A Day with Ehlers-Danlos Syndrome Part 1

I didn’t even hear my husband’s alarm go off this morning but I’ve woken up now my electronic pill box has sounded at 7.00. Groggily, I tip the pills into my hand and take them. The little white one is to help my body process whatever I decide to eat for breakfast and the orange one is to raise my blood pressure enough so that I can get up without falling over. I go back to sleep.
It’s 7.50 now and my alarm has just gone off. The meds have worked so I get up slowly, sitting on the edge of the bed for a few minutes until the room stops spinning. I walk wobbily to the bathroom to use the loo and brush my teeth.
At 8.04 there’s a knock at the door – my carer’s arrived. She helps me into the shower and then opens the curtains and puts away clean laundry until I’m ready to get out. I call for her help and she supports me as I rise from my shower seat and back to the bedroom. I’m able to dry and dress myself independently today which is great.
It’s 8.35 so go to collect my daughter from my parents’ house next door where they’ve been getting her ready for school. I can manage the walk to and from school today but I’m still very sore and tired by the time I get home. I’m feeling too nauseous for breakfast so I just sip water before setting off for the facial I’ve been looking forward to, thanks to a voucher I received as a gift! The facial is lovely, but it’s hard to enjoy it as by now my feet are burning and I’m starving from missing breakfast! I come out of the spa and buy a sausage roll before driving home.
Once home, I settle down to work for a couple of hours. My carer arrives at lunchtime but I’m not hungry (due to the sausage roll!) She hangs out the washing and washes the dishes for me.
Next it’s into town to do some shopping. I park at the supermarket first and then drive to the centre of town. Having completed most of my shopping I have to leave visiting the chemist as I’m too tired to walk there and I worry I might not make it to my physio appointment if I attempt it.
The physio puts me back together – my pelvis, rib cage and jaw are all out of alignment and my muscles are stiff and painful. I feel much better after the treatment and the physio comments on my improved colour!
I head home and have half an hour to work before I go to collect my daughter from school. I’m tired and my feet are still burning but I’m 80% confident I can manage the walk there and back nevertheless so I set off. Arriving in the playground I have to sit down as I’m really beginning to flag. I chat with a friend until the children come out.
It’s a Wednesday, which is when my daughter stays at my parents’ place overnight. She wants to go there straight away to play so I drop her off and say goodbye.
At home, I feel I should take the opportunity for a nap but decide I have too much work to do so I get on with that. At 6.00 my carer arrives and helps me into my pyjamas as well as closing all the curtains and bringing in the washing.
At 08.00, my husband returns from work and stir fries loads of veggies and I tuck in hungrily using my foam-handled Nelson knife (using a normal knife causes my wrist to partially dislocate and or sprain).
I start to feel spaced out and a bit vague so my husband helps me into bed. I lie there for a bit feeling ‘unreal’ and compulsively repeating the same meaningless phrase (my brain is lacking in blood flow) until gradually my circulation settles and I fall asleep.
This was a good day.
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