The Hardest Part About Chronic Fatigue Syndrome | The CFS Health Podcast (Episode 29)

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  • Опубликовано: 6 сен 2024

Комментарии • 75

  • @CFSHealth
    @CFSHealth  Год назад +1

    Thanks for watching! Please go download the free trainings in the link in the description to help you get healthy and start living again.

  • @JoanneWhitlock
    @JoanneWhitlock Год назад +38

    I think the variability of how I feel has been hard. I feel guilty, as if I’m faking it, when I start walking and yet I’m saying I can’t walk somewhere.

    • @suzannax
      @suzannax Год назад +3

      True

    • @Jade-bf5we
      @Jade-bf5we Год назад +6

      @The Speaking Channel I so agree with you on that one. It definitely feels like 3 steps forwards and 20 steps back. It's just building everything back up slowly, at a pace we can tolerate.

    • @CFSHealth
      @CFSHealth  Год назад

      Thanks for sharing!

    • @mycreativeheart4159
      @mycreativeheart4159 Год назад +7

      I've felt and done the same. On disability for so many years... feeling guilt every time I tried to do what I needed to to get better. Then allowing that guilt to affect and stop my progress. Honestly... I was only able to let go of some of the guilt when I transitioned from disability to retirement. If I had dealt with that guilt when I was still on disability.... I would be so much farther ahead today. Hugs and Love to you!💞

  • @suzannax
    @suzannax Год назад +24

    I never really thought about how almost all of the issues I've faced could've been avoided if it was just visible or understood. That's pretty wild.

  • @AntonyJS
    @AntonyJS Год назад +7

    This is the truth for all mental health problems as well. People with crippling depression and anxiety have exactly the same invisible illness dimension.

  • @rachelgaffikin426
    @rachelgaffikin426 Год назад +12

    Thanks so much for verbalising the hardest parts of CFS. It all resonates with me, especially feeling alone, and the guilt of letting down family, friends & me - I cried. Very much still grieving the old me, but I have started to move forward mentally, just a tiny bit. There is hope 🌼

  • @tinaburnham121
    @tinaburnham121 Год назад +14

    I really needed to see this today. So thank you for putting it out there. Yesterday was an awful day, symptoms were high and emotions too. This is the reminder I needed that there is hope.

  • @helenwright3201
    @helenwright3201 Год назад +14

    I had more understanding from friends and family when I was in my wheelchair most of the time. Now I think a lot just think I'm faking or lazy... I just am trying to do me now and ignore all that. I know what I'm going through and the people closest to me. Thank you Toby and Team for all you do for us in the membership and also for those who aren't x

    • @CFSHealth
      @CFSHealth  Год назад +1

      Big love Helen!

    • @tammyrobinson1613
      @tammyrobinson1613 11 месяцев назад

      I've had a bad relapse and lost my home, after building my health back 70%
      I'm told I'm not sick, I am just addicted because addiction runs in my family of origin.

  • @helenosborne5046
    @helenosborne5046 Год назад +7

    I cried all the way through this video, it's all so overwhelming

  • @trishsmith-2696
    @trishsmith-2696 Год назад +8

    Wednesday Feb22 3.20pm.
    Hi Toby thank you so much for this podcast. It validates the way I’ve been feeling throughout my 20 yrs suffering from CFS. I wish I could sit my family and friends down to watch this so they can understand the toll it’s taken on me throughout this journey.
    I feel like they think I’m not really that sick and should get on with life. Why in the world would any body want to sleep 20 yrs of their life away!! I’m enjoying your podcasts so thank you so much. Cheers Trish. ❤️

  • @karendeluce9131
    @karendeluce9131 Год назад +3

    Just realised that I have got a little behind with the Podcasts. This is a GOOD thing because I used to be so sick that i was in the house most of the time and would count down to each Monday podcast as a highlight of the week. Recently, I have been out and about living life a bit more with my increased capacity!! This episode really highlights why living with CFS is so emotionally painful as well as physically challenging. I am naturally an above and beyond person and so i have really struggled with not being able to throw myself into being a good mum, wife, friend, family member. This episode resonates with so much of my experience of doctors who basically tell you you can't get better, guilt, grief etc and yet i feel strangely positive after watching it. It makes me realise that i have been through so much with chronic fatigue and yet i am still here turning up every day trying my best to make the best of what i have got and build upon it. I am a stronger and more resilient than i ever knew and i will come out the other side of this at some point.

  • @kendraweech4253
    @kendraweech4253 Год назад +10

    I have been feeling this way for awhile now and the guilt has me ripping myself apart on most days. The other thoughts that add up are also not great. Letting go being the hardest and wanting the fit me and having the energy to do the things that I love.. has me feeling empty ! I know focusing on my healing journey and what I can do .. serves me. Just not that easy !!
    Thank you Tobey for sharing and who you be be and what you are a stand for 🙏💕🙌❤️ 22:58

  • @Lutze_en_voyage
    @Lutze_en_voyage Год назад +5

    At first a big thanks to you Toby and your team of CFS Health for putting out so much valuable content...even for people who aren't joining the program. This is a real service to humanity.
    I think such a profound validation of the hardest parts of CFS is only possible by someone who experienced this himself.
    For me a lot of mindfulness comes into play when trying to let go for instance of the need to be fully understood or the need to correct misconceptions..and to let go of some deep rooted guilty or shamed feelings when things don't work out like you want and you're crashing along the way to recovery. Not only towards myself but towards the closest people who support me too. This is the unconscious 'pressure part'. 🙂 There are a lot of life lessons to learn on this journey. I'm trying to embrace the process.

  • @christinagombar2622
    @christinagombar2622 Год назад +7

    Also, thanks. Have been dealing with this 30+ years. Have made big progress with methods similar to yours, also being a former athlete. Some families are way less understanding than friends 😕 Bear in mind we don't always have that benefit. Nonetheless, we persist!

  • @Fiawordweaver
    @Fiawordweaver 2 месяца назад

    From the states. I hear that my focus serves me better to appreciate what I can do. HOWEVER, I so need to hear the sheer debilitation that this mystery invisible disease does to me. I suffered panic attacks all my life. I’m 71. I was functioning since 1997 with the roller coaster fatigue until 3 years ago when the bedridden phase kicked in. I’ve given as caretaking while still carrying a job all my life. Now it’s my time and this is my boobie prize. My docs don’t even acknowledge my pleas for help. I have never been diagnosed. The docs blame my autoimmune disease, Hashimotos. THANK YOU FOR VALIDATING ALL THE EMOTIONS. I look forward to sleeping because my dream life gives me my old life back. To all in this tribe LOVE AND HOPEFUL BETTER QUALITY LIFE❤

  • @Onz70
    @Onz70 Год назад +2

    I got CFS at twenty after having Glandular Fever. I went back to work after nine months but always felt like I was pushing through. Then when I reached 45 I couldn’t push anymore and I had to retire from work. My body just shuts down and I go paralysed sometimes for hours and can’t even communicate. Two years ago a lump appeared in my neck and I had a hurtle cell carcinoma and had to have my thyroid removed with radiation therapy. Its an ongoing treatment to find where else the cancer may have gone, but I don’t really worry about it, in fact I welcome it. CFS has been so hard to live with, Its a struggle everyday. I have tried so many things and going from a person who was a healthy and a triathlete to this. I’m over listening to anyone having a cure, I just want to go to sleep and not wake up.

  • @esthercave8111
    @esthercave8111 Год назад +2

    I am 6 years into it. I had a relapse recently and still housebound only venturing out for 1 hour a week. I cryed so much the other day from the frustration, how hard my life is with this and nearly going into despair. It has to be acknowledged the sheer negative thoughts and feelings that come with this illness. Lying in your bed exhausted, insomnia, migraines, brain fog, joint pain, the list goes on and on. It is S.A.S bootcamp in suffering. My family still will not acknowledge it and I was too afraid to say about my relapse. I have got very bitter and angry and negative which makes my symptoms worse. I then rap to God for mercy on my terrible thoughts. My husband sees first hand he gets it but still we have grown apart. It really is a massive trial in your life. We must learn from this suffering. Please turn to God for strength and encouragement to keep enduring.

  • @lindaedvardsson4218
    @lindaedvardsson4218 Год назад +5

    Having kids and the guilt is so awful and its a step in it self☹️.. and no one understands..💚.. Your feelings are never validates.. You just have to dissociate more and more..😩.. forward in some parts and backwards in other parts..🥺.. noo.. this isnt a life..

    • @CFSHealth
      @CFSHealth  Год назад +1

      Sending you love! Check out our free trainings to help support you in your recovery. Link in the description.

    • @lindaedvardsson4218
      @lindaedvardsson4218 Год назад

      @@CFSHealth Thank You❣️💚

  • @rosemaryheath7253
    @rosemaryheath7253 Год назад +2

    Wonderful talk by Toby today. Such a very kind loving man! God bless you Toby + a very big thankyou again. Rosemary.

  • @margaretwhittaker2291
    @margaretwhittaker2291 Год назад +4

    As always, life affirming and encouraging. Much appreciated, Toby, thank you very much and God bless

  • @callumsimpson7769
    @callumsimpson7769 Год назад +1

    That really was the most honest account of CFS , I’m so tired right now . Susan SIMPSON 😢

  • @ziganda26
    @ziganda26 Год назад

    Glad to come across your channel. I deleloped cfs after suffering with glandular fever 25 years ago. This illness is lifelong for me anyway

  • @carolfyall688
    @carolfyall688 Год назад +1

    First time watching. I hadn't realised my over explaining could be due to C.F.S. but my Friend tells me I do this all the time and i do.

  • @EncinitasBeeCo
    @EncinitasBeeCo Год назад

    My wife and I have it. And watched you whole video. Very helpful. ❤

  • @joyschembri7983
    @joyschembri7983 Год назад +1

    Thanks Toby.
    Your podcast got me remembering from where I came from over a year ago. And I am very thankful.
    I remember sitting at one end of the staffroom table and a much younger colleague said that "maybe it is all I your head Joy".
    I couldn't say anything back. But I would now, 20 years later.

  • @MARC-wu3yd
    @MARC-wu3yd 11 месяцев назад

    THANK YOU!...Thank you, thank you! I identify and relate with all that had been said/represented. It's been/going on six years as of 10/2/17. CRAZY to contend with

  • @wendibalshaw8583
    @wendibalshaw8583 Год назад +1

    I have been diagnosed with fibromyalgia and completely understand where you're coming from the suffering that you're feeling inside like the rocks that you carry on your back chronic fatigue syndrome as part of my fibromyalgia and it drives me crazy I've just watched your video and I'm going to sign up to your Facebook page and hopefully maybe you could help me to thank you for sharing your experience ❤️

  • @alicjaliedtke3155
    @alicjaliedtke3155 Год назад +1

    THANK YOU FOR YOUR ALL WHAT YOU DOING

  • @pigfood1
    @pigfood1 Год назад +2

    Thank you. It really helps to hear that you should do what you feel you should and not feel guilty. No news to me but I feel that I needed the confirmation.

  • @verotexier5475
    @verotexier5475 Год назад +1

    Thank you Toby
    I was recently trying to explain EM/SFC to someone , and the woman looked at me ans said :
    " mais ça ne se voit pas ! " meaning it does not show ...
    I give up , someone said it is the invisible illness...better concentrating on getting on with strategies as best as we can really
    veronique

  • @kimbetlem6381
    @kimbetlem6381 Год назад +1

    Thank you Toby for another inspirational video.
    For me it was the guilt of being off work regularly. I pushed and crashed for so long but was able to do this because I am doing a lot of the work consistently but with fear. Now am doing with love and the guilt is slowly going thanks to your helpful content 🧡

  • @teresapascuzzo3517
    @teresapascuzzo3517 6 месяцев назад

    Hi toby
    I am struggling with chronic fatigue.. long covid and pots..
    I have tried everything i can...i just went ayuvetic supplements instead of the tons of steroids.. ominipro.. statins.. everything u say makes sense but the time required is almost unbearable.
    Thank you so much for your support and work

  • @Blubes23
    @Blubes23 Год назад

    My three worst so far is :
    how people dont understand me/cfs is not the same as just pain, fatigue or anything like that. like mom always says yeah i know i have back pain too, im tired too, its normal to be alittle tired… (also backtalking someone we know with cfs)
    My father dont understand why i cant just work.
    Second is how much people, especially friends m, relatives and others just seem to be in competition with me. The other day someone said to me her pain was worse (and real) because she needed to operate soon. My response was: atleast your pain is fixable!
    I got so mad!
    Ive met so many saying things like that, how people draw strings to their own life or people they know. «Its the same with my father he ran into the wall too».. im like yes he may be tired but its not the same. Even if he have it, it is not the same!!
    Third one is the pshycological. Not only because i have always had mental health issues (that im figuring out is mostly because i got ME as a kid and lived with it for yeaaaars without being understood by anyone, not even myself) many of the doctors believe my other problems also are pshycological.
    Not to mention how bad i feel because i feel rotten. How i cant go for a walk more that fifteen minutes without getting pain flares. I am sick of how little i can do compared to what i did.

  • @Jade-bf5we
    @Jade-bf5we Год назад +3

    Thank you for doing this video Toby it was so needed.

  • @sueleitch6396
    @sueleitch6396 11 месяцев назад

    It is pretty isolating. I wish I had more energy, but I accept that I haven't 😊

  • @LenaWallgren
    @LenaWallgren Год назад +1

    Thank you very much for all the information you are sharing…..🙏

  • @marcelguldemond2523
    @marcelguldemond2523 9 месяцев назад

    Oh wow, you mentioned the guilt of letting your family down. not just the invisibility of it, but how it’s invisible to your family, so they don’t understand, and they’re angry that they cant do the things they want to do. They just see you lying on the couch all the time and get angry that you’re not working anymore. They don’t see how much you’re working at recovering, stopping the negative thought spirals and the anxiety that comes with this illness.It’s so easy to go to a dark place. ( health rising website has a new article about a finding of low serotonin in MECFS and long covid, so that anxiety might be a characteristic of the illness)

  • @indikaperera-tf3sy
    @indikaperera-tf3sy 8 месяцев назад

    Thank you very much...............very educative

    • @CFSHealth
      @CFSHealth  8 месяцев назад

      Glad it was helpful!

  • @danniellenorthin8436
    @danniellenorthin8436 5 месяцев назад +1

    Definitely the lack of empathy from friends as time goes on a lot don’t get it

  • @johnkaeck2498
    @johnkaeck2498 Год назад +1

    Thank you Toby! Your videos are very helpful! Especially on a down day! John K. in Taos, NM

  • @kaistockman6443
    @kaistockman6443 Год назад +2

    I’m very lucky one of my best friends has a sister with Fibromyalgia so understands a little but we’re not lucky we are ill. But family and friends don’t understand how the fatigue and other symptoms are. For the weight one of my doctors actually told me to do a McDonald’s diet for a week. 😜😢 But I just don’t know that anything could help, I ate a 500 cal ice cream sandwich before bed one night on top of my regular food, and the next day, I weighed even less. 😑

    • @mihakavcic7237
      @mihakavcic7237 Год назад

      You should go profesional.
      Sugar spikes from icream are not the way for repairing your brain.
      When I say profesional, I mean you must do everything right
      for a long, long time, than something must to shift and then something else shift....
      And after 50 months
      [ my lucky case]
      your life is back.
      With, Love Mike

  • @annahewson2310
    @annahewson2310 Год назад +1

    My baseline changes on a daily basis. How the heck do I stay on top of that, you can't. Ive tried many times but I go from quite able to not able at all within the same day, doing the same things I did another day, with a totally different reaction. Heart rate however ive heard is useful?! Ill watch to see if you address this. Affilliate with the bad attitude to CFS though!

    • @annahewson2310
      @annahewson2310 Год назад

      *hourly basis

    • @mycreativeheart4159
      @mycreativeheart4159 Год назад

      It's true Anna.... similar for me. My abilities change from day to day.... for the most part. Sometimes it's hour to hour... when things are rough. What I've noticed in myself.... when I'm doing well... my baseline is perfect, I get excited, and if this lasts a whole week or two... I think I'm ready to add another thing to my baseline. But... when things are rough.... I don't alter my baseline accordingly. I don't take a few things off my plate. Why is this?? Part of me feels like it's admitting defeat. A other part is thinking ... "I just did this yesterday... why can't I do it today??" Another part is feeling the guilt about not being able to do it today. I tend to push through because I want to keep the progress the way it was. In our reality .... letting go and doing less during those rough day are what will get us through the rough days quicker. It's what will allow us to hold on to that hard earned progress. Somehow... I need to remember this in the heat of being frustrated. Much love to you Anna.💞 Maybe somehow you'll find trigger markers that will let you know ahead of time which things you cannot do on a given day or in a given hour. Watch for clues. Let me know what you come up with!!! I'm really interested!👍

  • @josiftomkinson3142
    @josiftomkinson3142 Год назад

    Hey Toby I'm in NZ just wondering if their are any programs in NZ like yours with CFS recovery?

  • @AgnieszkaJ
    @AgnieszkaJ 9 месяцев назад

  • @christinagombar2622
    @christinagombar2622 Год назад +1

    Could you link to Getting Rid of Guilt workshop if it was recorded? Thanks

    • @CFSHealth
      @CFSHealth  Год назад

      That’s inside our Mentorship Program. Exclusive for paying members. There are lots to free helpful trainings in the link of the description in this video. Sending love.

    • @earthcallingfi
      @earthcallingfi Год назад

      Not the workshop but a worthwhile watch ruclips.net/video/N3Osl_giMSc/видео.html

    • @christinagombar2622
      @christinagombar2622 Год назад

      Thanks 😊

    • @brendabrenner2891
      @brendabrenner2891 Год назад

      @@CFSHealth I am long covid w me cfs.. USA.. love Australia/delegation there/how can I get help/ natural supplements from you.. see 10 drs, none understand 🙏❤️.. was pre med