Summarising My Chronic Condition

Each month I join in with Sheryl’s Chronic Illness writing prompts. She has built a lovely community of people who understand what it’s like to be constantly ill. For those that don’t, she gives us a voice to help spread awareness. These are Sheryl’s prompts for January, Summarising, Crossing, Moving, Rebuilding and Expecting.

The New Year makes you think of what you achieved in the previous year and I have already made a summarising post of 2022. A lot of it is health related but mostly because of my daughter Star and her deteriorating health. We can only hope that 2023 will be a better year for her. It seems strange to say, but now that she’s become really poorly we are finally getting the help we’ve been asking for for years and have been brushed off. It’s sad that she had to get so bad first, but it seems the way things are done here with our wonderful NHS under so much pressure.

Summarising

Summarising my health condition I would say I am gradually getting worse. I wanted so much for it to be different, I hoped that I had a chance of finding a new treatment or improving in some way. But, the truth is, the treatment I have keep me stable and that’s it. Unless I get much sicker then there is nothing more that can be done for me. Even if I did get worse there are really very few choices of treatment for my condition. Last month, Celine Dion announced on her Instagram that she had the same condition as me, Stiff Person Syndrome. I guess at least now people (and in particular, those in the medical profession) can see that it’s not just a made-up condition because someone famous has it! Or maybe, it won’t make any difference at all.

Crossing

This was a difficult prompt for me but I guess I could use crossing as a way of crossing over to a new way of living. I need to do something, this life is proving to difficult for me and I need to find some way of crossing over the barriers that are holding me back from being happy.

I haven’t decided how I’m going to do this yet, but I’ll be giving it a lot more thought now that we’ve crossed over to a new year.

January 1st is not just the beginning of a new year it’s anniversary of when I got sick. It’s been seven years this year. I remember when I first got sick I was told it would take me around eight weeks to recover and that felt like an awfully long time. But here I am seven years later and improvement was very minimal. I was aware from the start that if I didn’t recover in eight weeks then future recovery would be difficult. The first year I didn’t give up and I strove to recover so hard. Then exactly a year later I was given a new diagnosis and I learnt that my illness was progressive. This has stopped me in my tracks, and although I’ve tried to keep my positivity I think I’ve lost a lot in the last six years. I want to go back to that first year and go back to believing I can recover.

Moving

When we moved into this house (ten years this year) I’d lived in my old house for twenty four years! It felt like a lifetime and I had to leave it all behind. But we needed a bigger house and we were really lucky to have this house, no, incredibly lucky. It’s not perfect but it suits us, it’s big enough for us to keep out of each others way when needed and comfortable enough for us all to share spaces like the kitchen and living room. I just wish the walls were thicker so we didn’t have to put up with noise, inside and out. BUT, I don’t have any more plans on moving house, packing up and moving is like my biggest nightmare. I still have nightmares about the move here ten years ago! I really don’t understand people who love moving so much.

But, moving house is only one way of moving. I keep saying that I’d like to be able to move more and this year I plan on trying to make that happen. I don’t know for sure that I will never walk again, I can sure try and improve on the skills I have. I get pain if I push too hard, but what if I only push a little but often? There is always something new to try and I’d love to be able to move more.

I’m also planning on replacing my wheelchair this year. My current one has served me well for the past three years but I am looking for something else. This will aid my movement outside, so I need to find the right one. It’s never an easy task and wheelchairs are so expensive so there is lots to think about.

Rebuilding

My way of life is currently going through a lot of changes, my children are growing up and changes are being made. But, after rebuilding my life so many times in the past it doesn’t feel the same.

I had to rebuild from scratch when my first husband left me, and again when my family let me down. I was at my lowest when I met my current husband and at the time I didn’t think it would be a permanent relationship. I was rebuilding my life, I was a single parent, I’d just given up my job because of pressures at home and my life was a mess. I didn’t think that he would stick around but he did and he’s still here some twenty one years later!

So, I’m not thinking of this chapter as rebuilding but it is growing further.

I will be focusing on rebuilding my self esteem and finding that strong woman inside who has dealt with so much in the past. The future is to be built, but I won’t be rebuilding.

If you are a blogger and are thinking of rebuilding your blog then Sheryl offers services on her blogging business website, Blogging Bread.

Expecting

I love Sheryl’s quote:

I approach life without expectations, but rather, ask life what it expects from me, instead. I find this a peaceful thought that grants me strength, as I live with the unpredictability of chronic illness and disability.

I don’t think that people understand chronic illness unless they have one. Even my closest family and friends seem to wonder why I still can’t be well again. It can become tiring expecting someone to get better and a lot of people give up and disappear from your life.

Life always throws you curve balls and now I find I am only expecting things to get worse instead of better. This is a mindset that I need to work on. So what if I don’t get better, I can still live my life to my own expectations.

Expecting things to be different or waiting for change can be exhausting. Living your own life and seeing what life expects from you is definitely a more peaceful way of thinking.