15 Things That Won't Get You Better From M.E/CFS | The CFS Health Podcast (Episode 41)

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[@loobylouboti]

1.Beating yourself up 2.Comparing yourself to others, and to your old self 3. Searching for quick fixes 4. Pushing yourself way beyond your capacity 5. Holding onto guilt 6. Not accepting your current reality 7. Blaming others for your situation 8. Complaining about your situation 9, Focusing on your symptoms all the time 10. Getting caught up on/in, labels 11. Believing that you are so different and unique that, even though so many others have recovered, you cannot 12. People and environments that pull you down 13. Waiting for recovery to miraculously happen 14. Fighting for your illness identity 15. Thinking that recovery is just luck Bonus - 16. Fear of failure

[@KarenKonjib]

Thank you 🙏🙏🙏. I fall in numbers 2, 5,6,7,8,9, 12,13,14,15 and 16. Please I do really want to learn more from you. Thank you once again.

[@barbarateresarhiannonsreal1756]

THANK YOU!

[@maiqueashworth]

Thanks for this

[@CFSHealth]

Great recap! Thanks for sharing!

[@lillight4JC]

THANK YOU!!!! YOU'RE A STAR! Just couldn't cope with 25 minutes of talk! ❤🌟❤🌟❤

[@deethompson3592]

I used to be uber fit - I've gone from being like Tiger to Eyore . I'm still very much in the boom n boost cycle and mourning the life and person I once was and had 🤷🏼‍♀️

[@CFSHealth]

It's totally understandable, Dee. Thank you for sharing! Hopefully our other videos will be really helpful for you too.

[@deethompson3592]

@@CFSHealth I love your videos and listening to the people that have recovered - You and they are an inspiration to us out here still struggling to accept our new way of being - 🙏Thank you so much for being there ❤

[@mycreativeheart4159]

I was like you too... very athletic...body builder, swimmer, runner, water and snow skier, motorcycle rider, mountain biker, etc. Sometimes I find myself getting stuck in wanting those things back. It's because I can remember exactly how good it felt to do those things. Even now 40 years later... I can close my eyes and feel myself "swoosh a turn in the powdered snow"..... "lean into a curve on my motorcycle on a favourite windy road"..... or "feel my muscles, and breath working in tandem as I swim strokes in the local lake." There is a sadness and grief that goes with that. I constantly have to bring myself back to the present .... be mindful... and realize.... "Today I did 5 squats and 5 counter pushups.... last week it was only 4.".... Progress!! Meanwhile... I choose to relive those "past feelings" for a boost of endorphins...and reframe them as.... "optional possibilities"! You never know!!!❤❤❤

[@JacquiQ]

I have been in such a bad place over the years mourning who I used to be, the adventurous person I used to be. When I thought of her and all her dreams I just could not beleiev what i had become. A couch potato. Took me to some very dark places. I have moved on from that but I think its only because I have been sick for so long I am now old lol. Its tough but yeah Toby is right, If you can let go of that, then you can focus on building the new improved version of you for the future ! All the very best

[@nm628679c]

​@mycreativeheart4159 - If you find yourself in this situation, take it from someone who knows- You must keep physical exertion to an absolute minimum, or better still, you should not do ANY strenuous movements.

[@lillight4JC]

For those with severe Chronic Fatigue syndrome, please could you possibly list all on a chart at the beginning of your video for us to take a screenshot of? Not up to a long video. 🥺

[@mycreativeheart4159]

Self responsibility... watch 2 min, or 5 min... whatever 50% of your limit is. Taking notes is optional, but helps. Then turn off video... come back to it later.

[@catlady7464]

I have always been hardworking, organised and active. But not anymore, I couldn’t understand what happened to me. I thought I just suddenly became lazy, so I am relieved to hear there is another reason. Thank you so much for this, I see light at the end of the tunnel.

[@CFSHealth]

Glad to hear this was helpful

[@neoreoscar27]

Thank you. This is genuinely the most helpful CFS video I’ve seen! They say when the student is ready, the teacher will appear…. I’m ready. I’ve been making small changes for a while and it’s enough just to start doing that. One thing. Then another. I’m starting to understand what self care actually is for the first time in my life. Onwards and upwards! ❤

[@debracolorio9443]

I have CFS for over 30 years. I know I definitely do push myself beyond my capacity when I do receive some energy. However I don’t fight it and accept this situation while researching to live in the solutions. I no longer identify myself with this illness. I’m strong and enthusiastic about recovery

[@mycreativeheart4159]

Great attitude Debra!!❤❤❤

[@CFSHealth]

Love your attitude Debra!

[@carlav494]

No. 5 is me. Noticing that I have guilt for being 'less productive', guilt for having better boundaries, guilt for resting more. Thanks for including this. It's made me more self-aware of how unnecessary this guilt is.

[@CFSHealth]

Glad to hear it resonated, Carla

[@ChiefMelee]

Proper pacing can be so challenging but I’ve really tried to focus on not pushing myself with things I have more control over, recognizing the warning signs and resting as much as possible. It can be so hard to do what I need to (properly rest) when the world doesn’t pause because I’m sick, especially with children. Can be hard no not push when my family needs me. Sometimes things just happen and I need to respond. I can’t just lock myself in my room and completely ignore them (unless PEM leaves me no choice and I really try to avoid that). I’m grateful that I have a supportive husband. The guilt I feel is that I cannot be more involved and present. There are times I’ve pushed myself not to miss special events. I use a wheelchair for some days to conserve energy and reduce payback. I’ve followed your trainings for years, yet have continue to decline. Try not to dwell on it and get down but when I get so fatigued from just trying to take a shower, or simply make a pot of coffee, CFS gets up in my face and reminds me it’s there. Just have to take it one day at a time and do my best.

[@user-hc9zi3hp2p]

I have been trying to move forward trying everything to do so, listening to this video i think i am doing ok i just didn't realise i was. Thank you Moving forward is the goal! Good health and peace.

[@Building_a_dream]

With finding my baseline, I'm doing so much better in terms of what I can do! Not vegetating anymore, but working on my dream! Only 16, the fear of failure, remains about how I feel. I still feel the same old tiredness every day. I'm going to check if there are moments throughout the day where I don't feel it!

[@kathbond45]

I love this reverse psychology and solution focused approach. Throughout the three years of my condition I have ticked all the areas on your list. I have begun to flip quite a few of them on their head more recently. The key one for me was no. 6 - accepting where I am right now. Interestingly from quite early on I realised I didn’t want to be my old self (I didn’t look after her enough). I’m learning to strip back my unhelpful behaviours and slowly move forward. This requires patience and discipline which don’t come easy when you have a ‘doing’ driven brain! You can’t wait for this to happen you have to ‘drive’ your own progress carefully and mindfully - what a journey this has been and I’m excited about what’s ahead! Thank you 😊

[@CFSHealth]

You’re so welcome Kath!

[@margaretwhittaker2291]

your response is inspiring, Kath. Thank you for sharing! It dawned on me that I didn't want to be my "old self", for the same reason you stated. Wishing you all the very best, as you continue in your journey.

[@kathbond45]

@@margaretwhittaker2291 Thank you Margaret - wishing you strength and kindness x

[@daisy7066]

I have come across people, however, who say they think there's something wrong with them and then assume its CFS without any understanding of it or diagnosis.

[@rebeccaduffy7634]

Guilt is so true. I'm forever apologising for not being able to do things. To be there for people and for having people do things for me that I used to be able to do myself. It's a difficult feeling to let go of. I've had to let go of people that show disappointment or anger towards me.

[@karendeluce9131]

ALL 16 resonate!! However, I am proud that i have worked on reverse engineering some of them since following CFS health. WINS - Acceptance of where I am. This was crucial in finding my baseline. Key to this was understanding that this is only where i am right now but not where I will be forever. - Complaining. If anyone ever asked how I was, it was hard not to complain about how crappy life is with CFS. Now I have come up with a more positive "script" that acknowledges that i am going through something really tough BUT focuses on what i am doing to help myself and highlights my little wins. - Fighting it. At first my whole approach was "this is not going to beat me" or "i am going to fight this and win". Changing my mindset has helped me become more relaxed in my approach and taken the pressure off myself. STILL NEEDS WORK Guilt - This is hard because i was such an above and beyond mum/ wife / friend / work colleague before I was sick. I carry a lot of guilt and hate the feeling of letting people down. However, i am trying to be self compassionate and kind to myself and I am improving. Comparison - I drive myself crazy with this!! It is not so much comparison with others (I have cut back my time on social media to protect myself from this). But i can't stop my mind from constantly comparing my old life and capacity. I know it's not helpful and so i need to think carefully about how I can improve in this area. Thank you for another great episode. So grateful for your content.

[@marikie]

Thank you so much, Toby. I am really grateful for your sharings. The biggest traps for me have been pushing & crashing, and ignoring that I have CFS. May times I´ve been feeling that "Now I am finally healed, and I am a Super Woman now - yay!"- and then I´ve pushed myself too far and crashing. Just went through that again, and building up again. Accepting where I am at. Guilt has also been a heavy one. Another element that was not mentioned in this check list, is diet. What I eat and drink (and take in energetically as well) really affects my allover health and energy.

[@CFSHealth]

Thank you for sharing!

[@margaretwhittaker2291]

I relate 100% to you and your experience! Thank you for sharing this

[@michelaanderson5720]

I think #10 is mine right now. People with diabetes type 2 don't reach 70 yrs old. I've got only 10 yrs to go then. I have a friend who invites me to go with her hiking, walking, or just hang out, but I'm so exhausted I never go anywhere. I come home from work at 4 or 5 and at times I just go to bed. Going to work is the only think I push myself to do, and that's because I'm sitting all day; if I had to walk or stand I wouldn't be able to do it. Everything else feels like too much.

[@CFSHealth]

You're not alone Michela. You might find some of our other videos really helpful too.

[@user-hs8mt9em8f]

Great video ,so meny good advice..I try few mindbody approach and crushed so bedly...becouse they ignore physical limit.just work on mental health and that can lead you to believe that if you have good mindset it resolve physical pain and weakness..mind set is important but you cant ignore phisical limit..i ignore few times and be very positive and calm and crush horible..baseline is most important..sorry for bed english..hope you understand..

[@CFSHealth]

Totally understand, Jovan! Thanks for sharing!

[@margaretwhittaker2291]

I agree with you. I did a very expensive "reverse therapy" course with a coach, several years ago, there was no place for physical limitations. Toby shows us how to address our condition holistically, what a blessing he is! I wish you well in your recovery.

[@fordfela]

Thanks heaps toby you are the light in the darkness mate,i so agree with all that you said and its all about positive thinking for me,moving forward im not"the only one "with this and it is posible to achieve wellness cheers

[@CFSHealth]

You're welcome! Thanks for sharing! I'm glad to hear this was helpful

[@gwenliu8119]

Thanks so much Toby, once again a great video. I need to listen again to get the list of things. I loved your acronyms and believe FEAR is a real danger. I recently overdid things and crashed. It's so easy to do. I have rested and now trying to pace myself and move forward.

[@CFSHealth]

Glad you liked this one, Gwen!

[@margaretwhittaker2291]

I identify strongly with your recent experience. Take care, all the best with your recovery

[@margaretwhittaker2291]

number 4 is me! I have overcome many of the others, especially 1 to 8 [ minus number 4 ]. Number 12, I never thought was achievable; but I was wrong, It was a slow process yet I eradicated the negative people and environments. Thank you very much, Toby. God bless

[@privateperson5769]

Accept where i am at and stop beating myself up !!! Great stuff TY

[@filmfan3697]

Great video and one that i will watch a lot. Am definitely guilty of some of these, especially feeling guilty for being sick, believing I can't recover and pushing too hard. I go all in with the pushing!! And then im nearly in a coma for ages 😅. I am at a point of acceptance if where I am so that's a start. Thank you.

[@CFSHealth]

Very common! So glad to hear this resonated :)

[@filmfan3697]

@@CFSHealth Thank you!

[@clairchetwood9777]

Then there are people like me, who believe in everything that you say with every fibre of my being, but I can't afford to pay for a life changing course like this. I really need a plan, someone to show me the direction that I need to go in. Having to stop work is bad enough, but then not being in a position to have access to programmes like this one hurts massively.

[@elainemartin9654]

Clair Chetwood……Hi ..,l understand.. but do you know about all the free videos Toby offers ….There is a goldmine of information…..alll free…He goes way above and beyond what is usually available for free….Hope you can find and get help from all the free resources🌞

[@mycreativeheart4159]

I feel for you Clair... truly. It's do difficult when you are ready, in the right frame of mind, willing to give 100% commitment..... but have no funds. Me too. After being on disability for 30 years, (so only 60% of wage and no cost of living increase.) Then forced to retire because the disability fund ran out of money to pay its workers. So drawing on retirement savings.... means less money for a care home in old age, when necessary (=stress, worry). Already have whittled my life down to essentials.... no cable TV... only Netflix, cellphone for emergencies... no texting, applied for all disability option service discounts, buy second hand clothes, buy everything possible on sale, etc. Toby has a good place to start .... on his website. The creating a baseline video..... free.

[@jenniferfoster2200]

Well the free training videos will help if you apply them.

[@clairchetwood9777]

@@jenniferfoster2200 I'm happy to do them. Is that enough for a full recovery? I already got myself to 80% on my own, just need help with set backs and getting past that final block.

[@clairchetwood9777]

@@elainemartin9654 I'm going to have a look for them. I already got myself to 80% recovery, I just can't seem to stop the set backs and getting over that final hurdle. It's been a long and dark road for sure x

[@JacquiQ]

Wow, so good. Done all of them to different degrees over the years. I think beating myself up continuously for everything, even getting sick, made me sicker and made it symptoms last longer. No more ! Thanks Toby ! One of my worst symptoms has eased off a bit, yay, but guess what, I now have a new symptom that will not heal after weeks of it and I am No 9 : Focusing on my symptoms all the time ! Its hard not to when it interferes with everything u do all day, every day and it is painful all day everyday :(. And so follows on with No 10: I go from not getting caught up on/in, labels to looking for. anew diagnosis and going back down that rabbit hole.

[@pauladair7671]

Toby - great advice for anyone. I found them a vital list to consider when I started your programme and they certainly help foster a positive mindset. BTW 6 months into the CFS programme and I don't think I'm doing any of these things!

[@shaunnarochelle]

great video. I like your calm and down to earth voice and tone - what a sick person needs. I also like that you addressed exactly what you said you would rather than giving a click bait title with a very general discussion as some of these cfs vids do 👍

[@karenpowell9136]

Thank you so much for this…it actually makes me feel like this is possible!

[@CFSHealth]

Thanks Karen, glad to hear it was helpful!

[@slittlew]

These ALL resonated, but #11 made me laugh ("Thinking you are SO different...)- it was like you were reading my mind, and I wasn't expected it! LOL. I'm going to work on dropping this one this week!

[@CFSHealth]

Great to hear Lisa!

[@anjas686]

Thanks a lot, Toby - I am following your channel for around 3 Weeks now and have already learned so much. And feel much better now as well. 🙏

[@CFSHealth]

Great to hear!

[@kirsteetu131]

Great video, thanks. Like you mentioned it definitely takes more than luck to improve symptoms - it takes a lot of hard work!

[@CFSHealth]

Consistency is the key ;) Thanks for sharing Kirstee!

[@jackydahlhaus2850]

This is so helpful, not only for health but also in other life situations 😊

[@CFSHealth]

100%

[@kellyschroeder7437]

Love LUCK - Labor Under Correct Knowledge 💙👊💞👊

[@clairey6407]

Thanks Toby 😊

[@meiliszetzki6057]

The 2nd point is sooo me, I always compared “the old me” 😢😢

[@caseyj1144]

I think mine is 5, but it’s really also gratitude for my support system, mixed with confusion for why my friends and family and partner still love me like this combined with fear they will get mad/resentful and stop….

[@fionarouse8892]

Thanks it helped me thanks a lot

[@manjulasood1470]

Thanks Toby no 10 is the worst one &12 too tthank you for the video & your advice & helpful tips 🙏🏻

[@CFSHealth]

Glad to hear this was helpful!

[@estieoosthuizen1331]

All of them!!!! So far!

[@Jjroro73]

Changing mindset

[@karenrichards4908]

Thank you for the tips. I've lived with CFS for many years and find as I am getting older more debilitating symptoms are showing up. I believe I manage well and still try to work albeit part time. However my down fall is the pacing! I admit I am bad at it; as I just use up all my spoons on a good day! However I will now start to be kind to myself, as it's all down to self management. But any further tips would be welcomed!

[@katharinedavis4947]

Thankyou so much. K

[@alexandrecouture2462]

Great video!

[@Jjroro73]

Yea so many answers just from 1 video 🙏🦋😇

[@anamarkovic2410]

I would say that I do most 8 and 9 although all apply to a degree.

[@Jjroro73]

16:27 luck good analogy 🙏🦋😇

[@BroncLander]

I just bought a bunch of Alpha Lipoic Acid to try out. I feel like it might address underlying issues. It should become evident in a few weeks if it helps or not. I still push way past my capacity and then suffer for it. I'm working on finding my thresholds. And I definitely have a terrible environment

[@dorisackermann6695]

I have also found out that my symptoms started after a traumatic narcissist if relationship ended, and during that time in the relationship my little baby of a dog at 13 died, I also had to close my business during Covid. All of these factors I think contributed to my CFS and fibromyalgia.

[@mycreativeheart4159]

Totally get that Doris. My FM /CSF was brought on by childhood trauma of trying to survive and anticipate a narcissistic mother. I'm sorry to hear of your beloved puppy and business.... that is so tough and much added stress and trauma. It really does get better if you can work through the trauma with a life trauma counsellor or specialist. Sending you love.❤❤❤

[@bonniespruin6369]

I'd say my biggest one so far is guilt of not doing more (more house cleaning, more time with family and friends).

[@lyonsclairee.676]

Comparing myself to others and what I was and thinking now I am of no value a half person. I know this sounds bad but when I ask myself deep down under the mask what do I feel this is it.

[@tuulafai4046]

8. 10. 11 - ty 🙏✝️❤️

[@dori1oakes]

I have ME/CFS and run a small dairy goat ranch. I am doing well but the disease is still effecting my life , I can manage 10000 steps a day without crashing but I am not recovered, I still need to use coping strategies to get through each day. My experience started in the 80s (first diagnosed as Post polio syndrome) I can say there is NO CURE! Getting better is NOT recovery. Moving forward is NOT recovery. Remission and recovery are NOT the same thing. Please don't mislead people by saying they can recover. They can adapt and still live a full life. Is a legless person recovered because they have prosthetic legs? No, they have aids that let them live a more normal life but the legs did not and will not be growing back anytime soon. I definitely can't recommend this video.

[@meiliszetzki6057]

Toby, all point is true 😢

[@Jjroro73]

I am not defined by my trauma 🙏🦋😇

[@user-xx2cq5sg7m]

You don't mention how to cope with the boredom, and fear of mecfs. Or how to establish the baseline

[@Jjroro73]

I am not my illness 🙏🦋😇

[@Jjroro73]

10

[@kaydelamar4909]

Probably been stuck in all of them.

[@capatheist]

15 ways of thinking… most of wich are synonymous with each other… Not saying it’s wrong. Avoiding negative thought patterns is very important. But that’s not a list of “things to not do”

[@tessamary1017]

Toby Thank you as always 🙏

[@CFSHealth]

You're welcome, Tessa!

[@Jjroro73]

Im intigrating back into life . The pain in my legs are holding me back zzzzźźż§

[@Jjroro73]

Thats just wishing

[@Jjroro73]

Energy vampires

[@majorminor2065]

This video was no help at all, all these things are obvious.

[@lillight4JC]

For those with severe Chronic Fatigue syndrome, please could you possibly list all on a chart at the beginning of your video for us to take a screenshot of? Not up to a long video. 🥺