CoQ10 is not the answer to everything, but I do feel a little brighter in my suffering. If that’s a thing.
The 3 days bliss I had were fantastic, but I’ve been paying the price since. I haven’t seen anyone, and my only adventure out was to take my chair to Swindon for its service last Tuesday and pick it up on Thursday. Outside of this, I’ve been back to bed and chair rotting.
It seems to have worked, I am starting to feel better today. I have therapy shortly, and only have plans on Wednesday and Friday this week. It’ll be a few hour with friends on each day, which I really hope doesn’t cause the level of rest I’ve needed the past week or so. Even so, it’s going be good to see people and escape the house for a little bit.
Edited to add: Wednesday was a day with my Goddaughter and her parents. Nothing crazy, we went to a local lake/woodland for a walk which was exactly what I needed. The peace and healing of nature, with the joy of sharing it with loved ones. I even got to limbo a gate in my chair like the big kid I am!
Next week I’m in Southmead on Tuesday AND Wednesday. Both early appointments which will see me leaving between 8-8.30 which is long before my “functioning” time. But it’s necessary. Tuesday I see the functional neurologist regarding the FND, the appointment everyone hopes will bring in the help and support I’ve needed for nearly 5 years.
Wednesday is to see the reprogramming team and my neurosurgeon. Truthfully, I don’t think the programme is the issue. I’ve had issues with inflammation since the vaccine, and it’s only getting worse, despite the reduction in histamine foods. I don’t think it’s an MCAS issue, When my inflammation is up, it’s like it’s pressing on the nerves in my head and causing truly unbearable pain that nothing I do helps. That’s not an issue with the implant, but I honestly don’t know where else to turn.
I’ve had issues with my head and neck since the vaccine, it was the first issue to make its presence known. I’ve told everyone how it feels like my neck can’t support my head. I cannot be upright and unsupported for more than a few hours without pain and issues. Even when upright I’m normally supporting my head on my hand to appear “fine” and delay the pain.
But mostly I’m dreading the appointments, and not just because of my anxiety around appointments. 2 days in a row, early mornings, and a level of fatigue that I’m really struggling with. Southmead is about the same distance as where my chair went for its service, when I dropped it off I was confined to my bed for the rest of the day. The chair was ready the next day but I couldn’t get up, I knew I couldn’t do the drive again. So I went Thursday, when I felt like I’d be able to do the drive safely. And I haven’t managed anything since. I did those drives at lunchtime, during my “functional” hours.
Managing my health is challenging at the best of times, even harder when I do my best not to appear like I’m struggling around other people. I’m working on that but it’s not easy, my health makes me uncomfortable and I don’t want it making others uncomfortable either. But it’s also exhausting wearing that mask, pushing my body beyond its limits to have a few hours where I can pretend everything is fine.
Those hours of being “fine” do a lot for me, wearing that mask so I can just focus on enjoying something and putting a blindfold on so I’m not distracted by my health too. I’m sure that sounds a bit silly to most, but to get a little taste of joy, and life, like how I used to is what keeps me going.
So I hope, for everyone, that this week is easier and lighter. I hope it for myself too so I can enjoy my pockets of joy and some time in the sun with Riley!