It’s unusual for me to attempt a second post in one week, but there is a landmark day approaching for the ME/cfs community…via those who are making incredible waves by their ingeniuity & grit..& who are extremely good at foghorns… September 27… when there will be a mass outpouring of shoes. I thought it only right and fair to post about it.
It’s known as #MillionsMissing.
You may or may not have heard of it. A unique way of raising awareness for the people who struggle with the condition…often alone. Basically saying, there are millions of people missing from a whole range of areas of life…let their voices be heard.
It is represented by a pair shoes from each person with ME/cfs…where they are missed & what they miss.
I’m very aware that there are so many people in this complex world who need their voices heard, this is not intended to diminish the importance of anothers need. Hopefully more ingenious & imaginative means will continue to emerge, to be a foghorn for others.
I don’t feel I’ve talked alot about my history pre or with ME/cfs. Well, I hope I haven’t gone on. I’ll be honest, for years I avoided the subject where ever possible (for a time I could barely speak anyway, so that ‘helped’)… it’s bad enough having it, talking about it too..nah!!
I have had to overcome many obstacles, naysayers & disbelievers..it becomes utter tedium. I needed to have some kind of life beyond it. Even looking out of the window is better than talking about it. But…you do expect to be believed! And this has been & still is a problem for many.
One very kind physio said to me, after some time of my trying to look the other way…”you can’t ignore it, it’s not fair on you…keep learning more and for goodness sake talk about it.” So assertiveness within the confines of the condition slowly began.
But I’m still really not led to go into masses of detail today. Instead, I have decided to say a thank you to the many people for being my shoe or shoes…where I couldn’t & can’t be, which in turn I hope will help explain the situation so many unexpectedly find themselves in.
Here’s a list of alot my husband, close family, friends, ex-co’workers & neighbours have done and do for me and our family. They are our village…
- School runs (Primary-Senior)
- School arrivals (it was a fine art)
- College meetings
- University runs
- Airport runs
- Huge amounts of paperwork
- Orthodentic appointments
- Dental appointments
- Hospital appointments
- Doctors appointments
- Parent/teacher meetings
- Cinema trips
- Day trips
- Collected course work
- Still inviting us
- Keeping an eye out
- Surprise parties in their homes
- Theatre trips
- Lifts to here there & everywhere
- Helped me dress
- Cleaning our home
- Bed making
- Christmas cards
- Bringing cooked meals
- Gift buying
- Prom shopping
- Gift shopping
- Vet trips
- Dog walking
- Rescuing when marooned
- Tear drying
- Bringing Communion
I’ve more than likely missed something. But I will be forever grateful for the wonderful people who’ve been there, and are there for us… and just step in. We are blessed to know some amazing, selfless & loving people. Thank you simply doesn’t cover it.
And you maybe wondering..’why the shoes & microphone’.
They represent ~
- Fun nights out ~ with my husband, family & friends.
- Singing ~ with my husband, family, friends & church.
- Walking ~ with my husband, family & friends…and dog…whatever the weather.
Activities, that due to 12 years of ME/cfs, in the form we knew have been denied. Yes, we continually adapt, and always endeavour to find other ways… but we still deeply miss those particular shoes, which were removed with such unexpected haste!… (& my singing voice still resolutely refuses to return!).
If you know someone battling with ME/cfs…let them tell you about their footwear…and maybe offer to photograph, take or send their shoes to a protest
Thank you for reading…
I think this scripture says it all to all these wonderful people. I’m close to tears here…
Matthew 25: 34, 36b, 40 The Message © (The Son of Man will say)…’Enter, you who are blessed by my Father’…’I was sick and you stopped to visit….Whenever you did one of these things to someone overlooked or ignored, that was me (Jesus says) – you did it to me’.
Song suggestion ~
Garments of Praise ~ Robin Mark
*I have recently added a page in the Main Menu, which gives more detail about my personal experience of living with ME/cfs.
It’s title is ‘My story with ME/cfs’.