A hopeful insight into life with ME, dx: 04 alongside #BPD SH, Autism, anxiety & depression. Fighting to stay positive & post about the light in the dark x
If today is spent just waiting for it to pass because you feel so unwell, ask yourself before you go to bed:
“What have I done today?”
And answer proudly:
“I survived and I lived to try again tomorrow”
“Nothing” is never a viable answer when you fight this hard ❤️ #pwME
This year during MEAW, we are focusing on 3 campaigns.
The Lost Years - Stories of those who have ME who have lost years of their life
Symptoms of ME - spread awareness of symptoms of ME
GoBlue4ME - Dress up & fundraise
Our toolkit: https://t.co/0XctI7vvPe
#meawarenesshour
@MEAssociation Mine works better for my autism than it does with ME. Though I have a solid and deeper nights sleep when under it due to it being very soothing and comfortable, it often exacerbates my restlessness when I’m particularly exhausted. X
@karenphysiocouk The 3(!) individuals’ (that run a huge hospital’s MECFS team) levels of care go above and beyond. But they are just too limited in what they can offer.
The REAL M.E.
“This is during a flare when I was hospitalised with severe chest pain, muscle contractions, spams, exhaustion and difficulty breathing, most likely in response to a wedding I attended just two days before.”
https://t.co/LUHPkiDl1S
#MEAW2019#TheRealME#GoBlue4ME
“This photo was taken when I was still awake after 34 hours due to pain and muscle twitching/ spasms”.
Help us continue raising awareness and facilitating change by sharing these posts and donating to our #GoBlue4ME campaign: https://t.co/LUHPkiDl1S.
#MEAW2019#TheRealME
1st social this year. Pushed it to see @russell_kane at M’bro town hall last night. Had to take the chair&listen through earplugs, but the face pain/spasms starting already, from laughing so hard are worth it, he was just brilliant!
#staypositive#pwME#russellkaneyoufuckedmyface
@rickygervais
Thank you. 😔 I have Afterlife on pause, straight after the “Thats it. The end” bench scene. Thank you, for that little bit more strength to fight this suicidality right now. It could make all the difference, and I needed you to know I’m grateful.x
@SleepyJen@John_CFS Exactly, it’s cumulative and the ME doesn’t forgive even the tiniest bit. PEM stacks, and illness worsens until we’re bedbound and forced to rest, in which case we may have triggered a relapse, and despite PEM payback, we won’t return to the state before we pushed it.
#BPD needs clarity. Even if it seems harsh. Reassurance, say, from a loved one, that the relationship is good, then clarity on what you need or want, prevents a million ‘what ifs?’ &painful #anxiety that can leave us emotionally paralysed until it does become clear #mentalillness
The questions to ask #pwME is not "what can you do?", but
1. how long do you need to rest before planned activity?
2. how long does it take to stabilise your symptoms after any activity?
3. with rest, can you get all your symptoms back to their pre activity level?
#MECFS