The first of eight neurologists I have seen told me that I had a "Benign Annoying Abnormality." Another said, "I can tell you don't have MS the way I can tell th😮at a cat is a cat and not a dog." My diease is Chronic Neurological Lyme, co-morbid with systemic mold toxicity, mitochondrial dysfunction, and many symptoms of MCAS. I have been progressively ill for thirty years. Thank you so much for this!
Ugh, so much ignorance out there, and from medical professionals who should know better. You're a champion for surviving chronic illness for so many years. I hope you get some improvement x
Acceptance isn't as much my problem as the demands on my time and attention from the world around me because most others fail completely to understand how vital it is that I be allowed to pace myself!! I love to walk. Right now, I can't take a walk, just a nice, leisurely, relaxed and comfortable walk of any distance, even a block is too much. I have not been able to do this for six months. I have no idea when/if I will be able to do this again, but today is today and tomorrow is tomorrow. Perhaps tomorrow will be the day. 🤞🍀🙏
Thank you so much!! I'm only a small channel, just starting out. But I'm gradually growing! I'm hoping more people will see my videos when my subscriber count goes up. My channel would grow faster if I could put out content more regularly, but unfortunately my health doesn't allow me to do as much as I'd like.
Thank you I was having a hard day when I found your channel. I needed to go out to buy compression stockings and decided to visit a mall I had not been in for a long time. I never actually got to walk around, I had lunch with my husband and spent way too much time in the bathroom. I am not able to do this now, but I will at some point. I am in a bit of a downward spiral at the moment, I am now in bed and will most lightly sleep away most of the night and tomorrow.I will check out your channel, you aree the first honest person I have heard speak on the subject. For a while I watched a channel about people who all seemed to recover 100% ! I stopped watching as it was deepening my depression. So thank you.
Ugh, that does sound like a hard day. Malls are so exhausting and overwhelming. On that note, I find it really helps to wear noise-cancelling earphones/earbuds, and tinted glasses. It reduces the sensory overload. (I have a short video on it if you're interested.) I'm sorry to hear you're in a downward spiral - for now. I hope you improve again soon x
Thank you for this video!! I needed it! I have scleroderma, and go from despair to denial. I feel like I’ll never again have a thoroughly clean home, or be able to run and play with my grandchildren. I miss them!
I would add as a coping mechanism for avoiding despair to focus attention on what we are able to do. Right now, I am able to stand. Right now I am able to hug someone I love. Right now I am able to look out my window and appreciate the beautiful speing day. Right now I am able to feed myself, or get dressed, or wash my dishes. Right now I am able to give advice to a friend so that she feels validated and supported in better caring for herself. We can't do everything but everything we can do matters because we matter!
Thank you Jill, very helpful, will listen when I need a reminder and to all your videos. Had CF since 27yrs old, 65 now. All you say is true. Unfortunately, got Covid and have been set back, so interesting to see the research being done on that.💖
Oh gosh, that's such a long time. You're a champion for surviving it this long. I'm sorry to hear covid has set you back. I've heard that covid (or other viruses) can cause ME/CFS to flare up, but as you say, more research is finally being done, so hopefully we'll get new insight and treatment options soon x
Great video! Thank you so much for these insights. Your take has really given me a boost. I've had Long Covid for just over two years now and watched a bunch of those videos with titles like 'How I completely recovered from ME/CFS through positive thinking' which were demoralising and frustrating because they felt like gaslighting, just like you said.
Thank you so much for sharing this. Perspective in the present moment is very important for staying in the right mindset to stay as motivated as possible. I wish i had shared more of my perspective when i was thinking clearly in better health. Ive spiraled pretty bad for over a year and it has crushed me mentally more than ever before when i was a teen going through even worse pain. It was so much easier to reflect on the reality of the situation when i was in the midst of severe illness. Having a year or two of pretty good health gave me so much joy and satisfaction for once. Even when feeling well I constantly reflected on my health to remind myself how far i had progressed even when ive been in severe pain. Having that time of feeling good and ability to function was amazing but crushing as it slowly faded into worse and worse daily pain again. I have a variety of conditions and my structural issues related to my spine and brain feel totally out of my control once again. Ive accepted that i cant do some things i used to over the years but its still extremely difficult for me to accept i may be in pain the rest of my life. Sorry for my essay comment, best of luck to you also with your health
Thanks for your comment. No need to apologise! I like the essay comments as much as the brief ones :) That sounds really tough. It's so intoxicating when you finally have a reprieve from the pain and fatigue. Life becomes so much richer! But it must be heartbreaking to have to go back to it after a period of relief. Let's hope this flare eases off again in the future. In the meantime, I hope that acceptance of the present moment can help keep the worst of the despair at bay. Sorry if you've heard this before, but have you tried PEA/palmitoylethanolamide? It's a natural painkiller and anti-inflammatory that's particularly good for neuropathic issues. It's not a cure, but it can reduce overall pain levels long term. If you're interested, I've got a short video about it. x
@@chronicjillness332 thank you for taking the time to reply. Ive not been able to accept my current situation nearly as well as i had when i was younger. Im struggling to see any sort of future for myself, i feel like my health conditions will hold me back from pursuing close to every career I have a passion for. I had always wanted my own family when i was younger and now im to the point that i struggle to care for myself. I dont see myself ever starting my own family and would hate to put the stress of illnesses on a partner or children. I feel very trapped and alone in my situation. I was able to make it through the holidays but have been struggling with thoughts of self-harm more than i ever have before. I have tried reaching out to friends and family but have no real emotional support. Ive always told myself that I will always be my biggest supporter but ive started to struggle bad caring for myself when my life is so draining. Thank you for the suggestion, I will look into that and had not heard of it before.
The feeling you experience during a crash or flare-up from chronic fatigue syndrome (CFS) is like a profound moment of emotional surrender, where there's a sense of despair or hopelessness, feeling as though life is temporarily "over" or that nothing has meaning. In psychology, this might align with concepts like existential surrender, emotional burnout, or despair fatigue, though these are general terms rather than specific to CFS. However, this type of temporary emotional collapse is uniquely termed crash surrender or flare-induced surrender in the context of CFS. It's a moment where the overwhelming fatigue and cognitive fog make it seem as though long-term goals, hobbies, and even meaning itself are unattainable, and there’s a need to let go, similar to the sentiment "You just have to let it all go." I spent three years in bed before I started to improve. My favourite helper is my fitness watch which has been an enormous help. I makes me get up and take some steps... like walk to the front door and back, helping undo the muscla atrophy that has occurred laying in bed all these years. I was severe and now am 'moderate'. My advice, never give up... it may take four years, it may take more, but you will improve to some degree. Never give up. Sending out love and good feelings from a fellow survivor.
Thanks for your comment. I've never heard of the idea of "crash surrender" before, but it makes sense. During a bad crash there's nothing you can really do, except surrender to it and endure until it passes. I'm glad your fitness watch is helping and I hope you continue to improve over time x
If something is on my mind and upsetting me, I can get a bit distressed, especially when insomnia is bad. But I wouldn't say it's a panic attack. My heart sometimes races but that might be due to my other medical issues.
The first of eight neurologists I have seen told me that I had a "Benign Annoying Abnormality." Another said, "I can tell you don't have MS the way I can tell th😮at a cat is a cat and not a dog." My diease is Chronic Neurological Lyme, co-morbid with systemic mold toxicity, mitochondrial dysfunction, and many symptoms of MCAS. I have been progressively ill for thirty years. Thank you so much for this!
Ugh, so much ignorance out there, and from medical professionals who should know better. You're a champion for surviving chronic illness for so many years. I hope you get some improvement x
Acceptance isn't as much my problem as the demands on my time and attention from the world around me because most others fail completely to understand how vital it is that I be allowed to pace myself!!
I love to walk. Right now, I can't take a walk, just a nice, leisurely, relaxed and comfortable walk of any distance, even a block is too much. I have not been able to do this for six months. I have no idea when/if I will be able to do this again, but today is today and tomorrow is tomorrow. Perhaps tomorrow will be the day. 🤞🍀🙏
Why does this video have so few views? It's amazing and so valuable information. More people need to hear this. Thank you.
Thank you so much!! I'm only a small channel, just starting out. But I'm gradually growing! I'm hoping more people will see my videos when my subscriber count goes up. My channel would grow faster if I could put out content more regularly, but unfortunately my health doesn't allow me to do as much as I'd like.
Agrée
Thank you I was having a hard day when I found your channel. I needed to go out to buy compression stockings and decided to visit a mall I had not been in for a long time. I never actually got to walk around, I had lunch with my husband and spent way too much time in the bathroom. I am not able to do this now, but I will at some point. I am in a bit of a downward spiral at the moment, I am now in bed and will most lightly sleep away most of the night and tomorrow.I will check out your channel, you aree the first honest person I have heard speak on the subject. For a while I watched a channel about people who all seemed to recover 100% ! I stopped watching as it was deepening my depression.
So thank you.
Ugh, that does sound like a hard day. Malls are so exhausting and overwhelming. On that note, I find it really helps to wear noise-cancelling earphones/earbuds, and tinted glasses. It reduces the sensory overload. (I have a short video on it if you're interested.)
I'm sorry to hear you're in a downward spiral - for now. I hope you improve again soon x
I switch between both and double the despair - "I can only be up and around for 15 minutes max at a time, right now." ❤
Thank you for a positive, practical and realistic representation of MECFS.
Thank you for this video!! I needed it! I have scleroderma, and go from despair to denial. I feel like I’ll never again have a thoroughly clean home, or be able to run and play with my grandchildren. I miss them!
Ugh, scleroderma sounds awful 😢
I'm glad the video helped though. Try not to say never!
I had a friend with Scleroderma. That's a ROUGH one. Sorry you have to cope with that. Deep Breaths And Baby Steps is my mantra.
Scleroderma lady here too 🙋♀️
I feel so grateful the yt algorithm recommended your channel✨ you’re both informative (to the point) and compassionate. Subscribed.
Thank you so much! I hope my content can help x
I would add as a coping mechanism for avoiding despair to focus attention on what we are able to do. Right now, I am able to stand. Right now I am able to hug someone I love. Right now I am able to look out my window and appreciate the beautiful speing day. Right now I am able to feed myself, or get dressed, or wash my dishes. Right now I am able to give advice to a friend so that she feels validated and supported in better caring for herself. We can't do everything but everything we can do matters because we matter!
That's a great way of looking at it!
Thank you Jill, very helpful, will listen when I need a reminder and to all your videos. Had CF since 27yrs old, 65 now. All you say is true. Unfortunately, got Covid and have been set back, so interesting to see the research being done on that.💖
Oh gosh, that's such a long time. You're a champion for surviving it this long. I'm sorry to hear covid has set you back. I've heard that covid (or other viruses) can cause ME/CFS to flare up, but as you say, more research is finally being done, so hopefully we'll get new insight and treatment options soon x
Great video! Thank you so much for these insights. Your take has really given me a boost. I've had Long Covid for just over two years now and watched a bunch of those videos with titles like 'How I completely recovered from ME/CFS through positive thinking' which were demoralising and frustrating because they felt like gaslighting, just like you said.
Thank you, so much for sharing your grace and journey. And the toxic mentality from the new age community. So empowering to hear.
Thank you so much for sharing this. Perspective in the present moment is very important for staying in the right mindset to stay as motivated as possible. I wish i had shared more of my perspective when i was thinking clearly in better health. Ive spiraled pretty bad for over a year and it has crushed me mentally more than ever before when i was a teen going through even worse pain. It was so much easier to reflect on the reality of the situation when i was in the midst of severe illness. Having a year or two of pretty good health gave me so much joy and satisfaction for once. Even when feeling well I constantly reflected on my health to remind myself how far i had progressed even when ive been in severe pain.
Having that time of feeling good and ability to function was amazing but crushing as it slowly faded into worse and worse daily pain again. I have a variety of conditions and my structural issues related to my spine and brain feel totally out of my control once again. Ive accepted that i cant do some things i used to over the years but its still extremely difficult for me to accept i may be in pain the rest of my life.
Sorry for my essay comment, best of luck to you also with your health
Thanks for your comment. No need to apologise! I like the essay comments as much as the brief ones :)
That sounds really tough. It's so intoxicating when you finally have a reprieve from the pain and fatigue. Life becomes so much richer! But it must be heartbreaking to have to go back to it after a period of relief. Let's hope this flare eases off again in the future. In the meantime, I hope that acceptance of the present moment can help keep the worst of the despair at bay.
Sorry if you've heard this before, but have you tried PEA/palmitoylethanolamide? It's a natural painkiller and anti-inflammatory that's particularly good for neuropathic issues. It's not a cure, but it can reduce overall pain levels long term. If you're interested, I've got a short video about it. x
@@chronicjillness332 thank you for taking the time to reply. Ive not been able to accept my current situation nearly as well as i had when i was younger. Im struggling to see any sort of future for myself, i feel like my health conditions will hold me back from pursuing close to every career I have a passion for.
I had always wanted my own family when i was younger and now im to the point that i struggle to care for myself. I dont see myself ever starting my own family and would hate to put the stress of illnesses on a partner or children. I feel very trapped and alone in my situation.
I was able to make it through the holidays but have been struggling with thoughts of self-harm more than i ever have before. I have tried reaching out to friends and family but have no real emotional support. Ive always told myself that I will always be my biggest supporter but ive started to struggle bad caring for myself when my life is so draining.
Thank you for the suggestion, I will look into that and had not heard of it before.
The feeling you experience during a crash or flare-up from chronic fatigue syndrome (CFS) is like a profound moment of emotional surrender, where there's a sense of despair or hopelessness, feeling as though life is temporarily "over" or that nothing has meaning. In psychology, this might align with concepts like existential surrender, emotional burnout, or despair fatigue, though these are general terms rather than specific to CFS.
However, this type of temporary emotional collapse is uniquely termed crash surrender or flare-induced surrender in the context of CFS. It's a moment where the overwhelming fatigue and cognitive fog make it seem as though long-term goals, hobbies, and even meaning itself are unattainable, and there’s a need to let go, similar to the sentiment "You just have to let it all go." I spent three years in bed before I started to improve. My favourite helper is my fitness watch which has been an enormous help. I makes me get up and take some steps... like walk to the front door and back, helping undo the muscla atrophy that has occurred laying in bed all these years. I was severe and now am 'moderate'. My advice, never give up... it may take four years, it may take more, but you will improve to some degree. Never give up. Sending out love and good feelings from a fellow survivor.
Thanks for your comment. I've never heard of the idea of "crash surrender" before, but it makes sense. During a bad crash there's nothing you can really do, except surrender to it and endure until it passes.
I'm glad your fitness watch is helping and I hope you continue to improve over time x
Heart palpation symptoms?
Right. This is my biggest problem. My heart racing by just walking and sitting up.
Do u hv panic attack at night while sleeping
If something is on my mind and upsetting me, I can get a bit distressed, especially when insomnia is bad. But I wouldn't say it's a panic attack. My heart sometimes races but that might be due to my other medical issues.