I’ve just had therapy, which I was late for. I’m almost never late, now more than ever I’m aware of the value of time and so I try to respect when it’s given to me. But today I was late, not for an important reason either but simply because I forgot.
It’s in my diary, which I check before I go to sleep and after I wake it. I also have alerts on my diary items, the therapy one goes off an hour before. Yet, I know I spent the hour after that alert blissfully unaware of an upcoming appointment. In the same way that in the last few weeks I’m forgetting the most basic of things, like taking medication which also have alarms and, worst of all, flushing the fucking toilet.
At 32, I suddenly have an inability to remembering a toilet routine I was taught when I was a baby. I also forgot an arrange call with a friend last week that was, again, in the diary I repeatedly check.
It’s been a rough old week, though it has had some nice glimmers. But on the whole my pain has been unmanageable and such intense fatigue that today I couldn’t even make myself something to eat when I was hungry. This of course means it’s very hard for my little brain to manage much thinking at all.
And when I did feel better, I made full use of it. Now? I’m back to unbearable pain and fatigue.
That’s the hardest thing about this journey, when I have a week like this it’s hard to not feel defeated, resigned to this being my fate. When I start to feel better, I’ll have hope again that the universe will change my path and give me signs for the right direction to take for improvement.
But I’ve learned not to fight what I’m feeling so much. Aside from the fact it’s a waste of my valuable energy, it also traps me in that headspace for longer. So, I face what I’m feeling, allowing it to pass through me without a fight.
That doesn’t mean I also don’t wish for some respite. I wish I could take a little weekend trip to the coast, without my health following, so I can come back rested and ready to face reality again. But, that’s not how this works.
The same way that I’m to come of the pregabalin, knowing my pain will increase permanently and that there isn’t an alternative lined up for me. That’s a bitter pill to swallow sometimes.
But, I had therapy, and I discussed all this. I also discussed how I felt lighter for writing and sharing my health journey. My therapist encouraged me to write it, and it did help. Next week she’s on holiday, so she’s asked me to keep writing and keep releasing these thoughts which I’d rather weren’t occupying my mind.
Aren’t you guys lucky! I’ll pass on your thanks.
I’ll round off by sharing the glimmers from this week, it’s important to celebrate to successes when they come.
Saturday I felt a little better, so I decided to clear my handi-crap drawers. These are a set of drawers that sit beside my recliner and contain my handy crap. This includes a drawer for medication and supplements, a drawer which contains potions and lotions for pain and inflammation, compressions socks and gloves, nail files and clippers and my fancy pens reserved for writing important letters and cards. The last drawer contains some mindfulness activity books (great for screen-free time), dog brushes and clippers, my laptop and all the charging cables I could possibly need and my collection of heat packs and hot water bottles.
You didn’t need all that information but it’s too late now – you know how I feel about editing. The drawers had become disorganised and messy, desperately in need to a spring clean. So I did that first, then I hoovered the living room; twice, because the first time I forgot to empty the hoover and it didn’t do a sufficient job. Hoovering is a red, red task. It’s a very high energy task but one I feel a sense of accomplishment for doing.
Meanwhile, mum cleaned the kitchen, hoovered my bedroom and did multiple loads of our laundry.
Sunday, we kept it low key as my mum isn’t one for celebrating occasions. So we had a quiet day, an early evening walk in the field with Riley and a KFC on the way home. She’s a lucky lady!
The field was a secure field I’d booked, I usually take Riley on my own and so don’t dare walk down to the bottom of the field. It’s probably around 100-150 meters, downhill, but that’s means I have to get back to the top. But having my mum with me, and wanting to truly interact with my Riley, I grabbed my stick and decided I was going to walk the whole field. And fuck me was it hard, coming back up got so hard that at points all my body would do was bounce me up and down on the spot rather than actually take a step.
I talk about my legs a lot, what I don’t say is that fighting with them is fucking exhausting and comes with pain. Not just pain in the moment, but I was trying to drive home with muscles spasming, numb toes and freezing burning pain. Then I have to get compression socks on, creams and heat. However, I made it to the bottom of that field with a great big smile on my face and my heart felt all fuzzy and warm (and it wasn’t the POTS!), and that’s what I’m holding onto. The joy I felt in that moment, with my dog so excited that he was literally bouncing around us. Like me, being there with him, was the greatest thing in the world. And it was for me too.
Also someone tried to comment on my health story and ask if I’d tried sex, and I found this childishly hilarious.
So there, enjoy my glimmers like I do. I come here with everything, I process and discuss and moan, but I also celebrate because every bit of joy I get is what keeps me fighting. And this week I will start taking CoQ10, a supplement that I hope will have a positive impact on my energy so that I can get more joy.
Keep ya fingers crossed for me!