As some of you know I have Severe ME, it has varied over the years as to quite how severe, from being able to go downstairs (on a stairlift) and lay on the sofa for an hour to completely paralysed. People only ever see me on that good moment on the sofa as very severe ME is invisible.
Many people don't realise how severe ME can be due to people being stuck in bed unable to be part of the outside world. It's an invisible condition on the whole but one brave friend has spent months putting this together to show some of what she goes through.
Please please take a moment to look, reflect on what it must be like for that to of been your life for over a decade (the person is still classed as 'young') and then share it with friends. She rarely has a voice but you can give her one by sharing this.
Visible ME #1: an actual pic of my room when the lights are out. I live in total darkness.
Visible ME #2: my room with lights on for carers; a soft red glow (less red than in pic).
Visible ME #3: Smartphone: Window on world; saves energy; aids communication.
Visible ME #4: some of my cooling equipment for hot flushes and sweats.
Visible ME #5: all sound is very painful and exhausting. I need earplugs 24-7.
Visible ME #6: Draught excluder. Can't bear even a crack of light.
Visible ME #7: red and amber bulbs; cannot tolerate any bright light.
Visible ME #8: too poorly to use mug, everything is administered by syringe
Visible ME #9: Even dim light very painful and exhausting. Need eye protection at all times.
Visible ME #10: I use pads due to double urge-incontinence and being too poorly to use a bedpan.
Visible ME #11: Tube-fed as too much pain and exhaustion to eat and drink.
Visible ME #12: vital advice, support and awareness, which is hard to come by
Visible ME #13: bed cradle to keep the duvet off my bent feet and prevent further damage.
Visible ME #14: Smell and chemical sensitivity makes me very ill and severely limits me
Visible ME #15: ME causes many types of constant, severe pain all over the body.
Visible ME #16: soft, loose clothing, bedding etc, due to pain, discomfort, touch-sensitivity
Visible ME #17: daily cocktails of drugs, though doctors are uneducated about appropriate symptom-relief
Visible ME #18: profile bed required to assist carers due to my severe lack of mobility
Visible ME #20: baby spoons required for very occasional oral feeding as they they are small
Visible ME #21: weakened body and immune-system means more susceptible to infections
Visible ME #22: all products have to be completely non-scented (inc no chemical smell). They are hard to find!
Visible ME #23: communication is so difficult. Special aides are needed for when I can't speak at all
Visible ME #24: Nausea and vomiting can be a big part of everyday life with ME
If you would like to leave a message for my friend who did this then please leave a comment and I will pass it on.
Thank you and Well done for showing a small part of your reality living with very severe ME That will have taken a huge effort. Sending wishes for your health to start to improve to give you some relief from that torment.
ReplyDeleteThank you so much for this profoundly moving and powerful glimpse into the hidden and so often denied, world of Very Severe ME. I challenge anyone to read the above account and not be outraged to their core that people of all ages are undergoing decades of unimaginable physical suffering, like this, without relief, treatment or hope of a cure. I would like to thank the young person who so bravely has spoken out and posted this extraordinarily powerful photographs, from the bottom of my heart. It is only by exposing the shocking reality of Severe/Very Severe ME, like this, that the change that is so desperately required, will come about. I have posted a link to this blog on Stonebird : http://www.stonebird.co.uk/ , on Facebook and Twitter.
ReplyDeleteThank you for sharing this, I do not want to begin to imagine how difficult your daily life must be.
ReplyDeleteME is scary, so little is really known. Yet, it is so important that people at large realise that ME is much more than just the mild or moderate cases that society sees when these patients are well enough.
Thank you again for taking the brave step of sharing what it means to have Very Severe ME. I really hope for a cure for you, and some treatment for the rest of us, so that we might never have to experience your situation.
Thinking of you, with love. xx
I have severe (housebound but not bedbound) ME, and I am always - still - stunned by the levels of suffering among severe ME sufferers. It really is such a hideous illness, and one worthy pf everyone's respect and help. I am really hoping that the ignorance of doctors in this country will soon be reversed - this has gone on too long. I am in the process of writing my own book on how it feels to have ME, hoping to change people's perceptions. Please tell your friend that this post was very powerful, even for someone who knows about how severe ME can be. I hope this impacts many people.
ReplyDeleteApparently if you do some CBT and GET you will be all better soon....
ReplyDeleteOnly joking.
May today be as bearable as possible for you. Roll on the Ritubimax trial etc and lets they can find a cure for us all.
Joss
This is a powerful page and statement. Thank you for sharing. I'm curious if you know where to obtain the CD and the communication aids.
ReplyDeleteThe CD in the picture is this amazing and very powerful DVDs
ReplyDeletehttp://voicesfromtheshadowsfilm.co.uk
ReplyDeleteA brilliant piece of artwork. Thank you for sharing some of your life with us. You are not forgotten xxx
ReplyDeleteSend her my deepest love <3
ReplyDeleteBy sharing such personal insight, you're contributing hugely to challenging public perception of severe M.E. I send very best wishes and the hope that today is one of your better ones xx
ReplyDelete