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
- Phonecalls
- 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
- Library
- Hugs
- Keeping an eye out
- Surprise parties in their homes
- Haircuts
- Advocacy
- Reading
- Theatre trips
- Lifts to here there & everywhere
- Helped me dress
- Cleaning our home
- Bed making
- Shopping
- Christmas cards
- Bringing cooked meals
- Ironing
- Posting
- Gift buying
- Reading
- Correspondence
- Prom shopping
- Gift shopping
- Vet trips
- Dog walking
- Rescuing when marooned
- Generosity
- Listening
- Reassuring
- Encouraging
- Tear drying
- Wisdom
- Prayer
- 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…
#MillionsMissing
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
Hope found in M.E. 
I’ve been trying to search around your blog to know what ME/cfs is (and what the letters stand for) so I can understand this post. But I do understand that you’ve suffered great physical pain and your village has been there for you to fill in and help out in all the duties of living. And that’s so wonderful.
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Ah, that’s a very good point…it stands for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome… although that is an umbrella term. Also known as Chronic Fatigue Immune Deficiency Syndrome in USA (although I think the name is changing). I’ll prepare a slot to post about it a little more. Thanks for raising that point. The ME Association is a good source of information –
http://www.meassociation.org.uk/
I’ve now posted the link on my Books & links page.
And thank you, yes, I/we know some amazing people. We wouldn’t get through without them. Thanks so much for reading.
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I am so sorry for your struggles. I’m glad you explained what ME / CFS stood for. Is there anything they can do for these conditions? It seems so debilitating! It’s so wonderful to have so many people around to help support you and your family.
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Thank you so much for reading & for your very kind comments. I’m glad my explanation of the letters helped.
There is some research going on, which will hopefully grow & lead to the hope of clear diagnosis & eventually some form of treatment. For now folk learn to manage it, but the effectiveness of that depends on severity & yes, it is very debilitating. As with many conditions, the scale of it goes from mild through to chronic. I hope that gives a bit of an idea about ME/cfs.
Thanks once again for reading & for your very kind comments. Much appreciated.
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I took the plunge.’My story with ME/cfs’ is now published and is located in the main menu.
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This took great courage to write, and you did it beautifully. Thanks for sharing your story.
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Thank you so much, that’s very kind of you to say so. Thank you for reading it.
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God’s grace, dear sis! You have a winning spirit and that will trump any condition. May you continue to see God’s goodness in innumerable ways. Much love to you and yours in Jesus’ name.
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Thank you so much for your beautiful message Edith. Really touched my heart. Bless you sis in Christ.
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It wa lovely to read about the missing shoes – what a brilliant idea. I have only just found my voice and started to talk about this disease recently having been a sufferer for 27 years. Read about my current journey at janetkitchell@wordpress.com and please follow me – I will follow you too. Let us join together without being in a properly organised support group (that i personally hate) and make people see just what effect me has on sufferers and their family’s!
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Thanks so much Janet, for popping by & reading. I agree, the #millionsmissing campaign is excellent & is certainly helping to raise far more awareness & gradual understanding. Although, as we all know, there’s a way to go.
It’s taken me years to be able to discuss the condition in this way too. Due to cognitive issues & also not wanting to. But I haven’t been a sufferer for as many years as you have.
I’m finding writing very helpful. Although can only do small amounts as crash alot. I do interact on support groups, including faith groups…and have found kindness & support there. But I do tend to err more towards faith & craft/creativity. As, I agree, there’s a limit to how much you wish to focus on it, sometimes it’s just too overwhelming. Unless there’s a big awareness event going on, then I get a bit more involved.
I hope you’ll pop by again & find encouragement here. That’s my aim. To talk about it & in the main try & find the hope in all of it.
God bless. Penny
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Reblogged this on Hope found in M.E. and commented:
Hi. I’m reblogging a post from last year, relating to the #millionsmissing campaign. Why? Today is International M.E. Awareness Day, and this part if my contribution to help raise awareness. I also have blue fairy lights ready…and will be wearing blue, well once changed from my pj’s! Thanks for reading and please share. Thank you do much. #millionsmissing
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