The second best thing in this post is the news that The Onion has bought InfoWars. That gem has slipped by me this week. Brilliant. Just brilliant.
The first best thing is your 35 minute walks and reduced fatigue. I’m so pleased for you, Amy. I’m celebrating quietly but sincerely without any ra-ra-ra. Big love to you, my friend. Both these bits of news have brightened a very dull and windy Saturday. Xx
Incredible news about the year on year improvement👏👏👏👏
The year on year is where it’s always been at for me. I’ve had 3 relapses, some immensely dark times and plenty of blips. Severe illness continued on for 4 years alongside - what I consider - massive improvements (had always been severe for 24 years) and only reduced from this level in the last 2. You’ve inspired me to write a post about what recovery has looked like. (Not a medical coverage version 😆)
Thanks so much for that link to the article on recovery. Is it just me? But it’s not limited to recovery stories in the media for me. It’s any news coverage on migraine, the latest treatment, how it’s a fight - it all aggravates me.
To me, what’s clear in the article is that as all those of us in recovery know and understand, it’s deeply complex. It’s every bit as complex and misunderstood as the disease itself.
I love the writers reflection on What does recovery mean to me? It’s a very personal question. One I’d love to see us all empowered to sit with rather than us just seeing it as one thing or another - or deemed as unattainable without the understanding of the complexities of the illness in the first place.
Lots to agree with here, Amber. I do agree that media coverage of our illnesses tends to cling to oversimplifications. You can always tell that the person writing the piece has no lived experience with it, and likely doesn’t know anyone with it either.
Recovery is SOOO complex and individualized, I agree. And just to respond to your additional comment below, there is tremendous division in the ME/CFS and long COVID worlds around “recovery.” Some folks have been so sick for so long and they can sometimes view recovery stories as a form of ableism. While sometimes there are tinges of ableism in such stories, I find that an unfair generalization overall. It invalidates the illness experience of those who have recovered as well as invalidates what recovery took from them and the new person it made them into. It’s so complex and rich, as you’ve said.
We can’t all “decide” to recover, but we can choose how to approach everyday life, and that may lift our spirits enough over time to put our nervous system in a good position for allowing some healing to happen.
I love the way you have with words! and your ability to see from many angles.
I’ve written a couple of short posts on what my different aspects of recovery looked like. I’m hopeful it’ll inspire me to write further.
I’m not sure I even like the word recovery (or remission) but I haven’t got any other yet.
I love what Roi Shternin on here refers to as his rehabilitation after ten years bedbound. He still experiences some bedbound and unwell days each month. Highlighting again that it’s all very personal and unique to us. And what does it all mean anyway? Only we can figure that out for ourselves.
Glad to hear about your slow but steady improvement! And I loved the Michael Moore link - thanks for that. And the fact about monkeys and bananas cracked me up 🤣! Hope you continue to improve, Amy!
Hi Amy! As if it weren't bad to have caught one of the earliest strains and to have A positive blood too boot (both risk factors for Covid heart problems), now I have Covid induced fatigue combined with post-surgery fatigue- a real double whammy!
As a side note, I do feel we need to give credit for what it takes to share the story of recovery. Or any stage of the journey with life lived with chronic illness.
It takes a lot of courage and bravery. Vulnerability hangovers can be debilitating. Personally, I used to shake when I went to press share. I felt physically sick when I shared my struggles with slowing down.
Many assumptions are made that a recovered person somehow had it easier. There is as much dismissal and gaslighting as there is around a person who hasn’t recovered (even from ourselves within the community).
There continues on the same level of stigma and shame. It was humiliating when I told my audience how I used to purposely buy a bin I could puke in for the side of my bed (all my adult life).
One of our writers on here was able to collate the stories of a wide range of people in her local area to share their story. Some had recovered. One by one, each one retracted their story and couldn’t go ahead with making it public. Even when it was long behind them.
Whilst I don’t doubt that good fortunate is on our side I would suggest that if it is on those in recovery, it is also upon those who aren’t….
When we speak of the good fortunate a person must have had, here’s what my good fortune looked like:
1. Finding myself disabled by illness, no longer able to drag myself to work. No mortgage insurance, no sick pay, no immediate family to help. The good fortune I came to later reflect on was that these dire circumstances freed up the time and space for me to do the work to recover.
2. When I plucked up the courage to ask the NHS “what support is available to me?” They responded there is none. In hindsight, this was a blessing in disguise. It meant that instead of continually re traumatising myself with the medical field as I had been doing for the previous 20 years, I could spend my limited ability to function on other avenues that could at least hold out some possibility of meeting the most desperate need that I had.
These are just a couple of examples. What I’m trying to say though is that at the time this did not look or feel like good fortune.
A person sharing their recovery story comes under a lot of scrutiny. There is as much resistance to digging deep into the complexity of it as is there is in the illness itself.
If we are to increase the abysmal numbers of recovery then this has to change. The only way I can see that we will come to glean any insights is by sharing our stories.
If we cannot cheerlead ourselves on, we cannot cheerlead on each other.
Saving to delve into more later. Thank you, Amy. Gentle hugs and Yays for reduced fatigue. Squirrel-drama was so cute!
Haha, I was watching it all go down from a slow walk on my treadmill 🐿️
The second best thing in this post is the news that The Onion has bought InfoWars. That gem has slipped by me this week. Brilliant. Just brilliant.
The first best thing is your 35 minute walks and reduced fatigue. I’m so pleased for you, Amy. I’m celebrating quietly but sincerely without any ra-ra-ra. Big love to you, my friend. Both these bits of news have brightened a very dull and windy Saturday. Xx
Ahh, thanks Miranda! I didn’t peg you as the cheerleader type anyway 😉. So glad to have brought you that delightful news about The Onion!
I do cheerleading. Just quietly. 😜
fair enough 😂
Incredible news about the year on year improvement👏👏👏👏
The year on year is where it’s always been at for me. I’ve had 3 relapses, some immensely dark times and plenty of blips. Severe illness continued on for 4 years alongside - what I consider - massive improvements (had always been severe for 24 years) and only reduced from this level in the last 2. You’ve inspired me to write a post about what recovery has looked like. (Not a medical coverage version 😆)
Thanks so much for that link to the article on recovery. Is it just me? But it’s not limited to recovery stories in the media for me. It’s any news coverage on migraine, the latest treatment, how it’s a fight - it all aggravates me.
To me, what’s clear in the article is that as all those of us in recovery know and understand, it’s deeply complex. It’s every bit as complex and misunderstood as the disease itself.
I love the writers reflection on What does recovery mean to me? It’s a very personal question. One I’d love to see us all empowered to sit with rather than us just seeing it as one thing or another - or deemed as unattainable without the understanding of the complexities of the illness in the first place.
Lots to agree with here, Amber. I do agree that media coverage of our illnesses tends to cling to oversimplifications. You can always tell that the person writing the piece has no lived experience with it, and likely doesn’t know anyone with it either.
Recovery is SOOO complex and individualized, I agree. And just to respond to your additional comment below, there is tremendous division in the ME/CFS and long COVID worlds around “recovery.” Some folks have been so sick for so long and they can sometimes view recovery stories as a form of ableism. While sometimes there are tinges of ableism in such stories, I find that an unfair generalization overall. It invalidates the illness experience of those who have recovered as well as invalidates what recovery took from them and the new person it made them into. It’s so complex and rich, as you’ve said.
We can’t all “decide” to recover, but we can choose how to approach everyday life, and that may lift our spirits enough over time to put our nervous system in a good position for allowing some healing to happen.
I love the way you have with words! and your ability to see from many angles.
I’ve written a couple of short posts on what my different aspects of recovery looked like. I’m hopeful it’ll inspire me to write further.
I’m not sure I even like the word recovery (or remission) but I haven’t got any other yet.
I love what Roi Shternin on here refers to as his rehabilitation after ten years bedbound. He still experiences some bedbound and unwell days each month. Highlighting again that it’s all very personal and unique to us. And what does it all mean anyway? Only we can figure that out for ourselves.
Thank you, my friend. The feeling is entirely mutual ☺️.
You make a good point about recovery being an inadequate word. The English language is so frustratingly limited sometimes!
We need to come up with a new one Amy!☺️
Thanks so much for the mention :) I really appreciate it and glad you found the post helpful xx
So delighted to hear that you are recovering and feeling better! Such good news
Thanks so much, Helen! I hope you’re continuing to do well?
I’m great - I’m just wrapping up an 8 month stint volunteering in Timor-Leste, then I’ll be traveling through Indonesia for a few months
WOW - awesome! That’s very inspiring!
Glad to hear about your slow but steady improvement! And I loved the Michael Moore link - thanks for that. And the fact about monkeys and bananas cracked me up 🤣! Hope you continue to improve, Amy!
So random, right? 🍌 but fun 🤩. Thanks for reading!
There, I clicked on that little heart thingie. Are you satisfied now?
Still counting the days since my Covid-caused heart surgery. In four more days I'll be able to lift more than ten pounds again!
Better ❤️ my remarks or my chest pain will return!
So much ❤️ here, my fellow alum! Glad you made out okay with the surgery. And don’t go all Schwarzenegger with those weights just yet!
Hi Amy! As if it weren't bad to have caught one of the earliest strains and to have A positive blood too boot (both risk factors for Covid heart problems), now I have Covid induced fatigue combined with post-surgery fatigue- a real double whammy!
That’s a double-layer crap cake for sure! I’m sorry 😞
As a side note, I do feel we need to give credit for what it takes to share the story of recovery. Or any stage of the journey with life lived with chronic illness.
It takes a lot of courage and bravery. Vulnerability hangovers can be debilitating. Personally, I used to shake when I went to press share. I felt physically sick when I shared my struggles with slowing down.
Many assumptions are made that a recovered person somehow had it easier. There is as much dismissal and gaslighting as there is around a person who hasn’t recovered (even from ourselves within the community).
There continues on the same level of stigma and shame. It was humiliating when I told my audience how I used to purposely buy a bin I could puke in for the side of my bed (all my adult life).
One of our writers on here was able to collate the stories of a wide range of people in her local area to share their story. Some had recovered. One by one, each one retracted their story and couldn’t go ahead with making it public. Even when it was long behind them.
Whilst I don’t doubt that good fortunate is on our side I would suggest that if it is on those in recovery, it is also upon those who aren’t….
When we speak of the good fortunate a person must have had, here’s what my good fortune looked like:
1. Finding myself disabled by illness, no longer able to drag myself to work. No mortgage insurance, no sick pay, no immediate family to help. The good fortune I came to later reflect on was that these dire circumstances freed up the time and space for me to do the work to recover.
2. When I plucked up the courage to ask the NHS “what support is available to me?” They responded there is none. In hindsight, this was a blessing in disguise. It meant that instead of continually re traumatising myself with the medical field as I had been doing for the previous 20 years, I could spend my limited ability to function on other avenues that could at least hold out some possibility of meeting the most desperate need that I had.
These are just a couple of examples. What I’m trying to say though is that at the time this did not look or feel like good fortune.
A person sharing their recovery story comes under a lot of scrutiny. There is as much resistance to digging deep into the complexity of it as is there is in the illness itself.
If we are to increase the abysmal numbers of recovery then this has to change. The only way I can see that we will come to glean any insights is by sharing our stories.
If we cannot cheerlead ourselves on, we cannot cheerlead on each other.