Life with ME/CFS | Rugby league captain Richie Barnett [Chronic Fatigue | ME]
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- Опубликовано: 24 июл 2015
- Richie Barnett had a distinguished career in Rugby League, which included captaining the New Zealand team in the 2000 World Cup. Richie retired due to ME/CFS but has nearly recovered to full health since.
"I’ve been through some pretty horrific accidents in my life,” says Richie Barnett, former rugby league star and one-time Kiwi captain, recalling in particular the devastating on-field headbutt in 2000 that resulted in 10 plates being inserted into his face. “It was one of the most difficult and painful things I’ve been through, a complete facial reconstruction. “But I would rather go through that again than go through ME[CFS]. Hands down" - New Zealand Listener, 2012
Richie talks about what it's like to live with ME/CFS.
Keywords: Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Post-viral fatigue
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I was diagnosed 20 years ago. I was at 80 % the last 3 years and absolutely THRILLED. Then a couple months ago... relapse. Heartbroken. Trying to find my way back again. Absolutely true about finding positive people who in no way disparage. Essential.
How are you now?
I caught Glandular Fever 27 years ago at 35: fit, happy fabulous career. I fought it every step of the way but sadly still have ME - I can manage a 40 minute walk with my Chihuahus but no house work.
However I went to the gym with ME as soon as I was able but then I'd be bedridden for days afterwards. Most people make a good recovery but I never managed despite being the most positive driven person I know. It's amazing to see a happy person talking about it because usually it's people lying around talking about it.
I watch this video several times a day ..as long as it gives me hope to someday see light at the end off the tunnel..there is hope.... thank you for inspiring others...
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You are blessed to get a diagnosis in 6 months. It took me 11 years. I live in America where the AMA and CDC seem to be doing their best to not get the correct information to our doctors about this illness. It's rather frustrating, better said, disgusting, that this is so. If I didn't have Jesus in my life, I would be dead, I'm sure of it, but then, I wouldn't really be dead because I would be with Him, I think, (but was never sure). You gave a good speach!
'You can't fight it, you have to manage it' wow bang on! I've fought it for 10 years, now trying to manage since last month...
'I'm on my own with this' really resonated with me. Thank you for your speech and please keep spreading the word in your down to earth way, it really strikes a chord. I wish you the best of health or the best you can feel and thank you.
There is a reputable explanation for the cause of ME/CFS. Its a particular brain structure that has been traumatised in the beginning of the illness (that's not psychological). The brain goes into defence mode and triggers the immune system and a massive stimulation of the nervous system. Please have a look at the Gupta program for further information.
I went from bedridden and in need of care to 100% health with that. Yes, it sounds unbelievable, but the explanation and the solution are already there
Thank you!!! I will look that up!
You’re a star brother. Thankyou for your support.
There needs to be so much more awareness of CFS/ME! Most people and doctors think it's all in our heads. Too many times I've heard 'go see a psychiatrist and get an antidepressant' and that has mostly been from doctors and other healthcare providers. I've been dealing with this for a year and a half and I have never been more frustrated!!!! I've had numerous lab tests, almost all negative to rule out other things. I did just find out my B12 is low and that could be contributing to my symptoms. Just started a supplement and hope it will eventually help. I can't live like this anymore!
Look into methylation also
@@man4145 don't need anything now. It's under control with B12 and Vitamin D. I've been fine.
@@bethb7965 how are you now?
The most important thing that comes through about Richie Barnett is his honesty about how he dealt with and how he is dealing with ME/ CFS. I found this very encouraging because it inspires me to keep going with my own journey to deal with ME/ CFS.. At this point in time I have not had a confirmation from my doctor that would give me a ME/CFS diagnoses. Further more he seems very reluctant to make this diagnosis. However I do know that I am utterly fatigued/Knackered most of the time. I use the word Knackered as Fatigue may not always be part of some people's vocabulary. Anyone who has had experiences of what you are suffering yourself and shares their experience of it and how they are successfully dealing with it in spite of set backs is truly inspiring. Thank you for sharing your journey back to health. I am still on that journey and your story helps to keep me going. Praise God and bless His Holy City Jerusalem! John.B.
- I got CFS/ME/Fibromyalgia back in 1987 & have Suffered ABSOLUTE HELL with it ever since in the UK!! - Due to my ex wife kicking me out of our shared home & splitting me up with our daughter & her stealing ALL my money & 95% of my possessions!!.... :( I lost my job,etc All in One day!! - IBS/Brain Fog & Absolute DESIRE TO REST/SLEEP,etc is Almost Overpowering!! - U Can't think properley/talk properley/carry out a decent conversation properly/Find genuine romance,etc,etc,etc in the UK... :(
If you guys haven’t heard, look up adrenal fatigue.
I got it 30 years ago after bad flu and although it was beyond awful was fortunate enough to get to the point where I could manage it and always had to be mindful of my limitations but gradually with good nutrition lived an active life. Unfortunately after getting several Covid infections I'm now very limited and can't believe I'm back there again.
Thank you. Great to hear a no wonder cure, change in attitude, previous anxiety etc etc talk!! Just time, acceptance and good management. 7 years in but I'm sure held back by a need to work which pushes me beyond safe levels constantly!
How are you these days? I'm a parent of a severe ME daughter. She is 24. She has been unwell since age 11. Thank you for your talk. We live in ohio usa. There is no support or help here in ohio. It's a lonely journey. We are thankful everyday for Jesus and the comfort He gives. One of the hardest things is her having to give up her dream of being a artist...I mean to be able to do her art as much as she wishes. So many disappointments. She's my ME Warrior. If you ever have a minute could you give her a bit of encouragement in a comment. Many blessings on you. Hope this finds you doing as well as you can. Stay strong
Hey Annie, my name is Adam. I have CFS(almost recovered) and am a fellow Ohioan(Summit County) currently living in North Carolina(until I can finish recovering and get back to the Buckeye State). I am 36 and got CFS at 24. I made a ton of mistakes and am hoping I can lend some insight as to what has worked and where I went wrong. This way you can help your daughter. Please tell her not to give up on her dream. It will come back. And she will come alive like never before. Her art will have more depth, more dimension, and more meaning. Tragedy and heartache are often the artist's best blessings in disguise. I am a songwriter, so I know firsthand. Focus on the nervous system. Calm the brain and the body. Always do much less than one can. Stay away from tough diets and heavy detoxes and cleanses. Rest is only rest when the mind stops moving, not just the body. Learn how to balance feeling emotions, as not to repress them, coupled with containing them when they become too intense and frequent, so as not to further condition the body into a greater stress response. There are two modes: fight or flight, and rest and digest. You can't be in both at the same time. In general, the former leads to ill health, while the latter leads to recovery and repair. Each thought is either a calming thought or a stimulating thought. Even though the body is exhausted, it is in most cases still overstimulated. Keeping the heart rate in a target zone(including at rest) is a good goal. Do not focus on symptoms in the sense that doing so focuses on something stressful. Instead, pay attention to the symptoms as a mere sign of doing too much and giving a signal when to stop an activity, then backing off until the symptoms can be caught very early on, right as she starts to feel the slightest bit. Again, don't worry, but instead, thank the body, then express it gratitude for performing in a way that alerts, and then if afraid, learn to self-soothe with calming thoughts, deep breathing, etc. Look up Sally Gray on youtube and watch her 44 minute video on how to heal the vagus nerve(part of the rest and digest branch of the autonomic nervous system). Eat a slight excess of calories due to this being a state of energy deficit. Think of this as an athlete would. I am a former bodybuilder and personal trainer. If a lifter is taking in less calories, they lose weight, and usually strength and/or endurance. If they are taking in a maintenance level, their condition stays the same(no regression, but no progress). If they consume an excess, there is usually an increase in strength and energy, and often endurance. Do not be hindered by weight gain unless it is excessive. Better to add 10-15 pounds and be able to heal than to worry about 10-15 pounds and hinder recovery doing so. One can always work it off. Also, the best diet is the one best digested by the individual, which will change in strange ways during healing. If stomach issues arise, check the heart rate and the activity from the past few hours to past few days first, rather than the food itself. Remember, when in fight or flight(higher heart rate, racing thoughts, frustration), rest and digest is impaired. Pay attention to the sensory environment(noise, lighting, texture). Also pay attention to the people around. Are they calming or stimulating? Do their personalities and interactions lead to comfort or discomfort? If comfort, carry on. If discomfort, is it the personality type, the subject matter, or the length or intensity of the conversation/visit? Faith is very important, so if it applies to the individual, then belief in God can really make a difference. When God is in control and one surrenders, then that abates fear and struggle, which helps the body stay in rest and digest. See the fight or flight and rest and digest as a continuum. Look at a dimmer switch. CFS is often at the brightest setting. Now pretend the slider is rusty. Over time, the rust breaks away and the dimmer can move. Now it is a little dimmer, or closer to health, unless there is an increase in electrical activity. Don't set firm goals with time. Don't try to heal in 342 days or less. Heal as it happens. Heal minute to minute, day to day. Now check back every three months while having a good day(as to not see doom and gloom). Now fast forward: Vitality is returning bit by bit, symptoms are getting fewer and are less intense and of lesser duration, joy and peace and calm begin returning, optimism is here but is respected and restrained as to not overdo and relapse, and creativity begins flourishing anew as the artist is no longer getting exhausted by the act of creating, and is now doing the same artwork that at one time exhausted them, but is now acting as a therapeutic agent, relieving stress, and helping the illness go away even more. Fast forward again: The journey is finally over. It was long, it was hard, it was grueling, but it built character, humility, integrity, compassion, sense of self, and fueled the desire and appreciation to live like few others get to experience. The shackles are off, and one now has a love affair with life, and can paint the direction of their life just the way one would if talented enough to do so on a canvas. I hope this helps you and your daughter, Annie. I hope it helps your family and all of your friends that may or may not be going through this with you. There is a beautiful new chapter coming. If for some reason any of this works and heals your daughter, point me in the direction of a great sled hill and an awesome pizza place(like Luigi's in Akron). I miss sledding, the snow and the hot pizza to follow. That is going on my canvas with a picture of Ohio(home) as the backdrop. May God bless you both and heal you completely.
Thank you for sharing your inspiring, hopeful, genuine and sage story. Every voice that speaks out from passion about this condition. Praying for you
Annie Balsbaugh sweet girl of yours. God hasn’t forgotten you. It may feel like you are alone. You aren’t. My son is fifteen. Sick for two and a half years. Relapses are discouraging but don’t give up. Make a point to encourage someone else every day. It will bring a smile to your face and theirs. God bless. Sam Schmidt. Feel free to message me Annie.
@@originalsongsbyadam2883 Wonderful how you put it there. Inspirational and very insightful.
Thanks Richie for this it's been such a difficult time the last 2 years it's really give me hope I have had disbelief from many friends and family even docs great speech many thanks
Couldn't of said it better!!! Ive been on the same ride...20+yrs. Def keep those positive around.....only 1oz of negativity can flatten u for days. Great speech 👏
Thank you, I loved this, it's really helped me to hear someone so strong talk about something which leaves us so vulnerable x
This is an excellent video. Well presented, honest, authentic and accurate.
Thank you so much for sharing your story it gave me so much hope and validation, I could relate to a lot of what you shared. Love your sense of humour, resilience and positivity mate rock on.
Thanks so much for this, Richie Barnett. Your descriptions of how you deal with colleagues, friends, etc., was just right. Many of us don't speak about it because there is no easy language that will convey it and those who have not experienced it usually simply cannot understand. So, many thanks!
I’ve been suffering from CFS for the last 18 months... I’m at 75% right now... hope to make a full recovery someday
Today? 85%?
O looked at his in 2019. Have had ME/CFS for 10 years. Thank you!
Inspirational!
Thanks
Thank you so much. I was full of boundless energy before illness- including gym workouts. Ill health retirement has helped so much. I wish I had a poster of you on the wall when I was bad. You're lovely! Haha:)
thank you for your help, I have to much going on
Had fibromyalgia 27 years M E chronic fatigue 17 years .
Thank you for your inspiration.
Wonderful speech! I related to everything you said, thank you. Keep up the great work!
Lennae
He is an extraordinary speaker. Love it !
You randomly popped up on my RUclips, how is your life today? Have you remained well? And do you still help in the ME/CFS community?
I’ve had it since 1996 after a traumatizing accident and surgery followed by virus and finally was managing at about 80% then got covid...I’m right back to baby steps. Listening to people who are willing to speak up gives me hope. I willed myself through life and people can’t understand. Awareness is crucial. I’ve actually had a neurologist tell me (after grand mal seizures hit) that ME/CF is a “garbage term” ...after 25 years of my living with it. Bah!
So POSITIVITY will cure me! Then I have nothing to worry about 😁, because I have plenty of that and I just survived very dark period of life. So I am pretty fire tested mentally. Physically, it is a different thing.
I went shopping my groceries yesterday and I have not get up from couch/bed since. I mean, when you hope that you did not need to breath, because it takes so much energy.
I have not been diagnosed yet, but that is such a fight with doctors anyway. I better direct my energy to recovery instead.
What a nice man! I wonder though how bad he was?i I wonder if he had mild to moderate ME if he could still exercise and go to the gym and coffee shop after. I too got that good with ME.
I first got sick 28 years ago I was bedridden for 6 months then house bound for another 6 months, then able to do part time at college for a couple of years. Then slowly improved but remained at 50% my former self for many year's, then about 12 years ago I got up to 70% my former self and would have said I was very good, still had to sleep heaps though. Then 2 and a half years ago I had my annual flu vaccination and boom bedridden for 6 months, and house bound ever since. It's a bloody disaster! I'm at about 10% of my former self, with wave after wave of flu like and hangover like symptoms.
The thing is it wasn't the vaccine's fault it was just the 'immune hit' at the same time I was under high stress. I think cortisol interferes with cytokines communicating causing the immune system to target a molecule our own bodies produce during exertion. That causes an auto immune attack every time we exert ourselves, and the more we do that the worse the malaise gets.
A truly vile disease.
Anyway what exactly did he do to recover?
Hey, that sounds very legit. Perhaps you could give that idea forward to a doctor who is actually very interested to hear about it. Dr. Charles Shepherd is a medical advisor to the ME association in Uk is one. He went through the illness himself.
Obviously there is lots of theories and they must have come up with a similar theory. But what if they have not??? Because sometimes you are too "educated" to actually be creative in your thinking.
Why this theory seems so legit to me is, because I went through "is this an allergy for excersice"-period in my thinking/symptoms. There is a thing like that, but then the symptoms evolved more and I find myself wiser.
Hah, next comment down from yours was actually saying that your theory was CORRECT and there is a way to cure CFS/ME based on that theory fully!!!
Lovely speech, what are some of the things that helped you?would love to know.
My children are 25, 28 and 33. They don't remember me well. It was February 1996.
Mine was April 1, 1996...no joke. My three boys were 17, 18, and 19. They lost their mother. 💔
So more information please how and you did to over come a lot of the symptoms.
No their are some that can recover.
My is so severe with chronic fibromyalgia.
I’ve done everything everyone say to do nothing works
ME severely disabled me I am in a wheelchair and cannot be physical, Its to much of a great impact on me.
23 hours must day in bed.
I have paralysis and I feel like I am dying every time I try anything
The pain is so bad the weakness,
Nausea,migraine breathing. Stomach,
Cognitive function are a mess,
Noise smell touch everything makes me suffer.
Its be nearly 8 year now.
Doctor cannot do anything.
I was a operational prison officer.
Lost many things in life cause of this.
But the Lord God is keeping me..
Amen
its a shame he does not share what helped him,
Maybe because its different for everyone, and sometimes its not just one thing. All I read on FB is that he has largely recovered (80% better) from CFS/ME after an 11 year struggle, as of the year this video was made
I have also completed Neuro Linguistic Programming , this certainly is brilliant in terms the power of language and associative conditioning etc
Check out this book: the Great Pain Deception by Steve Ozanich. Dear friends of mine have healed from CFS after reading this literature and uderstanding the mindbody process. It helped me heal from severe chronic pain and has helped thousands of others!
the number one most important medicine for CFS ME is Epsom salt. not some crazy, advanced, expensive and patented molecule from a lab at some big pharma corporation or a university.
a microwave-oven (magnetron) radiates day and nicht, even when he is not in use. Causes contraction of the muscles and so chronique fatigue.
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.(magnetron)
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
I haven't had a microwave since I was a kid and I have severe ME. this is ridiculous.