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This is what Very Severe ME is like

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This is Whitney Dafoe. He is 36 and has Very Severe ME. In this photo he is being taken to hosptial to have his feeding tube changed. I think he was briefly lifting his arms up at the pleasure of actually feeling fresh air on his skin.

This is a post from Whitney which was put on Facebook on 7th August 2020 for Severe ME Awareness Day. I think it was typed by his sister. As follows :

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” I haven’t left my room for 7 years except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time as well as Fentanyl during the procedure.

I haven’t been touched by another human being without it hurting me in 7 years.

I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years.

I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes.

I haven’t taken a shower in 7 years. I clean the most needed parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me.

I haven’t cut my own toe nails in 7 years.

I haven’t been able to hold or even touch my camera in 7 years (photography is my passion and my life).

I haven’t peed standing up in 9 years. I haven’t walked to the bathroom to pee in 7 years. I pee in a urinal in bed.

I haven’t made love to a woman in 9 years. I haven’t been sexual in any way in 5 years.

I haven’t brushed my teeth in 6 years. It hurts my stomach, making it worse and putting my ability to tolerate the feeding tube at risk. Which puts my life at risk.

I haven’t seen a dentist in 9 years.

I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years. I wear heavy duty earmuffs whenever my caregivers are in my room for the bare minimum of time. They can’t talk and have to be as quiet and gentle as possible.

I haven’t felt like a human being in 7 years. All humanity has been taken from me by ME/CFS. I live only to continue living. There is no love, joy, passion, creation. Only endless numbered days.

I fight to survive for all those living and dying in silence and darkness. ”

End of post

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I hope some people out there who do not have ME themselves, and are ignorant about how bad it can be, read this.

Please read it again. And try to imagine your own life being like this. For at least 7 years. With no end in sight. And the world not interested. Imagine how strong mentally you would need to be to cope?

ME Awareness Day 2016 : Comments from sufferers

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image

I wanted to do something for today but am very lacking in physical and mental energy.
So I am just posting a selection of comments from people that I came across on Twitter.
I think these well describe the situation we are in.

“Many people with ME are suffering against a backdrop of ignorance and disbelief”
Sarah, England

“I’ve been ill for 10 years but was only diagnosed in 2014”
Amelia, UK

“If you phone the NHS seeking a doctor who has any knowledge of this illness, they cannot name one person. Not one”
John, UK

“Daughter has ME in UK and little support. GP commented ‘you’re not that bad are you?’  I told him he only sees her when she is well”
Person in UK

“People with ME doing exercise under medical persuasion have become bedridden and appallingly ill”
John, Scotland

“It is very sad that government have allowed an entire disease to go unchecked for 3 decades”
Kati, Vancouver

“I am only 31 and yet everday things like taking a bath exhaust me”
Mary, USA

“People struggle to comprehend the enormity of the situation of people with ME. It just seems too unbearable”
Nicola, UK

“Diagnosed with breast cancer. Astonished by reactions. Where were all you caring people when I was much more ill with ME/CFS ?”
Linda, Belgium

“I used to be ashamed of this, but I have almost no support. One friend. Daughter sees me once a month. Have severe progressive ME and alone”
Louise, Canada

“I know far too many people who’s loved ones see, disbelieve, make life hell for the person with ME. And leave”
Lindy, area not stated

“So many people have said to me ‘it must be great to stay in bed all day’ . Well No, it actually isn’t”
Female, UK

“Sat on the bathroom floor because I am too tired to dry myself”
Person in UK

“People close to us must also find acceptance : understanding that ME isn’t a mental block and we can’t just run it off”
James, UK

“I’m always amazed at the amount of people who aren’t accepting. The psychosocial view of ME invites judgment on the patient”
Henry, UK

“What does it say about our situation that we have come to EXPECT neglect, disbelief, unprofessionalism and dismissal from doctors ?”
ME Action Network,  Global

“I fought so hard to recover from my broken neck and become a triathlete and Advanced Personal Trainer, yet I cannot beat damn ME. Says it all”
Carmel, England

“I can relate to that. I survived a rare aggressive form of Non-Hodgkins Lymphoma,  but I cannot beat ME”
Female, UK

“Patients are left household, bedbound and even fed by tubes. We as patients have to raise awareness and funding alone for ME/CFS”
Jade, England

“And yet 1 out of every 4 people with ME have lower quality of life than people with heart failure, end stage AIDS, or stage 4 cancer”
Kit, USA

2015 in review

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The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here's an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,300 times in 2015. If it were a cable car, it would take about 38 trips to carry that many people.

Click here to see the complete report.

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