Holding on to hope was crucial for my recovery. I used specific tools for it: Building my "Hope List", being delusional on purpose (yes, you read that right!), and learning from others ahead of me.
I’ve become curious about the relationship we have between hope and belief and the part this plays in our wellness, or lack thereof.
At one time it felt like all I had was hope, but when I looked back there was the belief that “I matter. My health matters”. I really imbed the belief into my every day.
What I’ve realised in my own recovery journey is that there is no interest in it in the medical field. So if there is no interest in recovery then how can they possibly tell us what’s possible or not possible?
I truly believe that the minuscule numbers for recovery need not be this way and the possibility is much higher than we’ve been led to believe. It’s the lack of insight, education and understanding that surrounds it that’s the challenge. All of which can only come about with interest.
I also keep one of these lists! Spreadsheet version. It's huge for reminding me that there's always a new avenue to explore. My partner and I talked a lot about never pinning everything onto one solution like its the last hope, because every time either one of us spends some time doing research the list rapidly grows again. Also a lot of little things have contributed to improvements so it's been an incremental journey rather than a single flashy solution for me.
It's pretty funny how some ideas on my list seemed ridiculous early on, and I never expected to actually try them, but when enough time passed, they started to look more and more reasonable until they found their way to number one. Some of those wildcards have gone well - others, not so much!
And curious - which of the wildcards ended up going well for you? I tend to find that what’s working for people is in the same few buckets, but very curious to see if there’s something I haven’t come across yet?
Agreed on the importance of breathing. It's so hard because telling someone to breathe is kind of unacceptable as the only offer of a solution to a serious medical problem, but when your nervous system is so damaged, it is one way we can tap into to it and regain a bit of control, so it is still super valuable...
One I didnt expect much from was lowering free glutamates in my diet. It had been suggested, but I didn't try it until a flare-up where I became too sensitive to light and noise to work. I was super strict for several weeks which pulled me out of that state, and now I'm just more conscious of it and cut out a few things that used to be a regular part of my diet like parmesan cheese 😢
Another thing I had zero experience in, and was pretty closed off to, was the idea of fasting. I started exploring that early in my second year of long hauling and I think it's been beneficial for me.
Wildcard things that didn't go well - iron supplementation and raw garlic! My heart symptoms seemed to get worse on both.
Hi Mary-- Not sure if you'll see this message. It's so interesting to read about your fasting experience. Could you share a bit more about what you did and how you figured out how to do it? Thank you!
Hi, thanks for your message. Unfortunately I'm probably in the least position to give any sort of details on getting started as I'm still very much a hesitant and inexperienced person regarding it. I really kind of did my own thing, listening to my body, and easing in and out with really nutritious organic foods. I will give a bit of a general update as to where I'm at on the topic though,
The way I think it benefitted me most was just changing up my eating habits which was needed. From being high output to suddenly sedentary with Long COVID, I was continuing to eat portions that were now too big for me, and my body I think was working overtime trying to digest it all. Stripping things away really let me focus on listening to what my body needed and feeding it nourishing, nutrient rich foods, but also giving it time to rest and digest.
I felt anti inflammatory effects that excited me more at first, but they didn't feel lasting. When taking away food maybe I was just reducing mast cell reactions or autoimmune type responses, but food is necessary so it started to feel more important to figure out if I was reacting more to certain foods, which links actually to my first wildcard topic I had mentioned above.
I still don't know if cutting out free glutamate foods in that experiment benefited me because it had anything to do with glutamates or if it was because it requires cutting out all processed foods which maybe has other triggers, and it cuts out fermented foods which can often be high histamine, but it showed me that what I eat clearly does matter so I'm still working to identify better what foods are best for me and how to make it as well balanced as possible.
At this stage I'm not sure I'll be doing any more fasting. I feel like I got out of it maybe what I needed. I'm a pretty small person and maintaining my nutrition is too important to start playing with longer fasts (never went there) nor does it feel like the best use of the downtime that I get.
If you are looking for resources to online communities of Long COVID fasters I can always pass some links on, just PM me if you want that. Cheers :)
I love that - thanks for sharing! So true on there always being more avenues the more research you do (I also love a spreadsheet lol).
And 100% agree on the solutions shifting over time. My biggest example - I saw a pulmonologist a few months in, still having breathing issues and chest pain, and all she had to offer was a leaflet with some breathing exercises that she didn’t seem to be convinced of herself. I was furious, and devastated (after waiting for that appointment for months, and pinning my hopes on that). A year later, here I am training as a breathwork coach, because breathing exercises ended up being so impactful, after all. So, I hear you on things shifting as you learn more :) Thx for sharing!
I love the idea of being purposely delusional and surrounding yourself only with positive stories. If I had the choice between being realistic and being healthy, I'd choose healthy!
I think it's something I also did almost instinctively. And my doctor always does this. Whenever we arrange for a new date, he says "and if you're healthy by then, you can cancel it." And whenever he prescribes something, he also says which steps we'll take in case it doesn't work.
About the recovery numbers: I actually believe they aren't right. I read that 85-90% of people with ME are misdiagnosed or not diagnosed at all. So even if the recovery statistics were done perfectly (which they probably aren't, because a lot of people recover without ever informing their doctors), we would be speaking only about 10-15% of people who actually have had this disorder. And for COVID-induced ME, we actually cannot have proper data, since this is fairly new...
Yes I agree, numbers are likely inaccurate. And I’m glad you have such a great doctor! Mine does the same thing, she had a huge role in keeping my hope up, too. Thx for sharing!
I’ve become curious about the relationship we have between hope and belief and the part this plays in our wellness, or lack thereof.
At one time it felt like all I had was hope, but when I looked back there was the belief that “I matter. My health matters”. I really imbed the belief into my every day.
What I’ve realised in my own recovery journey is that there is no interest in it in the medical field. So if there is no interest in recovery then how can they possibly tell us what’s possible or not possible?
I truly believe that the minuscule numbers for recovery need not be this way and the possibility is much higher than we’ve been led to believe. It’s the lack of insight, education and understanding that surrounds it that’s the challenge. All of which can only come about with interest.
Well said Amber!!! ♥️
I also keep one of these lists! Spreadsheet version. It's huge for reminding me that there's always a new avenue to explore. My partner and I talked a lot about never pinning everything onto one solution like its the last hope, because every time either one of us spends some time doing research the list rapidly grows again. Also a lot of little things have contributed to improvements so it's been an incremental journey rather than a single flashy solution for me.
It's pretty funny how some ideas on my list seemed ridiculous early on, and I never expected to actually try them, but when enough time passed, they started to look more and more reasonable until they found their way to number one. Some of those wildcards have gone well - others, not so much!
And curious - which of the wildcards ended up going well for you? I tend to find that what’s working for people is in the same few buckets, but very curious to see if there’s something I haven’t come across yet?
Agreed on the importance of breathing. It's so hard because telling someone to breathe is kind of unacceptable as the only offer of a solution to a serious medical problem, but when your nervous system is so damaged, it is one way we can tap into to it and regain a bit of control, so it is still super valuable...
One I didnt expect much from was lowering free glutamates in my diet. It had been suggested, but I didn't try it until a flare-up where I became too sensitive to light and noise to work. I was super strict for several weeks which pulled me out of that state, and now I'm just more conscious of it and cut out a few things that used to be a regular part of my diet like parmesan cheese 😢
Another thing I had zero experience in, and was pretty closed off to, was the idea of fasting. I started exploring that early in my second year of long hauling and I think it's been beneficial for me.
Wildcard things that didn't go well - iron supplementation and raw garlic! My heart symptoms seemed to get worse on both.
Hi Mary-- Not sure if you'll see this message. It's so interesting to read about your fasting experience. Could you share a bit more about what you did and how you figured out how to do it? Thank you!
Hi, thanks for your message. Unfortunately I'm probably in the least position to give any sort of details on getting started as I'm still very much a hesitant and inexperienced person regarding it. I really kind of did my own thing, listening to my body, and easing in and out with really nutritious organic foods. I will give a bit of a general update as to where I'm at on the topic though,
The way I think it benefitted me most was just changing up my eating habits which was needed. From being high output to suddenly sedentary with Long COVID, I was continuing to eat portions that were now too big for me, and my body I think was working overtime trying to digest it all. Stripping things away really let me focus on listening to what my body needed and feeding it nourishing, nutrient rich foods, but also giving it time to rest and digest.
I felt anti inflammatory effects that excited me more at first, but they didn't feel lasting. When taking away food maybe I was just reducing mast cell reactions or autoimmune type responses, but food is necessary so it started to feel more important to figure out if I was reacting more to certain foods, which links actually to my first wildcard topic I had mentioned above.
I still don't know if cutting out free glutamate foods in that experiment benefited me because it had anything to do with glutamates or if it was because it requires cutting out all processed foods which maybe has other triggers, and it cuts out fermented foods which can often be high histamine, but it showed me that what I eat clearly does matter so I'm still working to identify better what foods are best for me and how to make it as well balanced as possible.
At this stage I'm not sure I'll be doing any more fasting. I feel like I got out of it maybe what I needed. I'm a pretty small person and maintaining my nutrition is too important to start playing with longer fasts (never went there) nor does it feel like the best use of the downtime that I get.
If you are looking for resources to online communities of Long COVID fasters I can always pass some links on, just PM me if you want that. Cheers :)
Thank you for sharing! Love that you are listening to your body and experimenting, too
Very interesting. Thank you for sharing!
I love that - thanks for sharing! So true on there always being more avenues the more research you do (I also love a spreadsheet lol).
And 100% agree on the solutions shifting over time. My biggest example - I saw a pulmonologist a few months in, still having breathing issues and chest pain, and all she had to offer was a leaflet with some breathing exercises that she didn’t seem to be convinced of herself. I was furious, and devastated (after waiting for that appointment for months, and pinning my hopes on that). A year later, here I am training as a breathwork coach, because breathing exercises ended up being so impactful, after all. So, I hear you on things shifting as you learn more :) Thx for sharing!
I love the idea of being purposely delusional and surrounding yourself only with positive stories. If I had the choice between being realistic and being healthy, I'd choose healthy!
I think it's something I also did almost instinctively. And my doctor always does this. Whenever we arrange for a new date, he says "and if you're healthy by then, you can cancel it." And whenever he prescribes something, he also says which steps we'll take in case it doesn't work.
About the recovery numbers: I actually believe they aren't right. I read that 85-90% of people with ME are misdiagnosed or not diagnosed at all. So even if the recovery statistics were done perfectly (which they probably aren't, because a lot of people recover without ever informing their doctors), we would be speaking only about 10-15% of people who actually have had this disorder. And for COVID-induced ME, we actually cannot have proper data, since this is fairly new...
Yes I agree, numbers are likely inaccurate. And I’m glad you have such a great doctor! Mine does the same thing, she had a huge role in keeping my hope up, too. Thx for sharing!