Sunday 19 May 2019

#meandmyME Week 3

Monday 13th May // Day 13: M.E. has taught me...

... to appreciate and be grateful for the smaller things in life, like someone bringing me a cup of tea/coffee, or letters from friends, or having a good night's sleep or a friend dropping me a text.

Tuesday 14th May // Day 14: Small wins

Getting dressed and getting out of bed!
Before I got ill this used to be just something I did everyday without second thought; now staying in pj's 24/7 would be amazing so finding the energy to get dressed is a small win that I now feel proud of myself for achieving.

Wednesday 15th May // Day 15: Past, Present Future 

Past... I was well (ish, I just had asthma and a spinal curvature so as a child I was familiar with hospitals and my mental health was a challenge and I spent time in hospital). When I got well enough I went to Uni to study nursing and I was leading an active lifestyle - I was a the gym nearly every day having a workout, swimming, yoga or dance classes and I cycled everywhere.
Present... I am mostly housebound or ('sofa bound' as I term it; some days are spent entire in bed) with constant and episodic symptoms. I also have other illnesses alongside the M.E. I try to focus on the positives as much as possible and see that my health is only a small portion of who I am but that's not always easy. I just try to take each day, each hour as it comes. I go through periods where I feel more resilient and then I go through times where I struggle to cope physically and emotionally.
Future... I hope to one day be well enough to return to University, work, and eventually train as a Child Psychotherapist and live my life 'differently normal' though I accept I will aways be disabled and if I can't return to University I'll come up with a Plan B.

Thursday 16th May // Day 16: Bed

My bed and my bedroom are my haven. It is my space to rest, recharge and relax in. 
My bed can also be my life at times in which I spend all of my day and night in.
I have a mattress elevator which is amazing and it makes just one simple thing (sitting up) a lot easier.
My favourite bedding is brushed cotton as it's soft and warm.
I also have some cuddly friends on my bed.
My favourite pillow is my giant square pillow which Mandy made me a Moomin cover for.

Friday 17th May // Day 17: Brain fog

Brain fog is really difficult. Everything is slow and you struggle to think and you can't process things. If someone throws a ball at you it's going to hit you; you can see where you're looking at them but you don't know that they threw the ball til after it hits you. It's also like being drunk , like really really drunk (without the alcohol) and you have slurred speech and you forget words and get things mixed up.

Saturday 18th May // Day 18: I am thankful for

My Dad who helps me, my carers, my friends/pen pals and the professionals who help or have helped me.
I am also thankful my my good days and the things I can do and the gadgets that gives me some independence and help me with day-to-day life even though it's still a struggle.
I am also thankful for my faith which gives me strength to hold out for the good days and know that God has an amazing plan for me.

Sunday 19th May // Day 19: Worst symptom

All of the symptoms are really difficult.
In terms of symptoms I'd say the worst symptom for me is the brain fog and pain. 
I'd also say that the fatigue really difficult to live with especially PEM fatigue as you can't predict how bad the PEM will be and what symptoms will come with it.
Also, it's not quite a symptom, more a result of the symptoms but I'd say the isolation. Especially when you're largely housebound you don't get out to see people as much and it's usually the same faces you see all the time. Letter writing helps with the isolation but it's not the same as having a real person to chat with, especially someone that's there as you're friend rather than say a carer or a parent.
"Half of disabled people say they are lonely, and one in four feel lonely every day." - Sense