Zonked Club
Zonked Club
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  • Просмотров 74 611
Remembering to be kind when living with ME/CFS
Gary Burgess talks about his recent boom and bust cycle with ME and how going back to basics, and being kind to himself, helped.
Просмотров: 3 261

Видео

Gary's Guest Takeover on BBC Radio 5 Live
Просмотров 2,4 тыс.6 лет назад
On Wednesday 28 February 2018, Gary guest presented and produced an hour of the output on BBC Radio 5 Live, a national radio station in the UK, to raise awareness and understanding of ME/CFS. You can listen to the whole programme here.
Gary talks ME/CFS on national radio
Просмотров 1,8 тыс.6 лет назад
On Thursday 28 February 2018, Gary was invited to be guest editor of an hour of BBC Radio 5 Live where he got to talk about ME/CFS and speak to interviewees and callers. An hour flew by. You can listen here: www.bbc.co.uk/programmes/p05zn3nz
Talking ME/CFS on ITV News
Просмотров 41 тыс.6 лет назад
Gary kept a video diary about his illness, and shared his ME/CFS experience with viewers of ITV News in the Channel Islands, to coincide with a local screening of the documentary Unrest.
How to manage ME/CFS pain
Просмотров 8 тыс.6 лет назад
Gary’s been struggling to manage his ME/CFS pain of late. Here’s his experience of dialling down the pain and why it takes practise.
What is pacing? If you’ve got ME/CFS you’ll know it’s crucial to stay alive!
Просмотров 11 тыс.6 лет назад
Gary Burgess has ME/CFS, also known as Chronic Fatigue Syndrome. In this video he talks about pacing: the need to really carefully manage your energy to get through a day in one piece. You can read more on his blog at www.zonked.club
What is ME/CFS? And what's it like living with it?
Просмотров 8 тыс.6 лет назад
Gary Burgess set up Zonked Club to share his experience of living with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). There’s lots more on his blog at www.zonked.club

Комментарии

  • @jeansmyth7474
    @jeansmyth7474 Месяц назад

    I would feel well after waking in morning but approx ten minutes later after getting up the awful exhaustion would set in and I would be back in bed feeling incredibly ill.

  • @TheDetoxCureGuide
    @TheDetoxCureGuide Месяц назад

    I had severe CFS that only got worse in time. I am now fully recovered. You can too. I did a video on my recovery and CFS and allergies to persistent pollutants.

  • @sarahyardley1923
    @sarahyardley1923 Месяц назад

    One of the best descriptions I have ever heard of ME, so accurate, well done.

  • @Rebecca236
    @Rebecca236 Месяц назад

    So sad, he seemed like such a lovely bloke 😢😢😢

  • @Rebecca236
    @Rebecca236 Месяц назад

    OMG I was just thinking what a lovely man he is. Usually I don’t like many tv presenters. Now to find he’s died… how sad 😢😢😢

  • @lkececi7513
    @lkececi7513 2 месяца назад

    Also chronic fatigue syndrome is a terrible name for an illness - no sympathy or research

  • @lkececi7513
    @lkececi7513 2 месяца назад

    That's my Analogy too, plus an old phone - that won't charge up

  • @sianjackson9502
    @sianjackson9502 2 месяца назад

    thanks hun ❤

  • @sianjackson9502
    @sianjackson9502 2 месяца назад

    love you gary ❤ i get a what i can only describe as a when ur going through a tunnel a train it goes black at the sides but normally the tunnel goes black as u go in. but i get the black tunnel effect happen the opersite way round it really strange everything feels heavy its painful my neck shoulders and wrists hur hands do too coordination goes can’t move cant lift a cup as gary said you ache so much u just have to go bed or stop doing anything and sleep or relax but i just dont no how to explain it to the dr it to hard if i can’t explain it to me how do i explain it to my dr, i miss u so much gary. i no u would say go to the doctor but right now i hurt so bad i couldn’t ❤ so i watch your videos to help me relax and they help miss u so very much ❤

  • @sianjackson9502
    @sianjackson9502 2 месяца назад

    the best advice garry every game when we chatted was look after youself watch the bees on the flowers just relax. i had a few weeks and the first thing i did was watch gary’s videos to remind me to to look after myself rest recharge that battery you no what garry you’re so so right and i miss u so very much. ❤

  • @sianjackson9502
    @sianjackson9502 2 месяца назад

    thank you ❤

  • @TOPTICKTRADER
    @TOPTICKTRADER 2 месяца назад

    Where are you at right now?

  • @TOPTICKTRADER
    @TOPTICKTRADER 2 месяца назад

    Where are you at now?

  • @sianjackson9502
    @sianjackson9502 2 месяца назад

    i really appreciate your advice and our chats i miss you so much but know you’re always there thank you for being you .❤ i over did it so i came and re watched what i now call garry’s rescue video

  • @TheSorcerer-b2l
    @TheSorcerer-b2l 2 месяца назад

    That's how i feel after a walking two or three hours in the street, i can endure up to a five hours walk in the street they i feel extreme fatigue i have to go back to my house and take a three or four hour nap to recover from the pain and fatigue...

  • @garyhewitt886
    @garyhewitt886 2 месяца назад

    Thankyou.

  • @jessicanilsson5941
    @jessicanilsson5941 3 месяца назад

    How are o today ! Have pain all over

  • @lisarhoades9949
    @lisarhoades9949 3 месяца назад

    Watch the documentary I remember me. It's on CFS 2007. It's on here if you look for it.

  • @Sandi-zh2wx
    @Sandi-zh2wx 4 месяца назад

    Omgosh, this is exactly my life!!! "A battery that won't charge", nailed it 💯

  • @jj-py9kf
    @jj-py9kf 4 месяца назад

    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.

  • @esthercave8111
    @esthercave8111 5 месяцев назад

    7 years of this disease. First few years where the worst unbelievable suffering 24/7. I could not look after my son who was born in 2017 and months after that i started getting symptoms till i was diagnosed 3 years later. My husband had to give up work to look after us. Absolutely hell on earth. I had so many symptoms and did get counselling to deal with the trauma of it all. I never lost my faith in God as a Christian, and trusted God through it all. I am so much better now and went on holiday with my son and husband went to a waterpark and lived life. Unfortunately symptoms creeping back and i still cant manage or understand how i sometimes are relieved of it all but it always comes back and i find myself in bed housebound. Grateful for the healing that has happened and praying to God gor a full recovery. Please read the bible and turn to God to help you endure this hardship.

  • @RamonaMcKean
    @RamonaMcKean 5 месяцев назад

    Gaslighting from my doctor and other health care professionals has been cruel and demoralizing.

  • @RamonaMcKean
    @RamonaMcKean 5 месяцев назад

    "Paralytic exhaustion" is an apt descriptor. So debilitating. 😢

  • @DW-bc2gl
    @DW-bc2gl 6 месяцев назад

    Thx for sharing

    • @86Smally
      @86Smally 3 месяца назад

      He’s passed away unfortunately sad😢

  • @soulstrong
    @soulstrong 6 месяцев назад

    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.

  • @Ladybird22373
    @Ladybird22373 6 месяцев назад

    He actually spoke to me when I messaged him . I was going out my mind with long Covid . Gary has now gone & I will never forget his kindness. RIP sweetheart

    • @hshfyugaewfjkKS
      @hshfyugaewfjkKS 5 месяцев назад

      Was it CFS that led to his death? Or something else?

    • @Ladybird22373
      @Ladybird22373 5 месяцев назад

      @@hshfyugaewfjkKS no cancer I believe. A wonderful human being . I will never understand how the wonderful die like this & evil lives .

  • @meman6964
    @meman6964 7 месяцев назад

    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.

  • @meman6964
    @meman6964 7 месяцев назад

    My sons named it The Zonk in the 1990s. Used to need a daily nap, and slept 1 day a week 24 hrs. Now, I'm happy to get 1/2 day of a week awake, dressed, and out. Seeing Unrest movie made me grateful for what I have. Agree, chiropractor helps esp top cervical adjustments. FIR sauna, or anything to sweat helps. Sitting on back patio in dirct sunbeam makes a better day. SAMe supplement keeps depression away....Modafinil Rx worked for years, but not anymore. Been working with neurologist.... he's sending me to sleep specialist in Orlando!!!

  • @Chris-kr7gg
    @Chris-kr7gg 7 месяцев назад

    I personally think an exposure to certain viruses can be a cause of ME.

  • @Chris-kr7gg
    @Chris-kr7gg 7 месяцев назад

    Ive been suffering with ME for years! Im tired just watching this video.

  • @gowanderlustwithme
    @gowanderlustwithme 7 месяцев назад

    I feel like this but I have a spouse with OcPD who expects constant productivity. Today I’m in tears because I did not have the energy to do everything I was “supposed to” do.

  • @KarenKnutson-mz6gr
    @KarenKnutson-mz6gr 8 месяцев назад

    Hello it’s been a bit. I was wondering if you have seen any improvement??

  • @PaulKitching11
    @PaulKitching11 8 месяцев назад

    I’m sorry but you don’t have ME. You have mental problems. ME is real but I doubt that you have it.

    • @86Smally
      @86Smally 3 месяца назад

      He has been dead since 2022, he had cancer in 2016 he was officially diagnosed by the NHS with ME. He died age 46 from cancer returning

    • @PaulKitching11
      @PaulKitching11 3 месяца назад

      @@86Smally people get officially diagnosed with anything. In fact as soon as someone says that as a defence I’m highly suspicious. This is just my point of view. Intuition is very reliable. I am sure he was tired all the time sure. Or demotivated.

    • @PaulKitching11
      @PaulKitching11 3 месяца назад

      @@86Smallysome people have actually genuinely suffered. The manner in which he speaks and the way he explains it. Nah sorry. Zonked ?

    • @PaulKitching11
      @PaulKitching11 3 месяца назад

      @@86Smallyand if people look at this and think this is ME, they are getting the wrong impression.

  • @ydorri2460
    @ydorri2460 8 месяцев назад

    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?

  • @caroleperret499
    @caroleperret499 9 месяцев назад

    Avant je ne jetais une piles élétrique maintenan çes comme si jai 80 ans jai 43 ans

  • @buddysinsight9834
    @buddysinsight9834 10 месяцев назад

    How are you getting on now Gary?

  • @buddysinsight9834
    @buddysinsight9834 10 месяцев назад

    Hello how are you getting on now Gary? I am 52 and have been very poorly for 23 months. I did 9 days in neurology and they diagnosed me with Guilain Barre syndrome but now they believe I have ME. The truth is from learning so much about it now I know I have it. I just wondered how it was going for you this many years on.

  • @oralie.bordeaux
    @oralie.bordeaux Год назад

    I miss you 😭😭😢 Mold illness is the absolute worst 💔

    • @Dteshome85
      @Dteshome85 2 месяца назад

      Did he have mold illness?

  • @Cactusflower2000
    @Cactusflower2000 Год назад

    I have had ME/CFS for 18 years since contracting it at 42 years old from the Epstein-Barr virus. Also several other serious illnesses, 75 trips to the emergency room, several hospital stays and two emergency surgeries. I have struggled to hang onto the resemblance of my life before the virus but now I find myself at 60 years old with no family whatsoever and alone living in an apartment. I rely on one stranger who lives next door to me to check on me to make sure that I have not died in my apartment. I've had to live through the loss of 20 people and several animals passing and have very little money to pay my rent. I'm trying so hard to deal with past trauma that has set me up for this kind of life but how do I do that when I am suffering through excruciating trauma every single day. I don't even talk to people anymore because they want me to explain to them why my life is the way it is. I've been explaining for almost two decades now and I'm done trying to explain to people who can't see past the nose on the end of their face. I know I sound bitter and I'm really a happy-go-lucky person but I just can't anymore. I used to have a beautiful home, a dog, a family, a car, a job, a sister, a mother, a brother, a husband but it is all gone now and I am alone.

    • @SensaSand
      @SensaSand 5 месяцев назад

      I had a sister snd brother and mother too. They are all gone. I am all alone now.

  • @marymastandrea2640
    @marymastandrea2640 Год назад

    So five different bills not knowing which ones Targets. It.

  • @marymastandrea2640
    @marymastandrea2640 Год назад

    Absolutely almost world of frustrating things I think of running out of food getting here going there what needs to be cleaned what a mess and the pain relentlessnes

  • @Jade-bf5we
    @Jade-bf5we Год назад

    Yoga nidre and guided meditations help me. Plus finding your baseline, and pacing correctly. People can recover. So never give up hope.

  • @selinamattocks
    @selinamattocks Год назад

    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 ❤

  • @Seeker.
    @Seeker. Год назад

    I've had it for 24 years and it's just horrific. I could never be in a studio to talk to anyone, because it would trigger a massive panic attack. And I could not be anywhere near crowds without feeling faint. Constantly sweating, burning skin, night terrors. Joint pain everywhere. And after 24 years I still feel awful. More needs to be done to find a cure for this illness. But the thing is people don't believe you. That's the hardest thing.

  • @NickCager
    @NickCager Год назад

    Gary's example is my example as well. Our 'batteries' don't keep a full charge any longer and it drains quickly. Today, I'm having a very good day and it's been great. Tomorrow will likely be bad, not because today was good... but because bad days outnumber good days by a lot. It's like a random generator... you just never know.

  • @cathyg1891
    @cathyg1891 Год назад

    Thank you 🙏 I have shared this to my nearest and dearest in a hope they can understand what having ME is like. Xxx

  • @clairebhavani3527
    @clairebhavani3527 Год назад

    Sadly, Gary has passed. Great for him to share his story. They omitted a major part of this. During the time waiting for diagnosis and being unable to work, there is no income. So people end up losing their homes, career, life savings, some become homeless and most become socially isolated. Also not addressed is the damage of medical gas lighting. I'm glad you mentioned it can occur after surgery. ME is often called post viral illness which leaves those with post surgical illness even more marginalised. Let's not forget the proven biased differences in how men are treated compared to women ,by medical professionals. Thank you Gary for doing your best to raise awareness. Your videos have helped.

    • @debramartin9396
      @debramartin9396 Год назад

      How did he die?

    • @vparakhin
      @vparakhin 6 месяцев назад

      ​@@debramartin9396Cancer.

    • @mxsjshs777
      @mxsjshs777 5 месяцев назад

      Heartbreaking, may he rest in peace

    • @sweetbeep
      @sweetbeep 4 месяца назад

      Maybe it's from the fluoroquinolone antibiotics they may give for the surgery

    • @Sandi-zh2wx
      @Sandi-zh2wx 4 месяца назад

      Proven bias??? Wth, I'm a nurse and I've never heard such a thing 🙃

  • @bernadettemurray8260
    @bernadettemurray8260 Год назад

    I have milder chronic fatigue, however my adrenals are battered (found out through alternative therapist) At first l thought the CF was getting worse, as that has been present since my early 30s. In 2018 l knew l was slowing down, then by 2020 l was hammered. Also have very dry eyes which is s major strain. Its feels like an endless journey looking after yourself, probably struggle to go out once every 5 days, a major challenge, the bus stop is a third of a mile away just thinking and preparing yourself for it is too much, mind over matter is a constant. Yes if you say your shattered, again people say things like your getting older or l'm tired, l'm thinking YOU WOULDN'T WANT THIS FOR YEARS ON END!!!! I liken it to trying to drive a car without any petrol......Where will you get? No where! Still in my nightie, up at 9.30, back to bed by 11am, up at 2.30pm

  • @jillianmartin6335
    @jillianmartin6335 Год назад

    Hello. I am sorry you have to deal with this debilitating condition. I have had Fibro and cfs for many years now. Your explanations and examples are spot on. My pain is unbearable at times, and the exhaustion is through the roof. I have ibs, thyroid issues, and vitamin deficiencies, I get very breathless. I have dreadful waves of nausea and dizziness, depression and anxiety as well. All fun.....I am in bed right now watching this video and understand your frustration. We have to be kind to ourselves and stop pushing so hard. I am a go-getter and active, so this is like being trapped in prison. I hope you find a good work-life balance and feel better. Prayers

  • @debwardknott3364
    @debwardknott3364 Год назад

    Kindness to self ... excellent comment .