[Peapods]

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 . . . . . . . . .

 

[Peapods]

Thanks for that guys - I think that my original post was one of desperation and total 'pissedoffness' (If its ok to say that!)

I moved to a new house 5 months ago and dont seem to have stopped being tired since. I live alone and have always managed to 'cope' just about somehow, but now, although it is supposed to be in remission or not active I feel so unbearably tired all the time now. I dont know if it is because the house move knocked me out and its taking a while to recover, or whether its just that I am getting older and cant cope with it as well. I used to push through the pain and fatigue most of the time but now dont seem to be able to.

I cant stand having a messy house and am always afraid someone will judge me as being a slob cos they dont understand. I dont think I have ever allowed myself to feel ok about not being able to do things. Maybe its time I dealt with that. After 25 years maybe its time to admit that I do have a debilitating depressive illness that makes me unable to do things!!

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

 

[Peapods]

Reading through all these messages is such a blessing to me. Everyone's point of view is slightly different but all the same! It is good to get things in perspective. Specially living alone I do tend to get a bit reclusive and think I am the only one in the world feeling like this!

Since I moved down to Devon I have been feeling much worse and so have decided to make some positive moves to see if I can improve my life a bit. I am now trying to eat healthier (when I can make it to the shop), eating salads and raw food rather than stuff you have to cook. I am seeing a new Rheumy on May 2 and need to ask a lot of questions. (Dont have any major expectations there!!)

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 a bit!

One point that people made was the 'expectations' we have that tomorrow it is gonna be better. Unrealistic expectations can drain your resources quicker than anything else. Every time i have a good day I get exited and think its gonna stay like it. Of course it doesnt. You'd think I would learn - well I am learning slowly but still feel bitterly disappointed when I feel tired and ill again. I guess its the feisty spirit within us that wants to live life to the full and clutches at any hope that that might happen.
But also like you have all said, its that same feisty spirit in us that enables us to go on 'dealing with' life with lupus!

I have rattled on a bit so hope it all makes sense!!:hehe:
And thank you so much to everyone who replied to this post - it is so appreciated :thumbs: