How I Went from Bedbound with ME/CFS to Living My Dream Life | Suze's Recovery Story

[@susanmackenzie1251]

Great to be able to share my story Toby and hopefully give people hope out there!

[@bonniespruin6369]

Thank you for sharing!

[@davewantsmoore]

I really needed some hope. Thankyou.

[@sonneeis3396]

I am so stoked by this interview. ME/CFS Longcovid since April 2022. Step by step I am feeling better, with a similar strategy. You give so much hope. I will read your blog for sure. We are not alone in this game. THANK YOU!❤

[@Happy-olive]

I resonated with this one a lot, thank you. I am 29, almost 30 and in that “I reallly don’t want to live with my parents” phase. I am currently trying to figure out if moving to the nearby village (peaceful, beautiful, by the beach, but no friends or support other than parents) is better or moving back to the city, where I have more friends and things to do but soo much further from my parents! I am perhaps at a 30/40% recovery - I can walk around the house, up the stairs, drive 5 minutes, hold a conversation with someone without throwing up (🎉) take very gentle trips out of the house (we go park in a lay-by with a nice view!) and have even managed to do few graphics projects albeit slowly.My family do cook my meals and do the cleaning and I can’t exercise or walk more than 3 minutes on the flat. I’m worried the transition will drain me and the anxiety of not having my family around will set me back, but parents house is not very suitable to be as is! So much to navigate! 😮 so glad to hear recovery stories like this!

[@karendeluce9131]

I absolutely loved this recover story. So much hope and good advice. So brilliant that Suze is fully recovered. Something that really resonated is when she referred to the process of recovery being likes snakes and ladders. It really is such a good metaphor. It made me think though, if in the board game, you keep going forward, you will eventually get to the top of the board despite the "snake" set backs along the way.

[@jenniferfoster2200]

Great interview. Thanks so much Suzie and Toby.

[@CFSHealth]

Glad you enjoyed it

[@ronaldwilliams2962]

I was 28 years old in 1984. I was hit hard with CFS. I was put out of action until 1991 until i started recovering. By the mid 1990's i was 90 percent recovered. By the year 2000 i had made a complete recovery. I was so thankful I could lve a normal life again. I en joyed my life until September of 2020. I was hit with CFS again. I am into it 3 1/2 years again. History repeated itself for me. I dont know what my outcome will be this time since i am 68 years old. But i am going to try my best to recover again. I want the younger people to know that if you do recover be thankful and enjoy your life to the fullest. Because it can reoccur again later in life.

[@AnneAlready]

Sorry you've been hit again and hope you'll find the keys to recovery again. What do you think most contributed to your recovery the first time? Do you think yere you typical of many people who seemed to develop ME in the 1980's (and since) - IE busy, high achieving.....extra conscientious etc?

[@nickh7724]

You’re not alone, I was hit when I was only 17 years old in 2018, I recovered about 90% a year half ago in 2022. I was hit with COVID and appendicitis at the same time (viral, and bacterial) and 6 months later I went from working full time and traveling state to state, to bedridden, and horrible PEM after exertion. I’m hoping since I was recovering before it will happen again.

[@ronaldwilliams2962]

@@nickh7724 Sorry to hear you were hit with CFS again so soon after your first recovery. I have heard that major trauma can set off CFS in some people. Having COVID and a appendicitis at the same time must have been unbearable. I wish you the best and I hope you make a complete recovery. The fact you are still young is working in your favor. The body has amazing recuperative power.

[@mattkay52]

Thankyou both for an amazing success story

[@CFSHealth]

Thanks for listening!

[@sarahlmyatt]

This is the most inspirational recovery video yet for me. Thank you for creating and sharing it. It has really given me hope today! Xx

[@YVMARYVMARY]

Yes! Thank you for sharing.Thank you Toby and team.

[@CFSHealth]

You're welcome!

[@SunnyLilac09]

Loved this interview! There was so much of my reality in it. I really feel uplifted :) Thank you!

[@CFSHealth]

Glad you enjoyed it!

[@bonniespruin6369]

I've been finding that I have to slow the play speed of videos because my brain fog is so bad I have to keep replaying things. If I listen to things slower, my brain does better. Thank you for your videos.

[@Happy-olive]

I’m interested to understand the parameters of the no venting fb group - what do you define as venting? I don’t want to participate in all the self pity, I agree it’s unhelpful but I also appreciate that having our stories heard it’s incredibly important too. I’d love to have someone that’s gets it hear my story, hear what I’ve been experiencing and have it acknowledged but it has many negative difficult aspects (as I’m sure most of these stories do) so would it count as venting? Really enjoying your content, been so so helpful. Thanks

[@Kristina-wz9gl]

having the same question and thoughts.... i've made the experience that repressing my emotions and thoughts can be very harmful ... and having a safe space where to express them is worth a million. it's very important recognizing them and not judge ourselves for having them. @cfs health: I'm also very curious about your no venting rule, pls give us a feedback!

[@AnneAlready]

A feature of many ME people is that they feel deeply/empathise when others talk about their symptoms. I think it is important to be heard so your nervous system can start to become "unstuck", but these kind of "no vent" support groups absolutely MUST be recovery focused and not symptom focused or they only serve to keep everyone stuck (despite everyone's good intentions). It's not about repressing, it's about having complete conviction to changing focus. There are already ME forums out there where the science is unpicked and where people enjoy support for their challenges but you will also notice there are not many recovery stories there sadly.

[@sarahlmyatt]

I believe it means don’t just vent. It’s about saying and sharing how you are feeling and your experience yes but don’t leave it there. Venting by itself doesn’t create change or give you energy. So sure share how you are feeling but also want and look for change and to improve it - so ask for help or advice and also be reflective and think about how you are feeling and what you might do to help yourself feel better.

[@sallyseabright1042]

Thank you Suzie and as always Toby ! I am on the waitlist and at the moment binge watching every inspiring recovery story in and out of bed during a PEM crash with a nasty viral setback!!! Feels cove like but no test kit so not sure but scarily awful after a week of isolation again!!! I was doing ok but life made too many demands too quickly I was not able to or did not have strong enough boundaries in place to say NO to !!!! But am looking forward to some support and guidance on how to pick up and get back on track....do I need to go back to square 1 original baseline or can I safely pick up where I left off where I was last healthy end of last year? Anxiety around this .......helpful to hear your thoughts on getting back after Covid Suze...Thanks, Sally UK

[@MariskaWoudenberg]

This is a good recoverystory. I’m saving this to watch/hear again later. Could you share the link to the blog?

[@CFSHealth]

It’s in the description :)

[@jaynesierakowska3120]

That was good.Thank you. Is there a good news interview that would help a (financially broke) 66year old retired UK woman please? ME/CFS for 5 years.

[@KarenWood-q7u]

I absolutely agree Jayne! I'd like to see one as well, as a 63 year old, unable to work so relying on benefits, UK woman. ME/CFS coming up for 10 years. Best wishes to you.

[@jaynesierakowska3120]

@@KarenWood-q7u Thank you Karen and sorry to hear you have had it for ten years. The videos I have watched so far seem to be by young and apparently well off people. I definitely cant afford to do the course but I'm hoping to pick up some tips from the recovery videos. Unfortunately CFS Health put a heart on my question but didnt point me to a more appropriate video. I hope you recover and thank you for your reply. ❤

[@KarenWood-q7u]

@@jaynesierakowska3120 No, I can't afford the course either. I came across CFS Health early last year and at first I was hugely sceptical, and also fearful - is this real or a con? - a worry I have about just about anything online. But I watched a few of the videos and started to feel more inquisitive about it, so eventually opened a F'book account (I don't like social media) exclusively to access the CFSHealth page. I've watched loads of the free videos now and am trying to follow the help that they provide. I find having a new video to watch each week something to look forward to, and the training videos a reassurance. I am still in that place Toby talks about of not really being able to totally believe that I can get better, but I figure that this advice is all for good health, so following it has to do me good generally at the very least. I have noticed some improvements in small ways, which go up and down; I'm just aiming to keep going and see what happens. If I can actually get better I will face the challenges that would bring when I come to them! We keep on keeping on... K

[@AnneAlready]

There are a couple on Raelan Agle's channel. One's a fairly recent interview - a woman in Surrey. She did use a pacing and brain retraining/meditation approach and in her case that just seemed to be the thing that allowed her to begin recovery.

[@jaynesierakowska3120]

@@AnneAlready many thanks Anne, I'll have a look.

[@GracielaGordon-v2w]

😮omg this is me in this interview in particular , doing the breaks...

[@Ririsimi]

When you say you used to overexercise, what kind of exercise was it if you dont mind sharing ...

[@24nikita]

Do you now drive to work in your Porsche as you`ve always dreamed of doing on the back of suffering people. Become rich like me and join the CFS Healer programme and help others from suffering.