Regular readers will know that each month I join up with Sheryl at A Chronic Voice with her writing prompts to highlight what our lives are like living with a chronic illness. I have a very rare condition called Stiff Person Syndrome plus PERM, which has been with me for five years and nine months.

Sheryl’s prompts this month are Gazing, Shaming, Defeating, Concentrating and Empowering.

Gazing

I wasn’t sure where to go with this one. I guess it seems a strange word but I can put it into the context of my life in a few ways. I spend a lot of time gazing out of the window. I spend a lot of time in my living room and I don’t have the best of views. If I can get out into the garden I can gaze the other way at the trees. It would be nice to turn the room around and sit and gaze at the trees all the time. Better than looking at the shed anyway, which is mostly what I can see. I had this idea that we could paint the shed a nice colour ( I even bought the paint) and I crocheted a string of flowers to decorate it. I just wanted to make it prettier to look at seeing as it’s mostly all I see. Unfortunately, as usual, nothing has been done. I would have done it myself in a day had I been well. I even bought some lovely plants to put alongside it, but they’ve all died because of not being re-potted or looked after properly. I’d give anything to be able to look after my garden. It’s difficult because my condition means I can’t bend or stretch for more than a few seconds. and I can’t stand for more than a few minutes. And I have a lazy family who would rather spend the day in bed than help me.

Here’s my garland I made.

Shaming

I have experienced shaming, a close friend and family member called me out for attention seeking when I had my story published in an online magazine to raise awareness about my rare condition. My cousin said I had shamed the family and that she would never stoop so low. I’ve had little regard for anyone who feels the same way. Walk in my shoes for one day and then feel ashamed. I don’t care anymore. If I help raise awareness then I’m doing it for the good of people who suffer with this awful condition. Maybe one day doctors will take us seriously and treat us properly. I could write a lot on the abysmal treatment I’ve received in A&E. I was even refused a wheelchair once so I could get to the car, even though I can’t walk!

I have to admit though, the worst person that shames me is myself. I find it hard to admit I need help and will suffer instead. I walk around my home and look at my disability aids with disgust, even though I can’t live without them and they’ve been there for years. I hate my wheelchair even though it’s my only way of getting out and about. I get into a lot of arguments with my husband Graham because I won’t do things because I feel ashamed of myself and my disabilities. Yes, I’ve tried therapy but I couldn’t do ‘telephone therapy’ when Covid hit so now I get nothing. I really am my own worst enemy.

Defeating

Life is defeating me. Don’t get me wrong, I feel like we had a nice summer with some lovely activities. I love family days and spending time with my kids. I love having my kids around even if they ignore me most of the time. But, I’m sick of the pain, the constant, never ending pain which is defeating my body, my mind and my will to carry on.

I keep going because there is always something to keep me carrying on. For example, my kids birthdays, I have to be strong and happy for them. Our holiday, even though I was overcome with a feeling of dread and catastrophising the whole thing, I knew I’d put on a brave face and get through it. In the end, I didn’t have to, we had a lovely time. It wasn’t all completely smooth sailing but it was so nice to get away after so long. Then there was the back to school preparation, my children were so excited about their new beginnings. I couldn’t let my body or my insecurities defeat me. (Although it nearly did!)

There is always the next thing I have to stay here for, I just worry that one day there won’t be. Or maybe I don’t worry because then I feel I can go in peace.

On top of my illness I have other issues that try to defeat me every day, family battles, battles with getting help for my children, battles with my own doctors, even cooking the evening meal every day is defeating me. Please hire me a cook that will whip up whatever my fussy family wants at the time because I certainly can’t manage this impossible task.

Concentrating

I’ve found it difficult to find the time to concentrate on anything lately, but I do enjoy listening to my ebooks and doing my crochet. But if I’m honest, the less concentration the better, you’ll often find me slumped over my yarn with my earphones in, fast asleep.

I’ve been trying to concentrate on doing a course from The Centre of Excellence but I’ve not done much over the summer holiday. I will try and get back into it because it was helping me a little. I can’t stop until I get my certificate.

I’m also concentrating on writing a book. Something I’ve always wanted to do. Heck, I don’t know how people do it though, I have to keep reading and re-reading what I’ve written to the point where it bores me. And now I’m thinking that it would bore anyone else who read it, if it ever gets that far!

Concentrating is not easy for someone with a chronic illness but sometimes it’s a necessity, especially when you are trying to get help from your doctors, for you or your family members. If there was a super power going spare then I think I’d choose concentration. (Unless walking was on offer!)

Empowering

Whenever I try to say how I feel I get people trying to empower me with positive comments. It helps, but sometimes it triggers my shame too. I know I haven’t really accepted my illness and disabilities. I really wish I could, I really wish people could understand.

I think I need to be kinder to myself. I am always good at listening to others and trying to make them feel better, but I’m pretty rubbish at accepting the same for myself.

The struggle this week has been to empower my teen with the courage she needs to go to college. She’s finding the induction week very difficult but I’ve tried hard to give her coping techniques and I’m hoping beyond hope that today has gone better. If we can’t empower our own children what chance do with have.

That’s my writing prompts for this month. I think Sheryl has helped me to tune in to my negatives but it’s not always a bad thing, sometimes you have to accept that things are not right and life is a struggle. Then you build up the energy you need to just keep going.

My post for August