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.
My psychologist refers to it as “the moment you realise the world is not a safe place.” I prefer to see it as a realisation that you have no control over your life – that your carefully laid plains mean nothing, anything can happen to anyone at any given time, and there’s nothing you can do about it. For me, this realisation occurred when I first fell ill 7 years ago, and continues to occur again and again as this illness unravels everything I thought I knew about life.
There has been some really exciting research into ME/CFS lately, with a particular focus on auto immunity, discovering biomarkers and measuring biological responses in the body. Let’s hope this is an end to the era of the pointless “psychobabble” study of ME/CFS! Continue reading “ME/CFS research matters”
Warning: contains GIF
Day 17: bright colours to beat a rainy day. @andisatt #viannecardigan, worn with fair trade chicken skirt from local shop, handmade beads from market and op shop boots. . . . #mmm2017 #memademay #memademay2017 #mecfs #me #cfs #cfsme #spoonie #spoonielife #chronicillness #chronicallyfabulous #pots #dysautonomia #butyoudontlooksick #spoonfighter #disability #criplife #crip #cripplepunk #cpunk #invisibleillness #ruraldisability #MEaction #millionsmissing #thisiscfs #disability #disabledandcute #disabledandstylish
Above: an image from Me Made May. I had to cut the month short (documenting at least) due to illness.
I’ve been a bit quiet lately as I’ve been down and out with this virus that’s going around. I know, I know – there’s nothing more tedious than someone complaining about having a cold, especially on their blog! But viruses hit the chronically ill a lot harder than they do able-bodied folks. Continue reading “Do you want some sickness on top of your sickness?”
Warning: contains GIFs
It’s the bugbear of the chronically ill and disabled – that oft-repeated refrain, “why can’t you just think positive?” Not only is it disheartening to hear that your genuine challenges are the result of not thinking enough happy thoughts, this kind of enforced positivity can undermine the real, lived experiences of the disabled community, and be used as a tool to silence protest.
May 12 is International ME/CFS and FM Awareness Day, and throughout the month I am sharing posts which shed a bit more light on these misunderstood illnesses. For more, check out #May12BlogBomb, #MEAwarenessDay and #MillionsMissing on Twitter and Instagram.
One of the most common misconceptions about ME/CFS is the difference between the specific illness, chronic fatigue syndrome (myalgic encephalomyelitis) and other types of fatigue. This simple misunderstanding snowballs into real challenges for ME/CFS sufferers, who have to contend with people’s assumptions that they are not seriously unwell, but just tired. Continue reading ““Chronic fatigue” vs chronic fatigue syndrome”