arranged a near-horizontal low visual demand and low muscle demand set-up.: I cant sit at a chair/desk for long.)
What are my chances, just statistically (yes, I know we vary!) of a full recovery, on what time-scale?
Or of a partial recovery, likewise?
(I suspect I should be selling my car, but I've not gone there, yet.)
I'd like to have some sort of longer-range plan or prospects at least vaguely sketched in.
And no, I don't buy into leaning towards optimism. Far too dangerous.
Chris.
Re: What are my odds?
Posted: Thu Aug 15, 2013 12:03 am
by Dr Charles Shepherd
Without knowing a lot more about your state of health, management etc it's impossible to start making percentage estimates about the chances of recovery
What I can say in general terms is that quite a lot of research has been carried out into recovery rates in ME/CFS and factors associated with good/bad prognosis
All this research is summarised in the Prognosis section of the MEA booklet: ME/CFS/PVFS - An Exploration of the Key Clinical Issues
We also have an MEA leaflet covering Prognosis and Permanency - aimed at people making claims for early retirement on grounds of permanent ill health
MEA website + literature order form:
http://www.meassociation.org.uk
Re: What are my odds?
Posted: Thu Aug 15, 2013 8:00 am
by ChrisofCabra
Thank you. I already have that.
It's not looking too good.
Given that I'm three years in and can't yet say I've found a stable base-line, it being much like a limbo contest where the bar keeps being lowered on me*, it seems I'd better make not plans banking on improvement.
It's a good job I'm strong on a sense of humour (black and twisted, mostly) and Anglo-Saxon fatalism.
Chris.
*alternate imagery is of a sinking helium balloon: "what else have I got that I can throw overboard? I'm down to my underwear as it is!"
Re: What are my odds?
Posted: Thu Aug 15, 2013 6:17 pm
by snailspace
Ha ha....great sense of humour...it definitely helps! Don't lose hope though...I was severely ill for several years but have gradually got better....not total recovery yet, but getting there.
Re: What are my odds?
Posted: Thu Aug 15, 2013 6:31 pm
by ChrisofCabra
Thank you snailspace,
I'm glad to hear you are improving.
I haven't discounted the possibility of either a degree of recovery or even total recovery, but my brain is somewhat unusually wired, and I'd rather do without hope than lean too hard on hope which does not them materialise. The latter, for me, is more damaging than the former.
I have a mindset that can cope without hope.
Anyway, have you never been suspicious as to exactly what Hope was doing as the last thing in Pandora's box of all the woes and ills of the world?
Cheers, Chris.
Re: What are my odds?
Posted: Thu Aug 15, 2013 7:14 pm
by goblinff
I know we're not supposed to be answering questions etc, but it's really helpful to hear that some people can & do recover (against all the percentages). I'm not hoping either, though I like knowing there's a bit of blue sky. I have come to the conclusion that having been forced by circumstances to be expert patients, we are an unruly (but generally supportive) lot!
PS Hope was being sensible and hiding until the stampede had passed
Re: What are my odds?
Posted: Fri Aug 16, 2013 4:47 pm
by ChrisofCabra
goblinff wrote:I know we're not supposed to be answering questions etc,
"If you are going to break a rule, break it good and hard."
There seem to be quite a few of us bolshie types here, and all the better for that, say I.
If formally challenged I will defend myself and leave if necessary.
but it's really helpful to hear that some people can & do recover (against all the percentages).
Yes. I'm not betting on hope (poor odds) but that doesn't mean I'm married to despair.
I find this famous WW1 cartoon hits the spot. At least for me.
PS Hope was being sensible and hiding until the stampede had passed
Having been misdiagnosed as a woe or evil the first place? (to explain her location?)
Otherwise I'm right with her on being sensible.
"Mankind are a herd of knaves and fools.
It is necessary to join the crowd,
or get out of their way,
in order not to be trampled to death by them." William Hazlitt.
Regards, Chris.
Re: What are my odds?
Posted: Fri Aug 16, 2013 8:43 pm
by survivor
I'm going the whole way here! When our daughter had suffered from severe ME for more than 10yrs, she said 'Why do we never hear of anyone getting well again?' Well, a few years later she was on the mend now for more than 5 years now, living a normal life and enjoying her young family too. She got well after giving up on trying to get any support from GP, Social services or anyone else.
I have not helped her, as I am still recovering from severe ME myself. Recovery for me is continuing (slowly) in spite of becoming a carer for another family member who previously cared for me and whose health is now deteriorating steadily. But I am still improving even after 20yrs, with set-backs, and at last beginning to go out again for walks and to visit friends in spite of the increased stress and 'work' at home. We are fortunate in being able to get some help now that one of us has an 'acceptable' illness, which has made a difference.
So keep hopeful. There is a chance that some people can recover to lead a normal life without ME. And while you wait for recovery, improvement can continue indefinitely (in spite of set-backs), and you can learn to laugh again and find meaning in life.
Re: What are my odds?
Posted: Fri Aug 16, 2013 10:00 pm
by ChrisofCabra
survivor wrote:... you can learn to laugh again and find meaning in life.
Thank you. And good wishes to you all.
The possibility of recovery I have not written off.
I've always been able to laugh: it's a major and resilient resource, even if one somewhat black and twisted...
"Having CFS is like being dead, but without any of the advantages...
...at least when you're dead you don't have to keep explaining your condition to people."
.. at least when you're dead people don't mark you down for "not joining in" ."
(and so on)
"Find meaning in life"?
Aww, I was hoping to stay with "...a tale told by an idiot, full of sound and fury, signifying nothing."
Cheers, Chris.