So great to hear from you Amy! Your analysis of where you find yourself right now and the lessons learned have provided me with food for thought. I have experienced very bad hair loss over the last few years (for a few reasons) and have recently started wearing wigs. It’s not the same thing you are going through, but I have struggled with my perception of myself, how much to share with people etc. You have given me a lot to think about.
Hi Paula! Thanks as always for reading and commenting so thoughtfully. I’m sorry for your struggles with hair loss - hair is so much tied to how we feel about ourselves, and I get that on some small level. I lost a ton of hair a few years back and one of my fingernails separated from the nail bed before it was discovered that my ferritin level was 7 (under 30 is a problem, though many docs say under 60 is when it should be addressed). Immediately after the second iron infusion, the hair loss abruptly stopped but I was left with a big part at the front of my head. It made me feel terrible to look at. I’m sorry that there’s not been a remedy like that for your loss. I do hope the wigs eventually make you feel the way you’d like to feel when you look in the mirror.
I also lost most of my hair after my first bout with COVID. Went from vibrant and thick to glad that anything was there at all.
Then I discovered an important nutrient, PQQ, that I was giving to my ailing geriatric husband for general health reasons. I'd been taking it as well. Some months after starting the PQQ, I noticed new hair growing especially along my husband's hair line. Not long afterward, my hairdresser confirmed, YES, you are growing new hair all over your head!
It's been more than two years now and I've gone from sparse to a full and vibrant head of hair. My eyebrows have even grown back in.
It takes more than one nutrient to grow hair. In my posts I include information about caring for mitochondrial health, along with links to peer reviewed research on each nutrient that I personally use. Mitochondria, are a target of the Sars-CoV2 virus and many of our Long Covid pathologies stem from mitochondrial dysfunction. PQQ specifically stimulates mitochondrial biogenesis, making new mitochondria and repairs mitochondrial damage.
As always, thanks for the shoutout. I too have been steadily increasing my limits and it’s so true the frustration of feeling good and wanting to be more like my old self but also not(?!?). “I thought I was happy living that life” hit hard in that regard. I just keep reminding myself that I’m building up to something even better but I’m not good with patience. I’m working on it! And I’m excited to check out your book rec. I love a good crime read.
I totally hear you about being impatient! I mean, there’s a reason some of us get these illnesses - we’re so wired for action and fast results, that we don’t realize how much the nervous system doesn’t love that. I truly believe the way I had been living set the stage for a longer term illness (not caused it, per se, but created a ripe environment).
It took me two full years of therapy with someone who had had ME/CFS herself to loosen my death grip on the way I was living life - and even the way I was trying to “achieve” recovery. So dysregulating!
That’s such a great insight, Amber - the way ableism shows up through recovery. All of a sudden, we’re not sick enough to be here? Like we haven’t earned our stripes if we didn’t stay sick? Fortunately I think that’s a minority opinion. But I did make sure to get out of those toxic Facebook groups before anyone could bully me over having recovered.
So happy to read your post this morning. I've missed you!
I sincerely hope that other readers, especially those of us who, like you, following their Long COVID journey, feel that they are back to 95%, but not always. It's a reminder of our common journey, our humanity.
Thanks so much, Mardi! It’s been a bit wobbly trying to find the balance between showing up here and living a full life again. This post took me over four hours, and it’s hard to find that kind of time! But I do enjoy it.
I do hear from readers who are in various stages of recovery, as well as some who don’t feel they are yet but are just here for the shot of hope. I do wonder how many people’s bodies just needed a few years to approach homeostasis again after the immune and inflammatory storm.
Oh, and I just watched your puppy video this morning on YouTube! Are those all yours? I may have missed that update (pupdate? 🐶)
Also, If you want copy for your next post, please consider copying my text from comments where I discuss hair loss and COVID. The PQQ that I take is doing an amazing job and it is helping mitochondria all over the body. I can supply you with more info if it's wanted.
YES! Our mama dog gave birth 6 weeks ago. Their grandsire is my service dog. He's 11+ years old, so I plan to keep one of these babies... likely Bow, the black male who is going to be a big tall dog, very suitable for my needs.
Not sure if it would float your boat, but having you feature a paragraph about them and how they are getting basic training or more, to also become service or emotional support dogs. They are getting loving treatment. All have been genetically tested and the results will be available to adopting families.
Before I used a walker regularly, I often encountered similar situations where people didn't understand why I couldn't go up stairs or had trouble getting off low surfaces. Because unless you saw my limp, I "looked" typical. No one could see my Swiss Cheese muscle cells 😂 You always have the absolute best GIFs in your stacks too.
My 3yo great is mobility disabled (from a post-viral condition) and I watch her scoot on her butt to get up and down stairs with so much wonder at her adaptation but also at how the world and its expectations haven’t gotten to her yet.
Thank you, Amy, you really nailed the feeling. I've been thinking about the liminal space a lot these days. Lots to celebrate, but lots of uncertainty still left. Thanks for sharing with us.
So great to hear from you Amy! Your analysis of where you find yourself right now and the lessons learned have provided me with food for thought. I have experienced very bad hair loss over the last few years (for a few reasons) and have recently started wearing wigs. It’s not the same thing you are going through, but I have struggled with my perception of myself, how much to share with people etc. You have given me a lot to think about.
Hi Paula! Thanks as always for reading and commenting so thoughtfully. I’m sorry for your struggles with hair loss - hair is so much tied to how we feel about ourselves, and I get that on some small level. I lost a ton of hair a few years back and one of my fingernails separated from the nail bed before it was discovered that my ferritin level was 7 (under 30 is a problem, though many docs say under 60 is when it should be addressed). Immediately after the second iron infusion, the hair loss abruptly stopped but I was left with a big part at the front of my head. It made me feel terrible to look at. I’m sorry that there’s not been a remedy like that for your loss. I do hope the wigs eventually make you feel the way you’d like to feel when you look in the mirror.
Hi Paula,
I also lost most of my hair after my first bout with COVID. Went from vibrant and thick to glad that anything was there at all.
Then I discovered an important nutrient, PQQ, that I was giving to my ailing geriatric husband for general health reasons. I'd been taking it as well. Some months after starting the PQQ, I noticed new hair growing especially along my husband's hair line. Not long afterward, my hairdresser confirmed, YES, you are growing new hair all over your head!
It's been more than two years now and I've gone from sparse to a full and vibrant head of hair. My eyebrows have even grown back in.
It takes more than one nutrient to grow hair. In my posts I include information about caring for mitochondrial health, along with links to peer reviewed research on each nutrient that I personally use. Mitochondria, are a target of the Sars-CoV2 virus and many of our Long Covid pathologies stem from mitochondrial dysfunction. PQQ specifically stimulates mitochondrial biogenesis, making new mitochondria and repairs mitochondrial damage.
My posts, like Amy's, are free. https://longcovidjourney2wellness.substack.com/p/tlc-for-mitochondria-updated
I'd love to know if you might have tried this.
As always, thanks for the shoutout. I too have been steadily increasing my limits and it’s so true the frustration of feeling good and wanting to be more like my old self but also not(?!?). “I thought I was happy living that life” hit hard in that regard. I just keep reminding myself that I’m building up to something even better but I’m not good with patience. I’m working on it! And I’m excited to check out your book rec. I love a good crime read.
I totally hear you about being impatient! I mean, there’s a reason some of us get these illnesses - we’re so wired for action and fast results, that we don’t realize how much the nervous system doesn’t love that. I truly believe the way I had been living set the stage for a longer term illness (not caused it, per se, but created a ripe environment).
It took me two full years of therapy with someone who had had ME/CFS herself to loosen my death grip on the way I was living life - and even the way I was trying to “achieve” recovery. So dysregulating!
The part about previously thinking you were living a happy life hit me hard too.
I thought I was happy. I thought I loved doing what I did.
And whilst parts were true, it was all a very repressed version of me.
I did not know that stifled my health nor that there was more to be lived, enjoyed.
Disability by chronic illness has been like some kind of initiation into that. Its own doorway, a portal.
Just one that hits you many times on the way through.🙃
Love your cat mama top!💕
Can relate to so much of this. The shame cycles. Been feeling my way through a few of those.
After a lifetime of disassociation through them, it’s been a massive cycle to break.
Also, the wanting to be seen. I want to be seen (at times) without wanting to say anything or anyone saying anything to me😆
And an insight that’s just come through…
Ableism is an important convo to be having. But I’ve noticed it works both ways.
That feeling of being too able, too well, to be here (talking about chronic illness/recovery etc). Well that’s ableism in reverse.
I’ll remind myself next time I’m thinking that 🙃
That’s such a great insight, Amber - the way ableism shows up through recovery. All of a sudden, we’re not sick enough to be here? Like we haven’t earned our stripes if we didn’t stay sick? Fortunately I think that’s a minority opinion. But I did make sure to get out of those toxic Facebook groups before anyone could bully me over having recovered.
Dear Amy,
So happy to read your post this morning. I've missed you!
I sincerely hope that other readers, especially those of us who, like you, following their Long COVID journey, feel that they are back to 95%, but not always. It's a reminder of our common journey, our humanity.
Thank you for sharing.
Thanks so much, Mardi! It’s been a bit wobbly trying to find the balance between showing up here and living a full life again. This post took me over four hours, and it’s hard to find that kind of time! But I do enjoy it.
I do hear from readers who are in various stages of recovery, as well as some who don’t feel they are yet but are just here for the shot of hope. I do wonder how many people’s bodies just needed a few years to approach homeostasis again after the immune and inflammatory storm.
Oh, and I just watched your puppy video this morning on YouTube! Are those all yours? I may have missed that update (pupdate? 🐶)
Also, If you want copy for your next post, please consider copying my text from comments where I discuss hair loss and COVID. The PQQ that I take is doing an amazing job and it is helping mitochondria all over the body. I can supply you with more info if it's wanted.
I can supply copious video and stills if you should want to share info about them.
YES! Our mama dog gave birth 6 weeks ago. Their grandsire is my service dog. He's 11+ years old, so I plan to keep one of these babies... likely Bow, the black male who is going to be a big tall dog, very suitable for my needs.
Not sure if it would float your boat, but having you feature a paragraph about them and how they are getting basic training or more, to also become service or emotional support dogs. They are getting loving treatment. All have been genetically tested and the results will be available to adopting families.
My dog site is vermontmeadowsfarm.com
Puppy pictures will soon be posted.
Before I used a walker regularly, I often encountered similar situations where people didn't understand why I couldn't go up stairs or had trouble getting off low surfaces. Because unless you saw my limp, I "looked" typical. No one could see my Swiss Cheese muscle cells 😂 You always have the absolute best GIFs in your stacks too.
Haha, thanks! 😊
My 3yo great is mobility disabled (from a post-viral condition) and I watch her scoot on her butt to get up and down stairs with so much wonder at her adaptation but also at how the world and its expectations haven’t gotten to her yet.
Thank you, Amy, you really nailed the feeling. I've been thinking about the liminal space a lot these days. Lots to celebrate, but lots of uncertainty still left. Thanks for sharing with us.
Thanks for reading, Doc. It’s kind of trippy, this space we’re in.