Life With a Chronic Illness

I’m linking up to A Chronic Voice Link up Party for people with Chronic Illnesses, and following the prompts for February.

Adjusting

I already have a post in my drafts about this which I’ll probably never publish. Adjusting can be so difficult sometimes and, hands up, I’ve been having problems.

It’s the simple things, filling the dishwasher, carrying the washing, cooking dinner, cleaning, all the usual things that most mothers or housewives do naturally.

I want to do them. I want to be able to de-clutter, tidy the bedrooms, change the bedclothes, sort the old clothes.

I can’t. It’s just not physically possible for me. So, I’ve had to adjust. It’s no good asking others for help, they don’t do it quickly enough, or at all. I can say, ‘please bring the washing down from the bathroom’ every day for a week, but it’s still there. So I bring it down myself. I drag the basket down the stairs, step-by-step. I’m scared of it tipping up and knocking me down the stairs, so I go as slowly as possible and hope for the best.

Then I get berated for doing it.

I’m adjusting, slowly. I don’t like it, but if I do a little at a time I can get through. I just have to accept that there are some things that I cannot do.

Hoping

I hope a lot. I hope that I will be offered a new treatment. I hope that my current treatments will actually work. I hope for a day free of pain. I hope for a cure. I hope that one day I’ll wake up and this will all be gone.

But these are not what I’m really hoping for. I am realistic, I know my fate.

My biggest hope is that my children remember me as a fun, kind, friendly, happy Mum and not as a disabled Mum.

Surviving

There are times when I am really ill that I’m not sure I’m going to survive. Because of this I’m grateful for every day that I do.

I’m surviving this condition, I’m fighting it all the way. I think of the future and half of me does not want to carry one for another 10 or 20 years in pain. The other half wants to survive, because ill or not, life has so much to offer.

Befriending

Another blogger talked about befriending her condition. I think that’s kind of what I’ve been trying to do. That post that will never get published, it was all about acceptance.

I feel I need to accept my condition and let it become part of me instead of letting take over me. You can’t get rid of it, but you can accept it. That’s kind of befriending it isn’t it?

Awakening

When you have lots of time to think, all sorts of things awaken inside you. What have I done with my life? What else can I do? How will my illness prevent me from doing all the things I want to do? Is my life over already?

These are the dark thoughts awakening and it’s hard to shake them off. I get them frequently but I try not to let them take over.

To prevent the black dog from awakening I practice mindfullness, meditation and just taking plenty of time out to do what I want to do. Then I’m able to regain my perspective. My life isn’t over, it is worth living. There is always hope and I know I’m so lucky to have such a wonderful family around me.

Footnote

For any new visitors to my blog, my illness is Stiff Person Syndrome which is a rare neurological disorder. I also have PERM