It’s the middle of Saturday and I haven’t left the house or really moved more than to change bedding and put washing away. I haven’t stayed indoors this long during the day for weeks and even though it’s down to my joints swelling up and giving me hell, it’s still been nice.
I don’t really know the spilt between who reads this blog for the chronic illness element, which has been quite lax lately, or who just reads it in general (I’m still amazed at the amount of people that do so mega super thanks xxx).
It’s weird to have an illness that lurks in the background of everyday life because you never know when you might wake up and feel utterly awful or in my case, not be able to walk properly and put clothes on unaided. It’s sort of like living with a game of health roulette but it’s not really fun and you don’t ever win any money.
For the past few months my Ehlers Danlos Syndrome joint pain and general health woes haven’t been bad at all, but on days like today when they all come out to party and have a rave inside my legs and shoulders, I’m reminded that the struggle is real. And also that I definitely need a full time personal assistant or robot that can wash my hair and do my life admin and just carry me around when walking really hurts.
Anyway- top 8 joint pain struggles right now:
1) Hair washing/drying/styling. Birds nest hair is life.
2) vegetable peeling/food chopping/pasta draining
3) Holding on for dear life on public transport and ignoring the cracks that come out of shoulders when you hold the bar above you.
4) Desks. Sitting at them hurts. Standing at them hurts. Laying on them would probably hurt and I’m willing to try it to find out.
5) Undoing a bra. My God.
6) Shopping. Prolonged standing and walking while carrying bags is a recipe for ultimate suffering and why the internet exists.
7) Opening jars. Not good for the peanut butter/marmite faithful.
8) Walking uphill.