[Katharine]

Hi there,

I think that's a tough one for many here on the boards to answer. Just because those that are "coping" that well don't generally post here. Most of the people who post regularly here are the "Newly Diagnosed", the "Not yet Diagnosed" and, of course, those who are more severely affected by the disease and its complications.

I think it also depends on how we define the word coping. For everyone concerned I'm sure that it can be seen differently. I feel that I am coping really well but what does that mean? I'm not particularly well for the moment - that's putting it mildly - but I am happy, cheerful, enjoying life despite it all, and I feel "useful" to those around me.

Of course, don't get me wrong, I do get very fed up certain days and frustrated that I can't do things that other people wouldn't give a second thought to, but, most of the time, I sort of feel that being frustrated about that makes life a lot less pleasant and doesn't get me anywhere.

that's my take anyway
Katharine

 

[Katharine]

Hi again Peapods!

Yep, you make sense, no worries there.

I have heard a lot of good things on cognitive behavioural therapy but have never tried it myself.

I think that it is sometimes difficult to know just where we should be with the whole optimist/realist thing.

Like you, I used to get all excited when I had a few good days and the hope that things would get better got me through a lot (it still does but..). However, when things drag on for so long, or when you keep crashing back down to earth with an almighty thud, hope wears very thin.

I think acceptance (maybe tinges with hope) is very important in helping us to cope, essential even, and now, most of the time, I have a pretty good level of acceptance.

On the other hand, that too can be dangerous when there's too much of it. For example, we get too used to feeling bad, we lower our expectations...and we don't let docs know quite how bad things are as we have become so used to just putting up with it.

Looking back on the old me is a painful thing at times but at times is useful as it tells me "hey, no, this is not normal, you need to get some relief, you can't stay like this..."

I'm in one of those moods right now. I can accept the life change, the job change. I can even accept giving up aikido and horses but I can't blindly accept it ALL. I can't accept that I can't even go shopping any more because my feet are too painful to stand at the checkout desk or to walk for half an hour in a shopping centre. I can't accept that my son almost didn't get a birthday treat because I just couldn't manage to do anything with them...(In the end we went because I felt OKish and because it is important to that son right now, but I am paying for it dearly and every step was pure torture). That level of non acceptance is here with me now, and will be with me on Monday when I see my rheumy. It will mean that for once, I won't put a brave face on it, for once I will complain and stamp my feet (not literally :lol: just the thought hurts!)

Katharine