How to Find Your Baseline for M.E./CFS Recovery (Stop the Push-Crash Cycle)

[@jangeiger7021]

Thank you for this! It truly makes total sense to me. I was in the Valley of Death way to many times through this struggle. The last crash was the worst I've ever experiences and scared the hell out of me. Finding you on youtube and your videos gives me hope. I have invested in a tracking app which I am waiting for delivery now (thinking about cancelling the order) I need to not focus on it so much - your words of maintain and progress are the key to it all!! I have also spent $$$ on my CFS. Specialists, medications, tests upon tests, doctor after doctor. I think I finally know now to stop it all. I can't thank you enough for these videos and the advice you give us. You are so relatable and straight forward. Much appreciated Toby.

[@homemakersheart3614]

Thank you Toby. I have to share, as you were talking my husband said from the kitchen "has he met you!!" Then you said "going for shiny objects" and he laughed out loud! I am humbled at your ability to know what I am going through. I know you went through it, but when you hit the nail on the head, it touches me. .You are a blessing to us all, thank you

[@CFSHealth]

You’re so welcome. Glad it resonated!

[@willburks6085]

I’ve found some of your principles really useful. The 50% rule and baseline. Doing a lot better than I was, so thanks for that. Finding reintegrating back to work very difficult though and crash’s are coming back. Probably just jumping the gun too early. Just can’t wait to go for a run one day in the future!

[@setitheredcap2677]

I do not have a baseline. I have tried so many ratios and variations and am still constantly crashing. I can make breakfast and then barely be able to move. I’ve taken every piece of advice I can, and the cycle is still endless.

[@wilmamacmillan7760]

Wonder if you can prepare part of your breakfast the night before, then when it's time for breakfast, you don't have to do too much. Do a little bit at a time in anything you do.

[@hshfyugaewfjkKS]

@@wilmamacmillan7760 I have done this with dinner. I will chop up whatever needs to be and gather ingredients from cupboards, then give myself a rest for an hour or two, then finish dinner. Of course the dishes sit in the sink for 2-3 days, but you know, you gotta start somewhere. It is hard to manage some days for sure. It can be challenging to see how we can possibly break things down when we feel like we are only doing one thing.

[@wilmamacmillan7760]

@hshfyugaewfjkKS That sounds like a good start ... do what you can without making yourself feel worse. It takes time and you have to celebrate the little wins each day or week. You need to progress very very slowly so you don't overwelm your central nervous system. I have done Toby's program and this is what they teach ... less is more initially. Baby steps, seriously.

[@maiqueashworth]

I sympathise. I think everyone has their own situation, so we can't really know what will help someone else. But we can make suggestions. Life has its own way of doing what it wants regardless of what we do. My experience in similar situations is that it took me a long time to work out that whenever I started going backwards, having crashes, it always meant I was doing too much, so I had no choice but to dial it back. Sometimes we think "but last week I could this easily!" and we simply can't understand why it happened. My experience is that firstly, it's very difficult to actually judge how tiring an activity is. Secondly, fatigue gradually builds up over time. So we might be able to make breakfast for a whole week, then on the eighth day, suddenly feel drained after doing it. We have to then find a way of resting more. Maybe an easier breakfast, or get help. It's incredibly difficult sometimes. And then sometimes we chat on the phone with a friend and really enjoy it, but then find we're shattered the next day. What helped me was learning to recognise this and rest. And it's really difficult to do because I'm driven. About 18 months ago I was desperate, and sometimes couldn't get out of bed. Thoughts of ending it all came into my mind (though I don't know how I would have done it🤣🤣). But now I can walk for hours every day, go sprinting, carry heavy things, I'm learning how to do a handstand. I'm really enjoying life. Nevertheless I've been overdoing it recently, and was overtired this afternoon. The difference now is that I know all I've got to do is rest adequately. I dozed for maybe an hour in the afternoon and felt well again, though I know that even though I was back carrying things, I'll need to rest more than normally to get back my full oomph. My heartfelt thanks to Toby and team. Actually I attribute my recovery to you, who taught me that I can fully recover, and techniques to do it. I wish everyone else who's suffering this horrific illness, made all the worse by not knowing what is happening to us and other people thinking we're just being difficult, a full recovery!

[@jenniferfoster2200]

You sound like me! It's crazy hard.

[@laranorris7252]

Amazing thank you Toby. I have watched this video so many times because it always helps me stay focused. Also as I continue to improve through my recovery some things you say make more sense because I begin to feel it in my body. 🙏❤️

[@CFSHealth]

Glad it was helpful!

[@joannebate-shawcross4653]

♥️ Thank you that's me to the tee... You have hit it on the nail 100% it's hard to keep a level..

[@sparrowbella4209]

Toby, thank you so much! I do better with the videos that are straight to the point and cover what I need . This is it:-) thank you so much God blessings❤❤❤❤❤ upon you all

[@joannemckay6631]

You have given me hope thank you

[@S1r_G0at]

thanks for this Toby! much needed, much love💚

[@CFSHealth]

You are so welcome

[@chronicallycrocheting]

This is me to a tee. The crash and burn cycle. Another one of my problems is I cannot sleep. I cannot even take a nap no matter how sleep deprived I am. I haven’t taken a nap in 14 years. I need medicine to sleep. I’ve stopped taking it to get off all pharmaceuticals but I’m still struggling. I tried Melatonin again. Only .3mg and it set off my POTS really bad. My body hates melatonin. I cannot have camomile tea. My histamine issues don’t like it. Anywho. I know how vital sleep is. I know all the sleep hygiene stuff. I feel like someone stuck a rock on the gas petal and my car is stuck on overdrive but I don’t have any gas to make it run. My fatigue can get so bad at times it feels laborious to even breathe. Like my body doesn’t have enough energy to expand my lungs in and out and I need a break from breathing. I have a KZbin channel and love doing it but cannot do it like I want because of the crash burn cycle, the lack of quality sleep, the brutal fatigue and everything that goes with that. 😢

[@lifesong8484]

Totally relate with all you said. I've never understood the ppl who say they have ME/CFS & are able to nap.

[@klondon6245]

This may not he the answer for you , but I was the same . Maximum 3 hours slep every night . I have tried everything, and then I found hypnosis . I'm now able to sleep much better. Still disturbed sleep, but I'm getting in more hours . I know exactly how you feel as I always seem to be in acrash than not and feel like I'm one of the numbers that can not escape this . I hope you find a way to sleeo

[@allisonpyle9255]

Hi! I don’t know if this will help you, but here are some things I’m doing: 1) learning to recognize my stress states/emotions - I’m learning to recognize when I’m in fight or flight mode and my body needs a way to release energy. I might need movement, or I might just have to imagine movement. I’m also trying to learn to recognize and process emotions in healthy ways and find healthy boundaries. There are a lot of techniques for helping the body process stress and emotions. 2) L-Theanine and GABA (and magnesium) help me relax, or red light therapy (I just use a lamp at home), or some people find ashwaganda or rhodiola helpful, or SAM-e. Some people work on the vagus nerve. I just wanted to share some ideas in case any of those are okay for you to try since you mentioned you can’t do melatonin. Best of luck!

[@lucindapoulsen5796]

Thanks so much Toby!

[@deanablythe9394]

Thank you for sharing.

[@annastone5624]

I’m really interested in this area of ‘doing things we don’t feel like doing’ Most of my recovery has been achieved by stopping doing things I don’t feel like doing, which was a very very long journey. To stop pushing myself. However this area of recovery is different.. there are so many things that we DO need to push ourselves to do - but also can be almost imposible when in a low cycle. I’d love if you could do a video specifically on those ‘push to achieve this’ even if it creates a slump.. Areas I can think of are Nutrition Cleanliness Planning ahead. At the current cycle I may manage exercise three tummies a week but then I just can not focus on other areas. Certainly not a routine. If I exercise I often need to lie in the next day or two..But that feels like a fair trade off. Another question - how important is getting up at the same time every norining? In order of priorities is exercise or routine more important? Many thanks

[@allisonpyle9255]

As a fellow CFS sufferer who tried to exercise one hour a week for four years, I would discourage any exercise that leads to a crash! …especially anything that you can’t recover from in less than 24 hours. I think it’s more important to do very small, consistent amounts of activity every day (unless you’re having a rough day) and then try adding on a little if you can do that without causing crashes. It sounds like you’re still in a push-crash cycle.

[@annastone5624]

@@allisonpyle9255 Emm good point. Well I've several years from the worst of it. But yes , need to scale back and rethink my current goals. The enthusiasm and joy of Finally being able to exercise .... had me run ahead of myself.

[@jimmiehellstrom386]

I think there’s also some help (other than working primarily/solely on the baseline) with auriculotherapy. Thoughts?

[@patlaing4489]

Thank you

[@CFSHealth]

You're welcome

[@HilaryRouchy]

How long do you have to maintain the baseline before it is safe to increase your baseline

[@LornaAnnMcCabe]

How do you get up and dressed when you have been bedbound, should I try and get up in the morning ?

[@janerowena4023]

I get up and get dressed later on.

[@wilmamacmillan7760]

What about trying to do a little movement every day while you are in bed ie lift your arms up, that's it. Do it again the next day and build on this. Before you know it, you will be able to get out of bed without crashing. I have done the program and this is what they teach, a little bit at a time adds up. Hope this helps.

[@hshfyugaewfjkKS]

@@wilmamacmillan7760 Where was your baseline when you started the program? I'm stuck at a 1-3 hour window of daily energy.

[@wilmamacmillan7760]

@hshfyugaewfjkKS Hi, I was a somewhat functioning person with chronic fatigue. I could get up, get dressed, make some meals, drive to appointments and sometimes go grocery shopping with my husband.

[@jog5289]

@@wilmamacmillan7760 Thank you for sharing this.

[@elaineponciano7197]

This is ME. If I do nothing I seize up and actually my electrocuting pain is worse OR if I do to much I swell and have pain like I'm being electrocuted and can't function. Either way I'm tired.