Alison Williams
@tadpole99.bsky.social
Tanka editor for Presence
https://haikupresence.org/home
Writer of haiku, tanka and more
http://haikusoup.blogspot.co.uk/
Recently diagnosed with ME/CFS and learning to live with it
A bit of a hermit
Fascinated by Icelandic volcanoes
Retired librarian
https://haikupresence.org/home
Writer of haiku, tanka and more
http://haikusoup.blogspot.co.uk/
Recently diagnosed with ME/CFS and learning to live with it
A bit of a hermit
Fascinated by Icelandic volcanoes
Retired librarian
GP and dentist, only when able, both 5 minutes walk with rollator away.
March 21, 2025 at 8:38 PM
GP and dentist, only when able, both 5 minutes walk with rollator away.
I absolutely get this, I have dragged myself places rather than (as healthy people put it) 'just' getting a taxi. There's so much more to it, the chat, the getting in and out. I like being able to set my own pace and stop and rest when I need to.
March 12, 2025 at 2:23 PM
I absolutely get this, I have dragged myself places rather than (as healthy people put it) 'just' getting a taxi. There's so much more to it, the chat, the getting in and out. I like being able to set my own pace and stop and rest when I need to.
I've been using the Visible armband and app for almost 6 months. Its been really helpful, I feel like I'm pacing much better. You can download the app for free to get an idea if it might work for you. The armband/tracker adds a lot of extra features is subscription based.
March 2, 2025 at 5:44 PM
I've been using the Visible armband and app for almost 6 months. Its been really helpful, I feel like I'm pacing much better. You can download the app for free to get an idea if it might work for you. The armband/tracker adds a lot of extra features is subscription based.
The hallmark symptom that differentiates ME/CFS from other illnesses that involve fatigue is PEM - Post-Exertional Malaise, a disproportionate increase in symptoms that hits 24-72 hours *after* activity.
February 23, 2025 at 3:07 PM
The hallmark symptom that differentiates ME/CFS from other illnesses that involve fatigue is PEM - Post-Exertional Malaise, a disproportionate increase in symptoms that hits 24-72 hours *after* activity.
Visible has helped me pace successfully. It has done more for me than the medical profession. I'm happy to pay the sub and accept a few technical glitches. This device should be NHS funded so everyone can benefit.
January 22, 2025 at 7:19 PM
Visible has helped me pace successfully. It has done more for me than the medical profession. I'm happy to pay the sub and accept a few technical glitches. This device should be NHS funded so everyone can benefit.
Visible has helped me pace much better than I used to. It also tracks symptoms and does some other things. I got the subscription version after trying the free app.
January 19, 2025 at 5:42 PM
Visible has helped me pace much better than I used to. It also tracks symptoms and does some other things. I got the subscription version after trying the free app.
Personally speaking I'd rather be assisted to live!
December 19, 2024 at 4:24 PM
Personally speaking I'd rather be assisted to live!
Some kind of life-sucking worm? Sorry, but ME is just not pretty.
December 12, 2024 at 4:30 PM
Some kind of life-sucking worm? Sorry, but ME is just not pretty.
Well, this is a new take on assisted dying.
December 11, 2024 at 8:49 PM
Well, this is a new take on assisted dying.
I read this and it is like a description of another world. This is what we need, and we get nothing. I am not even very severe, just severe and barely managing. Very severe must be a living nightmare.
December 9, 2024 at 11:56 PM
I read this and it is like a description of another world. This is what we need, and we get nothing. I am not even very severe, just severe and barely managing. Very severe must be a living nightmare.
I don't want to follow you. I don't want anything to do with your company! I got my package but only thanks to a kind neighbour, no thanks to Evri. Your courier just dumps all the parcels for this large appt block wherever he likes. He does this every day!
December 9, 2024 at 4:35 PM
I don't want to follow you. I don't want anything to do with your company! I got my package but only thanks to a kind neighbour, no thanks to Evri. Your courier just dumps all the parcels for this large appt block wherever he likes. He does this every day!
I agree, we need different metaphors, better metaphors. I rather like Vlad Vexler's metaphor of chronic illness as a dance, a brutal kind of dance sometimes but still, a part of life, some rough terrain that can be negotiated more or less skillfully.
December 7, 2024 at 11:17 PM
I agree, we need different metaphors, better metaphors. I rather like Vlad Vexler's metaphor of chronic illness as a dance, a brutal kind of dance sometimes but still, a part of life, some rough terrain that can be negotiated more or less skillfully.
Local 'fatigue service' is commissioned on the basis of 'getting people back to work', if you are too ill to work, no service for you.
December 7, 2024 at 9:29 PM
Local 'fatigue service' is commissioned on the basis of 'getting people back to work', if you are too ill to work, no service for you.
You know they are calling it 'graded activity therapy' now, or 'pacing up'. Or, as my doctor said to me many years ago when I was mild/moderate, 'Do a little more every day!'
December 7, 2024 at 1:27 PM
You know they are calling it 'graded activity therapy' now, or 'pacing up'. Or, as my doctor said to me many years ago when I was mild/moderate, 'Do a little more every day!'
Long, but not a difficult read. Well structured so you can get to the info you need easily. Highly recommended!
December 6, 2024 at 7:29 PM
Long, but not a difficult read. Well structured so you can get to the info you need easily. Highly recommended!
How long can it take to stocktake something non-existent?
December 6, 2024 at 3:45 PM
How long can it take to stocktake something non-existent?
I don't mean I want a *cure* when I say I need help. I mean I need practical help to live with it, advice, ongoing support, advocacy, not just a shrug and a wave from medical professionals and a "Sorry, there's nothing we can do."
December 6, 2024 at 2:21 PM
I don't mean I want a *cure* when I say I need help. I mean I need practical help to live with it, advice, ongoing support, advocacy, not just a shrug and a wave from medical professionals and a "Sorry, there's nothing we can do."
Stop? It's happening all over again with Long Covid.
December 1, 2024 at 1:57 PM
Stop? It's happening all over again with Long Covid.