Severe M.E. Day - 8th of August 2018
A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.
Severe ME Understanding & Remembrance Day : This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.
A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
This Years Focus
As always, we hold Severe ME Day on 8th August and keep it as a day of, not only awareness of the devastation caused by severe ME, but also as a way to quietly reflect and remember those who have already paid the ultimate price to this illness.
This year we cannot help but think of loss in different forms and our pieces feature the loss of ones future plans including career, especially hard-hitting in that we see the hopes and dreams of youth cruelly taken away by severe ME.. We feel this indeed must surely show the extreme cruelty with which severe ME strikes and the devastation that follows.
This is Amanda’s story in pictures with a few descriptive words.
I am a singer,
I am a dancer!
I was born to be creative and free!
Now I lie
in my hospital bed
M.E. has robbed me of me!
Member, Megan, posted the following with a great deal of effort and typing help on social media for ME Awareness Day in May . We are so pleased Megan shared it with us too…
What am I missing because I have M.E.?
Wow… having had this disease for over two decades and been bed bound for almost thirteen years this felt like such a vast question to get my poorly brain around…
I guess the short answer would be that I’m missing a million things as my life has shrunk right down to just
A room,
A bed,
An electric wheelchair (to access the toilet),
Very few people (just those involved in my care),
Very few activities (predominantly the basic functions with assistance),
Lots and lots of pain and problems…
But I took a few weeks for my very dysfunctional brain to ponder the question further…
I’m missing the life I had….
I’m missing the life I was meant to have….
This anticipated life involved
A career – definitely
Marriage – maybe
Children – hopefully
Just a normal life – ‘surely’?
It did not involve living in bed for over a decade in constant extreme physical discomfort from horrific bizarre symptoms and on top of this having to fight continual battles to get my needs met.
Of course I’m missing my family. I’ve been too unwell to see them for almost two years now and visits were only possible sporadically in previous years. It’s heartbreaking, life is too short for this, everyone is getting older and time is running out.
Of course I’m missing my friends. I have been too unwell for social visits for approximately for twelve years.
I’ve totally lost track of the number of weddings, family gatherings and other special occasions I must have missed over the years.
Of course I’m missing the outside world generally, as well as places which are very special to me.
It was ’05 when I last walked to my local beach in these flip flops. It’s only 800 metres away but it might as well be on Mars in terms of it’s accessibility to me. It was also around this time that I last wore shoes.
Of course I’m missing so so many once cherished activities which I’ve been too unwell to enjoy since ’05 or longer.
Just sitting in the garden reading a book…
Watching TV (especially sport)…
Music, dancing…
Shopping trips…
Having long chats and gossips…
Swimming in the sea, yoga…
The satisfaction of a days work…
Physical affection (even hugs are very difficult now, let alone a bit of rumpy pumpy!)…
I could of course go on, and I’m sure there would’ve been so many other people, pleasures and pursuits that I was yet to discover. Millions of lost opportunities and wasted potential.
Being house bound I do not get that lovely coming home feeling…
Being bed bound I do not get that lovely getting into bed at the end of the day feeling…
But please see that I’m also missing so many mundane activities that I’m too ill to do, that are just part of most people daily routines or basic functioning,
Sitting for more than a few minutes (orthostatic intolerance),
Standing,
Walking,
Making a cuppa,
Reading my own post,
Dressing myself,
Brushing my hair,
Generally looking after myself,
I’m missing my physical and cognitive independence, it’s so frustrating being so reliant on others.
But as my sign indicates when I boil it right down what I am really missing is NOT feeling extremely ill constantly.
I can bear it. I am extremely resilient if I say so myself, and I’ve learnt tools to cope, but I would give anything not to have to bear it.
“You look cosy” well meaning people have remarked upon entering my room and seeing me ‘tucked up in bed’. I’ve just smiled back politely but thought to myself, ‘oh my, if only you could feel what my body feels like you would know that I’m extremely far from feeling cosy’. Despite the soft pillows, duvets etc, ‘cosiness’ is a state impossible for me to achieve, it’s more like ‘****ed up in bed’. It’s time like these that I am so struck by the invisibility of the illness.
However this intense and complex physical suffering has just become my ‘new normal’. Therefore I generally tend not to comment on it or attempt to explain it to people unless I have to. A lot of it is also very challenging cognitively for me to describe anyway. It’s just ever present like a million torturing sensations within me, from head to toe, nerves, muscles, joints and organs – no part of me is left untouched by pain, discomfort or dysfunction. A quick tour would find a very painful, leaden, exhausted body, weak and immobile – twitching and spasming occurring throughout in severely fatigued muscles. Even toes, fingers and tongue throb and twitch. A very forcefully bouncing brain (an extreme neuro-disruption) – the world moves with it, shrill screeching tinnitus, whole body jolting, faintness, dizziness, griping tummy pains and nausea, eyes are injured by light and my brain feels bruised by the slightest sound, so tender to touch, an empty void like brain, and incoming words can provoke lightening like white flashes, excruciating head, eye and face pain…. everywhere pain. All of which worsens for stimuli, or thinking, moving, or sitting (orthostatic intolerance). A vice like tightness everywhere. This is just a snapshot, I could go on there is so much more, but I do not feel I can convey the cumulative effect. Perhaps its like being on a very painful rollercoaster with fireworks exploding within me as there is such violent movement and noise involved in these symptoms. So much of it is odd and indescribable, and I’ve given up explaining lately. The fact is it all combines to imprison me in bed, inactive, immobile, supine.
It was so strange trying to list the things I’m missing because I genuinely rarely dwell on what I have lost. Why?
Partly because I know it’s pointless
Partly because my neuro-cognitive symptoms do not allow me to think too deeply
But mainly because I am simply too busy surviving the illness, the unrelenting symptoms and the multitude of consequential problems day by day.
There are occasional mornings however, when immediately upon waking I am overcome for a few seconds by a strong indescribable emotional surge. It compels me to exclaim out loud something like ‘I can’t believe it’ – it’s so odd like the realisation of all I have lost and the years that have passed suddenly hits me – it disappears as quickly as it came and I get on with surviving another day.
I’ve always been a life-lover and despite all the suffering and loss, I still am. When your life has been stripped right back to almost nothing perhaps you appreciate life itself even more.
My life may seem ‘ruined’ but like many fellow sufferers/campaigners my spirit is very strong.
As M.E. sufferers deserve so much better, I’ve not even touched on the disbelief, misdiagnosis, and cruel mistreatment bordering on abuse that I and so many others have experienced. I have also suffered untold damage by being prescribed medication far too strong for my ultra sensitive central nervous system. We are missing knowledge and understanding from the medical profession as well as critical funding for research. Please read my next post if you want to read more about what the #MILLIONSMISSING movement is fighting for.
Love and empathy to my fellow sufferers on M.E. Awareness Day 2018.
Thank you to you all for reading this it was a huge effort for me with inevitable worsening of symptoms, so it means a huge amount.
HOW CAN YOU GET INVOLVED
Member, Megan, posted the following with a great deal of effort and typing help on social media for ME Awareness Day in May . We are so pleased Megan shared it with us too…
What am I missing because I have M.E.?
Wow… having had this disease for over two decades and been bed bound for almost thirteen years this felt like such a vast question to get my poorly brain around…
I guess the short answer would be that I’m missing a million things as my life has shrunk right down to just
A room,
A bed,
An electric wheelchair (to access the toilet),
Very few people (just those involved in my care),
Very few activities (predominantly the basic functions with assistance),
Lots and lots of pain and problems…
But I took a few weeks for my very dysfunctional brain to ponder the question further…
I’m missing the life I had….
I’m missing the life I was meant to have….
This anticipated life involved
A career – definitely
Marriage – maybe
Children – hopefully
Just a normal life – ‘surely’?
It did not involve living in bed for over a decade in constant extreme physical discomfort from horrific bizarre symptoms and on top of this having to fight continual battles to get my needs met.
Of course I’m missing my family. I’ve been too unwell to see them for almost two years now and visits were only possible sporadically in previous years. It’s heartbreaking, life is too short for this, everyone is getting older and time is running out.
Of course I’m missing my friends. I have been too unwell for social visits for approximately for twelve years.
I’ve totally lost track of the number of weddings, family gatherings and other special occasions I must have missed over the years.
Of course I’m missing the outside world generally, as well as places which are very special to me.
It was ’05 when I last walked to my local beach in these flip flops. It’s only 800 metres away but it might as well be on Mars in terms of it’s accessibility to me. It was also around this time that I last wore shoes.
Of course I’m missing so so many once cherished activities which I’ve been too unwell to enjoy since ’05 or longer.
Just sitting in the garden reading a book…
Watching TV (especially sport)…
Music, dancing…
Shopping trips…
Having long chats and gossips…
Swimming in the sea, yoga…
The satisfaction of a days work…
Physical affection (even hugs are very difficult now, let alone a bit of rumpy pumpy!)…
I could of course go on, and I’m sure there would’ve been so many other people, pleasures and pursuits that I was yet to discover. Millions of lost opportunities and wasted potential.
Being house bound I do not get that lovely coming home feeling…
Being bed bound I do not get that lovely getting into bed at the end of the day feeling…
But please see that I’m also missing so many mundane activities that I’m too ill to do, that are just part of most people daily routines or basic functioning,
Sitting for more than a few minutes (orthostatic intolerance),
Standing,
Walking,
Making a cuppa,
Reading my own post,
Dressing myself,
Brushing my hair,
Generally looking after myself,
I’m missing my physical and cognitive independence, it’s so frustrating being so reliant on others.
But as my sign indicates when I boil it right down what I am really missing is NOT feeling extremely ill constantly.
I can bear it. I am extremely resilient if I say so myself, and I’ve learnt tools to cope, but I would give anything not to have to bear it.
“You look cosy” well meaning people have remarked upon entering my room and seeing me ‘tucked up in bed’. I’ve just smiled back politely but thought to myself, ‘oh my, if only you could feel what my body feels like you would know that I’m extremely far from feeling cosy’. Despite the soft pillows, duvets etc, ‘cosiness’ is a state impossible for me to achieve, it’s more like ‘****ed up in bed’. It’s time like these that I am so struck by the invisibility of the illness.
However this intense and complex physical suffering has just become my ‘new normal’. Therefore I generally tend not to comment on it or attempt to explain it to people unless I have to. A lot of it is also very challenging cognitively for me to describe anyway. It’s just ever present like a million torturing sensations within me, from head to toe, nerves, muscles, joints and organs – no part of me is left untouched by pain, discomfort or dysfunction. A quick tour would find a very painful, leaden, exhausted body, weak and immobile – twitching and spasming occurring throughout in severely fatigued muscles. Even toes, fingers and tongue throb and twitch. A very forcefully bouncing brain (an extreme neuro-disruption) – the world moves with it, shrill screeching tinnitus, whole body jolting, faintness, dizziness, griping tummy pains and nausea, eyes are injured by light and my brain feels bruised by the slightest sound, so tender to touch, an empty void like brain, and incoming words can provoke lightening like white flashes, excruciating head, eye and face pain…. everywhere pain. All of which worsens for stimuli, or thinking, moving, or sitting (orthostatic intolerance). A vice like tightness everywhere. This is just a snapshot, I could go on there is so much more, but I do not feel I can convey the cumulative effect. Perhaps its like being on a very painful rollercoaster with fireworks exploding within me as there is such violent movement and noise involved in these symptoms. So much of it is odd and indescribable, and I’ve given up explaining lately. The fact is it all combines to imprison me in bed, inactive, immobile, supine.
It was so strange trying to list the things I’m missing because I genuinely rarely dwell on what I have lost. Why?
Partly because I know it’s pointless
Partly because my neuro-cognitive symptoms do not allow me to think too deeply
But mainly because I am simply too busy surviving the illness, the unrelenting symptoms and the multitude of consequential problems day by day.
There are occasional mornings however, when immediately upon waking I am overcome for a few seconds by a strong indescribable emotional surge. It compels me to exclaim out loud something like ‘I can’t believe it’ – it’s so odd like the realisation of all I have lost and the years that have passed suddenly hits me – it disappears as quickly as it came and I get on with surviving another day.
I’ve always been a life-lover and despite all the suffering and loss, I still am. When your life has been stripped right back to almost nothing perhaps you appreciate life itself even more.
My life may seem ‘ruined’ but like many fellow sufferers/campaigners my spirit is very strong.
As M.E. sufferers deserve so much better, I’ve not even touched on the disbelief, misdiagnosis, and cruel mistreatment bordering on abuse that I and so many others have experienced. I have also suffered untold damage by being prescribed medication far too strong for my ultra sensitive central nervous system. We are missing knowledge and understanding from the medical profession as well as critical funding for research. Please read my next post if you want to read more about what the #MILLIONSMISSING movement is fighting for.
Love and empathy to my fellow sufferers on M.E. Awareness Day 2018.
Thank you to you all for reading this it was a huge effort for me with inevitable worsening of symptoms, so it means a huge amount.
HOW CAN YOU GET INVOLVED
Silence Challenge for Severe ME
We are delighted to announce once again, Amanda and supporters are carrying out the Silence Challenge to raise funds and awareness for Severe ME. Our grateful thanks Amanda.
If you would like to find out more about the Silence Challenge, or wish to make a donation, please visit
https://www.facebook.com/silencechallengeforsevereme/ or MAKE A DONATION BY CLICKING LINK AT TOP OF PAGE
