A week of thoughts.

Since I am not recovering like I normally would, and struggling with accepting that mentally, I decided that I would reset my room on Wednesday. 

I stripped my bedsheets to wash over 2 weeks ago and I hadn’t managed to get them back on yet. So I stripped what bedding was left and got those in the wash and dried before lunch. 

This left me with remaking my bed, which is something I find incredibly hard, despite the new bed. I rested a lot but it still took everything I had and more. 

Mum came home from work and found me crying whilst fighting to get my duvet cover on. She took over, put my duvet cover on absolutely perfectly (IYKYK), hoovered the rest of my room, put everything back where it belonged and left me to pick which candle I was going to light. The most important step in signing off the task as complete. 

I knew it was somewhat foolish to take on this task, but the reality that I’ve been sleeping on an unmade bed for nearly 3 weeks, especially when nearly every day of that has been me stuck in bed, is ridiculous. Only it’s not ridiculous, it’s my reality. 

I’ve also been putting off seeing a GP about my HR and food reactions, but I just haven’t got the fight in me right now. But then Charlet came to the rescue. She announced in the admin chat that a company called Lola has a sale on their blood tests. Without blinking Mum transferred the money and make me book their advanced 360 test. A nurse will be out on Thursday to do the blood draw and I should have the results in a few days. The tests cover EVERYTHING, 55 markers get tested. 

I’m excited to be able to do this and so grateful Mum insisted as it could give me some answers to act on. Of course it comes at a premium, even on sale it’s cost £108 and would have been well out of my budget. So I’m exceptionally lucky to be able to get some answers and fast, but I know this isn’t something I can afford again.

I also purchased a chopping tool due to my difficulties using sharp tools often. I’ve had nothing but chicken salads for the last week to avoid reactions and it’s worked, but I haven’t been able to prepare this myself. So I got a chopper with all sorts of tools that can do any chopping I could possibly imagine and with zero risk to my fingers. I’ll let you know if it helps!

I’ve just been adding thoughts here throughout the week, I’ve needed to because I’m not in a good place. I’m very much in a ‘I just can’t do this anymore’ mindset. But I will, of course I will, but when you’re in it, it doesn’t feel like you can. I’ve tried to do little bits to kind of cheer me up and break the monotony, like doing a puzzle. But I paid a heavy price. In 2022 I did a quite a few puzzles, a sort of semi-active rest, and they were hard to do but if I just did an hour at a time a few days a week it was manageable. I can’t do that now, but I also can’t keep still in bed anymore. I’m sick of it, sick of reading, sick of pressure sores, sick of the same 4 walls and the boredom. But mostly I’m sick of the pain that’s keeping me there. 

I hope this coming week is the start of more positivity and possibilities, especially with both rounds of blood tests. I’ve arranged to see friends on Tuesday and Friday, even if I only last an hour, because I need to break free and also nourish these relationships. My new website will go live on Wednesday, which is something I am excited for. So there’s lots on this week, and I’ll probably pay, but I’m sure I’ll feel better mentally for it. 

Finding the balance between protecting my physical health and my mental health is incredibly difficult. It’s not easy making the choice to listen to my body (especially for 3 months!), knowing it will be detrimental to my mental health. Or doing something for my mental health and being punished by my physical health. The chronic illness journey is hard to navigate at the best of times and I’m still learning. Today is better, awful, but better. And that’s gives me hope.