This is an insight into my daily life which I find very depressing and monotonous.
A typical day for me is I wake up around 10-11am but I lay there until I can get the energy to get out of bed which is 10.45-11am or a little after but I try to get up by 11am as I have to take my first medications at 11.30am.
Sometimes I wake ever so slightly earlier but I try to go back to sleep as I am too tired to get up.
I have 10-11 hours sleep which isn’t even enough for me but is the least I can function on. I could easily sleep all day due to the chronic fatigue plus the extra fatigue I get from the Fentanyl.
I usually try to gather energy and try to make myself get up as there is nothing much worth getting up for.
On a bad day, I’ll have to remain in bed most of the day and a very bad day (which was all of the time before the Fentanyl) I stay there all the time.
I then go clean my teeth and get shower/wash, then apply mediated cream to affected parts of my skin.
I come downstairs and I usually get my hot water bottle to put on my back for pain or in winter to keep warm as well.
I then plonk myself in my chair where I barely move all day. I have a pillow for my back, a cushion for my arm and a blanket.
Before the Fentanyl, I couldn’t even get out of bed due to the severity and would lay there crying and screaming in pain day and night.
I keep my fan close by as I sometimes get hot flushes or feel sick. I have my morphine for breakthrough pain and Metoclopramide for nausea also close by at all times.
I have a laptop and I try to find things to read or just browse the internet all day, as well as update my blog.
At 11.30am I take my medication and put on a Fentanyl pain patch if it is patch day.
Between 12pm-2pm I have a pot of tea to last me a few hours at my chair. I also eat my combo meal (breakfast/lunch) which is just some oats to last me until dinner time.
I return to the internet surfing until around 6pm when I eat dinner. I often return to bed during the day to nap or if I hurt even more than usual, or I sometimes fall asleep in my uncomfortable chair by accident due to my chronic fatigue plus the opioids that make me even more sleepy.
I watch movies until around 9.30pm then I go to bed and watch a tv show episode in bed before going to sleep. I take my last medication at 9.30pm.
It is a very boring, lonely and depressing routine. This is an everyday routine.
I don’t have the energy to do much, can’t walk far or stand long due to severe pain and have no money.
I physically can’t do things like crafts as I don’t have the energy plus I hurt too much. The slightest movement hurts and makes me more tired. I have such a limited amount of things I can do to entertain myself.
I can’t go out and don’t have the money to buy things to entertain me.
This is sadly my daily routine and is not enjoyable, but is all I can do/afford. I only get £300 total a month so I can’t afford to buy things to entertain me or make me more comfortable sadly.
If I was rich I would be having massages once a week, but a comfortable recliner, I’d visit a chiropractor, I’d buy an electric scooter… so many things I would do but sadly this is reality and that is a dream.
Edited: 8th June 2020