My Chronic Illness November Update Post

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. This is my November Update post.

A while ago I started writing down my story in the hopes of someday publishing a book. I kind of gave up on the idea, but then I discovered Substack. It’s a kind of blogging platform which allows you to write in segments. I have decided to give it a go and publish my chapters each week.

My first Chapter, or prologue explains why I want to tell my story. I think it’s important to raise awareness, especially of rare conditions. Substack is a great platform and I’ve already connected with a lot of other people. My subscriber list is growing, I always feel a bit self conscious about asking people to subscribe to my writing, but it really is optional. As is payment, some people who write a lot can request subscription payments on their writing, but that’s not what I’m looking for. I don’t want fame or fortune, just to raise awareness and maybe help someone else who finds themself with my condition.

I know my consultant finds me interesting, he asks me more questions that I ask him! And I’ve made him videos for his medical students to raise more awareness.

Back to this months November Update post.

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

Again, I’m suffering from depression. Sometimes I just want to build a blanket fort and forget the rest of the world exists. It’s my family that keeps me going, and it’s my family that I’d love a break from. Honestly, the amount of problems we have between us is way too much. It’s no wonder I’m not coping very well. My illness seems the tip of the iceberg when I’m having to deal with The Little Man’s EHCP, Stars medical issues and Boo’s Autism diagnosis process. That’s on top of dealing with ever mounting financial issues since my split with Graham and problems with the house and even the cat! There is never a dull moment. I feel like I don’t have time to be sick.

But I have been, literally. My last IVIG was interrupted due to a bought of D&V which lasted about 3 days. Then I was okay for a couple of days and it started up again. I was so sick I ended up vomiting blood. I was also extremely dehydrated. I know when you are sick you have to keep drinking, but I still wasn’t replacing enough fluids and I became incoherent and very ill. A few packets of Dioralyte and I felt better. I’ve not been sick since, although 111 told me to speak to my GP I haven’t had the chance.

My IVIG is due again next week, how time flies. It will be my last treatment of the year. I’ve bought the staff a hamper from the Cadbury Gift Shop. (affiliate link) They deserve a little treat for all they do for me.

Driving November Update

I’ve been practicing driving as much as I can. I’m still a bit nervous around other traffic so Sunday’s are perfect. My aim was to get to my brother and sister-in-law’s house which is about 2 miles away and last Sunday I made it. My next step is to make it to the GP surgery which is shorter distance but involves an island. I can already make it to the Little Man’s old school, which is a shame because I know I could have taken him and picked him up but he’s been de-registered now.

I’m used to the hand controls already, they seem really smooth in this car, the one I had before I felt they were less responsive and I often braked way too hard. The car has so many gadgets it’s a little overwhelming, but if I learn how to use them they will be very useful. I don’t feel stressed while driving but when I get home I feel like I’ve just run a marathon. It’s going to take some getting used to and I don’t know how far I’ll actually be able to drive as I find it very tiring.

I think that sums it up for this months November update. I’m hoping to find some Christmas spirit to brighten up my days, but if I’m honest. I’m not feeling much at all at the moment. As for my birthday, I’m not even giving it any thought, I’m really not in the mood for celebrating. It falls after my IVIG anyway, so I expect to be nursing one of my major migraines.

Oh, I do have one more bit of good news to share. I had my results from the nodules on my thyroid and they are nothing to be worried about, it’s nice to end on a high note 🙂