Monday 20th May // Day 20: Current view
This is the view from my bed as I'm summoning up the energy to try and get out of bed in the morning. I'm slowly elevating myself upright so I don't have a POTS fainting episode using my electronic mattress elevator (my favourite gadget from my OT) and I have things to hand such as my laptop and iPad, medication, baby wipes and then on my bedside table I have a tumbler of juice and snack bars should I be too unable to get downstairs to the kitchen and a box of other medication e.g. migraine meds, anti sickness meds, inhalers etc. The blinds are still closed hence why there is a pink haze and putting any light on is too much for me.
Tuesday 21st May // Day 21: Assessments (of any kind)
In January I had an updated home Occupational Therapy assessment which led at my house and any difficulties I have within the house and putting inlace any aids or adaptions to help make things easier for me. From that I got a mattress elevator which allows me to sit myself up and lay myself down much more easily. I also got a bath lift which as a lift does it lowers me into the bath and raises me up (though it doesn't magically get me out of the bath).
I've also been struggling and trying and failing to get assessments to help me get a care package so one day I can move out and live on my own.
I also have routine assessments like medication reviews and blood tests etc.
Wednesday 22nd May // Day 22: Help
My Dad helps me out a bit such as if I need an arm to steady myself when walking, preparing and helping me take my medication, washing my hair for me, cooking, helping me up when I've fallen etc.
I also have carers which help me with anything from personal care to helping me with my my medication, to running errands or going to appointments or just going out for tea and cake.
(I can't leave the house alone so being able to leave to house with my carers for a couple of hours a) makes me feel safe and b) it enables me to leave the house and get a change of scenery and gives be back some independence).
My my wrist I also have something called a CareLink which has an impact detector so if I fall it set off an alarm or I can press the button and it will put me through to someone and I can talk to them and then can arrange for help to come round if need be or call my Dad or Mandy to let them know if I've had a fall etc.
Thursday 23rd May // Day 23: When I wake up
This is usually a drawn out process.
My first alarm goes off at 9am (earlier if I have an appointment, but I try to get appoints in the afternoon). I then lay in bed for a while trying to wake myself up. I take my 9.40am meds then my 10am meds. After my 10am meds I aim to get out of bed. With my mattress elevator I slowly sit myself up so my dysautonomia and PoTS can adjust itself and my tachycardia and low blood pressure from going from lying it sitting up doesn't get set bad.
I then get up, shuffle downstairs and get some breakfast. I then have a rest and watch TV or go back to bed
On a bad day I just stay in bed, I may have the cereal bar I keep next to my bed I'm I'm feeling okay, then I will just go back to sleep.
Friday 24th May // Day 24: Coping/Support
Living with M.E. is really difficult and because of the isolation you don't have a wide range of people in your life. You have good and bad days emotionally with your resilience.
My Dad is supportive, I also have my pen pals and my faith.
To help cope I have things that distract me and things that I find soothing.
Saturday 25th May // Big wins
I think my biggest win since becoming ill (even though the M.E. wasn't diagnosed when I first started) was completing my home study Foundation Diploma in Art & Design which will really help me when I'm well enough to go back to University as I now have a balance of art and science based educational qualifications.
Sunday 26th May // Day 26: Describe M.E.
Describing M.E. is really difficult to sum up. Living with M.E. is life living with your life on pause and you're just waiting for your life to get back on track.
You're tired all the time but sleep doesn't make it any bette, but you need to sleep and nap and rest a lot. And when you're tired your brain is all foggy and you can't remember things and it affects your thinking and you can't process things is and everything is slow. And because of the brain fog your brain losses track of things.
But even when you're exhausted you get insomnia at night and if you do manger to sleep well you wake up feeling unrefreshed.
Sometimes even just lifting your head is too much effort. And your muscles really hurt really badly.
Then you get this pressure in your head so you get headaches and migraines a lot.
Sometimes it's like being really really drunk.
Because M.E. is episodic you can't predict how you will be to an extent. Like you know you'll have PEM but you don't know how bad the payback will be.
There's also the hypersensitivity. Light and noise are painful - even the sound of your own voice is too much sometimes; smells can trigger migraines, and one bad days even just gentle touches like my duvet hurts. So sometimes you have to lay in the dark and silence.
Walking is difficult, it's too tiring and painful sometimes and it takes too much energy.
You need to be really careful not to do lots of things. You need to be really careful and do one thing and rest.