Last year I posted about what my day looks like because of EDS. When I was flicking back through my blog to see how 2015 had been, I came across that post. And it has changed SO SO much in less than a year…
So, here is a (work) day in the life of me and EDS 2016
Midnight till 7.15am I sleep, or attempt to. Sleep is interrupted every couple of hours by the need to go to the toilet and get a drink (yes, I understand the vicious cycle there but I wake up both desperate for a wee and desperate for a drink). I will toss and turn all night. Waking up each time I do as joints scream or poke at me. Lifting the sheets is torture on my fingers. That’s if I’m lucky. I’ll probably read for a couple of minutes before switching the book onto audio mode (I love whispersync!), or watch a documentary on iplayer (yes, I know screens aren’t good… nor is staring at the ceiling). If it’s a bad night, I may dose off about 4am.
7.15 my alarm goes off
7.30 my carer lets herself in and gets me out of bed
7.30-8.15 my carer will give me coffee, my meds, make my lunch, sort out drinks for the day, unload the dishwasher or washing machine, get me changed, put my splints of, brush my hair, wash my face, give me some mouthwash, make my bed, get me into my coat etc, get the electric wheelchair outside for me (no ramp) and then they will lock up and attach my bag to the chair.
8.15 Meet taxi. Maybe. They are frequently late, average about 20 minutes, most has been 45 mins. I have to wait outside regardless of weather.
8.30 Assuming I’ve made it into work on time (I now only work three days a week) I cross my fingers that the automatic door opener is working. If it is, I only have to battle one heavy and inconveniently placed door. Work brings its own challenges in terms of accessibility and people’s attitudes towards me. That’s for another day.
12.00 and 16.00 Regularly scheduled meds. There may be morphine which is taken as needed at other times in the day, my colleagues have to give this to me.
17.00 Taxi home. Although its more like 5.25 before the taxi gets there.
17.30ish Carer arrives and brings the wheelchair back in. Carer cooks, cuts up food, sorts out drinks, gets me changed, takes of my splints, washes my face, leaves me mouthwash, fills dishwasher or washing machine, opens post etc. In terms of eating, I now only use a spoon. Bad days result in eating with my fingers. Even worse days, I struggle to do it with my fingers.
18.30 Carer leaves, locking me in for the night. I might have a little time online on my tablet depending how my hands feel. Then I’m moving into the bedroom leaning on my trolley which also helps me move the meds, drinks, snacks etc that my carers have left me. I might watch something online for a little while or listen to an audiobook.
19.00 Final meds for the day. Then I’m normally falling asleep.
21.00 – midnight Toss and turn and drag myself to the toilet. See midnight to 7.15
Non work days I get up a little later, 8.30 normally, but other than work, the routine doesn’t change too much. We wash my hair once a fortnight and manage to wash me about once a week although it can be less depending on which carers are rota-ed on. I spend a lot of my non work days resting in front of dvds or netflix and try to do something creative depending on how my hands are doing. I am managing more of this than I did in my last post, because the carers are doing a lot of hand related work for me. Non work days frequently include medical appointments, life admin etc. I can’t leave the house without a carer present – I can’t get the wheelchair out and the wheelchair can’t be left outside because it gets cold and the battery stops.