How I've improved 🌿👇 Broadly speaking it was a holistic apprach, it was a mix of medication (Sertraline, Quetiapine and Gabapentin), with gently increasing activity, physiotherapy and engaging in CBT therapy and socialising with staff and patients (at Leeds Hospital NICPM). Since hospital I've continued the medications, though reduced gabapentin a little. I have carried on gently increasing my activities, except when I've had a real flare up, in which case I make sure to maintain my activity (not decrease much but not increase). I am much kinder to myself, and prioritise having fun over pushing too much with studying etc. I think for me now, the major thing keeping me on track is keeping occupied with external stuff, such as gardening, planning for the future, walking the dogs and spending time with friends and loved ones.
I'm 6 years into the unbelievable suffering of CFS/m.E. the first 2 years where the worst. My husband had to give up work to look after my son and myself. I watched every recovery story from my bed while crying and going through so many hours of utter bleakness. I missed out on so much with my 3 year old son then when he was 4. I built myself up slowly and my husband bought me an e bike to get to places. When I get there I lay down on a carry mat and rest. Never give up. You will get better. I'm much better than before but still very much battling
Conner I’m 20 years m.e. I couldn’t function on the meds that your currently taking they completely wiped me out so I’m happy to hear your seeing some improvement God bless
Thank you for sharing your experience. It's awe inspiring to see how much you've recovered! Sadly for me during the past 3 years, I've watched my health slowly decline. More realistically it's been a series of slight progressions with major steps backwards. I've gone from practicing ashtanga yoga to barely able to walk as, little by little, I'm having bits of my life taken from me. In the beginning, I was told by my doctor that I had health anxiety and so put myself under pressure to get well by any means necessary. We can all guess how that went! (And in what other illness does anyone do that???!) Luckily, I don't suffer any pain whatsoever, at least not anymore (my M.E started with severe IBS). I thank God for that because I don't think I could cope with that as well. My main symptom is fatigue, weakness, digestive issues and brain fog/memory problems. Bad enough that I'm a living, breathing burdon on society, unable to do anything, with my kids grudgingly having to care for me, but for me, the most disturbing thing is the lack of sleep. I've had insomnia on and off for 6 years. This week was really bad, I hardly slept at all. I've almost forgotten what a good night sleep feels like. My muscles cramp up whenever I try to exert them, yet I cannot get them to relax at night. It's quite upsetting to see how weak I am becoming. In fact, 10 years ago I had anorexia and am weaker now than I was then. I also lost a lot of my hair. Did you experience that at all? Anyway sorry for rambling. It's just it's not often that I can share my experience with someone who understands. The people in my life are not very helpful or understanding. Apart from a partner who could care less, I have no friends. In fact I'm ashamed and don't want anybody to see me like this. My partner and kids don't really get it and I'm exhausted trying to explain it to them. I have no help. I'm too exhausted to fight with doctors. I had so many plans and they're fading one by one. On the positive side, I manage to keep myself occupied with jewellery making. My plan is to sell some but that feels like an overwhelmingly massive task atm. Just scared that my new found hobby is going to be taken away. Luckily I'm not bed bound and do try to stay cheerful, as I've noticed that any negative thoughts make me crash. Thanks for mentioning the M.E centre. I will be mentioning that to my GP, who up until now has been as much use as a chocolate fireguard. Best of luck x
Conor it's so lovely to see your beautiful face again, thank you for your update. I often think of you as I too suffer like you and totally understand everything you say about life with CFS/Chronic illness. So sorry you've been so unwell, I heard on the news last week there is a severe case of the Flu going around more people have been hospitalised with it this year but as you say it could be like a strain of Covid. It will take you time to recover so be careful. You have lots of great ideas, your mind is going 24/7 and I'm the same. It's good to make goals and have purpose within having Chronic illness as out mental health needs this! Yes, please take it step by step, listen to your body and be wise with your decisions. I'm in a really bad flare just now, I was doing so well (maybe too well) then it just hit me full on with no warning which I'm surprised at as I usually get the warning signs then obviously slow it all back down again. Never mind I will rest and fingers crossed get back to my baseline. You take care and remember.....Little steps and you will still get to your destination. Happy 2023 to you and your family. X
Hiya Conor, sorry that you came down with a dose of covid / or flu, that's the last thing you needed as I'm sure the CFS drastically reduces your body's natural defence system. You certainly know best now how to pace yourself carefully to prevent any setbacks. Exciting project to get involved with on the camper van, look forward to seeing your progress.
Thanks Brett! Yes getting over the cold now which is a relief. As for the van, very exciting, though struggling to drive it! Burned the clutch out today, can't seem to figure it out 😅
Hi Conner great to see you in your camper van sorry to hear you had such bad cough and been unwell but very well done for all your progress and your future hopes and plans realy well done to you your realistic and taking it slowly so glad you have your brother to help you you have come a long long way you take good care great to hear your update lots of love to you and your family from fellow ME warrior tricia 💞💞
Hi Conor, having a hard time to write again but just wanted to thank you for your content. I suffer from moderate ME which has gotten worse from a wrong medication in combination, with some similar flu you described you've unfortunately experienced. My twin is also sick with another thing right now but I haven't catched it, hopefully you won't either. Amazing to see you're where you are otherwise! I put your videos on in the background when I'm pretty much bed bound, they help so much!
Hi, so sorry to hear you're feeling so rough. I hope the doctors can perhaps change the medication around to help you. Things can get better, and I came from a place of severe M.E and had to be spoon fed at my worst. Hold on in there, hopefully the new year brings you better health. All the best 🌿
Hi, so sorry to hear you're feeling so rough. I hope the doctors can perhaps change the medication around to help you. Things can get better, and I came from a place of severe M.E and had to be spoon fed at my worst. Hold on in there, hopefully the new year brings you better health. All the best 🌿
Good to see you improving Conor, the camper looks like a great project to keep you active and you are doing well controlling the urge to do too much. I'm on the way down so it is nice to see that it can get better, I look forward to your next video. Have a really Happy New Year.
I’m so glad you’re doing okay. Bless you with health and happiness and happy new year here’s to 2023. 🙏 Ps the cold is harddd ! I got brain fog from rona but it wasn’t too bad
Thanks! I have done some similar programs to those. Essentially just watching out for those thoughts and worries about the pain (my main symptom), and gently redirecting my attention elsewhere. They helped a little bit. I also had traditional CBT whilst in hospital, which along with the meds and physio etc, helped a lot. 😊🌿🙌
I'm so glad to hear the update! Sorry you were sick! Im glad overall you are doing better and have such great plans for the future! I love the camper van! Remind me what you did to get to where you are in your recovery? I really want this year to be my year to make a lot of progress
Broadly speaking it was a holistic apprach, it was a mix of medication (Sertraline, Quetiapine and Gabapentin), with gently increasing activity, physiotherapy and engaging in CBT therapy and socialising with staff and patients (at Leeds Hospital NICPM). Since hospital I've continued the medications, though reduced gabapentin a little. I have carried on gently increasing my activities, except when I've had a real flare up, in which case I make sure to maintain my activity (not decrease much but not increase). I am much kinder to myself, and prioritise having fun over pushing too much with studying etc. I think for me now, the major thing keeping me on track is keeping occupied with external stuff, such as gardening, planning for the future, walking the dogs and spending time with friends and loved ones.
How I've improved 🌿👇
Broadly speaking it was a holistic apprach, it was a mix of medication (Sertraline, Quetiapine and Gabapentin), with gently increasing activity, physiotherapy and engaging in CBT therapy and socialising with staff and patients (at Leeds Hospital NICPM). Since hospital I've continued the medications, though reduced gabapentin a little. I have carried on gently increasing my activities, except when I've had a real flare up, in which case I make sure to maintain my activity (not decrease much but not increase).
I am much kinder to myself, and prioritise having fun over pushing too much with studying etc. I think for me now, the major thing keeping me on track is keeping occupied with external stuff, such as gardening, planning for the future, walking the dogs and spending time with friends and loved ones.
I'm 6 years into the unbelievable suffering of CFS/m.E. the first 2 years where the worst. My husband had to give up work to look after my son and myself. I watched every recovery story from my bed while crying and going through so many hours of utter bleakness. I missed out on so much with my 3 year old son then when he was 4. I built myself up slowly and my husband bought me an e bike to get to places. When I get there I lay down on a carry mat and rest. Never give up. You will get better. I'm much better than before but still very much battling
I just watched all your videos. I’m glad you’re so improved. I’m mostly housebound with M.E. (Long Covid). You give me hope.
Conner I’m 20 years m.e. I couldn’t function on the meds that your currently taking they completely wiped me out so I’m happy to hear your seeing some improvement God bless
Thank you for sharing your experience. It's awe inspiring to see how much you've recovered! Sadly for me during the past 3 years, I've watched my health slowly decline. More realistically it's been a series of slight progressions with major steps backwards. I've gone from practicing ashtanga yoga to barely able to walk as, little by little, I'm having bits of my life taken from me. In the beginning, I was told by my doctor that I had health anxiety and so put myself under pressure to get well by any means necessary. We can all guess how that went! (And in what other illness does anyone do that???!) Luckily, I don't suffer any pain whatsoever, at least not anymore (my M.E started with severe IBS). I thank God for that because I don't think I could cope with that as well. My main symptom is fatigue, weakness, digestive issues and brain fog/memory problems. Bad enough that I'm a living, breathing burdon on society, unable to do anything, with my kids grudgingly having to care for me, but for me, the most disturbing thing is the lack of sleep. I've had insomnia on and off for 6 years. This week was really bad, I hardly slept at all. I've almost forgotten what a good night sleep feels like. My muscles cramp up whenever I try to exert them, yet I cannot get them to relax at night. It's quite upsetting to see how weak I am becoming. In fact, 10 years ago I had anorexia and am weaker now than I was then. I also lost a lot of my hair. Did you experience that at all?
Anyway sorry for rambling. It's just it's not often that I can share my experience with someone who understands. The people in my life are not very helpful or understanding. Apart from a partner who could care less, I have no friends. In fact I'm ashamed and don't want anybody to see me like this. My partner and kids don't really get it and I'm exhausted trying to explain it to them. I have no help. I'm too exhausted to fight with doctors. I had so many plans and they're fading one by one.
On the positive side, I manage to keep myself occupied with jewellery making. My plan is to sell some but that feels like an overwhelmingly massive task atm. Just scared that my new found hobby is going to be taken away. Luckily I'm not bed bound and do try to stay cheerful, as I've noticed that any negative thoughts make me crash.
Thanks for mentioning the M.E centre. I will be mentioning that to my GP, who up until now has been as much use as a chocolate fireguard. Best of luck x
Hope you’re doing okay Conor! Glad to see you doing okay, and sorry to hear about your cold/covid, stay strong you’ve got this!
Conor it's so lovely to see your beautiful face again, thank you for your update. I often think of you as I too suffer like you and totally understand everything you say about life with CFS/Chronic illness. So sorry you've been so unwell, I heard on the news last week there is a severe case of the Flu going around more people have been hospitalised with it this year but as you say it could be like a strain of Covid. It will take you time to recover so be careful. You have lots of great ideas, your mind is going 24/7 and I'm the same. It's good to make goals and have purpose within having Chronic illness as out mental health needs this! Yes, please take it step by step, listen to your body and be wise with your decisions. I'm in a really bad flare just now, I was doing so well (maybe too well) then it just hit me full on with no warning which I'm surprised at as I usually get the warning signs then obviously slow it all back down again. Never mind I will rest and fingers crossed get back to my baseline. You take care and remember.....Little steps and you will still get to your destination. Happy 2023 to you and your family. X
Thanks so much for the kind comment. I really hope you get back to where you were soon! 🙌🌿😊
@@conorhope2307 your welcome. Take care x
Hiya Conor, sorry that you came down with a dose of covid / or flu, that's the last thing you needed as I'm sure the CFS drastically reduces your body's natural defence system. You certainly know best now how to pace yourself carefully to prevent any setbacks.
Exciting project to get involved with on the camper van, look forward to seeing your progress.
Thanks Brett! Yes getting over the cold now which is a relief.
As for the van, very exciting, though struggling to drive it! Burned the clutch out today, can't seem to figure it out 😅
Good to see you doing well. Been keeping up with your story since I have Long Covid and been house bound a lot of the time.
Thanks so much! I really hope you can make some progress soon. Wishing you all the best 🌿🙌
Hi Conor hoping you’re all well, coming from a young guy myself at 21 suffering for 5 years hoping I can recover aswell :)
Hi Conner great to see you in your camper van sorry to hear you had such bad cough and been unwell but very well done for all your progress and your future hopes and plans realy well done to you your realistic and taking it slowly so glad you have your brother to help you you have come a long long way you take good care great to hear your update lots of love to you and your family from fellow ME warrior tricia 💞💞
Thanks so much. Sending lots of strength to you. All the best 🌿🙌😊
@@conorhope2307 thanks Connor you too xx ,❤️
Hi Conor, having a hard time to write again but just wanted to thank you for your content. I suffer from moderate ME which has gotten worse from a wrong medication in combination, with some similar flu you described you've unfortunately experienced. My twin is also sick with another thing right now but I haven't catched it, hopefully you won't either. Amazing to see you're where you are otherwise! I put your videos on in the background when I'm pretty much bed bound, they help so much!
Hi, so sorry to hear you're feeling so rough. I hope the doctors can perhaps change the medication around to help you. Things can get better, and I came from a place of severe M.E and had to be spoon fed at my worst.
Hold on in there, hopefully the new year brings you better health.
All the best 🌿
Hi, so sorry to hear you're feeling so rough. I hope the doctors can perhaps change the medication around to help you. Things can get better, and I came from a place of severe M.E and had to be spoon fed at my worst.
Hold on in there, hopefully the new year brings you better health.
All the best 🌿
Good to see you improving Conor, the camper looks like a great project to keep you active and you are doing well controlling the urge to do too much. I'm on the way down so it is nice to see that it can get better, I look forward to your next video. Have a really Happy New Year.
Thanks so much! 🌿🙌Sorry to hear you're feeling worse, but things really can get better. Hang on in there 💪
Hi Conor so good to hear all your news. You look so well, loving van and your future plans. Take care love Mo xx and dave C.
Thank you! All the best 😊🌿🙌
I’m so glad you’re doing okay. Bless you with health and happiness and happy new year here’s to 2023. 🙏 Ps the cold is harddd ! I got brain fog from rona but it wasn’t too bad
Thank you! All the best to you 🌿🙌
Could you go into detail about what the step by step process was with doctor you saw in hospital, that enabled you to start your recovery?
I've posted overviews on my Instagram. @bedboundbotany
All the best 🌿🙌
How did you get sick? How did you make progress? Your videos are s little vague. Can you make a video with more details on how you improved exactly?
I will start thinking about a video to make regarding what I did to improve
Also see my video "Treatment for my severe M.E/C.F.S"
Great to see your progress! Just out of curiosity, have you done any brain retraining programs such as DNRS, Gupta, Ans Rewire, CFS School, etc?
Thanks! I have done some similar programs to those. Essentially just watching out for those thoughts and worries about the pain (my main symptom), and gently redirecting my attention elsewhere. They helped a little bit. I also had traditional CBT whilst in hospital, which along with the meds and physio etc, helped a lot. 😊🌿🙌
PS advance happy new year
I'm so glad to hear the update! Sorry you were sick! Im glad overall you are doing better and have such great plans for the future! I love the camper van!
Remind me what you did to get to where you are in your recovery?
I really want this year to be my year to make a lot of progress
Broadly speaking it was a holistic apprach, it was a mix of medication (Sertraline, Quetiapine and Gabapentin), with gently increasing activity, physiotherapy and engaging in CBT therapy and socialising with staff and patients (at Leeds Hospital NICPM). Since hospital I've continued the medications, though reduced gabapentin a little. I have carried on gently increasing my activities, except when I've had a real flare up, in which case I make sure to maintain my activity (not decrease much but not increase).
I am much kinder to myself, and prioritise having fun over pushing too much with studying etc. I think for me now, the major thing keeping me on track is keeping occupied with external stuff, such as gardening, planning for the future, walking the dogs and spending time with friends and loved ones.
@@conorhope2307 that's great! Thanks so much for sharing!
@@kathystoner5239 You're welcome 🙌😊🌿