For those of you who know me, I’ve been living with a Chronic Illness for seven years now. I didn’t want to post about it all the time on my blog but I know that some like to read and catch up with how I’m getting on. I was taking part in a monthly Chronic Illness Writing Prompt link up and using that as an update. But there have been no prompts now since May. So I’m going to start my own write up once a month.
What Do I Have?
Just for those that don’t know, 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.
September 2023 Chronic Illness update
I’ve just finished my IVIG (Intravenous Immunoglobulins) at the hospital. I have 80mg every six weeks delivered as two doses of 30mg and one of 20mg over 3 days. It’s taken years to figure out this dosage but it’s what currently works for me.
Just in case you are interested I also take 1800mg of Gabapentin, 60mg Baclofen and 20mg of Diazepam a day as well as any further pain relief I might need. I do tend to avoid Ibuprofen though as it interferes with my other medications. If I get muscular pain I can use an Ibuprofen gel which helps.
Anyway, that’s the boring stuff out of the way.
Last month I saw my consultant, I see him twice a year for an update. There really isn’t much else he can do for me but if I have any worries he gets things done. Last visit he ordered an MRI because I was worried about new pains, but it turns out that they are just new pains and nothing more sinister. Although I do have nodules on my thyroid which need checking out. He was surprised that I have still not had my ultrasound on my thyroid so he will push for that.
We also talked about my having my Immunoglobulin at home. This is generally a process where you have the medication subcutaneously rather than intravenous. It takes some practice and it will mean messing around with my doses again, but I’m really keen on the idea of having my treatment while lying in my own bed at home.
How I’ve Been Coping
We’ve had a major family upheaval in the past couple of months and it’s obviously taken it’s toll on my health. But on the plus side I’ve put aside the pain (and misery) and achieved something I didn’t think I would. I took my children away on holiday on the train and we had a lovely time. I couldn’t have done it without my adult son and the help of Passenger Assist on the trains, but I am so proud of myself for achieving this.
Also, I’ve been keeping a detailed diary for my consultant. He’s always asking about how many times I have spasms before IVIG and if they are less afterwards. It’s really hard for me to tell him. My family keep saying I’m so much better after IVIG but if I’m honest I just feel sh*t every single day. So I thought I’d keep a detailed diary. If I wake up in the night in pain (As soon as I can move) I am writing down exactly what I’ve experienced. And the same goes for during the day. I’ve already noticed a pattern in my pain levels and spasms before the IVIG so it’ll be interesting to see if anything changes now that I’ve had it. When the next few weeks are over I’ll tidy it all up and give it to my consultant on my next visit in February next year. (I might actually keep it going because I do like to find patterns in things and it would be interesting if there is a pattern to my pain and symptoms. It might even help me avoid them, or is that wishful thinking?
New Car
Earlier this year I got my driving licence back. It’s a medical licence and dependant on what my consultant says. Well, he said yes and I can now drive an adapted car. I did have one before, with hand controls. When we went to look at new cars earlier this year I chose one that could be adapted or driven normally. I figured my husband would still be doing the driving but I could have a go every now and then.
I was told the car would be ready by the end of August, but now it’s been pushed back to November. I have contacted the dealer and explained my situation and they are going to see if they have anything available for me by the end of this month. I might contact Motability and see if I can get a grant for a boot lift for my wheelchair. It will be so nice to have that independence again.
I think that’s all for now. I’ll see you for another update next month!
I am glad you have found a routine for your IVIG that works for you. I am glad the MRI went well and I hope your thyroid is nothing to worry about. That’s good that you might be able to have your treatment at home.
Well done for going on holiday by train. We have no disabilities and it was a stressful, tiring experience for us when we went by train for our holiday.
Thank you so much for sharing your health update, Anne. This is an illness that I am not familiar with so I really appreciate learning more. I think it is super important for us to share our health journeys when we have a forum to do so. So many people are out there struggling, thinking they are alone. And while your illness is rare, I am certain these posts will reach the people who need it and help them!
Shelbee
Keeping my fingers crossed for you that all works out with the adaptive car! I’m glad your MRI went well and hope that those thyroid nodules aren’t anything to worry about (I know some are and some aren’t).