My dear friend Judy posted the content below on her Facebook and Instagram feeds, I re-publish it here with her permission in a more platform-agnostic form.
Today 12 May is #meaction and #millionsmissing day
Technically I'm missing since 2019 when I had to leave beloved Hong Kong and stop working for a year. I got better slowly from 3/21 and from 9/20-5/21 due to the pandemic slowing things down, but foremost stopping all sports and dancing, but it didn't last very long. (It's been a very happy time though despite many many limitations). Covid immunisation and spinal tap(s) made me very severe over 6 weeks.
In hell since and declining, as most of you know.
I would wish for better awareness in society, more recognition and research funding, but also social security of those suffering from one of the most cruel (but underrecognised and -funded) illnesses out there, with an extremely low quality of life and no dedicated treatments.
A few facts about my situation at the moment:
- Since about a year I haven't left my bed apart from two MRI expeditions (and this is getting harder and harder to do)
- It's hard to have my hair washed passively and I haven't been able to do so for the last month.
- I only talk to my carers for a minute when they are in my room for basic necessities. This is because my nervous system is so sensitive (plus hyperacusis = sounds like knives) that people in my room take a lot of energy, and because I pay a huge price for talking. While I was doing voice messages with a few friends over the last months I've had to stop doing this now completely since the last crash.
- I have 144 symptoms that can chaotically come over me each day
- When I crash it feels like dying with extreme neuro lead in the body and hour long dissociation attacks and brain inflammation, a pure torture chamber
- My brain gets also inflamed from eating, making all symptoms worse
- Sometimes in a crash I can't eat anymore because the neuro effects on my brain are so strong
- I can't see doctors or talk to them on the phone without week long impact (luckily my loved ones do this)
- Due to extreme medication sensitivity (MCAD) that often comes together with ME/CFS I have paradoxical and extreme reactions to many medications such as pain killers or antidepressants, which can make me worse.
- My brain and nervous system feel never normal
- I can't watch videos because the symptom worsening is too much and it's too activating, same for music, but I make short exeptions for important things
- I'm rarely "tired", but more strangulated by my autonomic nervous system
- Due to crashing from basic things like eating, talking, reading, distraction, washing etc, it is very hard to improve on the very severe level, because in order to improve you would have to avoid crashing
- While some people with ME make some improvements with treatment, for others this doesn't work at all and/or they further decline
- I don't know in advance when my neurological attacks will strike
- I can only survive and exist because my parents, my wonderful carers, create a total secure environment free of sound or communication and because my loved ones take over every organisational correspondence for me
While a spinal leak and inflammation as well as pancreas illness complicate my situation, I am also living proof for how bad this illness can become in an extremely short time, as it essentially hinders you from getting treatment and continues to take, take, take.
Time to give back to people with ME/CFS.
Donation opportunities:
#myalgicencephalomyelitis #mecfs #permanentlockdown #chronicillness #verysevereme
