Hi, while I know this video itself is 6 years old; it's brand new for me today. I really appreciate how you've described the symptoms. I am dealing with these now and repeatedly struggle to find the language...for myself and others.
Yeah I cannot do anything at the moment, Had a relapse. House bound and bedridden 23 hours a day. Hoping I will improve. But yeah, Before I could have a hot chocolate in a Wheelchair at the cafe wearing ear plugs, cause I can’t take the noise. But the Same things would happens to me, My brain and body deteriorate, become dysfunctional can’t see or use by mind, I am ending in paralysis. Bed for days weeks every symptom so severe. 1 or 2 hours I May get to speak with people one day in a week if possible, People are draining for me. Relapse can be weeks or months. I do hope with this relapse I can get back to the level I was, because sometime it can make you deteriorate more permanently.
Thank you for sharing! I call it bone tired, I get stiff in the bed and can't move from pain from head to toe. People like you validate the reality of ME/CFS. Thank you from North Myrtle Beach, South Carolina, USA 😊🤗
Oh my God, you made me laugh so much listening to you. Going to have a lie down in a quiet dark room... trying to be coherent. The worst with this sh*tty disease is trying to convince your family you are not losing your marbles! I have had it for 13 years and still get an episode out the blue. Be kind to yourself and dont thi k you are being selfish. Love to all you CFS warriors out there.
Your mixed up repeating yourself, second guessing, correcting your description, rambling, embarrassed apologetic, searching analysis is spot on. I can never stop myself. You must be exhausted! Great illustration!
I have used the same analogy to describe my friends and family. I'm having a tough time at the moment and really having to pace. The fatigue just hits me and I have to lay down. I write anything in my diary and look at them as achievements. Changed a double bed today. Defiantly high energy, but nothing nicer than fresh sheets! Great video. Thank you. X
I don't have CFS but I do have POTS/EDS and this was supremely helpful. It's amazing how many similarities ALL of us spoonies have. It was helpful to have so many "oh my god...me too" moments in this.
Thank you for bringing this misunderstood condition to the forefront. I have fibromyalgia and me/cfs. I was diagnosed 12mths ago but suffered for yrs. I also have vestibular migraines and have no balance on my right side. You are me in male form. Im struggling to accept my condition, i feel guilty and alone, even though i have a loving family. I cant pace at all and i boom and bust alot. Im going to a cfs group at the moment. Am hoping its going to help. To know im not alone is everything, so thank you ❤
So true. I liked the bit about the battery: Ours is like a tiny one that drains too fast normal people have a huge one that drains slower so a night of sleep or rest for them is like much more replenishing that it is for isn’t and our fried adrenals lol.
I have just stumbled across this and everything you say just resonates with me! The unsteadiness on your feet and losing balance, sheer and utter exhaustion, feeling dizzy when exhausted. It's a comfort to know you're not alone in this! We can hope for miracles to help us cope. Subscribed and liked 👌
I so appreciate your vlogs... Thank you! don't feel so alone with it as I listen to you talk about me!! I hope you keep going. nb.What I eat makes a massive difference....!
I have Fybromyalgia but am convinced I have this too. I can nosedive into a flare so quickly, 10+ years for me, I also suffer IBS(D), arthritis etc. my life is over, at least the old me has gone. The biggest problem is loneliness. X
So well described Gary, as a very long term sufferer of this awful illness I totally identify with all that you say. Excellent advice and encouragement for others.
Totally understand Gary. I'm a fellow ME sufferer in the UK that has been living with the illness for almost 20 years. Had a relapse in recent years partly due to my wife leaving me. This condition certainly requires developing immense discipline and patient endurance...and a lot of solitary confinement! Found you via the ME Show podcast, which is excellent BTW. Any chance the episodes could be put on TH-cam? Thanks for what you're doing and take care :-)
These videos have been very helpful!!! I was diagnosed with CFS from long-COVID and i'm just learning how to deal with it now! thank you for creating these.
Can you exercise? I have cfs and am sooo not able to exercise. The payback is BRUTAL and my husband pressures me to do it because “normal” people always feel better after they exercise. I just feel like dying after. If I can even get myself to even start. To get up. Out of bed. To get dressed. To get in the car. To drive to the gym. Etc......
Absolutely can’t exercise. I can work part time. I can sleep suddenly for hours if I do too much. I learnt many years ago I can’t allow my heart rate to rise at all or I collapse. Even gentle dance can knock me out. Your husband needs to join the ME Association and learn that this is a physical illness. Exercise won’t help. I can walk gently some days. Up to an hour but not more and not too fast. Hope you manage to convey that and get the support. The new ME guidelines from NICE will help.
Every word, spot on, Gary!!! I go through the EXACT same thing. Have to admit, it's a tough life with ME. Hope you are doing okay a year after you uploaded this one. Subbed.
its about recognizing when you are capable of expending a lot of energy vs not, if you try to do it when you are not capable it will reduce your ability massively for a while and put you in a lot of pain and neurological malfunctioning. If you can do it properly it avoid making the disease worse and potentially you get more stamina over time. I mostly only fail pacing nowadays when I am really desperate to get something done. The feeling you get from failing pacing is quite different to PEM. I always get PEM from any energetic activity.
Michele W sending you best wishes, Michelle. My best advice: be kind to yourself, listen to your body and don’t fight it, and aim to take twice as long to do half as much. x
Hi Gary. Thanks for sharing - great video. You seem to be coping relatively well - its nice to see some positivity. You have a great manner with the camera. I wonder if sometime in the future using your experience and contacts to spread awareness of this terrible illness. I think you'd do a great job!
Initialconditions thank you so much. That's most generous of you to say. I'm hoping to add a video each week to help spread awareness and understanding. If you're able to share this channel through your social networks to help me spread the word, that would be really appreciated. Thank you, again.
Hi to all fellow me/cfs people. Just wonder whats Your worst symptom... I used to be an athlete riding offroad motorcykel, but had to quit doing that, many many years ago, around 20 years to be precise, due to this me/cfs thing..., same with my work as an electrican. My worst symptom/problem is huge lactic acid build up in my muscles, my body feels so heavy and sore... its much the same feeling I had, after competing in a 3-3.5 hour motorcycle race, I have now, after just walking up a hill, or stairs. I am on a moderat low carb diet, (no sugar, alcohol, also no dairy products, due to intolerance), since 2014, which has helped me somewhat..... but my performance is still miles n miles away of what it used to be. Have tried everything of pills and vitamins, physiotherapists and chiropractors, accupunctur, and heaps heaps more, Have spent around 300 000nkr, equvalent to £30 000 ish.. during these years, in hindsight, money down the drain... One doctor found out I had waay to little stomach acid. After taking 10 Betaine HCL/ pepsin - tablets with every meal, It helped me big time! But only for a month or so....then the same heavy feeling in my body and those sore stiff!!! muscles came back... wish you Gary and all others, nothing but the best, stay strong. Cheers from Norway
When you talk about just seeing a friend and that wiping you out the next day I think it's easy to assume that it's stuff from the previous day that has caused it but I think with PEM it could be stuff from 2, 3 or 4 days before that has caused the collapse in energy.
Newly diagnosed here and realising I've been doing the wrong thing for years because when I feel good, I want to do ALL THE THINGS! And hence, ending up feeling like I have the flu with migraines and ibs flare ups, hair falling out, etc lol. Is that how others are?
Thanks for sharing your experiences… Not a fun thing to have. Although, sounds like you have allot of friends and family around you whom understand your illness. In this respect, you’re lucky. I find the majority of my F & F don’t… You also, seem to have a happy personality and this no doubt helps you through.
Thank you for this-it is most interesting of course. I have the illness myself and it is sure not nice alas!! I have many symptoms with pain and palpitations, nausea, and other such things. I also have Diabetes type 2, high blood pressure, high cholesterol, anxiety, depression, IBS, autism, and many other things alas. Well done to you of course though!!
Thank you so much for this video. I'm newly diagnosed Me/Cfs and your videos are just what I'm looking for! Honest, relatable,informative and positive delivered with a smile. I realise this video is a year old so you will be married by now, I hope the day was as amazing as you hoped. I'm sure I will find out as I have subscribed and will watch your other videos. Thanks again!
I don't feel hollow, but solid and heavy like made of stone. Blood heavy like mercury but thick and slow like molasses. Limbs so heavy hard to do anything.
I hate to say it but slowly cutting out the coffee (and sugar) will help you in a huge way in terms of limiting the crash cycle. Basically hypoglycemia. Perhaps replacing the coffee with a different drink so you can still enjoy the social aspect of it. Thanks for the info on pacing, this is a new to me.
i just want to say that i shed a tear when i came across your videos im 30 and was diagnosed with me cfs, hypermobility 9/9 ,ptsd ,depression and anxiety that was 2 years ago . im a qualified electrician and worked since i was 14 im now unable to do so now ,you have to be a strong person to be able to cope .a quesion for you i have is althought the widespread pain constanty do you suffer more in one area than anywere else with me my knees cause me horrendous pain and walk with a stick ?, im so glad to have found this page and a reply would be awsome sneding all my will power and support regards kevin
Kev 87 thanks so much for your message, Kev. Yes - my pain seems to flare up worst in my left wrist, right ankle, and around my neck and shoulders. My lower back and right thigh are also occasion trouble spots. Sending best wishes.
my nerve pain as to say is the worst and my medication (tramadol, pregablin,etc doesnt seem to touch it theres days were im crying with the almost electrified bones feeling and then the m,e just comes down like a curtain and im at zero energy i can just drop were i stand even after a 10 hour sleep im running on empty . my only problem is my doctors have no clue my pain clinic ask me to do yoga ?!? ill walk the shop for a paper or walk my puppy for 15 mins and he is permanantly of his lead and i just sit down even that is so tiring hope to see new video soon and im thinking of starting my own blog we need to get more information out there theres so many of us alone and not understanding how this affects others
I am really loving your videos, and finding them most helpful! I wonder if you have any advice on dating with CFS? Were you already with your person when you contracted ME? Lots of love from The Hague!
Pay back.... you ain't kidding me. I spent 3 awesome days visit family .... Walking miles... and today.......BAM....All day in bed absolutely out of the game completely. So annoying. Definately suffering today.
It's just so hard to do .. my payback is 5 days later ... Accumuative too much which doesn't seem too much ends up to being ....yep u guessed it ...too much
Can you brush and floss your teeth and take a shower AND still go for your coffees? I get too worn out trying to get ready to go wherever i need to go and feel like i need to sleep to get enough energy to go. Its terrible living like this. Its been a year for me. I have a four year old to tend to as well. I try reserve as much energy as i can for him. Its so hard and sad living like this.
![Life with ME/CFS | Rugby league captain Richie Barnett [Chronic Fatigue | ME]](/img/n.gif)
One of the best descriptions I have ever heard of ME, so accurate, well done.
I'd never appreciated just how debilitating ME could be. Well done to you and your supportive friends and family. Inspirational.
Hi, while I know this video itself is 6 years old; it's brand new for me today. I really appreciate how you've described the symptoms. I am dealing with these now and repeatedly struggle to find the language...for myself and others.
I'm suffering from this after covid.just looking at ur smiles gives me hope.thank u so much
Thank you from 🇳🇵I'm not diagnoised but have all the symptoms.I am recovering now from a week.
Yeah I cannot do anything at the moment, Had a relapse.
House bound and bedridden 23 hours a day.
Hoping I will improve.
But yeah, Before I could have a hot chocolate in a Wheelchair at the cafe wearing ear plugs, cause I can’t take the noise.
But the Same things would happens to me,
My brain and body deteriorate, become dysfunctional can’t see or use by mind, I am ending in paralysis.
Bed for days weeks every symptom so severe.
1 or 2 hours I May get to speak with people one day in a week if possible,
People are draining for me.
Relapse can be weeks or months.
I do hope with this relapse I can get back to the level I was, because sometime it can make you deteriorate more permanently.
Thank you for sharing! I call it bone tired, I get stiff in the bed and can't move from pain from head to toe. People like you validate the reality of ME/CFS. Thank you from North Myrtle Beach, South Carolina, USA 😊🤗
Sadly, this gentleman passed away last year 🥺
@@loobylouboti I'm so very sorry to learn this. May he rest in peace. 🙏🏻
How did he die?@@loobylouboti
Oh my God, you made me laugh so much listening to you. Going to have a lie down in a quiet dark room... trying to be coherent.
The worst with this sh*tty disease is trying to convince your family you are not losing your marbles!
I have had it for 13 years and still get an episode out the blue.
Be kind to yourself and dont thi k you are being selfish. Love to all you CFS warriors out there.
Your mixed up repeating yourself, second guessing, correcting your description, rambling, embarrassed apologetic, searching analysis is spot on. I can never stop myself. You must be exhausted! Great illustration!
Thanks Morette!
XXC
LOk lol loo på l
I really needed to hear this and remember to be kind to myself today xxx
I have used the same analogy to describe my friends and family. I'm having a tough time at the moment and really having to pace. The fatigue just hits me and I have to lay down. I write anything in my diary and look at them as achievements. Changed a double bed today. Defiantly high energy, but nothing nicer than fresh sheets! Great video. Thank you. X
Thanks for inspiring me to change my sheets!!
If I paced any further , I wouldn’t ever get out of bed . I do agree , it’s the best way to manage this horrible illness . Thank you 😊
I don't have CFS but I do have POTS/EDS and this was supremely helpful. It's amazing how many similarities ALL of us spoonies have. It was helpful to have so many "oh my god...me too" moments in this.
Thanks for saying, Louise. Appreciate you taking the time to watch and post.
Thank you for posting this! It makes me feel less alone for sure!
What's a spoonie? Never heard this before.
Thank you for bringing this misunderstood condition to the forefront. I have fibromyalgia and me/cfs. I was diagnosed 12mths ago but suffered for yrs. I also have vestibular migraines and have no balance on my right side. You are me in male form. Im struggling to accept my condition, i feel guilty and alone, even though i have a loving family. I cant pace at all and i boom and bust alot. Im going to a cfs group at the moment. Am hoping its going to help. To know im not alone is everything, so thank you ❤
RIP Gary.thankyou 🦋🦋
RIP??
Gary passed away in his sleep after a battle with cancer over 2 years ago.He was a true champion and will forever be missed.@@RamonaMcKean
So true. I liked the bit about the battery: Ours is like a tiny one that drains too fast normal people have a huge one that drains slower so a night of sleep or rest for them is like much more replenishing that it is for isn’t and our fried adrenals lol.
I have just stumbled across this and everything you say just resonates with me! The unsteadiness on your feet and losing balance, sheer and utter exhaustion, feeling dizzy when exhausted. It's a comfort to know you're not alone in this! We can hope for miracles to help us cope. Subscribed and liked 👌
I so appreciate your vlogs... Thank you! don't feel so alone with it as I listen to you talk about me!! I hope you keep going. nb.What I eat makes a massive difference....!
thanks hun ❤
I have Fybromyalgia but am convinced I have this too. I can nosedive into a flare so quickly, 10+ years for me, I also suffer IBS(D), arthritis etc. my life is over, at least the old me has gone. The biggest problem is loneliness. X
So well described Gary, as a very long term sufferer of this awful illness I totally identify with all that you say. Excellent advice and encouragement for others.
Totally understand Gary. I'm a fellow ME sufferer in the UK that has been living with the illness for almost 20 years. Had a relapse in recent years partly due to my wife leaving me. This condition certainly requires developing immense discipline and patient endurance...and a lot of solitary confinement! Found you via the ME Show podcast, which is excellent BTW. Any chance the episodes could be put on TH-cam? Thanks for what you're doing and take care :-)
Thank you 🙏 I have shared this to my nearest and dearest in a hope they can understand what having ME is like. Xxx
These videos have been very helpful!!! I was diagnosed with CFS from long-COVID and i'm just learning how to deal with it now! thank you for creating these.
Can you exercise? I have cfs and am sooo not able to exercise. The payback is BRUTAL and my husband pressures me to do it because “normal” people always feel better after they exercise. I just feel like dying after. If I can even get myself to even start. To get up. Out of bed. To get dressed. To get in the car. To drive to the gym. Etc......
Absolutely can’t exercise. I can work part time. I can sleep suddenly for hours if I do too much. I learnt many years ago I can’t allow my heart rate to rise at all or I collapse. Even gentle dance can knock me out. Your husband needs to join the ME Association and learn that this is a physical illness. Exercise won’t help. I can walk gently some days. Up to an hour but not more and not too fast. Hope you manage to convey that and get the support. The new ME guidelines from NICE will help.
Watch the documentary I remember me. It's on CFS 2007. It's on here if you look for it.
Great video! Thanks! I'm about 15 years sick and still so bad managing pacing lol
Thanks for taking the time to watch and comment, Ana. That’s really kind of you. Take care.
Every word, spot on, Gary!!! I go through the EXACT same thing. Have to admit, it's a tough life with ME. Hope you are doing okay a year after you uploaded this one. Subbed.
Elaine Reid thank you so much. Still learning - but definitely doing better!
its about recognizing when you are capable of expending a lot of energy vs not, if you try to do it when you are not capable it will reduce your ability massively for a while and put you in a lot of pain and neurological malfunctioning. If you can do it properly it avoid making the disease worse and potentially you get more stamina over time. I mostly only fail pacing nowadays when I am really desperate to get something done. The feeling you get from failing pacing is quite different to PEM. I always get PEM from any energetic activity.
I love you bunches 🥰✊🏼you described your day and what ME/CFS can be like
Once again, Thank you for your wonderful words. I look forward to seeing your next video.
Julia Kistner thanks so much for saying. Really kind.
Thanks so much for sharing thoughts, feelings, ideas and strategies. And well done for keeping your chin up.
John Halker thank you. Got there in the end!
Thank you so much only just been diagnosed, your comments made me feel emotional because they sound just like me, now I know I am not alone in this .
Michele W sending you best wishes, Michelle. My best advice: be kind to yourself, listen to your body and don’t fight it, and aim to take twice as long to do half as much. x
Hi Gary. Thanks for sharing - great video. You seem to be coping relatively well - its nice to see some positivity. You have a great manner with the camera. I wonder if sometime in the future using your experience and contacts to spread awareness of this terrible illness. I think you'd do a great job!
Initialconditions thank you so much. That's most generous of you to say. I'm hoping to add a video each week to help spread awareness and understanding. If you're able to share this channel through your social networks to help me spread the word, that would be really appreciated. Thank you, again.
Hi to all fellow me/cfs people. Just wonder whats Your worst symptom... I used to be an athlete riding offroad motorcykel, but had to quit doing that, many many years ago, around 20 years to be precise, due to this me/cfs thing..., same with my work as an electrican. My worst symptom/problem is huge lactic acid build up in my muscles, my body feels so heavy and sore... its much the same feeling I had, after competing in a 3-3.5 hour motorcycle race, I have now, after just walking up a hill, or stairs. I am on a moderat low carb diet, (no sugar, alcohol, also no dairy products, due to intolerance), since 2014, which has helped me somewhat..... but my performance is still miles n miles away of what it used to be. Have tried everything of pills and vitamins, physiotherapists and chiropractors, accupunctur, and heaps heaps more, Have spent around 300 000nkr, equvalent to £30 000 ish.. during these years, in hindsight, money down the drain... One doctor found out I had waay to little stomach acid. After taking 10 Betaine HCL/ pepsin - tablets with every meal, It helped me big time! But only for a month or so....then the same heavy feeling in my body and those sore stiff!!! muscles came back... wish you Gary and all others, nothing but the best, stay strong. Cheers from Norway
When you talk about just seeing a friend and that wiping you out the next day I think it's easy to assume that it's stuff from the previous day that has caused it but I think with PEM it could be stuff from 2, 3 or 4 days before that has caused the collapse in energy.
Newly diagnosed here and realising I've been doing the wrong thing for years because when I feel good, I want to do ALL THE THINGS! And hence, ending up feeling like I have the flu with migraines and ibs flare ups, hair falling out, etc lol. Is that how others are?
Thank you Gary really helped me feel normal xx😊
Thank you for making me feel not so alone.
Good video. Explains pacing quite well. Thanks
joanne f thanks so much. I’m really pleased my attempt at explaining got it across.
So very helpful. I totally relate. You explain it so well. Thank.
Thanks for sharing your experiences… Not a fun thing to have. Although, sounds like you have allot of friends and family around you whom understand your illness. In this respect, you’re lucky. I find the majority of my F & F don’t… You also, seem to have a happy personality and this no doubt helps you through.
Thank you for this-it is most interesting of course. I have the illness myself and it is sure not nice alas!! I have many symptoms with pain and palpitations, nausea, and other such things. I also have Diabetes type 2, high blood pressure, high cholesterol, anxiety, depression, IBS, autism, and many other things alas. Well done to you of course though!!
Thank you so much for this video. I'm newly diagnosed Me/Cfs and your videos are just what I'm looking for! Honest, relatable,informative and positive delivered with a smile. I realise this video is a year old so you will be married by now, I hope the day was as amazing as you hoped. I'm sure I will find out as I have subscribed and will watch your other videos. Thanks again!
Tammi Edwards thanks so much, Tammi. Sending good wishes.
I don't feel hollow, but solid and heavy like made of stone. Blood heavy like mercury but thick and slow like molasses. Limbs so heavy hard to do anything.
I hate to say it but slowly cutting out the coffee (and sugar) will help you in a huge way in terms of limiting the crash cycle. Basically hypoglycemia. Perhaps replacing the coffee with a different drink so you can still enjoy the social aspect of it. Thanks for the info on pacing, this is a new to me.
Are you able to cook and clean every day?how do you manage household chores.
Gary sadly died of cancer last year
i just want to say that i shed a tear when i came across your videos im 30 and was diagnosed with me cfs, hypermobility 9/9 ,ptsd ,depression and anxiety that was 2 years ago . im a qualified electrician and worked since i was 14 im now unable to do so now ,you have to be a strong person to be able to cope .a quesion for you i have is althought the widespread pain constanty do you suffer more in one area than anywere else with me my knees cause me horrendous pain and walk with a stick ?, im so glad to have found this page and a reply would be awsome sneding all my will power and support regards kevin
Kev 87 thanks so much for your message, Kev. Yes - my pain seems to flare up worst in my left wrist, right ankle, and around my neck and shoulders. My lower back and right thigh are also occasion trouble spots. Sending best wishes.
my nerve pain as to say is the worst and my medication (tramadol, pregablin,etc doesnt seem to touch it theres days were im crying with the almost electrified bones feeling and then the m,e just comes down like a curtain and im at zero energy i can just drop were i stand even after a 10 hour sleep im running on empty . my only problem is my doctors have no clue my pain clinic ask me to do yoga ?!? ill walk the shop for a paper or walk my puppy for 15 mins and he is permanantly of his lead and i just sit down even that is so tiring hope to see new video soon and im thinking of starting my own blog we need to get more information out there theres so many of us alone and not understanding how this affects others
p.s hope the wedding went well ! :)
I am really loving your videos, and finding them most helpful! I wonder if you have any advice on dating with CFS? Were you already with your person when you contracted ME? Lots of love from The Hague!
Pay back.... you ain't kidding me. I spent 3 awesome days visit family .... Walking miles... and today.......BAM....All day in bed absolutely out of the game completely. So annoying. Definately suffering today.
Lavante Life Rob & Mel I know that feeling! Look after yourself. ❤️
I’m curious how you are doing now? I’m 2 yrs with long Covid, most likely ME/CFS. I’m very slowly improving.
Gary has passed away.He was an amazing man who had a big heart.He will be forever missed.🦋
@@bazmarty6084 Thank you for sharing. So sorry to hear this.
It's just so hard to do .. my payback is 5 days later ... Accumuative too much which doesn't seem too much ends up to being ....yep u guessed it ...too much
Can you brush and floss your teeth and take a shower AND still go for your coffees? I get too worn out trying to get ready to go wherever i need to go and feel like i need to sleep to get enough energy to go. Its terrible living like this. Its been a year for me. I have a four year old to tend to as well. I try reserve as much energy as i can for him. Its so hard and sad living like this.
Thanks for that video. I bet you had to go to bed after that
Thanks, Brenda. Sure did! Appreciate you taking the time to take a look.
Hope you’re having decaf coffee!!!!
It’s actually not, Larissa. But I am reducing my intake!
I found coffee really exacerbates symptoms.
Spoons