What 19 Years of Living with Pain Taught Me
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- Опубліковано 29 вер 2024
- My Twitter: where you can find my Twitter diary on living with Myalgic Encephalomyelitis is up to 160 episodes - / vladvexler
Vlad Vexler main channel - / vladvexler
Vlad Vexler Chat - / @vladvexlerchat
MEpedia entry on ME - me-pedia.org/w...
Every once in awhile, life offers you an unexpected bit of comfort. When I subscribed to your channel, I had no idea about your physical health and simply felt attracted to your perspectives and analysis on Russia and western philosophy.
None the less, after learning about your health challenges fairly early on in my discovery of your channel, I became even more intrigued. Pardon me, but today's video inspired me to share, something I very seldom do.
By age 29 I was diagnosed with rheumatoid arthritis, (which I had symptoms of from age 14.) I continued jumping out of helicopters as a trauma transport RN. By age 36 fibromyalgia was added to my repertoire of diagnoses and hopefully finally, after suffering every imaginable complication following colon cancer surgery, (skipping over that dx and massive trial) before age 40 and fourteen years later, I was informed that I have had M.S. for 20-25+ years. To be honest, in some ways, the diagnosis brought me comfort, by acknowledging that I was not insane, yet it also has significantly stifled my, "I can conquer anything," perspective on life. The pain and the mind/muscle frustration is challenging, but I too refuse to wallow in my physical (incredibly frustrating) challenges and simply choose to see/accept what each day offers me. I still have my brain! 😉👍
Thanks again for sharing!😊
You've really gone through it. Hope you are AWAP (as well as possible).
I, too, have been dealing with my own mixed bag. Though reactions to my conditions when I was young were less than helpful, I'm learning, like both of you, that this is just part of life. That idea of taking things as they come has been a challenge for me as well, but age and being a parent have helped mellow my expectations.
Reading about your experiences and how you dealt with them is a comfort and boost to me, knowing that others out there understand. Thank you!✌️😎🍀
While I don't have ME I do have a condition that is diagnosed only by exclusion, as like ME, there is no definitive "test" for it. My rheumatologist's "best guess" is it is palindromic rheumatism. Episodes of joint pain, autoimmune in origin. Mine is not typical, one episode rolling into the next, so it's constant rather than spasmodic flairs, and differs only by location and intensity.
I like how you call it dancing, because that is exactly how it is. 35 years of it has taught me to treat it as background noise. It's always there but you don't consciously think about it unless or until it increases in intensity and you have to find another way of doing something, or do something else entirely that doesn't involve movements that are particularly painful that day.
My philosophy is that you can choose to be a victim and waste your life giving into it, or you can choose to be a survivor and experience the many other positive things life has to offer.
Talking about pain can ease the tension sometimes but don't let pain make you a victim or the pain will control your life.
I’m a very bad dancer. It’s even painful to watch me dance. But continuing to dance is of the utmost importance. Luvya, Vlad.
God bless you Vlad and admire your strength and determination to help others that might be through pain. Thanks for sharing very intimate thoughts with your viewers while transmitting hope and serenity.
Look, I am glad you aren’t ready to Push the ejection method yet. I am there. I have severe RA and a horrible spine. I just had my 5th spinal fusion a month ago. My surgeon prescribed lortabs for one week after surgery. The USA has been in an “opioid epidemic” for years. I haven’t taken pain medication for at least 6 years but can tell you I can no longer cope. When I am finished clearing out what I believe my son won’t want or need, I will be gone. On my terms and it’s in the immediate future. I know how and where I will do it. There is no longer compassion for those of us in 24 hour pain, in the USA at least it is looked down on to be in pain, so you hide it, smile and carry on. I’m done with it though. Hope to someday meet you on the other side.
I've danced with this devil for 25 years. I wish you health.
I've lived with daily pain since I was 16, had a motorcycle incident and survived, but I wake every morning with the pain where my arm used to be, every morning, I'm reminded how lucky I am
Mindfulness practice for me is the most beneficial practice. Encompasses much of what Vlad said.
This should get way more attention. Making sense of the world is important, but making sense of one's own condition is crucial. As someone who isn't currently confronted with physical pain, I take this with me as emotional stock for when (not if) life throws stuff like that at me.
Vlad is amazing person
Living through the whole catastrophe, JKZ dixit.
Much love.
You are taking a very stoic approach.
Love it ❤❤❤!
Facing and accepting reality as it is instead of pursuing an illusion that might never come, and then, beeing frustrated by it.
I admire you so much.
Very wise words. All the best to you.
Hugs to you. Those insights will help me. And I’m off to watch this again.
Thank you Vlad. This is useful to keep in mind with my depression and anxiety.
I love your videos Vlad, you're a wise and beautiful soul. Keep them coming 💛
Thank you
Acceptance is the big thing with pain, psychologically, and how well one can do that varies a great deal because pain varies in severity a great deal depending on the illness and person and because many of us in pain get very little support.
The medical community tends to view long-term pain as an inconvenience at best - to members and institutions of the medical community. Physicians are poorly trained in pain management and support of people in pain, if the are trained at all. For the last twenty years, medical schools have been progressively unlearning all the research of the prior two decades, taking in newly invented nondiagnoses like “opioid use syndrome” (invented by the “rehabilitation” industry) and disinforming students in medicine. The end product is a medical community that can do nothing for whole classes of patients, and that thinks nothing - at least in the U.S. and Canada - of turning away people in visceral pain with no help at all after putting these people through all the billable tests and crazy trials they can, knowing these thing stand little to no chance of helping. On top of this, people without live-in family support often face the natural loss of contact with friends and acquaintances who lack the social skills to face a sick person more than once or twice. People in pain are worse than sick people, because we can look scary or ugly when the pain worsens. This, among other things, tends to lead to people choosing to stay away. We tend, in turn, to want to spare those people awkwardness by not seeking contact.
For people with reasonable support systems who have reliable emotional strength to call upon and who can speak up for ourselves to explain what we need, the mechanics of the physical coping mechanisms and learning what the best methods for managing our pain and our minds are all learnable. They must be learned if life is to continue, but they only go so far, especially with the medical community hamstringing itself for reasons that have nothing to do with science. What is hard, particularly for the majority of people in pain without brilliant spouses or caretakers and without unnatural pain tolerance or exceptional equanimity or flexible employment, etc., is the sense that handling all the pain and the loss cannot be matched by the slightest sense of real compassion coming from the people we pay to help us.
Middle-aged and older people in pain are killing themselves in droves in the United States in a sense of sheer hopelessness, having watched for years as politicians and public-health officials, regulators, law enforcement, doctors, and activists turn the medical nonsystem inside out to stop opioid use, reasons be damned, and to find money to send everyone on those drugs into detox programs people do not want and that do not work. We do not even have a reliable system for knowing who died of what in this country without a special program in place (as we had for a time with Covid) to find out. But we’ll sue pharmaceutical companies to find money to support this enterprise. All those people in pain killing themselves have just lost hope - doctors are afraid to manage pain freely, friends have gone, jobs are lost, loneliness sets in, then depression. On the way down to that paralysis turns out to be the moment of most danger: finding some reason to go on in the world when the world has palpably, demonstrably abandoned you is not an obvious problem to solve.
There is a lot to consider, the worse the pain is and the more difficult the circumstances, and I have had an enormous amount to face but I have not had to face it alone. More, I have not had to face the illnesses with some of the personal challenges others I know (and, in a couple of cases, to whom I have been related) have been unable to overcome. For me, my pain has gone beyond the dancing stage. I stay in the moment, turning my life into a meditation, and I find beauty in every aspect of life I can, which is a challenge these days, but never an insurmountable one. Finding kindness for myself, given what I demand of myself but no one else, has been a hurdle on which I still trip. This is a side of the acceptance practice harder for formerly driven would-be superhumans, but one I have had to learn along with the patience, tolerance, and humility that came easier because I had more experience with those.
I am glad you are well enough to do these videos, because I can’t - and they need making. Clearly, they are bringing people comfort. Certainly it helps me to have this resource, as I expect the making of them helps you. Please continue.
Vlad you are a true inspiration . You have an incredibly strong mind and will. I love your whimsy as well as your wisdom.
I hope it gets better whatever it is
I’m living in a world where I thought I could endure. The pain has forced itself upon me. I know I’m alive but, I want to give, not be a pathetic charity case in the room. My energy has been sapped. I will continue to put a smile on it though. My offspring mean more to me than my pain. Ok, that’s my new song….
I had a look at your myalgic encephalomyelitis...if I was in your shoes I would try a 5 min cold shower in the morning for 30 days, I'm a big wuss when it comes to cold water but I just did it, 30 sec then eventually 5min... it has so many benefits like an overload of signal impulses to your brain which translate to wellness, positive mental attitude and mental clarity (just a few)... lots of videos on UA-cam definitely worth a try but don't stop till 30 days are up and you may make it a permanent habit 👍
Where does it hurt? What kind of pain is it?
I love the fact that you are utilizing your intellect and eloquence to verbalize your experiences living w/ a debilitating chronic illness. Much support and love and identification from the USA 🇺🇸, brother.
I’m 80 and hurting a lot more than I have during most of my life. When I broke my shoulder badly some years ago I had after a few weeks of recovery on pain killers that allowed me to rest deeply. The drug stopped working one night and the pain was bad enough so that sleep was out of the question. But I noticed something peculiar. The pain was really bad, but I simultaneously was experiencing heartfelt gratitude that I had not passed my entire life experiencing such pain. I understood this experience in terms of the Buddha’s teaching about the two darts of pain. The first dart is the physical pain that is an inevitable part of life and is not optional. The second dart is the suffering that can go with pain, but it is optional. So I accept my current condition as part of life and your dancing through the pain is a helpful way to live with it. Thank you.😅
Thank you Vlad. Little different for me. First I am in my 88th year. Everyone says you can expect illness and pain in old age, its normal. I say it is still pain. I have Rheumatoid Arthritis which is attacking and destroying my joints. It has already attacked my lungs and several other parts that people don’t realise are part of the disease. Like you, none of this shows as I stand in front of anyone except if they see my twisted fingers and hands. But what I am trying to get at is that I have never been used to not being able to walk, eat properly, look after myself. I was a physical training instructor and played sports all my life. Now I am trying to find ways to cope, not to give in to depression, another thing I have never known. I have to escape mentally. I have done this with my iPad and the internet. Finding people like you to listen to and other thinkers. I follow our UK and world politics. I got into Chinese dance and drama which set me of studying their history. I am a history buff. While I am lost and doing these things pain seems to be less. Except If I try to type something long like this, I can’t dictate as my husband is around all the time looking after me. He is not interested in the same things.
I have a friend with ME who is as bad as you. I think it is so good that you allow people to know how you feel. I am going to recommend you videos to her. It may help her but who knows, it may only reinforce her pain to hear of somebodies else’s. I don't know, I try to learn as much as I can about my problem and sometimes find solutions. I live in Devon UK. Thanks again. Very interested in Russia and Ukraine at this time.
I have ME and I'm grateful I just discovered Vlad. His comment sections are really helpful too because of people like you. Thank you.
Thank you both for your comments. It is so comforting and helpful to see that I'm not alone in dealing with these types of challenges and that others have insights on how to deal with these things life throws at us.
Vlad is awesome for all he does, as well as inspiring a community such as this.
Take care fellow travelers and dancers! ✌️😎🍀
It’s amazing you can create so much positivity in these videos ❤
I'm going through a rough patch, but nowhere near what you are, Vlad. Thanks for this video and the inspiration you provide everyone.
I am living through chronic pain as well. I have a disease that has damaged nerve endings throughout my entire body and as a result, I am living with pain that keeps me grounded pretty much most of my life. It is horrible, it is intense, and it has taken over my life. I have extremely high inner drive that, in the past, has pushed me to do some pretty extreme things in my life, such as running ultra marathons. I'm sure most can relate to how hard it can be to wake up at 4:30am on a very cold and dark morning, sometimes with sleet or snow mixed in as well. I did this every morning just run a quick 15 mile run before work. Anyway, that drive pushed me through the first 8 or so years of my condition but unfortunately, that drive is slowly starting to wear off. I spend most of every day sitting in a recliner chair in my bedroom and watching a ton of UA-cam videos. There is a plus side, I was given 3 years to live with pretty much a zero percent chance of surviving, and that was 8 yes ago.
I do agree with you that it is now a part of who we are and just like everything else that becomes a part of our life, we have to live with it, there is no other option and we must accept it.
What's the name of your illness if I may ask? I didn't push myself as hard as you but I feel like what you're describing.
I loved this so much. Dancing with it all, as life- « and in some dances you can get torn to shreds. » I understand what you are expressing. ❤️
I too received great benefit from this wisdom/perspective. I am physically well but adverse childhood experiences have left me with a subtle yet devastating and pervasive feeling of there being something wrong with me. I’ve wasted decades trying to figure it out. My world got smaller and smaller as I couldn’t - it’s not a problem to solve but rather a condition to be managed.
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Like any reading this I didn’t choose this for my life experience. It’s just the way my life is working out. I wasted too much time avoiding life because it’s always emotionally painful. It’s helpful for me to adopt the mindset of living with chronic physical pain: just accepting that engaging with life, with people will constantly set off alarms, will constantly trigger deep shame, that my emotional regulation feels constantly at risk.
.
But this is my life. Those feelings and triggers are what they are: constant companions I need to accept and to dance with.
@@CorePathway I hear ya.
@@CorePathway Thank you for sharing that. I share that experience, too, but couldn't describe how I was processing things. You described it in a way that fits. I understand pain, as I have some conditions that have been with me. So I was processing those experiences in the same way.
I always appreciate wisdom that gives me insight into myself or others. Thank you. 🍀
I have a nerve condition that makes it incredibly painful to talk, eat or drink. Fortunately it is manageable with medication but those have side effects that, frankly, make me feel like my brain dies not work.
I appreciate you uploading this video. It's so easy to get down and wonder "why". But that leads no where.
I will definitely incorporate that this pain is simply part of my life into my thoughts when I get frustrated.
Absolutely spot on. One of the best things that I’ve done to deal with this awful disease was to learn about pain management. You describe the process so well. I apply the principles of pain management to all of my symptoms, not just the pain. It helps to remove the anxiety, depression and “fight or flight” feeling, all of which are normal responses to pain, exhaustion, dizziness, nausea, etc, etc, and allows me to accept the symptoms without allowing them to own me. I still feel those symptoms, they’ll always be there, but I can detach from them to some degree. Thank you for your talks about ME, they always help.
It's important to talk about this and you do it very eloquently.
"Do the next thing" - don't think of everything you want to do. Do what you are doing now. When you are done, then just do the next thing you want to do.
I find it's less overwhelming to not think about things you may or may not get done. Live in the moment 😊💜
Yeah, you know you're life isn't so bad after all after listening to videos like this and realising that some people have a great deal more to cope with and seem to manage.
Very inspiring! I have been suffering from a kind of "non-localized headache" for seven years. This was from a brain stroke with some later complications, but I feel fine today. the only reason I feel this way, is the same kind of training and willful attitude that you talk about in your video. Mindfulness and acceptance (without giving in) of what you can't change is the key to be present in your own life and that of your family and friends. Illness be damned! Live your life to the fullest extent possible to you I say, and simply enjoy the one magnificent gift we have been granted in eternity: a single life.
Bless you, my friend, and hang in there for all of those little, important things, and remember: A stream feeds into a river, and a river feeds into an all encompassing ocean - the entirety that is our time in this place.
Vlad, oh how I felt your emotions as I also have had ME for 18 years. Your words brought tears of knowing and a smile of acceptance…I think! My dancing is most often a sign of rebellion against my body. I rejoice in the moments of intended freedom despite the crumbling of my body that occurs afterward. As long as I fight back, I live.
Your heart and mind are gifts to us all. Thank you. Diane
Yeah. This is real. This short clip in its way is one of the realest things I’ve ever seen of yours. Pain is the realest thing there is. It’s the only experience that reliably turns knowledge into understanding. If it doesn’t embitter us of course. This is your most inspiring quality Vlad. Your heroic work. Forgive me for saying this but it leaves your Ukraine work for dead, spiritually speaking
Thank you so much and I think we agree on how to understand pain!
Thanks for giving me language to explain what I have been doing for 60 years since a car accident at 19. Although I am convinced that what I experience is considerably milder than that experienced by a close friend with MS and with someone who has the condition you do, the metaphor of dance is spot on!
The deep and profound realisation that I am not this body, I am not this mind with it's thoughts and emotions is truly liberating. That doesn't mean that all these things are not experienced but that psychological suffering no longer takes hold in the same way. Essentially, there is no one here to suffer, as Vlad alludes to, this is simply what's happening right now and I neither want nor don't want any of it, it is irrelevant because I know who I really am.
I agree with you completely. The pain is part of life, and one has great moments , when one is so intellectually engaged, one forgets about the pain while this is happening. Alas, I cannot induce this ignoring of the reality of the situation , at will. Stay strong, as the pain is like a companion, and has hopefully made us much more accepting of reality, than fighting it. Live for the moment. Thank you, as I find your posts very interesting and have recommended you to others who think.
Thank you Vlad... you have harnessed at least one possible benefit from this bane of your health and that is wise and useful advice, well elucidated, to help us who are not as well-travelled as you in the mindset required to live with pain.
In short, you have used your pain to reduce to sum total pain in the world. Thank you mate.
40 years of pain and I am still here. I have learnt that you have to accept it and control it. Box it up and say to your self this too will pass. What I admire about you is that your intellect has not been damaged.
You're a bit of a life changer mate, in the sense that your views contribute to restructured thinking. The fact that it's hard for you to find the literal energy sometimes puts my struggles with depression and energy in to some degree of perspective. Well done, however I appreciate we are catching you at your good moments. I hope you have people there for the bad ones, too. I for one would not have the drive to do what you do.
I suffer from severe PAD and neuropathy in my feet and legs. The pain at times is excruciating. It’s like a “blooming pain” is my feet or lower legs are even brushed against by clothing or a strong breeze! Starts off as a slight tingling and slowly BLOOMS into the most excruciatingly sensation of fire and needles piercing every nanometer of your skin and muscles…. It’s hard to focus and breathe through the pain sometimes. I use deep breathing and transcendental meditation as coping mechanisms. The drugs don’t do anything really except cloud my head and make it harder to focus on breathing and clearing my mind.
This is a nice little video I'm sure many people will appreciate. I liked how you said it becomes part of your life, eventhough we didn't want that. It's so true. For me personally I delved deep into spiritual philosophy, which I might never have done otherwise. It's kind of been a blessing for me and still living with the pain of course , it's just part and parcel of my life here and now.
Hi Vlad, this is a really touching, if brief, conversation, I got a lot from it. I'd love to hear more along these lines in the future.
Congratulations on the channels' success, your work is nuanced and considered and I'm heartened to see your number of subscribers and views rocketing up.
Thank you Vlad. I was feeling poorly during the summer. I did manage to refurbish an old dresser that I started in July and finished in October. It took me over 3 months and I’m so damn proud of myself. 😊 I’ve been better for the past week or so, thanking a break with medication 💊 I guess. Please take care of yourself. It’s always wonderful to see you when you are ready. I don’t demand anything more from you than that dear, and I think your community has the same expectation. Stay well and take care of Vlad. 🙌🏼💙
To some extent I’ve learnt to dance as well, Vlad. I used to consider my condition “the enemy”, but it’s not. It’s part of me.
Thanks for this beautiful video. Sometimes I forget to dance, and those are the bad days. You’re inspiring me to dance, even though it might tear me to shreds.
I admire you for your drive. I’ve lived with mine since May 31, 1989. It makes life not worth living. Maybe if I had a life then I could fight it. But I don’t. The only relief I get is when I am asleep. I wish for death so that I will finally be out of pain. I’m only given acetaminophen.
I suffer from pain too, I can block it out in the day but night is a problem , I need to keep thinking or things and doing things , even something simple like stoking the cat helps !
I have chronic struggles with mental health and the phrase "you dance with ____" has been a profound lesson for me.
The way you have to walk has changed. You got to walk a different way. You keep walking. You inspire me.
Vlad, i got here via your Ukraine analysis videos. Although I’m not in any pain that’s unusual for my age and physical condition, my wife has suffered some bad things. 1, 2 and 3 sound like practical, achievable approaches. I’ve passed the link to her.
Same here Vlad. I've been to some dark rooms of hell with m.e.
Where you can't move, stand up, barely talk...all of it.
I'm traumatised by those times.
No one understands. I can't relate it to anyone
I find this the hardest thing to deal with. Being so alone and sometimes feeling close to death.
I've posted a few times on your pages.
I like your intelligence.
The dance thing I get.
I've done. Lot if breath work and meditation to work with the suffering.
A lot of resistance is the suffering.
But sometimes, as you know, it's n I describable chamber of helplessness, pain and fea.
Congratulations on keeping posting.
I'm trying to finish an album of music..it's become a running joke, people think im procrastinating.
Such ignorance.
I have to steal moment s as nd when I can
My life is not normal, or what I want
My self esteem ha been rocked to the core. Who am I? What is me? What is the illness? What can I expect for the future and how can I relate to other people.
Sometimes, I can't believe this has happened to me. I feel cursed and somehow pathetic.
But positively, there is a cleansing in being this ill. It removes hubris, helps you see life clearly ( when the brain fog lifts) helps you develop your soul and shadow self
It's been a shock to me how the world I thought was solid, the world of science and medicine specifically, is one of the most corrupt poisonous and cruel " industries" out there.
I have no illusions and now I can't trust anything said in any power structure.
I'm interested in how you see this was and power structures in general since having m.e.
And just people in general.
You just see how grasping , fearfulmand controlled people are.
Any thoughts?
"chronic fatigue syndrome" does not seem to accurately describe the perils the disease actually entails. sheesh. my mom is dealing with something similar after covid, but it is not affecting her as severely as what you described here, and I'm glad.
Thank you for this video, Vlad
Pleasure.
Thanks dear Vlad 💛 I absolutely agree. I deal with the pain and do active breath work through it in order to calm my stress, irritability and anxiety. I found my biggest challenge, 11 some years ago was the immense depression I went through dealing with the loss of my career and what I went to university for. It took a couple of difficult and painful years to push through because my mom died of a heart attack at a young age right at the beginning of my professional ending. I get through it all better emotionally for the most part but I have discovered since then that grieving the loss of my old life is certainly not linear. It is circular. Each time gets easier a bit. Much love to you for uploading so many videos to each of your channels. I truly look up to your motivation and information you supply to all of us. We are your family.
And I, look up to your comments. All the best to you!
God bless you Vlad! I’ve been struggling with Panic disorder so I can only imagine what you go through on a daily basis! I pray God’s strength for you and peace and healing.
I have pain causing ailments that come with aging. The idea of " dancing through" is new to me, and inspiring! The saying that man makes plans and God laughs has been too true. Thank you for the inspiration!
I wish I were this strong, I can't think anything except Make it STOP!
I'm so grateful you posted this. You did a much better job expressing what it's like to live with chronic pain (or any other chronic disorder) than I've been able to come up with. I live with pretty disabling nerve pain that affects a lot of areas of my life. It's been 5 years, but I've only recently started to emerge from the self-hatred, moralizing and "why-me"ing over it. This video came at a good time. I appreciate your insights. Thank you.
You are inspiring! I have CML and have to take chemo daily. I just got a knee replaced, but I am OUT of the wheelchair! I pray in silence daily, (today for 2 hours, I guess...) and do the One Day (hour, minute, second...) at a Time, too. To suffer IS to live. It is what we do with the suffering that defines us more than anything else. God Bless You!
I am wondering how, specifically, you experience the ME pain. My husband, who was infected for decades with Hep C, says that his "bones hurt", even years after taking the Hep C viral cure. (His own doctor cannot explain why his bones hurt.)
You will hate me for typing the next words. I will type them anyway. "What does not kill you makes you stronger". I honestly think you are the strongest person out there! I'm not happy you are suffering. I'm happy you are applying your will to live for a constructive mean, and not for self-pity. (Sorry for the difficult grammar. I'm a French Canadian. English is my second language and it's not perfect.)
Thank you for this video 💜I personally suffer from ankylosing Spondylitis, Fibro, osteoarthritis and a few other things. For me personally Im having trouble coping with the Emotional side of things. I honestly think I have PTSD to pain and suffering. Just when one recovers from one flair...... There always seems to be another in the horizon. Iv personally decided that when things get worse I will be looking into Dying With Dignity 💜Keep well everyone. Sending love from Toronto Canada 🇨🇦
Ive lived w extreme pain near 16years myself. it was a moment during temporary relief & recovery that i had FULL realization of what i live with daily. Tough stuff❤
I am endlessly grateful to you that you record these videos, especially while knowing your condition. I only discovered them a week ago, and I haven't yet watched many of the earlier ones, but your calm reasoning is contagious, and for me, it's something that has filled a certain intellectual void in my life. I quietly hope that these efforts of yours for a good cause can turn the course of the disease, is it possible? Much love to you from Luxembourg!
Until I had back surgery I was hunched over and in pain from a back injury I received in the military for ten years! Sometimes I couldn’t walk. It affected everything I did and the VA cut my disability in half instead of helping me. Finally got some good insurance found an excellent doctor through word of mouth, and almost immediately after my surgery I got up out of the hospital bed, stood up straight and walked down the hallway! No lie! But my 20’s were ruined from back trouble and the VA is a joke!
Out of admiration for your good work I'm compelled to offer gratuitous advice. A Clinical trial using Oxaloacetate has shown substantial results in reducing mental fatigue in cases of Long Covid and Myalgic Encephalomyelitis. If you not into supplements the substance is in Tumeric. Sorry to be annoying but at least I feel better trying haha.
If you want to get rid of it you could try something unorthodox, like looking at photo of Bruno Groening or the Reconnective Healing by Eric Pearl. Miracles can happen.
So familiar. I feel for you. I appreciate you. I wish I could take the weight from you.
That was one of the best explanation of thing I've heard.
One of the most difficult than it is explaining to people.
When they say just get up into something. If they can't see it
We just don't understand. They think I'm going to keep this
from my phone. 14ys of pain.Thank you
I feel you. Can’t help my tears streaming down my cheeks.
Lots of love, Grace 💛
(probably should rename myself to “platonic Grace” don’t want/need miss understandings(
I would take solace how your affliction is actually a mystery to the medical world, and therefore may be somehow conquerable. First of all the term Encephalomyelitis is bogus, being a disproven obsolete concept of the cause. The term Myalgic simply refers to location of some symptoms. So science has no answer of what is the essence of the problem thus has uncertainty how to treat. Effective treatment may be difficult to find, but may be easy once found! So I would explore out of the box treatments, which I have done successfully with other afflictions. I think you even more than I are smart enough to not dwell on flakey solutions from popular culture, but best to be a relentless experimenter.
Pain is exhausting. It demands your attention. Best wishes Vlad.
Sometimes I can dance with pain, but sometimes the chair isn't close enough to stop dancing. I've been dealing with pain in both hips and legs for about 20 years now, but I still have to go outside and trim trees and bushes and drag it all away uphill. It does make the chair just that much more welcoming. Unfortunately where I live I could throw a can of green beans out in the yard and have a canned green bean tree in a year or so.
Vlad - I think your sharing your journey living with ME is invaluable particularly for anyone living with chronic pain. As you well know chronic pain can be profoundly isolating and your efforts provide others with community. Thank you.
If you have not discovered her already, you might check out the work of Rachel Zoffness, M.S., PHD with the University of California-San Francisco School of Medicine. She writes on the biopsychosocial nature of pain and by understanding its nature one can work to improve management of it. Your approach seems to be in harmony with her work and efforts in this area.
Thanks for your comments, Vlad. Personally, part of my mind focussing on creating, or planning to create, acts as an ally against the pain, and I no longer see it as an enemy, and I also try not to dwell on where the pain is located at any one time. I do hope you swing into a better cycle very soon so that you can continue to give to others.
It sounds so familiar. I've been dealing with sarcoïdosis for over 7 years now. It mainly affects my joint, tendons and muscles, though my saliva glands can get inflamed, which is also painful. If I'm lucky, they keep doing their jobs. They don't always.
Sometimes the disease goes in remission for a while and there's still a chance it'll do so completely. In the form in which I have it, the symptoms can last for years even while in remission and so for the past 7 years, I've been painfree for maybe 2 months. Far worse than the pain for me, is the fatigue. I don't remember what it's like to feel fit.
All my life I've dealt with anxiety and fear. My oldest memories are of being afraid (of my father). I struggled with that for most of my life, and I've become accustomed to living with a certain level of discomfort. Pain was just another factor in that discomfort.
I've learned to accept them as a part of life, a part of me and I use breathing techniques to breathe my way through it, be it the fysical pain, anxiety or some other emotional distress (my Mum has dementia). I can just let it be, whatever it is sort of sits there and I am aware of it, but it does not rule and it does not ruin my day.
Take care, much love.
Good job keeping your spirits up. You're inspirational to me.
@@websurfer5772 Thank you.
My handling of pain (mainly emotional, but a few times also physical) is to just "let it be". Pain as such is not a problem, more like a sort of noise, but obviously the cause of the pain could be a problem. If I'm able to do something about that, great, but if not, letting the pain "fill up" my mind would only make it worse. It helps to understand why the pain is there, and then it just becomes a circumstance in my life. While I may not want it, there are also many other things which are not what I'd ideally want, and things I cannot change are not where my mind should spend much time.
Did not know you are in pain 😔 I hope it will end soon. Be well.
Roger this, completely understand. Lifetime sufferer as well. I understand your rationalization totally.
My heart goes out to you, Vlad. I have pain too, and these points that you make are so true, if we can just remember!
Great! There are many who would appreciate hearing this. I did.
TBI ABI myself , head pressure, pain and discomfort is a result of any sudden movement or physical actions as well as stressful emotional situations.
How we deal with these ailments, makes a lot of difference to our quality of life 😊
Thank you. Though I do not have ME some of what you say reminds me of somewhat of Viktor Frankl's ideas which I have found interesting.
Yes, he was in bed after 20. You are doing better than my Uncle. They thought it was Polio. But considered it was this other that you have.
My son has enclosing spondilitus. I don't know if it's related. I have CLL Leukemia. What do I think. It's very low hardly at all . But they say it has its own program. I have had this for 5 years. They say I could live my life and never develop Leukemia.
They talk in riddles. What do I say haaaa!!!!!! That's what I say. Why, because I feel I am different. I don't know if you are a believer in God ! And people might scoff. But look how long Steven Hawkins lived. Let see now I will pray twice a week for 2 months. And my prayer is with huge strength.
God where art though. Givith this man a wonderful life with strength that beats this demon in disguise. Touch Vlad with a strong sword made of Gold so that he can strengthen and show to us your almighty power. Give the strength to prove himself, Armen.
*IVE HAD A LOT OF PAIN IN MY LIFE* but never chronic pain until I got Long Covid in 2020 - after about 18 months the pain had started to really affect my mental health...
One day whilst walking up the stairs to the apartment block in deep misery I realised "You can be miserable and in pain, or you can be happy and in pain"
Fron that day I stopped all negative thoughts about the pain, and the paid subsided by about 60%
Very wise words vlad. I hope you are well
Thank you Vlad your stoicism and the analogies you use are inspirational. You bring great light into the world. I shall keep praying that you get more relief and more opportunity to do the things you love. Stephen
I’ve got psoriatic arthritis and I wish they’d put research into the equivalent of a non-addictive opioid. In my experience it’s the only painkiller that always works. Tylenol, ibuprofen, alleve? Useless over time. Luckily doctors and the medical community are VERY stoic about my pain. They can really take it!
I have such deep respect for you. It's not often someone makes me reflect on life and filosofy the way you do. Your way of expressing yourself just resonates with me.
My deepest respect, from sweden.
Such wise and infinitely graceful words. Thank you! ❤️
A friend has chronic pain. Her doctor finally put a 'box" under her skin, which can be filled with morphine. He adjusts the dosage by a radio control (!) he fills it with a hypodermic.
Another friend has severe pain, but she's allergic to all morphine derived medication! Just has to live with it. Makes her edgy.
Self -actualization's infinite paths evolve continually in random and experimental order.
Reading too quickly, I thought I saw 'What 19 years of living with Putin taught me' but got something else interesting instead.
Hi Vlad,
thank you.
Give sorrow word's the grief that does not speak knits up o-er wrought heart and bids it break ( William Shakespeare)
Attitude is everything. Do what you love. It's healing. Love you, vlad
We are with you Vlad... empathy,care & admiration - Rozana & Carl 🦘🇦🇺