Chronic Illness Update for May, Telling it All!

I like to join in with Sheryl’s Chronic Illness Writing Prompts because it gives me an opportunity to tell you all about my chronic illness and how I’m getting on. It also helps me to connect with others with chronic illnesses from all over the world. You can read all the posts from Sheryl’s link above. This Months prompts are Telling, Speaking, Worrying, Progressing, Fantasising.

Telling

I’m going to interpret this as the results of my own and my daughter’s tests which have been quite telling. My daughter was told she was likely to have Chron’s disease because of all her symptoms and the fact that she has had increased calprotectin in her tests before. Now they are saying it isn’t Chron’s but she has been referred to another consultant for a possible colonoscopy. They discovered issues with her bowel on the MRE scan but no sign of disease. We are still waiting to find out what is actually wrong with her. Also, she is still catheterised and we have heard nothing from Urology, so we don’t know how long this will continue. Thankfully her district nurse is being very helpful and she is trying to find out what is going on.

My Own tests have also been telling. The new pain that I talked about in March’s prompt has not gone away and tests have shown that it’s nothing serious, just another pain that I have to get used too. Oh Joy! But it’s good it’s nothing serious, I’m already learning how to deal with it, good pillows in bed, no sudden movements, it’s just a new pain. I did have something show up on my thyroid which needs further investigation and may be the cause of my swallowing problems. But they are not rushing to test so I’m not worrying. It could be cancerous, but it’s unlikely, and if it is, it’s easily treatable. No worries.

Speaking

When I last saw my consultant he asked me to make a video about my condition and the treatment I have, IVIG (Intravenous Immunoglobulins) and how it makes me feel. I was a bit nervous, I don’t normally like speaking to camera, but I did it and now he will use it to show his students as it is a teaching hospital. He seemed really pleased with it, I just hope it helps to raise awareness of my condition, Stiff Person Syndrome. It’s always good if doctors have some idea what they are dealing with, most doctors I’ve seen don’t have a clue what it is. I swear they think I’ve made it up!

Worrying

I have a lot to worry about at the moment. Boo, my teenager, is about to embark on her GCSE examinations which will determine which college she goes to next. She doesn’t seem too worried though, I think the school is helping to keep them calm and collected.

I’m worrying about my youngest boy who doesn’t even have a school. We are Home Educating at the moment but he really needs a special school to fit his needs. I applied and was turned down and now I have to prepare a case for tribunal. It’s a lot of work but I’m trying not to stress too much.

I’m worrying about Star, my older teen and her health issues. We go on holiday in 3 months and it would be so nice for her to be rid of her catheter by then, I can’t see her enjoying herself much as she hasn’t really been out of the house since she had it, and that’s coming up to 8 months now!

Progressing

I know that I have a progressive illness and there is no cure but that doesn’t mean that I have to give up. I’m always trying to find ways of pushing forward and making something. I’ve always wanted to write a book and I know I can, but I never seem to make enough progress. I maybe need a little more discipline and focus.

I am doing a course at the moment but I haven’t made much progress lately, I need to get this one finished as I’m almost there, I just need to get my head in the game!

It seems I have a lot on my plate and progress is slow, but I’ve never been a racer, I just plod along and get things done eventually. I just hope I don’t run out of time.

I have been progressing with my journaling though. I bought myself a Mind Notes Journal for Christmas and I enjoyed it so much I decided to become a reseller and opened my own little online shop. (Now, I’ve had to give up a corner of my bedroom for stock, but I will sell it all eventually!)

Fantasising

Some people fantasise about becoming rich or owning a big home, or even becoming famous. People with Chronic Illnesses often fantasise about a cure. I think I’ve probably done all of this, but what is really telling about my life is that I fantasise about normality.

I see friends and family with their ‘normal’ lives, going to work, their kids growing up and leaving home, having grandchildren, retiring, travelling, even going out and having a good time. My family is far from normal and I often wish things could be different and wonder about what life could be like with healthy family members.

I recently got my driving licence approved for another three years. That means I can drive an adapted car, and it comes just at the time we are about to choose a new one. I fantasise about driving again, but it will never be the same as when I was not sick. I can’t just jump in the car and go somewhere alone. I need someone with me at all times. I can’t get in or out of the car without assistance, and I need someone to get my wheelchair for me. I remember once, sitting in a car park waiting for my husband. A woman in the car next to me wheeled up in her wheelchair, transferred herself into the driving seat and then managed to fold the wheelchair and pull it up onto the passenger seat. I was so impressed! I can only fantasise about being able to do that… or can I, would it be possible one day? If I had a lightweight wheelchair and a smaller car that I could get in without help, maybe, possibly, I can dream surely.

That’s it for this month. I hope you’ve enjoyed my telling catch up. Please remember to pop along to Sheryl’s post to see what everyone else has been up to.