This is part of the AtoZ challenge, which will mostly appear on Kaiberie.com, but, because I’m special, and it’s the AtoZ of me and my inspirations, I’ll also be blogging in other places.
Today, I wanted to talk about the beginning of this whole saga, and some of the things I decided early on.
There were about 11 days between the first and second time I was seen at the hospital. In those 11 days, we didn’t know what was going on – were we waiting for a neuro consult, was my psych going to see me again?
Turns out, the answer was ‘neither’. I could talk about how much the underfunding of the NHS put my life in danger, but actually, there wasn’t anything on any of the really serious tests that we needed to worry about. They told me they found blood in my spinal tap, but I’m guessing that after 14 or so attempts to get it right, they expect that. 11 days after, I was sitting waiting for a CT scan with dye, which also proved to be a bit…normal.
But after what?
I still don’t actually have an answer for that. I don’t know what happened. And my last clear memory is years before.
So, here’s what happened ‘at the beginning’. Some of it, I’ve probably talked about in my ‘an unhappy timeline’ category, but…it’s worth talking about again.
In the weeks before October 26th, I’d had b12 loading doses, which, frankly, I didn’t get on with. I had a tight chest, headaches and difficulty breathing at the start of it (and later discovered that I had borderline problems with potassium, which didn’t help), then I had my Covid booster and a flu jab (same arm apparently, cause the B12 shots had just finished and my other arm hurt) then, an iron infusion. Do I think any of that caused it?
Probably not. I don’t get on particularly ‘well’ with anything that involves longer term or high doses of treatment, and, though it was probably coincidence, not cause, my first febrile convulsion (of many, I was on medication for years as a child) happened after one of my MMR jabs. I have issues with meds that shouldn’t trigger anything, and, twice now, I’ve ended up really sick because my meds caused my heart to race. It’s been labelled as likely meds acquired long QT. Add in the Gilbert’s disorder, it’s totally Lupus, even when it’s never lupus, and the fact that, as a redhead, I already got the recessive gene lottery, it’s likely I have all the recessive disorders in my family hiding somewhere in me, and the fun really starts to pick up.
I can’t say for sure though that it was just my body going ‘nope, overload’. There’s no evidence either way, and in fact, it could just be coincidence again. And it’s also super important to note that while I’ve ended up with an outbreak of shingles the day after an infusion, again, that’s not a known reaction, and it’s never happened again. In short, I’m special. With a capital 4. And it’s something, as a family that we continually acknowledge. But at the beginning of all of this, the very first thing they suggested was that I had a UTI. Which causes delirium in older people, but I’m not that old.
At the beginning of this though, my beloved and I were talking about how scary this was for both of us, and that if I could, I wanted to write something to help others. And at the beginning, that’s where Typing A Blank started.
It’s so important to share your story! I just started telling mine as well. You never know who your story will help.