Sunday 31 May 2020

#MEandMe: Week 4 (and a few days)

Saturday 23rd: Today I feel...

I spoke on the local BBC radio (recorded yesterday) about M.E and I've recently done some work with Action for M.E

Sunday 24th: Happiness

💕 Cuddles with Flop
🖌 Being creative
✉️ Receiving a letter from a friend
🌺 Fresh flowers
☕️ A nice cup of tea/coffee
☀️ Sitting in the sunshine
💆🏻 Having my hair braided
💅🏻 Doing my makeup and nails
👭 Sending time with friends and family
🌈 Helping and supporting others

Monday 25th: Friendship

One of the things that I've learnt since becoming ill is that over time you learn who your true friends are. Over time I've had friends that have left me, friends who have stuck by me and made new friends too.
One of the things my Dad once told me is that the older you get the fewer the friends you have but the better those friends are and that's so true.
The friends I now have though only a small number I know I can count on them to be there for me like I am there for them. Some friends also have chronic illnesses and we can talk about how it sucks to be ill and what comes from being ill but equally we can talk about non-health things too and that balance really matters.

Tuesday 26th: Quotes that help me

"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." - Impossible Shoes

"Carpe Diem"

"Just keep swimming, and if you can't swim just float" - Ruth Spurr

Wednesday 27th: Something positive

The support that I get from my friends and pen pals. I love hearing from them either on my phone such as through a text or a letter in the mail. I might not have many friends but these are the people I can rely upon and who are my true friends who haven't given up on me just because of my health. Those friends I can talk to about anything, the good and the bad. Some of those friends have health problems themselves and I can talk to them about that as they have a better understanding, often more than healthcare professionals. Equally I can talk to my friends about non-health things as even though or health at times dominate our lives we are still more than a list of illnesses and it helps to talk to my friends about non-health things as it reminds me of all the other parts of me. 

So to my friends out there who are reading this, thank you.

Thursday 28th: Words for someone newly diagnosed

  • Getting a diagnosis may feel like a weight has been lifted as you now finally know why you feel the way you do, but equally it may be difficult to know that there is no cure.
  • It may take some time to get your head around everything and that's okay.
  • You may lose some friends; you may make some new friends but you will find out who your true friends are.
  • M.E is no an easy illness to have and at time you may feel like you are not being listened to, but I believe you.
  • Listen to your body and give it time to heal. You know yourself best.
  • I would recommend checking out M.E charities like Action for M.E and the M.E Association for help, advice, information and support.
  • You will have bad days and equally you will have bad days; then there will be the days where you don't feel like you can carry on anymore. And that's okay. It's okay to not be okay. Most importantly of all is to hold onto hope.

Friday 29th: Most difficult aspect of having M.E

There are many difficult aspects of living with M.E; but I would say that the most difficult aspect of having M.E is the invisibility.
My symptoms and how my body physically feels cannot be seen - the brain fog, pain, exhaustion etc. The impact it has on me emotionally and socially. How I can go long periods of time seeing very few people and feel so isolated from the outside world. How people judge me because they can't see my disability.
M.E is so invisible to others, but to me it's not because I live with this body 24/7/365 and non of it is invisible. I would just love someone to spend just a day with M.E.

Saturday 30th: Most positive aspect of having M.E

Living with M.E is by no way a positive experience in all honestly it sucks in so many different ways from waking up in the morning more tired than you went to bed right through to being in so much pain at bedtime that you can't get comfortable to sleep. M.E has destroyed my life in so many ways and turned my life upside-down and ruined so many dreams and plans. Yet it's also brought positivity.
I've learnt a lot since becoming ill such as the people in my life that really matter and that I can handle much more than I thought I could and illness has brought me closer to my faith and myself.

Sunday 31st: Dreams and ambitions

My dreams and ambitions used to focussed around my career and that still the case but I've learnt more to live within the present and so my dreams and ambitions at present are more about trying to stay as well as possible and work on my rehabilitation so I can one day travel or return to education.