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Hey, As you know I am in China. This summer I picked up the art card I purchased off you (Wind Pummel). I finally got to IKEA and remarkably they had the perfect frame of the perfect size. I made a little film here: th-cam.com/video/exca8svnKcs/w-d-xo.html - hope you are feeling better. Best wishes

I'm pretty sure that you have researched and consulted experts. They don't have much insight I'm afraid. My best friend has suffered (real sense of the word) with ME for many years. At the same time she also had bouts of excruciating migraines... knocks her out for 3 days at a time. They still occasionally crop up but not as bad. She has found great relief in a WFPB diet - I've just asked her what the WF stand for... the PB stands for plant based. I'll let you know when she responds. She has lost friends over the years who simply could not understand why she had to leave an event at no notice because she ran out of puff, as you put it. I could go on but I'm sure you have gathered extensive information yourself. I sincerely sympathise! And yes, I would like to see some art 😜 Don't overdo things; the friends who stay are true friends!

Your art courses sound like a good idea, or have you thought about making/selling Christmas cards ?.

Did you ever try one of the many CFS recovery programs?? Searching on TH-cam for cfs/me recovery stories you will find thousands of recovered people 🙏💪 The answers are out there, it’s not a mystery 🥰

Being able to pace yourself is critical. In jobs where you have to meet externally-imposed deadlines, you’re inevitably going to crash at some point. My own challenge is having insulin-dependent diabetes. No, at the age of 62, I am not prepared to compromise even though it means my income (from teaching art) is pitiful! Health is priceless and you can’t buy it back once it’s gone. Much love, Rebecca

Got to get to an Integrated Medicine Dr. I was given 5 years to live in 2015 from multiple incurable autoimmune and connective tissue diseases, most of which have been gone for 4 years now. Nothing that made me better came from a hospital and everything that nearly killed me did. I spent 20 years declining on pharmaceuticals. Careful, it’s harder to access sane medicine in Europe, but try to find it. The solutions to most of our health problems are available you will never find them in a hospital.

Love the editing! Godspeed.

great video Ben lots of positivity, good luck with all your endeavors.

Just want to say, from someone who experiences chronic fatigue syndrome as well, that it really was wonderful to hear someone put into words what I feel on a regular basis. I guess I felt like I was being affirmed. Thank you for your channel. I look forward to all of your videos.

Good luck with the treatment. Great video.

Teach on line get more subscribers

Great vlog, Benmo! Vic & Jo are lovely folks to have as friends. I think it's very helpful to have friends or a small community, especially when we are ailing. As a loner I find that a challenge but am trying to change. Also, fasting gently & watching the intake of nutrients especially when I am really struggling & want to eat junk. LOL Lymph. work is so important. Keep up the work in all areas. Bless you & thank you so much for sharing your journey. I keep learning bits that I really ought to know by my ripe old age. Ha! Cheering you on from NC, usa! Q

There is an occupation of Art Therapy: helping people get freedom from stresses and bad experiences through creativeness. As much as some people try to dis the value of art/creativity, it is essential to a fulfilled life. If more people discovered and explored creative endeavors I truly feel there would be less destructive behaviors in the world.

I relate to this so much as an artist who has suffered with a number of chronic illnesses for over 30 years. That annoying inability to plan for things because you never know if you'll be well enough come the day of the event. I've dragged myself through events many times on pure adrenaline and then crashed so badly for weeks as I try to recover. I gave up putting those pressures on myself and I've accepted that I just can't do them. After 13 years of running a quite physical craft business, I've recently had Covid to deal with which has absolutely floored me and sapped every bit of the tiny amount of energy I had before, leaving me hardly able to walk upstairs. This has forced me to give up my craft business and focus purely on my art and design now because at least I can do this sitting down. Selling my art is the tricky bit because as you say, with selling comes a bucket full of stress and that's a recipe for disaster. I'm a new subscriber (followed via Holly) and I look forward to following your journey. The treatment you're trying sounds interesting. I've noticed personally that if I do anything strenuous with my upper body, particularly my shoulders, I suffer with fatigue and digestive distress for a week or so afterwards. I think as one of your other commenters has mentioned, the key is to do the tough part at the beginning and battle your way through the fallout and then maintain it, keeping that lymphatic fluid moving. I did read that trampolining is one of the best ways to move the lymphatic system....not sure I'm up for that at 50 though!! Best of luck!!!

I'm picking up your comments on your new treatment plan for lymphatic drainage. I also suffer ME/CFS and I have self discovered that the sedentary nature of this illness can discourage the lymph system from working properly. It's one of the reasons I try to walk most days, even if it's only a few hundred metres. Anything that gets the lymph moving better, that includes osteopathy, massage, dry needling, walking, stretching, yoga, etc. can make me tired with PEM for days, even a week or two. But if I stick at doing it regularly, it does get better. Just don't over do it, give yourself rest to recover in between!

Thanks for sharing your observations on what you can do that doesn't cause extra stress and helps you stay as well as possible. All the best with your programme of treatment.

Hey, just dropping a quick comment to say I too have CFS/ME and it's taken me 10 years to get to the point where I've balanced life so that I can make the most of being a husband, dad and artist. Please don't ever feel the need to conform to other people's view of what you should be, just be who you need to be every day. Thank you for sharing how you feel, and if you ever need to chat with someone in a similar boat, please do get in touch.

Felt like I d written the script for you there...although I wouldn't have written anything, for all those reasons you mentioned.

Thanks to everyone for their really warm, supportive responses. You might not be surprised to learn that this was quite a hard video to make, and even harder to post, so I'm very grateful for all the solidarity and kindness here. Forgive me for not responding to each of your thoughtful comments individually - I'm pacing myself! My experience of CFS is that it's very isolating by it's very nature, so it's really validating to find so much fellow feeling. Thank you.

Dear Wags, Chronic Fatigue is knowing that you used to be able to chef for 12 hours and day, 5 to 7 days a week and currently only being able to work 5 hours a day, 2 days a week, with a day in bed the day after your 5 hour shift, and light home duties the day after that. Why would we choose bed life when we could enjoy a full time employment and the income that goes with that? Just push through? Thanks I’ll try that… instead of being “just tired”, I’ll stop eating for days and barely hydrate. Then we can add gi issues to the cf. Or, hear me out, we could be more ready to share our stories of trying to participate in a productive society despite our cf.

When you don’t have the best health, it’s a loss, it’s a bereavement. You’re allowed to grieve. Thank you for speaking so courageously, take care, love yourself.

It was profoundly validating for me to get genetic testing. To see illness etched into your actual DNA... to see the symptom be literally "extreme tiredness".... to see that it wasn't all in your head despite it not being the typical experience for everyone... It changed my relationship with myself. I cannot recommend it enough!

Oh no, now there are some comments recommending CFS Health to you, so it looks like marketing spam 🙈. But it's not. It's because I posted your video in the CFS Health program Facebook group. I wanted to share it because I really resonated with the content. Others in the group also found it very touching and commented on your video. This is how the many recommendations of this program come about. I just wanted to let you know that 😅.

It’s a horrible thing for anyone to have, and like you said so very hard to explain what it’s like to others who have no idea. I also suffer with fibromyalgia, but have joined a group for people like us. CFS by Toby Morrison, he seems to have very good results with helping to cure people. It takes time and commitment but might be worth you taking a look. Much admiration for your strength putting it out there, sending much strength your way😊

Thanks so much for making this sincere and honest video. I've been dealing with cfs and chronic Lyme for over 40 years and really relate to so much of what you're saying.

Thank you so much for this video! You´re very strong and courageous to put your story out there. I try to be more open and honest about this, too, coming to terms with the feelings of shame and guilt around it is a massive part of it. I am struggling with Longcovid/ME/CFS for 2,5 years now. I am 34. Your account and your thoughts around this are so relatable to me. Especially your last point about moving away from an idealized version of "wellness" and health, I try to rather think of myself as "well enough" (even though I still want to progress in my recovery; we have a saying in the recovery program I am attending which is "acceptance is not resignation", so it is vital to accept where you´re at in order to take appropriate steps forward but it does not mean that you have to be "stuck" with your symptoms and limitations forever). But until then: My recovery is going to take as long as it takes and I am going to cherish my body and enjoy my life anyway as best as I can. Again, thanks so much and all the best to you!

Well said and it is so important that you have put this out there. It's clear from the comments you have a community of like-minded followers and as someone with whom your words resonated so perfectly, I sincerely hope you continue to use your voice. I actually found your actions spoke as loudly as your words; I'd suggest they'd be even stronger if showed letting the emotions out. It happens, our nervous system reacts and we show emotion, it's not a weakness, it's a strength, it's your body speaking and we need to listen to our bodies. On the issue of our healthcare provision... frankly it is a disgrace that we can't talk about these conditions and that we have been ignored for so long. For me, our psychological needs are part of our health and I feel it is negligent that our Health Services fail to support us. We need to feel - We belong - Our life has purpose and values - People see us and value us - We have a future that makes sense Do you feel these things? Not if you feel isolated, unseen and undervalued. Your concluding words are powerful and I believe indicate a will and desire to be better. You are ensuring you have purpose and you have a future that makes sense and in my understanding these are essential to being healthy. Well done. I'm with you and I want to raise awareness of CFS, when I have capacity. I suggest we need to support and help each other, so I totally endorse what you're doing on this platform. I found a community that supports me; are you aware of CFS Health? Check out facebook.com/groups/cfshealthrecoveryhub/?ref=share

I have long covid and everything you said makes complete sense to me, literally brought me to tears because I can relate so well. Thank you for sharing, it's a reminder that we're not alone. Prayers. P.S. I have trouble describing my symptoms but the best analagy to describe it for me is like I'm trapped in my own body, not myself, like a zombie. 😕

I believe these types of health issues are going to be more and more common. I believe our environment has become quite toxic. Our air, water, food are full of stuff , chemical, electrical etc. that our bodies never encountered throughout our evolution. Our society too has prioritized production, competition and acquisition over cooperation, caring and community. Everyone i know is dealing with "something" healthwise and struggling to navigate a broken "healthcare" system. I applaud you for keeping on keeping on and talking about this aspect of your life will add your voice to those trying to get these issues the attention they deserve. PS. I love your paintings 😊

I found you a while ago and have loved your videos ever since. They resonate with me very much both artistically and illness wise. I also have a vision of recovering from Longcovid/CFS and that is strongly related to my creativity. That's why I'm glad to have found someone who follows a similar artistic path and has the courage to authentically show his sometimes bumpy path. Even though there doesn't seem to be a specific language for CFS, I think you explained very well and found good words for what it can feel like to have CFS. You seem like such a lovely, authentic guy. Please don't put pressure on yourself. Take your path in appropriate small steps. I believe you will go far. If you haven't already, please check out the CFS Health TH-cam channel. I feel like you fit the mindset there perfectly. There is a nice coaching program that unfortunately is not financially effortable for everyone. But there is also a lot of good content available for free. I'll stay here and watch you grow. It will also be very inspiring for my own journey. Lots of encouragement and wishes from Germany.

I just wanted to thank you for this video. You managed to articulate beautifully a lot of the experiences of those of us living with CFS, and it meant an awful lot to hear you speak with such bravery, honesty and compassion, both towards yourself and others.

I’m an artist with fibro and I hear you, I’m glad to listen and follow your journey and I understand the emotions that surround a chronic invisible illness. I wrote a longish comment earlier but it disappeared as I was typing. Know that there are lots of us here that understand what you go through x

though i am not sure if what i suffer from is specifically ME or long covid, it is definitely adjacent, and growing up my mother had something very similar. you, and this channel, are an incredible voice of reason and idk, confirmation that we're not crazy? its good to see an honest representation of these illnesses. i mean this sincerely, this is one of my favourite channels - i love seeing you succeed, how you manage to get things done despite your illness, and in general your perspective and attitude towards these things. sorry, very scatterbrained. keep it up benmo! :)

Thank you from the bottom of my heart for putting into words everything that I feel deep in my heart. This is a dreadful condition to live with and not easily understood by others. Your video brought me comfort today and I hope it didn’t cost you too much payback to make it. You are appreciated more than you will ever know.

Probably because ME/CFS is not even medically defined, can't be diagnosed and can't be treated. These are a set of symptoms that would need further digging. Probably by a therapist, you burned out on something.

Hi Ben. I have an autoimmune condition that for many years used to not be noticeable so I understand what it’s like to have an invisible impairment. Having to explain or share more than you’d want to just so people ‘get’ why you need support or a rest or more time or whatever, is a lot to deal with. Both back then & now that my condition is visible (I’m a wheelchair user) I experience fatigue. It’s completely different from feeling tired. It’s like every cell is shutting down & there’s no battery left. I can’t just push through either. Only a sleep will recharge me. Thanks for sharing about your condition in combination with being an artist. Art & life commitments take up a lot of energy & sometimes we have to choose between them instead of doing it all.

I have ME and very word you said made me feel seen.

what about that feeling that actually, I am just a “work-dodging hypochondriac” Even my doctor says ‘but you’re improving”… but in some ways I want to scream but I’m not actually “getting better”. There’s good days and bad days and no knowing what you’ll get at any given day. That’s not getting better, it’s just existing. The thing I find hardest about my chronic illness that it’s “just not that bad”. I mean it’s bad enough that I can’t function in a normal societal setting, but not so bad that I’m in need of disability services. Having my kind of chronic illness is nothing like having multiple sclerosis or cystic fibrosis or cancer or anything that people readily understand. I truly believe that those people deserve adequate medical and physical care but sometimes in the process of wishing that medical care on them, I Forget that I need supports as well. I don’t keep up with friendships because it takes too much energy. More energy than my chronic illness will allow, and more emotional energy than I have to rehash that I’m not ok, I’m not well and not better. Which makes my situation worse as I’m socially isolating myself. Thanks for sharing.

I also have CFS, and after a LOT of figuring out I have managed to find a balance of "activity" that works for me, I hope you are able to find yours. One thing that made a huge difference for me was scheduling in a rest day or 2 after a busy time and sticking to it even if I thought I felt ok. It really reduced those flare ups where I used to just crash completely for days. You don't owe anyone any explanations but as a fellow sufferer I appreciate you sharing your story, as you say, solidarity helps 😊

👉🏻🫂👈🏻 🙌🏻💪🏻😌

Thank you Benmo,

Thank you for being so honest and vulnerable. I hear every word you say and walk with you through it. I, too, have this awful illness, and I used to be an artist but unfortunately no longer have the energy to create, though my hope is always there that it returns. Please keep talking about it and advocate for those of us who can't. We are grateful, and we see and hear you.

❤❤❤❤

I love your painting: A thousand tiny mistakes. The tree, its so mesmerizing, and the warm colours to contrast it, more than perfect. I love it so so much.

Well done, I have found that only I know what’s going on in my body. I now live accordingly. You will find you are right about yourself. Many happy days to you and all watching

I think all of us completely understand. Those of us with ME/CFS know it’s hard to talk about because others dont get it at all. I know everything you’ve said I love struggled with myself as I’m sure we all have. But as others have said, there are no apologies needed. We get it, we love you for you.

I've have CFS for years... it varies in severity. I've learnt to manage it over the years, which means saying no a lot of the time ... People who've not experienced it don't really understand... it's an invisible illness, but remember you are not alone... you can only do what you can...

Long-covid changed my life and so I am standing in solidarity with you on that front, but right now it is another hidden health-related journey that is making me feel overwhelmed and alone and sad and your solidarity video has helped that bit of me more than I could say right now.

As someone also with M.E I really appreciated your honesty. Thank you 🍀 The more people hear our voices the more help arrives. Especially for those of us that are severe & unable to. You give them a voice. 🌱

i am with you on this strange unpredictable journey of CfS (and artist)... I am a functioning endlessly tired human .. flying to different cities/countries for the next bed to lie down on...just arrived today in a new place and was laying here and said "i am sooo tired" then i said " i am always soooo tired"... i like when you said you will still love and have a fulfilling life. i need to let love come into my life again. i just didn't want anyone from many directions to have front row seats for the moment by moment struggle that has not got a name that folks sympathize with... still i find so much peace over time and almost no-one knows i struggle by the minute. so you being public with this is admirable and truly helpful at least is it is to me. thank you*