What a week.
Today is a 15/10. So much pain and exhaustion. I’m still getting B12 jabs every other day which alone is using so much energy. My arms are bruised and keep going numb and then painful. I’m also still not feeling a difference from these or the folate and iron supplements. But that aside it’s just been a lot this week.
On Sunday my Uncle passed away and it’s hit us all hard. It was a complex relationship but I loved him dearly and will cherish the many fond memes I hold. Mostly it’s devastating for his 3 daughters who are having to cope with losing a parent when they are all younger than I am and that really breaks my heart.
On top of this I’m having to find the time/energy to do my PIP review. Because if I feel shit about everything else I might as well feel shit about me too. I’m kidding. Kind of. It’s awful and I’m not finished but I’m on a deadline and have to continue to face it.
Yesterday I had reprogramming at Southmead, followed by another B12 jab. These days are especially taxing, but yesterday we really jangled my nerves which is why today is so damn awful. Really fucking awful. But I have another 2 new programmes and will continue to weekly switch between them and hope they work better to bring my pain to a tolerable level.
To top everything off, and I think I’ve mentioned this in my last blog, but my overall health issues are getting worse. The fatigue alone is on another level and the slightest thing is tipping me over the edge. Today I know I’ve got a couple of things I absolutely must do, which means that I won’t be able to make myself lunch or a cup of tea. The things I must do I don’t even have the energy for, so additional tasks are an absolute no no. That’s my current reality. Three cheers for CFS!
But my tachycardia is becoming more of an issue. This is something I’ve had to deal with since the vaccine, and with everything else going on it just became something I monitored and tried to manage myself rather than adding it to the list of things the doctors ignore. My symptoms generally track with a condition calls POTS – this isn’t me self-diagnosing because other things can cause this, it’s just the symptoms I’m experiencing are the same. Basically my HR rises when I’m sat or stood, though significantly higher when stood. Generally lying down helps lower it along with keeping hydrated, calm and in a cool dark room. But I’m finding this isn’t working, on Tuesday despite lying down for over 3 hours I still couldn’t bring my HR below 100. Being tachycardic for 80% of the day or more if fucking exhausting. I really hoped this was worse because of the B12 deficiency, but I’m 7 jabs in and starting to think this might not be the case.
A fellow volunteer for UKCVFamily sent me some music of a specific frequency which brought my HR down from 125 to 90 in just 6 minutes. She works with sound healing and the result was remarkable. I only wish I could listen to it all the time. But I’m glad to have this on hand for those times when I can’t bring my HR to a safer level. I also followed the charity founders advice and ordered some electrolytes which she finds helps on particularly bad days.
It’s not a huge amount of peachy news I’ll admit. But I have to be honest, and ultimately this is my therapy – my dumping zone. My processing space. And that means I have to write what I need to decompress. I have written most this week, but I’m not sharing them as they’re more personal to me. I hope I have some positive progress to write about soon.
But for now I’ll share some of the things on my gratitude list. I’m grateful I managed the drive to Southmead, I’m grateful I’ve not yet had to call for help to get me to my B12 jabs, I’m grateful for my friends and family who are doing all they can to help me cope at the moment, I’m grateful to Bella who is starting to respond to an increase in her meds and I’m grateful to me for persevering and doing everything in my power to better my health and circumstances. And I’m grateful to my sister, who this morning prepped Bellas breakfast and meds, as well as my coffee, before I got up 🤍