Summary 1. Doing more without feeling worse 2. Reducing body fat, increasing body muscle tone 3. Better appetite 4. Lose focus on self, help others 5. Dealing w life problems more, not just survival 6. Talk more, engaging w life, come out of your shell 7. Become "annoying" to friends and family 8. Recover from colds quicker, immune system is stronger 9. Positively plan future 10. Setting goals and action towards them 11. Doing things that you wouldn't have imagined doing previously and you're doing them w ease, unthinkingly
Mel H Mel thank you for doing these summaries they are brilliant and will help a lot of people. If and when you have the energy I would be so grateful for you to summarise the videos as you go along watching them. Feel free to email me from my website www.cfshealth.com so I can personally thank you. much appreciation - Toby
This is the 11 I wrote down too, so what was the 12th one? Great list though, Toby. Thanks so much. It really makes me see that I have come a good way even if I feel stuck. I'm going to start journaling to keep a proper track of my symptoms.
I have started feeling less awful when stressful things happen and when I get less sleep than usual ... and have slowly started recording music and singing in a band again after a year of not having the energy to give time to this passion. Which helps me get better in itself... what nourishes the spirit nourishes the body etc. Good cycle to get on!
This is great! This explains it perfectly! I’m in this recovery phase. It’s such a long way from my sick phase. I couldn’t even take a shower, I could only eat a mashed sweet potato a day without getting sick and now I’m eating a full meal, taking a shower and doing some house work. Although it is scary to think that I will ever go back to being that sick again, it truly does feel like your body is dying during the bedridden phase. But I am so so thankful to be in this phase! Whoot! Whoot! So thankful for the small things! They mean everything!!
Thank you for this. I get frustrated because I don't think I'm improving but when I really think about it I have made lots of improvements. I need to keep a diary or something!
Wow, you have just described almost exactly where I am now! Thank you for putting into words what is happening in my life. I had a setback about 2 weeks ago. I was a bit discouraged, but I looked back at the week before the setback happened and was able to see that I had really overdone things. I was back just resting and just accepting that I had overdone things. But compared to a year ago, I did not go crashing down. I was still able to make my own breakfast and do a few things. In the second week, I felt myself coming back. So even with a bit of a crash, I didn’t go too low and have really bounced back. It is so encouraging and to hear you describe it so accurately - well, what a nice surprise. Really encouraged.
Great video - it's easy to lose sight because this process is so SLLOOOOOOWWWWWW. I recently bought a puppy and then asked myself if I was crazy, making such a commitment when I'm not well. But it's forced me to get outside daily and I've seen my strength build up with the walks. Im so grateful - it's both a frustrating and a wonderful phase, because you're getting there but it still takes a long time.
How's it going with your puppy? It was comforting seeing your comment because I did the same thing. I worked with dogs before I got ill and some people around me thought I shouldn't do it. It has been really hard but I think it's helped me keep going and brought joy into my life despite my really bad health. My pup's 11 months now and a tricky phase but we'll get there.
Totally agree with this comment. Over the course of my illness... I had a cat for 18 years. Then when she passed, I went 10 years without a pet/companion. I didn't improve as much, became more withdrawn, less sociable, more "woe is me" focused. I eventually go another cat and now feel more connected to my spirit, my heart and life in general. I am much more hopeful and positive. 😻
Hey Misty! I hope you've notice improvement in the last year. With regards to your comment here... Watch (track/journal) the length of time of your setbacks, and of your "recovered" times, and of the space between. I noticed at the actual beginning of my recovery....my relapses happened every 3 weeks. Now I don't have actual relapses anymore.... I have setbacks which are easier to recuperate from. AND they might happen every 4-5 months. ...so I have much longer periods of feeling better. Best wishes to you!
This is a great message Toby. I journalled exactly how i felt from first having Cfs to the present. 2 years on.It was slow but sure recovery. Its amazing how far i have come. From bed bound to doing normal things. Telling myself more is a brilliant idea. Thank you Toby. Xx you really have Cfs spot on Toby.. Such great advice. Thank you for giving it to us. Really appreciated xx
Loosing weight does not have to mean you have improved at all, it can often be the opposite. Many people with CFS loose weight because they have not the energy to cook and eat properly and that is not a good sign.
Not sleeping all day and not being out of it during wake time was huge for me. I can actually do things now. Before I got so little done and was too out of it and not all there.
Thanks a lot man for the video. I feel like i am improving, my sleep cycle is better, i am no more allergic to certain foods, i am not annoyed/ irritated with my family and friends. I can cook one meal a day for 5-6 people and clean the house( i do take rest in between though) or can prepare all three(indian) meals without cleaning house.if i can improve a bit more than planning to start.regular exercise and loose some fat on tummy and hips.currently aprox, 70 kg with 5.7".
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
Great video again Toby - I will need to re-watch this one too. I have been improving so much and watching this has made me realise how much I have been focussing on my limitations rather than appreciating those improvements recently - So ...a change of focus for me :) Thanks as always for your support and advice.
Definitely agree with these. it's really rewarding to look back and think 'look how far I've come!' even if you still feel tired or in pain there is still improvements. The talking one was big for me and annoying my siblings more 😉 great video thanks x
Great video - so helpful to see signs of improvement that I wouldn’t have picked up on my own. Thanks so much. I am interacting with my siblings ( 8 of them this summer of Covid.) But I am not annoying them. I have made an effort to change ( lots of criticism over the years ) and that is what I am so pleased about. It is difficult, but the fact that I am able to control myself so much better shows huge improvement in many ways. Many thanks on all your good advice. Paula
I actually agree with everything, last few weeks, been noticing up, energy levels and lost a bit of fat, everything else actually came along (number 1 thing was sleeping before 11 for me tho it's not the perfect sleep but better, eating more foods in general and doing the small things I enjoy like hanging out a little more with friends, reducing stress a lot)
Thank u Toby I love your videos...cfs..is a journey and I agree every little step is a step forward to healing...I feel blessed I just got over pneumonia y bronchitus y have been doing spring cleaning y started my dancing again y yoga....I am getting stronger y but also pacing myself thank u for all the advice...take care..God bless Stacey :-)
I rarely get a bad cold. haven't had flu.. Often, I feel like I have the flu aches but no other symptoms. I just crash and have to lay around for days to get energy. .
Recovery and leading a more healthy and fulfilling life does not actually mean that your chronic health condition is cured. You can learn to live a passionate, vibrant, fulfilled life within your limitations of your illness. In REAL life... anyone... whether healthy or not... will always have ups, downs, and plateaus. This is absolutely NORMAL.😘
This is awesome, will definitely rewatch it :) Two days ago I noticed that I'm not avoiding conflicts as much as I used to, so yeah I'm getting better ;) 'You know you're getting better when you start annoying people' haha my favourite one :D
"Avoiding conflict" is a big one for me, but I'm also an introvert... lol! Having said that... I don't put off uncomfortable things for as long as I used to. I try to get them done or taken care of as soon or as quickly as possible.
Summary
1. Doing more without feeling worse
2. Reducing body fat, increasing body muscle tone
3. Better appetite
4. Lose focus on self, help others
5. Dealing w life problems more, not just survival
6. Talk more, engaging w life, come out of your shell
7. Become "annoying" to friends and family
8. Recover from colds quicker, immune system is stronger
9. Positively plan future
10. Setting goals and action towards them
11. Doing things that you wouldn't have imagined doing previously and you're doing them w ease, unthinkingly
Mel H Mel thank you for doing these summaries they are brilliant and will help a lot of people. If and when you have the energy I would be so grateful for you to summarise the videos as you go along watching them. Feel free to email me from my website www.cfshealth.com so I can personally thank you. much appreciation - Toby
This is the 11 I wrote down too, so what was the 12th one? Great list though, Toby. Thanks so much. It really makes me see that I have come a good way even if I feel stuck. I'm going to start journaling to keep a proper track of my symptoms.
Not sure if #7 applies to me.... according to family and friends.... I've always been "annoying"!... lol!
@@Childeagrestis I think #6 is actually broken into 2. Expanding and coming out of cave more is separate to talking more ☺️.
I have started feeling less awful when stressful things happen and when I get less sleep than usual ... and have slowly started recording music and singing in a band again after a year of not having the energy to give time to this passion. Which helps me get better in itself... what nourishes the spirit nourishes the body etc. Good cycle to get on!
This is great! This explains it perfectly! I’m in this recovery phase. It’s such a long way from my sick phase. I couldn’t even take a shower, I could only eat a mashed sweet potato a day without getting sick and now I’m eating a full meal, taking a shower and doing some house work. Although it is scary to think that I will ever go back to being that sick again, it truly does feel like your body is dying during the bedridden phase. But I am so so thankful to be in this phase! Whoot! Whoot! So thankful for the small things! They mean everything!!
Thank you for this. I get frustrated because I don't think I'm improving but when I really think about it I have made lots of improvements. I need to keep a diary or something!
Juin
Wow, you have just described almost exactly where I am now! Thank you for putting into words what is happening in my life.
I had a setback about 2 weeks ago. I was a bit discouraged, but I looked back at the week before the setback happened and was able to see that I had really overdone things.
I was back just resting and just accepting that I had overdone things.
But compared to a year ago, I did not go crashing down. I was still able to make my own breakfast and do a few things.
In the second week, I felt myself coming back. So even with a bit of a crash, I didn’t go too low and have really bounced back.
It is so encouraging and to hear you describe it so accurately - well, what a nice surprise. Really encouraged.
Great video - it's easy to lose sight because this process is so SLLOOOOOOWWWWWW. I recently bought a puppy and then asked myself if I was crazy, making such a commitment when I'm not well. But it's forced me to get outside daily and I've seen my strength build up with the walks. Im so grateful - it's both a frustrating and a wonderful phase, because you're getting there but it still takes a long time.
How's it going with your puppy? It was comforting seeing your comment because I did the same thing. I worked with dogs before I got ill and some people around me thought I shouldn't do it. It has been really hard but I think it's helped me keep going and brought joy into my life despite my really bad health. My pup's 11 months now and a tricky phase but we'll get there.
Totally agree with this comment. Over the course of my illness... I had a cat for 18 years. Then when she passed, I went 10 years without a pet/companion. I didn't improve as much, became more withdrawn, less sociable, more "woe is me" focused. I eventually go another cat and now feel more connected to my spirit, my heart and life in general. I am much more hopeful and positive. 😻
Love your videos, I've had CFS for 3 years now, I started off getting better and better, but then the past year or so, i've gone done hill.
keep a journal and this may help you to see why you have gone "down hill"
I get these things when a remission happens. Unfortunately it all comes back again. I'm sure I'm so much better for weeks, then bam.
Hey Misty! I hope you've notice improvement in the last year. With regards to your comment here... Watch (track/journal) the length of time of your setbacks, and of your "recovered" times, and of the space between. I noticed at the actual beginning of my recovery....my relapses happened every 3 weeks. Now I don't have actual relapses anymore.... I have setbacks which are easier to recuperate from. AND they might happen every 4-5 months. ...so I have much longer periods of feeling better. Best wishes to you!
This is a great message Toby. I journalled exactly how i felt from first having Cfs to the present. 2 years on.It was slow but sure recovery. Its amazing how far i have come. From bed bound to doing normal things. Telling myself more is a brilliant idea. Thank you Toby. Xx you really have Cfs spot on Toby.. Such great advice. Thank you for giving it to us. Really appreciated xx
I kept a diary from the very begining, even on bad days now I look back and realise how far I've come.
+Sarah Yardley Good stuff!
organicsuperman How are you feeling now?
I should really do this! I think sometimes I forget how severely sick I was until I go back to that phase. Thanks for sharing!
@@tracyhagler2315 how are you now ?
Loosing weight does not have to mean you have improved at all, it can often be the opposite. Many people with CFS loose weight because they have not the energy to cook and eat properly and that is not a good sign.
Elin Persson he mentioned that this coincides with attaining muscle mass.
Not in bed all day anymore. Sleep improving, hope rising! Thanks xo
Not sleeping all day and not being out of it during wake time was huge for me. I can actually do things now. Before I got so little done and was too out of it and not all there.
Thanks Toby. This was very reassuring that my ME/CFS progress is most definitely FORWARD🥰👍
Thanks a lot man for the video. I feel like i am improving, my sleep cycle is better, i am no more allergic to certain foods, i am not annoyed/ irritated with my family and friends. I can cook one meal a day for 5-6 people and clean the house( i do take rest in between though) or can prepare all three(indian) meals without cleaning house.if i can improve a bit more than planning to start.regular exercise and loose some fat on tummy and hips.currently aprox, 70 kg with 5.7".
Dude! That is awesome! Well done. Proud of you!
I can read a book again-that's progress- so yay!
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
so I have pots and cfs have been on benzos the whole time. relapsed hard 3 months ago. my question is can you recover while on benzos?. I've tried to come off and can't . have been sick for a year now.
Great video again Toby - I will need to re-watch this one too. I have been improving so much and watching this has made me realise how much I have been focussing on my limitations rather than appreciating those improvements recently - So ...a change of focus for me :) Thanks as always for your support and advice.
Definitely agree with these. it's really rewarding to look back and think 'look how far I've come!' even if you still feel tired or in pain there is still improvements. The talking one was big for me and annoying my siblings more 😉 great video thanks x
+Emmacookiecrumbles thanks emma!
Great video - so helpful to see signs of improvement that I wouldn’t have picked up on my own.
Thanks so much. I am interacting with my siblings ( 8 of them this summer of Covid.) But I am not annoying them. I have made an effort to change ( lots of criticism over the years ) and that is what I am so pleased about. It is difficult, but the fact that I am able to control myself so much better shows huge improvement in many ways.
Many thanks on all your good advice.
Paula
I actually agree with everything, last few weeks, been noticing up, energy levels and lost a bit of fat, everything else actually came along (number 1 thing was sleeping before 11 for me tho it's not the perfect sleep but better, eating more foods in general and doing the small things I enjoy like hanging out a little more with friends, reducing stress a lot)
Great encouragement! Thank you! Things I didn't even realise but now you point them out I can feel much more alive.
Thank u Toby I love your videos...cfs..is a journey and I agree every little step is a step forward to healing...I feel blessed I just got over pneumonia y bronchitus y have been doing spring cleaning y started my dancing again y yoga....I am getting stronger y but also pacing myself thank u for all the advice...take care..God bless Stacey :-)
+Stacey Del Bucchia good for you!!
I rarely get a bad cold. haven't had flu.. Often, I feel like I have the flu aches but no other symptoms. I just crash and have to lay around for days to get energy. .
Thank you for this video! Lots of Great advice and made me realize I'm actually having small improvements :)
Oh My Goodness! Best video I have seen in ages! And its all true! Wow Wow Wow!!! Thank You!
Love this video so much always a good video to go back to
Really helpful thankyou all I needed was some motivation and to realise - recovering from mono
You are right Toby!
You have just made me realise that I have improved so much even tough I feel I've platoed at the min , do you find people platoe in recovery process ?
Many people who recovered says there is lots of ups, downs and platoes
Recovery and leading a more healthy and fulfilling life does not actually mean that your chronic health condition is cured. You can learn to live a passionate, vibrant, fulfilled life within your limitations of your illness. In REAL life... anyone... whether healthy or not... will always have ups, downs, and plateaus. This is absolutely NORMAL.😘
What does it mean when you go months doing all of those things then have a huge set back that leaves you bedbound again?
Wow! Looks like I'm getting better ( without realizing it;)
What would you say about someone who seemingly recovered for a few years then went right back to being very unwell back to very severe ME
This is awesome, will definitely rewatch it :)
Two days ago I noticed that I'm not avoiding conflicts as much as I used to, so yeah I'm getting better ;)
'You know you're getting better when you start annoying people' haha my favourite one :D
+Lina Lemon That is fantastic and so true about confronting stuff head on!
"Avoiding conflict" is a big one for me, but I'm also an introvert... lol! Having said that... I don't put off uncomfortable things for as long as I used to. I try to get them done or taken care of as soon or as quickly as possible.
How do I reach this point where I’m improving?
I have none of them....
This sounds like depression symptoms too??
Is there any place where you can read this? I need to translate it
I'm just getting worse and worse