Under pressure – compression garments & POTS

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”

So I watched Unrest

Omar Wasow carries his wife Jennifer Brea in a scene from Unrest.
There are many promotional stills from Unrest, but this gives me the most hope.

If you’ve been involved at all with the ME/CFS community, you will be well aware of the significance of the release ofΒ 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”

Hey fuckface, I can talk (and: on Autism Speaks)

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.*

Aldi store.
The place where dreams are made (usually).

Continue reading “Hey fuckface, I can talk (and: on Autism Speaks)”

It wasn’t supposed to be like this

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.

Romy & Michele from Romy and Michele's High School Reunion
Everyone tells me I should Romy & Michele it, but I’ve actually never seen that movie (and don’t plan to).

Continue reading “It wasn’t supposed to be like this”

Self management and blame with chronic illness

One of the most important coping skills for living with a chronic illness is self-management. When your energy is so limited that you have to ration it for each daily task, self-management provides the tools to do so. It plays an even larger role when your illness has no other treatment available, such as ME/CFS.

Continue reading “Self management and blame with chronic illness”

Unrest film available for preorder on iTunes

Movie poster for film "Unrest".

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 blogΒ earlier this year. Her movie proves to be just as honest, heart breaking and educational as her speech.

Continue reading “Unrest film available for preorder on iTunes”

Beginning my FODMAPs journey

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.

Fermentable, oligosaccharides, disaccharides, monosaccharides and polyols

Continue reading “Beginning my FODMAPs journey”