A lot seems to have been going on over the past few weeks, but at the same time not much. A couple of things in particular have caused me to truly reflect on the impact my condition has on me every day, and not just the pain but the brain fog from the meds. I think I’ve been telling myself it’s not that bad and I’ve just had too much time to dwell on it, and maybe there’s something in that, but the way things pass through my brain without apparently stopping to be registered has really made me realise why I was struggling so much to keep up with juggling umpteen pieces of work before. The fact that I’ve struggled to get my brain into gear to write a blog about what’s been happening says a lot about how muddled I’m feeling. Everything just takes forever as I can’t concentrate on anything. It’s taken me nearly 2 hours to write and review this post. 😮
A couple of weeks ago I was getting increasing amounts of pain again. Karen was wonderful again, got me to talk through what was happening and suggested I try program two again. She said that given how I only seemed to be able to feel the device on the right side when both sides are active means they might have to consider splitting the programme into two and (I think) do bursts on each side separately. She will look at that when I go back in December, and will ensure a more senior/experienced Abbott technician is involved. Things do seem to have stopped escalating since I changed program. Meanwhile I not only got the clinic letter from September’s programming clinic, but I also got an additional appointment with the surgeon at the end of November. I’m presuming given the timing of getting the letter and the appointment notification that there was some sort of conflab around the letter and it’s been decided I should be seen by the surgeon again sooner than my April appointment.
With hydrotherapy being stopped due to the increased pain after each session, I have just been doing a few balance-based exercises. However, when I was talking to Karen she said she was now happy that I no longer needed to worry about protecting things post surgery (ie concerns about the leads moving etc) and I could start doing more upper body exercises. At my last physio session Kate therefore added some neck and torso stretches to my routine, and they’ve been going ok on the whole, although I do have to admit there are days I can’t face the thought of putting my body through even these fairly gentle exercises.
Acupuncture
Kate had spoken to the specialist therapist who does acupuncture to see if I was a suitable candidate. The view was that, whilst acupuncture might help with the pain, it would only be a temporary thing, and so for continued relief I would basically be signing myself up to frequent acupuncture sessions privately indefinitely.
Peripheral neuropathy
Maybe I’m feeling particularly low about it or maybe it has genuinely worsened but my foot has been more noticeable recently and it’s probably been the biggest cause of me having trouble sleeping. I’ve been getting more spasms in my legs as well, notably my left more than my right. Almost certainly linked to that I’ve had more falls. Only one where I’ve not been able to stop myself hitting the floor, but I’d say 2-3 a week on average where I’ve had to grab something to stop myself going over.
General health
As reported last time, my energy levels seemed to pick up when I started the vitamin and iron supplements, and that has generally continued. I’ve been venturing into the woods with Bertie a bit and pottering around the house doing small jobs. There are still times though I get wiped out without much explanation. For example yesterday I went to B&Q to get a couple of things. I took my time going round the store and felt ok when I got back to the car and went to the pharmacy to get my prescription (which they didn’t have despite assuring me last Monday it would be there last Tuesday!) and then popped into Costa to get Ruth and I coffees. When I got back to the car I was knackered and by the time I got home it felt like my upper torso was being squeezed. No pain as such (no more than normal anyway) but like there was something constricting me. That continued for the rest of the day and evening.
I reached the point last week where I decided I just need a bit of an MOT type check-up. I hate taking up GP’s time as we all know how overloaded they are, but I’ve come to accept that I’ve got a lot going on medically (no shit! I hear you say 😏) and just putting it all down to some weird neurological condition might not be correct. Amazingly I got a very nice and helpful receptionist at the surgery and she managed to get me a double face to face appointment with a GP later this morning. I did check it wouldn’t be with the GP I spoke to a few weeks ago who just said my case was really complex and way beyond what she could deal with. 🤷♂️ News of that later – by which I mean later today, but you know me and my brain! … 😉