Sunday 12 May 2019

#meandmyME Week 2

Monday 6th May // Day 6: Myth busting

  • M.E. is much more than just feeling tired! There are many different symptoms alongside the chronic fatigue and each person is affected differently.
  • You don't have to "look" ill to have a chronic illness.
  • Exercise and increasing activity levels cures/improves M.E. symptoms - wrong, exercise and increasing activity levels can cause PEM which exacerbates symptoms.
  • M.E. is caused by stress - there are many different reasons why a person may develop M.E.
  • It is a psychosomatic illness and can cured by CBT
  • Sleeping makes the fatigue and tiredness better

Tuesday 7th May // Day 7: Joy

There are several things that bring me joy: writing and receiving mail, my faith, getting lost in an art or craft project, or sitting in the sunroom in my rocking chair with a cup of coffee listening to the birds.
Since becoming disabled I've found more joy and appreciation in the small things.

Wednesday 8th May // Day 8: Today I feel...

Utterly exhausted beyond words.

Thursday 9th May // Day 9: Advice (received or to give)

It's okay to rest, learn to pace yourself and engage in self-care. Your illness is not your fault; nor does it define you. There is no cure but you can learn to live with it and mange it; somedays M.E. will will win; other days you will but you need to remember those days and celebrate every tiny victory, even if it is just getting out of bed, or getting dressed.

Friday 10th May // Day 10: Something inspiring

I've come across a YouTuber called Jessica Kellgren-Fozard (YouTube channel link can be found here) and her video's have been really helpful and inspiring in terms of helping me accept and embrace life with a disability/chronic illness as well as knowing that there's more to us than just our disabilities and that I can still do the things I want to do in life; I'll just do them a little bit differently but different is okay; it's what makes us unique and special. 
I'd really recommend checking out her videos, even if you don't have a chronic illness/disability; you might learn some things, like about how the straw ban hurts people! Something that I could relate to as I find straws a huge help and when you're in a cafe and can't life the cup and the paper straw is falling apart it's just so annoying! (Café's should be allowed to have plastic straws in reserve for people who need them!)
Jessica also does videos on non health related stuff which is great as it just shows that there's more to us that our health problems.

Saturday 11th May // Day 11: Pacing

Pacing is is big and helpful tool to living with M.E. it's about learning to juggle your energy levels more effectively. Easy tasks are green, orange are okay tasks and red are challenging tasks, so when you've done a red task it indicates that you may ned too put i a rest break afterwards or follow an orange task with a green task. By pacing it can help to reduce symptoms like pain and fatigue. I got a fab pacing items from Stickman Communications © which helps me to visualise pacing and plan my day out effectively. 

Pacing generally for me involves a an activity followed by a rest. So I'll get dressed then rest, or do half the dishwasher rest and then do the other half. Some things require a longer rests like after having a shower which even with the help of my carer is exhausting. 

It varies from day-to-day. Some days I can do 20 minutes of an activity followed by a 10 minutes rest or switch this around and do 10 minutes of an activity followed but a 20 minute rest.

Then there are days where all I can do is lay in the darkness and silence and any sensory stimulation is too much to bare.

Sunday 12th May // Day 12: Something blue