The consequences of my birthday actions finally caught up to me yesterday, and today.
It didn’t help that my memory failed me yesterday morning, so as I led in bed after breakfast, my Hemicrania and occipital neuralgia were ramping up for a fight. When it finally reached a solid 25/10 and my droopy face had returned, I wondered, “did I actually take my pregabalin?”
I couldn’t remember, absolutely no recall. I eventually made my way downstairs to where I keep my meds to see if it would trigger a memory. It didn’t work. I weighted up my options, and decided I was in sufficient levels of pain that I’d rather take it and end up high from double dosing, than to leave the pain getting any worse.
I didn’t get high so I guess I had forgotten, but taking it late doesn’t really have the same effect and all it did was take the edge off. Juggling chronic illness, meds, supplements, life, energy and everything else is hard work, but it’s even harder when you rarely have the capacity to create memories anymore.
It’s something I learned a lot about in the FND education course. I now understand why it’s hard to make memories or recall information (which I’ll write on soon as it’s quite interesting!) , but most days there’s little I can do about that. So we roll with it, and hope I don’t forget something major like forgetting to take my meds.
It does make me wonder sometimes why I’m pushing through withdrawals to try and come off the pregabalin. I knew I was signing up for higher pain levels, and hopefully with the really slow reductions the pain won’t be like yesterday. But it’s still quite scary to step into the unknown. However, I know the drug is horrible and I know in other areas it’s not helping and worse, contributing to some issues. It’s got to go.
It’s a bit like choosing whether to do something without my walking stick or chair. It’s a gamble, and I don’t know for certain how something’s going to go. Sometimes if I go to eat out, park right outside and don’t have far to walk, I might risk no stick. Often I find this was the wrong decision, but we know how I feel about being seen with aids or being seen as disabled.
It’s a bit daft really, because without the stick I become more disabled very quickly and it’s visually far more noticeable than if I’d just used my stick. In fact, I look like a bit of a one man rave, but I still make this mistake.
I thought having a stick that didn’t remind me of old people would help, and I suppose it does to an extent. It’s nothing exciting, I certainly can’t afford a stunning stick from Neo Walk. It’s simply black and silver with a comfortable ergonomic handle, a dress up or dress down stick. But to do things without it is a gamble, and the house (FND) always wins.
I’ve lost my train of thought now, but I know we started with the consequences of my actions. Ultimately, everything comes with a catch and I have to weigh up if that catch fits in my diary, or whether I’m mentally strong enough to handle it, or how bad it’s likely to be. Like weighing up the risks of coming off the pregabalin and deciding I have to try.
I did well for it to not hit me until Tuesday I think, I’m going to take that as another win. But I really do hurt. And the heat doesn’t help with inflammation and recovery. But I kept the week clear because I’d already decided that I’d take whatever price my body would demand I pay.
I’ve still managed to do things, which in itself is another achievement. While bed and chair rotting, I’ve been looking into what I might like to do with my life. The universe has been sending me signs, and I think I’m at a point where I need to start listening. Not that I can work right now or move into my dream bungalow tomorrow, but I can plan and take steps towards those dreams and that’s what I’ve been looking into.
It’s quite exciting actually. The one thought I keep coming back to, and I know I’ve mentioned it before, is that not many people get a chance at a do-over in life. A complete fresh start feels like a gift, even if it’s not one my body or health are ready for me to make use of yet. But I don’t want to waste it – I’m fairly certain I won’t like what the universe throws at me next if I was to get it wrong again.
So that’s me and how I’m coping with my jail time this week. Lots of electrolytes, water, rest, naps, snacks and research. It’s very rock and roll, and also very intriguing that I’m not as miserable as the pain is making my face look – which looks like half of it was painted by Salvador Dali.
Enjoy that amusing thought, it’s long past my bedtime!