As my POTS progresses, I’ve been trialling various interventions to reduce the effect it has on my quality of life, and sharing my findings with you along the way. You can read about my attempts to increase fluid and salt in my electrolyte drink mega-review. This time I’m looking at compression stockings, one of the most commonly recommended lifestyle interventions for dysautonomia. Continue reading “Under pressure – compression garments & POTS”
If you’ve been involved at all with the ME/CFS community, you will be well aware of the significance of the release of Unrest, the independent documentary by debut filmmaker Jennifer Brea about the illness. If not, it’s hard to overstate the important of this film for people with ME/CFS. Ours is a story that is not told in the mainstream media, or one that is so poorly represented that it usually makes a mockery of our lives. Continue reading “So I watched Unrest”
The other week, I took a short trip to Aldi to nab some bargain merino tops (man, I love Aldi). As dad pushed me in my wheelchair to the cash register, I dumped my purchases on the counter, got out my wallet ready to pay, and smiled and made eye contact with the cashier. He promptly looked away from me to dad and asked, “how are you today?” The way he reacted, dad could have been pushing a trolley full of discount TVs instead of an actual person.*
Warning: contains GIFs
It’s my 10 year high school reunion this weekend, which is a shitful time for anyone, let alone someone with a chronic illness. Just the thought of it acts as a reminder that my life is nowhere near where I thought it would be, or where I want it to be now.
Unrest, the pivotal documentary made from bed by ME/CFS sufferer Jen Brea, is now available for preorder on iTunes. You may remember Jen’s TED talk,“What happens when you have a disease doctors can’t diagnose”, which I summarised on the blog earlier this year. Her movie proves to be just as honest, heart breaking and educational as her speech.
Content warning: contains discussion of dietary restrictions
You know when you’ve been putting something off for so long that you just can’t ignore it any longer? That was me and FODMAPs. There were so many reasons I couldn’t do it: it’s complicated, it’s expensive, I don’t have the brainpower, I can’t cook (!). A few weeks ago, I finally reached the tipping point where my desire to not be in constant, crippling abdominal pain overwhelmed all these reasons, and I gave the low-FODMAP diet a go.
Usually my POTS* is content to take the back stage and let ME/CFS run the show, but recently it has been asserting itself in a rather forceful manner. Sitting on raised chairs, showering and just existing seems to send my blood rushing from my head to my feet, leaving me spending a lot of time on the floor or against my dresser with my legs up to get that pesky blood back where it belongs.