Tips, tricks, and life hacks for living with ME/CFS

I did a talk for my local support group. Here's a video of it. CW: discussion of suicide risk towards the end of the video. There may be other sensitive topics too, but I don't remember what I covered at the moment. I did a talk on tips, tricks, and life hacks for people with …

Advertisement

Why would you willingly risk becoming like me?

I'm so baffled by vaccine reluctance, especially in populations old enough to remember polio. Covid causes long term damage and disability in a devastatingly high proportion of the infected. Severe-acute-respiratory-syndrome-Coronavirus-disease-2019, aka SARS-COV-2, AKA Covid-19 attacks the organs, blood vessels, and nerves. It's not just a respiratory infection, it's a systemic disease. We are seeing data …

The good news is it won’t* kill you. (*without help)

I want to address something that I've said a few times in the past (Here and here, and I touch on it here, for example) with isn't entirely 100% perfectly accurate. That ME/CFS won't kill you. Aside from the increases in suicide risk, there is a very small chance that with assistance/negligence from medical professionals …

Kicking it old school: Payback is a b***h

One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms …

August 8 – International Severe ME day and my ME heroes

I'm fortunate enough that my ME is currently only in the 'Moderate' range, meaning I can stand up on my own most of the time. I do sometimes use a walking aide/wheelchair as a way to manage my energy levels and prevent further deterioration, but I can usually stand and walk without assistance. I have …

Spoon theory vs Energy Bucks

I have read many descriptions and metaphors to describe what it's like to live with an energy sapping chronic illness, but I find that none adequately describes what it’s like for me, living with ME/CFS. I have a metaphor that I think fits me and my ME which I wrote about in my epic post of …

Growing around my grief

Yesterday I buried a friend, Lois. Well, I didn't literally bury her, I left that to other more able bodied people, but I was there when it happened. She died on Monday, both suddenly and not. She had cancer; an aggressive form of pancreatic cancer which was only diagnosed, at stage 4, earlier this year. …

Today was a good day, so why am I crying? AKA Show me the money!

Ok, I'm pretty tired, having reached my step limit today, but it's more than that...it's the millions missing, including myself, and our invisibility in the world of medical research. It all comes back to Florence Nightingale. For a few weeks the mere mention of Nightingale's name has been enough to set me off. Last week …

What it’s like to be me, living with ME/CFS

If you’re interested in what it’s like to live with CFS/ME then this might be a useful read. Fair warning though, it is Loooong. This is part of the appeal submission when my Disability Benefit (SLP) application was declined. The full appeal document was over 10,000 words long. I’ve edited it, added bits that I …