My Chronic Illness Round Up for October

At the beginning of each month I write about my Chronic Illness. I used to follow writing prompts from Sheryl who writes A Chronic Voice. But she’s not written any for a while so I just do my own round up now. I had actually forgot this month but reading through my Blogtober Round Up for 2022 I realised just how much illness plays a part in all of my family’s life. Last year, in October, Graham had a heart attack and it was worse than any horror film or story. I thought I was going to lose him and it was real scary. Little was I to know that I was going to lose him anyway, because even though the heart attack didn’t take him away, he decided that walking away from me and his family was the only way to save himself which he did in July this year.

What Do I Have?

This will get repetitive but I’ll post the same thing each month. My chronic illness is Stiff Person Syndrome, like Celine Dion. I have a particular form of Stiff Person Syndrome (or SPS) known as PERM or Progressive, Encephalomyelitis with Rigidity and Myoclonus. It’s an incurable neurological disorder which is extremely rare and also varies from patient to patient.

How I’ve been Getting On

I think depression has hit me hard this month. When Graham left I was bereft but I carried on. I took my family on holiday by train. I kept on keeping us all together. I looked after my daughter when she had to go to A&E and I’ve been dealing with my youngest boy’s bullying problem since he returned to school last month. I’ve also won my appeal for an EHCP (Education, Health and Care Plan) for him.

But, sometimes even the good things have felt like I’m being pelted with a ton of bricks. When the very chirpy car salesman called me to say my car was ready, all I wanted to do after the call was cry? How am I going to drive after 5 years of being a passenger? Plus it’s one more step where Graham will no longer be needed in my life.

Physically, I’ve not been doing very well. I have always had moments of paralysis right from the beginning, but this month it happened for the first time while I was standing. I often get a warning that it’s going to happen, but this time it just did. Like a fool I tried to move, with my aids, to get to somewhere safe, but my body had other ideas and I ended up on the floor. I wasn’t hurt, I didn’t go down fast, I kind of slid down the wall as my lower body gave way. Then my top half refused to work and my son couldn’t get me up and into my wheelchair. I was a dead weight. My son and daughter (the only ones at home at the time) made me comfortable with cushions. They wanted to call an ambulance but I knew there would be nothing they could do for me. Moving me too soon would have hurt me more. I just had to wait and recover.

After the paralysis comes the pain and it was horrid. Because I could now move a little I was able to help my son help me get into my wheelchair. Then the tiredness because the whole process wears me out. (and everyone around me.) I have to give a big shout out to my son and daughter who were absolutely brilliant. And also to Graham who did arrive after a panicked call from our daughter and was able to move me from my wheelchair to the settee where I rested until I felt better. It took me a long time to recover, and the pain remained for days.

The Future

My next IVIG is in two weeks time. As I kept a before and after diary after my last session I know that it’s not really helping me. But it has been keeping the more scarier things at bay. Sadly, I’ve noticed those getting worse again. The paralysis is happening more frequently while I’m standing, I was stuck on the stairs the other day. My older daughter came to the rescue but there is nothing that can be done. Eventually I was able to bottom crawl down the rest of the stairs, but it hurt.

The last time I saw my consultant I was discussing having my treatment at home. But now, I think it’s time to ask him to change my treatment. I know there are a couple of things I haven’t tried which I’m sure he was saving until I got worse. I think that time may have come. Or it could all be down to my depression, so I will talk to my GP first and see if there is anything that can help with that.

One thing that I need to take care of is my blood sugar, my condition can cause issues like diabetes and this is really common in people with Stiff Person Syndrome. Energy Renew is something that can help with blood sugar.

Testing Times

I have nodules on my thyroid which could be nothing at all. In fact my consultant is sure they are harmless. Just to be on the safe side I am having an ultrasound scan in a couple of weeks. I’m trying not to think about it. It will just be a scan and they’ll say it’s fine and I’ll go home.

I think I’m more scared about driving again. I’ve driven a hand control before but that was years ago and I didn’t really like it. I remember when I picked up that car from the dealer and I asked for a demonstration but they had no idea how to use them. So I had to drive home and learn on the way. I did it, but it frightened me so much I actually threw up once I got home! This time they are offering me a few lessons and a mini test drive to check that I can control the car. It has relieved my anxiety a little. I used to love driving so much, maybe I will learn to love it again. My next step will be to try and get a hoist to lift my wheelchair in and out of the boot. They are really expensive but I should be entitled to a grant, it will just take some time. So in the meantime, I’ll be able to drive but I won’t be able to get out of the car without having someone to lift out my wheelchair for me. One step at a time! (or not in my case!)

So that’s my round up for this month. You can find more about Stiff Person Syndrome Here. And please take a look at this Instagram profile where Andrea shares her husband’s journey with Stiff Person Syndrome. She’s an amazing Advocate and Ian so brave to share his pain so other’s can see just what it’s like.