Friday 31 May 2019

#meandmyME Week 5

Monday 27th May // Day 27: Rest

Most of my days are spend resting in some way or another and despite resting I'm still tired. I refer to this as 'sofa bound' - I probably spend about 95% of my day on the sofa or my bed, though I try to leave my bed for longer rests, napping and sleeping (but sometimes I need to spend all day on my bed).
Rest is really important. It helps me get through the day and to be able to function (just about) the next day. 
After every task I rest. Pacing plays a huge part in this.
If I have something big the next day or two, such as needing to go out with my carers to run errands, appointments etc I have to rest otherwise I'd crash and the PEM will be even worse.
Basically resting is really important when you have M.E. or any illness that involves chronic fatigue.

Tuesday 28th May // Day 28: inVISIBLY disABILED

The vast majority of the time I am invisibly disabled when it comes to my M.E. You may see me sitting or laid down but you don't see the pain or me fighting to stay awake or the chronic migraines and all the other symptoms that I'm dealing with at that moment in time. 
I wear tinted lenses (which people often mistake for me wearing sunglasses), due to photosensitivity/photophobia and migraines, but you don't see why I'm wearing them.
When I'm on my laptop blogging you don't see all the concentration and brain fog and that when you read a post you don't see that it's taken me days or a week to write. (I started this #meandmyME last year and I've been adding to it bit-by-bit).
If I'm out and about you'll see me with my crutch holding onto someone's arm, or more often now in my wheelchair; then my invisibleness becomes more visible, but that's only the tip of the iceberg. Even in my wheelchair you can't see all the invisible M.E. symptoms (or the other illnesses I have). 
It can be had having inVISIBLY disABLED as you feel like you have to constantly make the invisibleness visible such as when I first got ill trying to get a seat in the priory seating or assistance at the train station, (I no no longer use public transport), but I've now learnt that I don't have to do that. If people don't understand or can't "see" my M.E. (or other illnesses) then that's their problem and not mine; I don't have to justify myself to anyone and neither should anyone else with an invisible disability. 

Wednesday 29th May // Day 29: M.E. hasn't stopped me

M.E. hasn't taken away my hope of going back to University, and one day becoming a Child Psychotherapist, it's just that my life is on hold whilst I get well enough.
It hasn't stopped me from studying, I've done an online art foundation course and I've been doing home distance learning courses.
I've had to adjust such as I can't do as much active volunteer or campaign work but I can do a little online or over the phone.
Even though I can't get out an meet people in person I still "meet" people and have friendships through letters.

Thursday 30th May // Day 30: Quotes/Words I live by

'Carpe Diem' - seize the day, which for me is making the most of the day and achieving as much as possible, whether it be read a module of my distance learning work, or just enjoying my carer braiding my hair.

The Harry Potter books are filled with inspirational quotes; a lot of which come from Albus Dumbledore.
"Happiness can be found in the darkest of times, only if one remembers to turn on the light"
There's also an art film called 'Impossible Shoes' and I love all of the lines in that, but there's one quote from that that I like especailly... 
"There are things that are possible
Things that are impossible
But otherwise, 
I think that within my restrictions, 
Nothing is impossible
Imagination is another name for absolute power"

Friday 31st May // Day 31: If I could tell you one thing about M.E....

That we're all a piece of cake and only on portion of that cake is our disability/chronic illness (M.E. in this case) but there's so much more to use than our disability/illness and it's about finding yourself among that even when you feel like you're M.E. has taken over you.