It’s been four months since my last round up so I thought I’d catch up on what’s being going on with my Chronic illness now that it’s summer.
Let’s start with my good news from the last round up back in April when I was approved for home treatment
Subcutaneous Immunoglobulins
As my regular readers will now I have been visiting the hospital for 8 years now and having intravenous immunoglobulins. This is a treatment made up of plasma from thousands of doners which helps to regulate the anti bodies in my blood. At first I thought it would be my miracle cure, but it wasn’t. Then I gave it up because I thought it wasn’t doing anything, I was wrong. The immunoglobulin treatment has helped to keep me from getting worse. When I stopped I went downhill very fast, so I know it’s doing something. Plus I believe it got rid of my myoclonus (or jerking) which is a big bonus. Nothing more embarrassing than an attack of a fish out of water!
However, I was getting fed up of going to the hospital. Lots of things had changed, and although the staff were lovely it just wasn’t the same. Not only that, I was having to rely on my ex to drive me there and that was just getting me down. So, I asked to have the treatment at home and it was agreed.
Now, because I can’t do it intravenous (into a vein) I have to do it subcutaneous, which is into the fatty layer of skin where it is absorbed into my blood stream. I had three training sessions at the hospital but I’ve been doing the treatment at home, in my own bedroom ever since and I’m really happy.
It takes a while to get set up there is so much equipment to get ready. But then I can sit back and let it happen. I have no problem at all putting the needles in me, they are tiny and I barely feel a thing. Sometimes they cause a bit of swelling and I do get the odd bruise. But it’s ok. I have to do it every week, but it just means a couple of hours in bed… not a problem 😉
And it seems to be working, yay!
Here’s my equipment!
Celine Dion
Celine Dion also has Stiff Person Syndrome, the same chronic illness as me and she released a documentary film about her life. It was mostly about why she hasn’t been able to continue with her singing career so it was mostly aimed at her fans. She didn’t talk much about SPS which is a shame because she could have raised a lot more awareness. But that wasn’t her main aim. She did talk about what the condition was, the fact that she has to take daily medication, and have IVIG (at home with her own private nurse.) She also has physio therapy and can do a lot of things I couldn’t even dream of, but we have to remember that she was probably doing these on a daily basis for her performances anyway, so she’s just trying to get back to where she was. In all honestly, I couldn’t lift my leg that high before I got sick!
She asked her nurse to talk about what IVIG was which was helpful. Then she finished with being filmed having a full body spasm. Which was rather painful for someone like me to watch as I could feel everything she was going through.
She is determined she will beat this condition, but it’s very rare that anyone makes a full recovery, even with all the best doctors and treatments.
Falling
I’ve noticed that I am losing my balance a lot more. I only walk in my own home as when I’m out walking is difficult. Not only physically, but my brain sort of shuts down on me and I forget how to walk.
Anyway, I’ve noticed that my brain is shutting down on me inside my own home too and sometimes I feel myself toppling. I never walk anywhere I don’t have something to hold on to whether it is a door frame, counter top or even wall. I don’t like open spaces. I can walk across my living room floor which is about six steps, so long as there is nothing on the floor.
I bought myself a wheeled chair in the kitchen to help me move around more without getting tired, but I’m scared of it now because I ended up going backwards on it and ending up on my back on the kitchen floor. I can’t even tell you what happened it’s a complete blank. Thankfully, I had help at hand and was helped into my wheelchair. I was a little sore, but no real damage done. I didn’t hit my head thank goodness. (It may have knocked some sense into me)
I also fell while using the vacuum cleaner. I tend to find it quite easy to vacuum because it’s like having a walking stick…the same with mopping in the kitchen. So long as I don’t overdo it. However, again I have no idea how it happened but I fell backwards. Luckily the sofa was directly behind me to catch my fall but it scared me. I’ve now treated myself to a cordless stick vacuum cleaner which is a LOT lighter and it works really well (Shark brand if you’re interested, but I’m not trying to advertise.)
That’s about it really. I’ve not been out much, apart from book club once a month (Which is nicer than hospital) Now the weather is warmer, I may try and get out a bit more. I’m going to have my car back off Graham next week, so wish me luck. I will still need someone to come out with me to get my wheelchair out of the car, but I want to be back on the road.
Leave a Reply Cancel reply