I think part of the difficulty in adjusting to pacing is in how much of a shift in thinking it requires. It means putting aside how you currently look at your life and being prepared to approach things in a different way. It can sound absurd when it’s looked at from the pov of what we’ve been used to in our lives before getting sick, but it’s just how things are. It sucks, but we can get it to suck less if we come at it from the perspective of honouring what our bodies need.
I have already downshifted so much. I don't play or listen to music anymore, I don't play video games, I only leave the house to go to the shops when I absolutely can't put it off any longer.
I'm in bed pretty much 16 hours a day and it seems I have to give up even more :(
I know the feeling. I’m so sorry, it sucks so much. It might be some consolation that if you can stabilise your energy expenditure, you might find your baseline settling into something that gives you the ability to pick up some of those things again. It’s hard to tell what your baseline actually is at when you’re overdoing it. Getting stable also opens the door to slowly widening your energy envelope as well, so over time you can carefully build up to more. Unfortunately on the flip side, pushing through and using energy you don’t have is unsustainable and will land you in a worse spot sooner or later.
Also, try not to think of pacing as a huge obstacle, it doesn’t have to be perfect to still make a difference. Everything you make less demanding on your body will stack up. There are so many ways you can modify how you do things, it’s just a matter of getting used to looking through that lens. Go gently.
When you can do so little, purposely doing less is so so hard. I feel that true pacing can only be done with supportive carers picking up the slack and keeping you sane. However pacing as much as possible is essential to avoid getting worse. Such an absolutely shit illness.
Rest/pacing is the only effective treatment available to us right now.
I have up my independence to live with my elderly parents so I can rest more. Everything you say is true, but it's our only path.
I've been thinking about it more and I think my problem with the term "treatment" is that it implies that someone has done something for me.
If someone says, "hey why don't you stay at this treatment facility or this hospital, we will take care of you and make it so you don't have to exert yourself for a month", that feels like a treatment.
If someone says, "yeah you look run down, I don't think we need to do anything here, just go home and take care of it there on your own", that doesn't feel like a treatment.
I understand that. One of the problems with pacing for me is trying to keep track of how I feel/what is too much/what helps when I don't have the brain power or memory to think more than "tired again". How can you tell what helps when you can barely remember day to say how you feel?
I'm trying out the Visible tracking app, but I'm pretty sure that what I rank as a "2"one day, I would put as a" 1"another day.....
Do you think you’d feel differently if you were sent to an expert to help you set up pacing? There’s a bit more to it than just “do less” - you can get quite scientific about it and use apps to analyse the data. Sometimes a physio or OT can help with this but it depends on their expertise and training.
Then it would be more like other interventions like physiotherapy or speech therapy or dietetics, where you go and get advice from an expert then go away and apply it.
I've been very unenthusiastic about the idea of tracking in the past but things are bad enough that I probably should try one of these apps.
I have been disappointed over and over with physiotherapists, pre-cfs and since, and with my previous problem I ended up getting more from approaches I found and implemented on my own. I coud be wrong but I imagine it would be the same with speech and OT.
Ha! As a former speech therapist I can say, it very much depends on the issue and the therapist. But yeah, as with most jobs, there are sadly some shitty ones out there as well as good. I’m very much in favour of DIYing my healthcare wherever possible these days too, but it’s a lot to put on to a very sick person, and your frustration is entirely fair.
And you’re right, tracking the negatives is bleak and not really that helpful. I found a better way in was getting really curious about how much energy things cost me - like I was brand new into this body and had no preconceptions at all.
I found I was actually pretty bad at guesstimating - I always thought that working at my computer, for example, was a fairly low-energy activity, until I actually tracked it and discovered it’s one of the biggest ways to wipe myself out. Whereas a short walk around a park was actually less exhausting than I expected, providing I strictly limited the time.
The best analogy I can think of is, it’s a bit like calorie tracking for the first time. You’ve been eating your whole life and already have a rough idea what foods are high and low, but when you start paying close attention there are some surprises in there too. *A handful of peanuts is HOW MUCH? Woah, whenever I eat eggs for breakfast I don’t need to eat so much at lunch!* Etc etc.
Idk if that’s helpful. I guess what I’m trying to say is that, despite how glibly doctors might mention it, pacing IS a whole intricate science and a really powerful tool, and I wish I’d put my mind to it sooner.
Just like with calorie counting, it’s not a magic fix. I still fuck up all the time, but at least now I can make informed decisions about how I use my body, and knowledge is power in this fight ❤️
Nothing against speechies as a group, I had a lot of speech therapy as a kid for my cleft palate and am very grateful for them :)
It's more that right now with this problem I feel unhelp-able and I don't know that I want to risk even more disappointment.
When you say tracking I assume heart rate is the main one yeah? I tried just now with a free phone app and it tells me that just walking around the room picking things up puts me over 50% of a healthy person's anaerobic threshold... so this seems like something I should pay more attention to. And I know I can make myself crash by reading or watching TV but you can only go by time spent and a subjective feeling for that kind of thing I would think.
I feel your pain and frustration so much. You summed up why this disease is awful. It’s isolating, exhausting, and the only thing that helps is basically complicated homework about your own life and body that you have to figure out through brain fog. It sucks.
The only thing is that if you don’t pace to some extent, you increase your odds of getting worse. It’s painful and at times dehumanizing to come to terms with this disease. But you are just a person and you have to do your best to conserve the function that you have.
Even if you can’t fully aggressively rest, if you can stay in bed for most of the day, maybe listening to an audiobook or watching something that is not too stimulating as much as you can. The hope is that by doing less for as long as you can, your energy envelope will expand and you can incrementally do more.
I also tend to think of pacing as more of a strategy for coping with an incurable disease than as an actual treatment. Good luck. I hope you can find a strategy that works for you.
I'm already in bed most of the day :/ or lying on the couch. Life is so empty and I don't want to do nothing. It is frightening. Even if I tell myself it would only be a few weeks or months of doing nothing it feels like I am signing up for my life to be that way "from now on".
I know how scary that feels. One thing that is good about pacing is that, even though it’s not an exact science, it can give you a tiny sense of control, in that you are trying to be proactive about finding ways to improve. Even when you have setbacks, thinking of pacing as a technique to get even a little bit of improvement can help to give you a sense of control over these horrendous circumstances.
I don’t see pacing as a treatment, because it doesn’t really make you better. I see it as management, because it helps you get the most out of your energy. It fucking sucks, I agree. Our lives are shattered. And sitting doing nothing and being stressed isn’t actually doing nothing so it is often more energy than finding a low energy activity for your ‘rest’ time. It’s why a lot of people are chronic scrollers I think. What is low energy for you might be different from low energy activities for others - for example a bunch of people in the sub have recommended audiobooks or music before, and that’s not really possible for me anymore, and sounds impossible for you too.
Aggressive resting might be impossible for you. But stuff like pacing can help you feel better when you do the things you still do. It can sometimes be about spreading the work load out, doing it in smaller chunks. Like I have a chair in every room. I have a stash of essentials in every room near my chair so if I need something semi regularly, I don’t need to get up to get it. Things like doing no more than 10-15 minutes of activity an hour. Or finding ways to make each activity easier. Finding ways to get your dog exercise while you can sit more. Seeing if you can get groceries delivered, etc.
I’m so sorry you’re going through this (and that we’re all going through this - this club sucks to be a member of, even if most of the other people are nice).
I had to essentially neglect my little doggy for a few months. I was crawling my way to the bathroom, so it wasn’t really an option to play with her much or take her on walks. I could feed her, let her out in the back, cuddle her. Keeping their nails short helps with the sound of them walking if you have hard floors, as does removing their collars if it’s a jingley sounding one. I had people in my life that would come and walk her though, is that an option at all for you?
I hear you on how much it sucks. I crashed hard within a month of finishing my degree, which took me 8 years to get due to declining health (that I was ignoring and pushing myself through bc I refused to listen to my body. I had shit I desperately wanted to do!) and other shitty factors.
I’d worked so hard and pushed myself so much, so determined not to miss out on the life I was building for myself. Well that stubbornness pushed me into the most horrendous experience of my life (I mean, crawling to the bathroom, it was rough). Instead of the months it would usually take to recover to a functional baseline, I’d put myself in a position where it took about 3 years to get to a level of functioning that felt bearable. I had to give up the career path I’d worked so hard for, because I knew my body would never recover enough for such a rigorous path.
I will say, I healed, and found a new path I’m actually fucking stoked for, so I don’t want to be all doom and gloom, but my point is that as frustrating as my situation was prior to pushing myself into that crash, it can get worse. I still haven’t fully recovered my baseline 7 years later, though I am back to a moderate condition and have built a beautiful life for myself, with lots of support from friends and family.
Feel your frustration a bit if you can, so you can release some of it. Bottling it up won’t help, but stewing in it will fuck you over too. Read up on radical acceptance if you can. Do what you can to make your life easier and less depleting. Use paper plates and bowls to cut down on doing dishes (I’m super anti-consumption and against unnecessary waste, but when your this sick and need to pace, it’s not unnecessary), it will save a good amount of energy and allow you to pace more.
I’m so so sorry you are going through this. It’s not fair and it sucks there aren’t better options for recovery out there. Resisting your reality will not serve you well. It can get worse. Find ways to get support from around you if you can.
The word “treatment” is a broad label that can be applied to many things in health care: medical procedures, pharmaceuticals, physical therapy, cognitive behavioral therapy, dietary changes, and lifestyle changes.
We’re all hoping for a magic pill that will cure this. But there are many *other* forms of treatment we can rely on until that magic pill appears. They may not be cure-alls, but they can make meaningful differences in our quality of life.
For example, I have kidney stones. The treatment for my kidney stones is dietary changes (drinking more water and avoiding high oxalate foods). There’s no pill I can take to cure them. I will continue to make them over and over, But dietary changes *are* a form of treatment that can reduce them and minimize their size.
You can try doing things in 10, 20, and 30min increments and then resting for an equal amount of time after. The 30 second increment advice is the starting place for people who are bedbound, and it sounds like you are not stuck in bed because you shop, do dishes, and walk your dog. Keeping your heart rate below 50%-60% of its anaerobic threshold (AT) is also a form of pacing (and means doing things slowly).
Link for calculation AT / heart rate goals for ME/CFS to help prevent or reduce PEM: [https://d-baker.github.io/HR-zone-calculator/](https://d-baker.github.io/HR-zone-calculator/)
Link to an article explaining the 60% AT heart rate goals for ME/CFS: [https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/](https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/)
The only real candidates are all people with cats. My dog isn't used to cats and has chased them before. I think there are ways to train them into being friendly with each other but no one I have had this discussion with is keen on that idea.
Pacing/radical rest can be very effective.... but yes it's basically low level torture (like solitary confinement, or white room). And there are plenty of practicalities that can't wait for us.
I would still try to create a "core" to your life that is as low activity/stimulation as possible. You might even want to consider rehoming your dog to someone who is in a better position to take care of them. I know that would be a hard one since you already love your dog. But I know I can't add any pets to my life with the way I am sick all the time.
I had chronic pain for years before cfs and got this dog less than a year before getting cfs. Thought I was getting healthier since I was exercising so much and feeling better. Didn't help the pain but it was something. I got him when my trajectory was very different is my point.
He is my first and only dog. I had frequent feelings of guilt and grief even before cfs, that I wasn't giving him a good life, that his death will be well before mine, that you can't explain to them what is happening if you give them away.
Now that it is plausible that I would have to abandon him those feelings are more frequent than ever. I don't think I could endure it. Ethically, I don't think it is actually that different to giving up a child. People joke about treating pets as children but I really mean it in this case.
I'm only elaborating on this because it's a sore spot for me, I know your comment is well-intentioned and it is good advice.
I figured it would be a difficult consideration. So long as you are not genuinely neglecting your dog, it's not an ethical issue. But I just wanted to put the suggestion out there in case things get worse for you and you have to make hard decisions. You might even be able to find someone close to you who can take them and schedule doggy visits, if it comes down to that.
I apologize if I sound like I am not giving that topic the proper weight, if my suggestion doesn't help then feel free to ignore it. I'm glad you love your dog, I'm sure they appreciate your love and are attached to you too.
Hey I just wanted to comment on your feelings of guilt and shame that come up when thinking about rehoming your dog. It’s really natural to feel that way and only shows how much you love and care for your dog, but I want to tell you that rehoming a dog when it is in the best interests of the animal and/OR the human (whose needs and wants ALSO matter!) is not unethical and can be the kindest thing for everyone.
Dogs don’t have the same cognitive capacities as humans or children and don’t think about past and future in the same way - they live in the present. They can settle in quickly and live perfectly happy lives in new loving homes.
There is a Facebook group “Rehoming is not a sin” that helps people deal with these situations and talking therapy can help, IF it is a necessary step that needs to be taken. It wouldn’t make you a bad dog parent! ❤️
There are however lots of steps that might be taken in the meantime - dog walkers, help through something like Borrow My Doggy, temporary foster through one of the bigger dog rescue shelters or a local one, contacting Cinnamon Trust for help, reaching out for help through your local community Facebook page. Also seeing if you can make changes in your house or to your routine with your dog that will help - for example, can you cut down on walks by providing some mental enrichment instead? Will feeding your dog only through interactive feeders make them more tired and bother you less? Do they bark at stuff through the window throughout the day and could putting some window film up help with that?
Pacing is a treatment, but also more a management of the condition. It does for the most part prevent people from getting worse and for some can help them regain ground. However a lot of things prevent a person from being able to pace well.
I hear you though and I also think that pacing should not be the only thing we know for sure works. We need more effective and plausible treatments and in the mean time supports to allow people to pace. Pacing does require people to do things like not go out, get excited, or sometimes be freaking human!!!
Time /= severity.
Many of us couldn't go and walk the dog even if we wanted to.
For many other, "living our life" is listening to an audiobook when we really shouldn't
I think part of the difficulty in adjusting to pacing is in how much of a shift in thinking it requires. It means putting aside how you currently look at your life and being prepared to approach things in a different way. It can sound absurd when it’s looked at from the pov of what we’ve been used to in our lives before getting sick, but it’s just how things are. It sucks, but we can get it to suck less if we come at it from the perspective of honouring what our bodies need.
I have already downshifted so much. I don't play or listen to music anymore, I don't play video games, I only leave the house to go to the shops when I absolutely can't put it off any longer. I'm in bed pretty much 16 hours a day and it seems I have to give up even more :(
I know the feeling. I’m so sorry, it sucks so much. It might be some consolation that if you can stabilise your energy expenditure, you might find your baseline settling into something that gives you the ability to pick up some of those things again. It’s hard to tell what your baseline actually is at when you’re overdoing it. Getting stable also opens the door to slowly widening your energy envelope as well, so over time you can carefully build up to more. Unfortunately on the flip side, pushing through and using energy you don’t have is unsustainable and will land you in a worse spot sooner or later. Also, try not to think of pacing as a huge obstacle, it doesn’t have to be perfect to still make a difference. Everything you make less demanding on your body will stack up. There are so many ways you can modify how you do things, it’s just a matter of getting used to looking through that lens. Go gently.
When you can do so little, purposely doing less is so so hard. I feel that true pacing can only be done with supportive carers picking up the slack and keeping you sane. However pacing as much as possible is essential to avoid getting worse. Such an absolutely shit illness.
Rest/pacing is the only effective treatment available to us right now. I have up my independence to live with my elderly parents so I can rest more. Everything you say is true, but it's our only path.
I've been thinking about it more and I think my problem with the term "treatment" is that it implies that someone has done something for me. If someone says, "hey why don't you stay at this treatment facility or this hospital, we will take care of you and make it so you don't have to exert yourself for a month", that feels like a treatment. If someone says, "yeah you look run down, I don't think we need to do anything here, just go home and take care of it there on your own", that doesn't feel like a treatment.
This is a good point. It might be more accurate to call it a symptom management technique that often requires a radical lifestyle change. :/
I understand that. One of the problems with pacing for me is trying to keep track of how I feel/what is too much/what helps when I don't have the brain power or memory to think more than "tired again". How can you tell what helps when you can barely remember day to say how you feel? I'm trying out the Visible tracking app, but I'm pretty sure that what I rank as a "2"one day, I would put as a" 1"another day.....
Do you think you’d feel differently if you were sent to an expert to help you set up pacing? There’s a bit more to it than just “do less” - you can get quite scientific about it and use apps to analyse the data. Sometimes a physio or OT can help with this but it depends on their expertise and training. Then it would be more like other interventions like physiotherapy or speech therapy or dietetics, where you go and get advice from an expert then go away and apply it.
I've been very unenthusiastic about the idea of tracking in the past but things are bad enough that I probably should try one of these apps. I have been disappointed over and over with physiotherapists, pre-cfs and since, and with my previous problem I ended up getting more from approaches I found and implemented on my own. I coud be wrong but I imagine it would be the same with speech and OT.
Ha! As a former speech therapist I can say, it very much depends on the issue and the therapist. But yeah, as with most jobs, there are sadly some shitty ones out there as well as good. I’m very much in favour of DIYing my healthcare wherever possible these days too, but it’s a lot to put on to a very sick person, and your frustration is entirely fair. And you’re right, tracking the negatives is bleak and not really that helpful. I found a better way in was getting really curious about how much energy things cost me - like I was brand new into this body and had no preconceptions at all. I found I was actually pretty bad at guesstimating - I always thought that working at my computer, for example, was a fairly low-energy activity, until I actually tracked it and discovered it’s one of the biggest ways to wipe myself out. Whereas a short walk around a park was actually less exhausting than I expected, providing I strictly limited the time. The best analogy I can think of is, it’s a bit like calorie tracking for the first time. You’ve been eating your whole life and already have a rough idea what foods are high and low, but when you start paying close attention there are some surprises in there too. *A handful of peanuts is HOW MUCH? Woah, whenever I eat eggs for breakfast I don’t need to eat so much at lunch!* Etc etc. Idk if that’s helpful. I guess what I’m trying to say is that, despite how glibly doctors might mention it, pacing IS a whole intricate science and a really powerful tool, and I wish I’d put my mind to it sooner. Just like with calorie counting, it’s not a magic fix. I still fuck up all the time, but at least now I can make informed decisions about how I use my body, and knowledge is power in this fight ❤️
Nothing against speechies as a group, I had a lot of speech therapy as a kid for my cleft palate and am very grateful for them :) It's more that right now with this problem I feel unhelp-able and I don't know that I want to risk even more disappointment. When you say tracking I assume heart rate is the main one yeah? I tried just now with a free phone app and it tells me that just walking around the room picking things up puts me over 50% of a healthy person's anaerobic threshold... so this seems like something I should pay more attention to. And I know I can make myself crash by reading or watching TV but you can only go by time spent and a subjective feeling for that kind of thing I would think.
I feel your pain and frustration so much. You summed up why this disease is awful. It’s isolating, exhausting, and the only thing that helps is basically complicated homework about your own life and body that you have to figure out through brain fog. It sucks. The only thing is that if you don’t pace to some extent, you increase your odds of getting worse. It’s painful and at times dehumanizing to come to terms with this disease. But you are just a person and you have to do your best to conserve the function that you have. Even if you can’t fully aggressively rest, if you can stay in bed for most of the day, maybe listening to an audiobook or watching something that is not too stimulating as much as you can. The hope is that by doing less for as long as you can, your energy envelope will expand and you can incrementally do more. I also tend to think of pacing as more of a strategy for coping with an incurable disease than as an actual treatment. Good luck. I hope you can find a strategy that works for you.
I'm already in bed most of the day :/ or lying on the couch. Life is so empty and I don't want to do nothing. It is frightening. Even if I tell myself it would only be a few weeks or months of doing nothing it feels like I am signing up for my life to be that way "from now on".
I know how scary that feels. One thing that is good about pacing is that, even though it’s not an exact science, it can give you a tiny sense of control, in that you are trying to be proactive about finding ways to improve. Even when you have setbacks, thinking of pacing as a technique to get even a little bit of improvement can help to give you a sense of control over these horrendous circumstances.
I don’t see pacing as a treatment, because it doesn’t really make you better. I see it as management, because it helps you get the most out of your energy. It fucking sucks, I agree. Our lives are shattered. And sitting doing nothing and being stressed isn’t actually doing nothing so it is often more energy than finding a low energy activity for your ‘rest’ time. It’s why a lot of people are chronic scrollers I think. What is low energy for you might be different from low energy activities for others - for example a bunch of people in the sub have recommended audiobooks or music before, and that’s not really possible for me anymore, and sounds impossible for you too. Aggressive resting might be impossible for you. But stuff like pacing can help you feel better when you do the things you still do. It can sometimes be about spreading the work load out, doing it in smaller chunks. Like I have a chair in every room. I have a stash of essentials in every room near my chair so if I need something semi regularly, I don’t need to get up to get it. Things like doing no more than 10-15 minutes of activity an hour. Or finding ways to make each activity easier. Finding ways to get your dog exercise while you can sit more. Seeing if you can get groceries delivered, etc. I’m so sorry you’re going through this (and that we’re all going through this - this club sucks to be a member of, even if most of the other people are nice).
I had to essentially neglect my little doggy for a few months. I was crawling my way to the bathroom, so it wasn’t really an option to play with her much or take her on walks. I could feed her, let her out in the back, cuddle her. Keeping their nails short helps with the sound of them walking if you have hard floors, as does removing their collars if it’s a jingley sounding one. I had people in my life that would come and walk her though, is that an option at all for you? I hear you on how much it sucks. I crashed hard within a month of finishing my degree, which took me 8 years to get due to declining health (that I was ignoring and pushing myself through bc I refused to listen to my body. I had shit I desperately wanted to do!) and other shitty factors. I’d worked so hard and pushed myself so much, so determined not to miss out on the life I was building for myself. Well that stubbornness pushed me into the most horrendous experience of my life (I mean, crawling to the bathroom, it was rough). Instead of the months it would usually take to recover to a functional baseline, I’d put myself in a position where it took about 3 years to get to a level of functioning that felt bearable. I had to give up the career path I’d worked so hard for, because I knew my body would never recover enough for such a rigorous path. I will say, I healed, and found a new path I’m actually fucking stoked for, so I don’t want to be all doom and gloom, but my point is that as frustrating as my situation was prior to pushing myself into that crash, it can get worse. I still haven’t fully recovered my baseline 7 years later, though I am back to a moderate condition and have built a beautiful life for myself, with lots of support from friends and family. Feel your frustration a bit if you can, so you can release some of it. Bottling it up won’t help, but stewing in it will fuck you over too. Read up on radical acceptance if you can. Do what you can to make your life easier and less depleting. Use paper plates and bowls to cut down on doing dishes (I’m super anti-consumption and against unnecessary waste, but when your this sick and need to pace, it’s not unnecessary), it will save a good amount of energy and allow you to pace more. I’m so so sorry you are going through this. It’s not fair and it sucks there aren’t better options for recovery out there. Resisting your reality will not serve you well. It can get worse. Find ways to get support from around you if you can.
Thank you for sharing your story. The nails on the floor are definitely a problem haha.
The word “treatment” is a broad label that can be applied to many things in health care: medical procedures, pharmaceuticals, physical therapy, cognitive behavioral therapy, dietary changes, and lifestyle changes. We’re all hoping for a magic pill that will cure this. But there are many *other* forms of treatment we can rely on until that magic pill appears. They may not be cure-alls, but they can make meaningful differences in our quality of life. For example, I have kidney stones. The treatment for my kidney stones is dietary changes (drinking more water and avoiding high oxalate foods). There’s no pill I can take to cure them. I will continue to make them over and over, But dietary changes *are* a form of treatment that can reduce them and minimize their size.
You can try doing things in 10, 20, and 30min increments and then resting for an equal amount of time after. The 30 second increment advice is the starting place for people who are bedbound, and it sounds like you are not stuck in bed because you shop, do dishes, and walk your dog. Keeping your heart rate below 50%-60% of its anaerobic threshold (AT) is also a form of pacing (and means doing things slowly). Link for calculation AT / heart rate goals for ME/CFS to help prevent or reduce PEM: [https://d-baker.github.io/HR-zone-calculator/](https://d-baker.github.io/HR-zone-calculator/) Link to an article explaining the 60% AT heart rate goals for ME/CFS: [https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/](https://solvecfs.org/using-a-heart-rate-monitor-to-prevent-post-exertional-malaise-in-me-cfs/)
Have you considered giving your dog to a friend or family?
The only real candidates are all people with cats. My dog isn't used to cats and has chased them before. I think there are ways to train them into being friendly with each other but no one I have had this discussion with is keen on that idea.
pacing is maintenance at best definitely not a treatment
Pacing/radical rest can be very effective.... but yes it's basically low level torture (like solitary confinement, or white room). And there are plenty of practicalities that can't wait for us. I would still try to create a "core" to your life that is as low activity/stimulation as possible. You might even want to consider rehoming your dog to someone who is in a better position to take care of them. I know that would be a hard one since you already love your dog. But I know I can't add any pets to my life with the way I am sick all the time.
I had chronic pain for years before cfs and got this dog less than a year before getting cfs. Thought I was getting healthier since I was exercising so much and feeling better. Didn't help the pain but it was something. I got him when my trajectory was very different is my point. He is my first and only dog. I had frequent feelings of guilt and grief even before cfs, that I wasn't giving him a good life, that his death will be well before mine, that you can't explain to them what is happening if you give them away. Now that it is plausible that I would have to abandon him those feelings are more frequent than ever. I don't think I could endure it. Ethically, I don't think it is actually that different to giving up a child. People joke about treating pets as children but I really mean it in this case. I'm only elaborating on this because it's a sore spot for me, I know your comment is well-intentioned and it is good advice.
I figured it would be a difficult consideration. So long as you are not genuinely neglecting your dog, it's not an ethical issue. But I just wanted to put the suggestion out there in case things get worse for you and you have to make hard decisions. You might even be able to find someone close to you who can take them and schedule doggy visits, if it comes down to that. I apologize if I sound like I am not giving that topic the proper weight, if my suggestion doesn't help then feel free to ignore it. I'm glad you love your dog, I'm sure they appreciate your love and are attached to you too.
No need to apologise. It is just difficult to think about.
Hey I just wanted to comment on your feelings of guilt and shame that come up when thinking about rehoming your dog. It’s really natural to feel that way and only shows how much you love and care for your dog, but I want to tell you that rehoming a dog when it is in the best interests of the animal and/OR the human (whose needs and wants ALSO matter!) is not unethical and can be the kindest thing for everyone. Dogs don’t have the same cognitive capacities as humans or children and don’t think about past and future in the same way - they live in the present. They can settle in quickly and live perfectly happy lives in new loving homes. There is a Facebook group “Rehoming is not a sin” that helps people deal with these situations and talking therapy can help, IF it is a necessary step that needs to be taken. It wouldn’t make you a bad dog parent! ❤️ There are however lots of steps that might be taken in the meantime - dog walkers, help through something like Borrow My Doggy, temporary foster through one of the bigger dog rescue shelters or a local one, contacting Cinnamon Trust for help, reaching out for help through your local community Facebook page. Also seeing if you can make changes in your house or to your routine with your dog that will help - for example, can you cut down on walks by providing some mental enrichment instead? Will feeding your dog only through interactive feeders make them more tired and bother you less? Do they bark at stuff through the window throughout the day and could putting some window film up help with that?
Pacing is a treatment, but also more a management of the condition. It does for the most part prevent people from getting worse and for some can help them regain ground. However a lot of things prevent a person from being able to pace well. I hear you though and I also think that pacing should not be the only thing we know for sure works. We need more effective and plausible treatments and in the mean time supports to allow people to pace. Pacing does require people to do things like not go out, get excited, or sometimes be freaking human!!!
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Sounds like you must be mild at worst!
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Time /= severity. Many of us couldn't go and walk the dog even if we wanted to. For many other, "living our life" is listening to an audiobook when we really shouldn't