It’s been a while.
The last time I sat and wrote anything down was on the 13th April and I can’t remember if I even posted that.
I’m in a lot more positive place than I was then. I was generally feeling sorry for myself and I think I’m mostly past that. The sessions I had in councilling really helped, and although I’m in a post critical care group that has monthly meetings I tend to be more of a lurker in the WhatsApp group. But it helps. Even if I don’t attend the meetings much via video chat, mainly because I hate video chat! Seeing that I’m not the only one going through all this shit has really helped and I know I can write in the group and I’ll get advice if I need it. I like that.
I had my first discharge, it was only something minor… plastic surgery on my tracheotomy scar. It healed awkwardly but because I’ve been rubbing body butter and oil into it it’s now ok. It used to pull when I looked up, now it’s nearly normal so I’m not bothered.
And call me weird but I like my scars. They are a reminder of what I’ve been through, a sort of proof of purchase. I don’t want to forget. I need the reminder to stay humble. So no surgery required!
My eating is getting more difficult so I’ve been referred to speech and language therapy (SALT) I’m going to need further and possibly more invasive investigations as to why I’m coughing so much and I need the bipap after food. Even without food I’m needing the bipap during the day because of coughing fits. It’s the only thing that stops it. It may have something to do with being vented and or having the tracheotomy. Otherwise it’s the raised diaphragm. Either way I need it looked at because it affecting my quality of life. It limits the amount of exercise I can do, although in other news I managed to do an hour or gym floor work and a 45 min aqua class in July. Since the heat has gone mad I’ve hardly left the house because my breathing is awful in the hot weather. So I’ve tried to take it easy. The pool in the gym has however been a lifesaver giving me a little relief from the unbearable heat. The gym also has aircon! But until my breathing gets better I can’t really go for it in the gym for my rehabilitation. My muscles are in desperate need of building up but I need to keep on reminding myself to take baby steps.
I’ve been out of hospital and recovering from covid for a total of 17 months now and I still feel like haven’t reached the halfway point. I actually don’t think I will ever be the same again. But I’m ok with that now. I know how far I’ve come and I’m proud of the work I’ve put in to get me this far.
I’m getting used to people staring at me with oxygen on. To be fair most people are kind. You get the odd weirdo who thinks you can’t see them looking you up and down, but that’s more of a reflection of them not me.
I love it when kids ask questions. They’re so innocent with it. I had a little boy ask me what the tube was, and why I needed it. Then the conversation was over and he carried on playing with my niece in the park. The parents are often apologetic, but I always tell them I would rather they ask me.
I feel really good in the gym with it on, I can feel the people willing me on and smiling when the spot me when I’m trying to exercise. It’s such a lovely feeling and I really appreciate the words of encouragement.
That’ll do for now.
I’ll try and write a bit more often for anyone who’s not bored of me yet!
Thank you for you support!
Love bex
🌈💕
Ps I added a beach photo because I’m desperate to go to a beach, so if you know any good beaches that are accessible for wheelchair/scooter use please let me know in the comments xxx 😘
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