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.
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.
Warning: contains GIFs.
Do you have a chronic illness? Have you heard the same tired comments 50 times already this year? (No, I’m not contagious, Jan.) Instead of having to think up answers to the same old questions time and time again, I’ve provided a handy guide for those phrases that crop up time and time again.
I wish I could rest.
Real, deep, fulfilling rest. Laying my head down on a soft pillow and closing my eyes, without feeling the anvil resting on my chest. Sitting in the sun and listening to the birds in the trees, without feeling the heat of the sun’s rays set fire to my skin, my body scream from the exertion of my pose, and my mind in agony for being too long away from home. To just be – without being ill.