Does anyone actually cope with Lupus?

1085 Views 22 Replies 18 Participants Last post by karen.w., Apr 20, 2008

Peapods

Discussion Starter · Apr 14, 2008

Do you think it is possible to learn to cope with Lupus? I mean I know we all cope with it all the time but really COPE with it?

I know I dont and cant - even after 25 years it still catches me out. As long as I dont do anything very much and rest regularly i manage to feel almost OK but if I do anything - like drive 70 miles to my daughter for the weekend then its at least a week before i am back to something resembling an almost normal person.

And then I have a couple of nights not sleeping properly and off we go again. Too tired to eat or even move.

Tried walking to the pub for lunch cos too tired to cook but by the time I got there I was exhausted and although had a gorgeous lunch I then had to drag myself back home and sleep/doze for the rest of the day.

Seems the answer is not to do anything. Yes - thats it - we should have someone come in to wash and dress us, cook for us, do the housework, do the shopping, and generally pander to our every whim. (Maybe I should get married !! - JOKE) If we had nothing to do but just what we felt like doing and just floated around in a sea of tranquility then this Lupus thing would be almost manageable.

Was gonna write more but am too tired . . . . . . . . .

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Clare.T

· #21 · Apr 19, 2008

Although I dont understand why I am still so tired and ill when the disease is supposedly not active.

Maybe you are trying to do too much and maybe you are undermedicated if your docs take the view that you are OK because the blood work suggests that. Most women take on far too much and have too high expectations of themselves. This notion of superwoman is promoted by the media. So is the notion of sick superwoman who overcomes all the odds. It has become almost socially uncceptable to be ill and not be able to function as "normal" almost a moral failing. It is very easy to be persuaded that we have to live up to completely unrealistic standards. It's hard to remember that energies fade even with a few years: the natural course of time and all sorts of life events take their toll.

Perhaps too there is undiagnosed anemia or thyroid problems or some other condition causing fatigue.

Good Luck
Clare

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sushi

· #22 · Apr 20, 2008

i know exactly when my fatigue is starting to come on. i start slowing down my eyes become irritated and my pulse starts to elevate. i start to feel exausted.

but whatever im doing i stop, go to my room and rest for a while after a couple of hrs i feel so much better.

i use to push it to the limit but now i stop as soon as i feel it coming on.

and it works for my benefit.

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karen.w.

· #23 · Apr 20, 2008

Peapods;505249 said:
Also have began to see a psychotheripist who is lovely. She thinks that a course of cognitive behavioural therapy will definitely help as there are many other issues that I need to deal with from my past as well as lupus.
So hopefully all this will help

Good for you andi for taking some positive action!

I hope it all works out well for you!
I am training to be a counsellor/psychotherapist at the moment,only started last september though so still got a long way to go yet

..however we have just 'touched' on CBT recently & it sounds wonderful!It's very effective,seems to get a lot of positive results & is becoming more popular..I am looking forward to studying it in more depth in the future..might give it go myself too

good luck with it andi :luck:
luv karen x

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