Health

It’s around 6 months since the pulmonary embolism and while recovery is going ok there’s still some things not right. I’ve come to think of them as things I’ve lost in the fire. They’re not coming back or at least not without hard work.

I finally have some closure on the PE that turned my life upside down at the end of October last year. I have it written on a piece of NHS branded paper. It’s innocuously included in a list of other ailments from a consultant only vaguely related the rest of the bullshit I’m having to deal with (health wise not NHS they’ve been ok/great).

“You did it proper.” Consultant Adding to my list of things I never want to hear again. Those words were proceeded by my consultant showing me the images of my chest and the two bright white spots that were the clots that nearly killed me.

It’s been about 2 weeks since I was in hospital and things are starting to sink in. Firstly just how serious things got and secondly the trajectory my life is/was taking.

The title pretty much sums it up, BPEs suck. How did we get here # For most of the year I’d been feeling a bit off it, dizzy spells and being exhausted, I put this down to ME/CFS being a pain as per usual. In June we went to Cyprus for two weeks holiday it was hot but we had such a great time. When I got back I caught COVID (4th times the charm), whenever I get it I’m always very ill with it. 2 weeks after COVID I got a chest infection which was quite bad, I never really recovered afterwards. We’re pretty sure this is where it all went wrong and the bloods clots in my lungs started to form. From there my health has deteriorated to the point where I’ve been backwards and forwards to the doctors. Each time I went I was told the chest infection hadn’t gone and given either an inhaler or more medication. It was also around this time that I noticed my chest was aching, I have acid reflux and well and while it’s been managed for years and years I’d been getting aches and what felt like acid reflux again.

I’m half writing this for the people mentioned at the end and my own records since when I say the past 5 days has been crazy I really mean it. You can read a bit of back story here.

This week I had some pretty crappy news, I had a chest x-ray on Saturday because my lungs feel like I’m breathing razor blades. The nice doctor said that it was most likely down to post/long COVID. It’s kinda a good thing to know because that explains why I’ve been feeling so grim since I last had COVID. The x-ray shows I have scarring and dark spots on my lungs which is what’s causing all the discomfort. I’ve got a blue inhaler in case which helps a bit but for the most part it just sucks.

The aim of this post is to try and explain what it’s like living with ME/CFS. I can’t quite remember where the idea of spoons as a unit of energy came from, I think it might have been from my friend Gem, so I’m blaming/crediting them.