Baselines (& pacing)
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Baselines (& pacing)
I've been diagnosed since 2007/08. I was on the PACE trial at Kings (randomised to CBT). We spent a lot of time trying to find a stable Baseline during that. But didn't really manage it. I've effectively been doing as gentle a form of 'boom & bust' ever since, because it's not physically possible to do the 'same amount of stuff' each day. Particularly if you're working, or if going out & about is just beyond you.
Recently I've had a major relapse and am now housebound. I'm struggling to find a stable baseline, never mind move forwards onto pacing thereafter. I'm using the Frenchay Bristol colouring in chart per the AFME Pacing booklet, and also have a list of mini-targets that I try and hit each day - to do with basics like personal care, hydration & nutrition and up & down the stairs once each way a day. But I'm not managing them, and can't see how I can give up much more without risking dehydration/hunger. And I am worried that if I stop moving any more, I'll never get back to moving in future, because I don't know how...
Any thoughts?
Recently I've had a major relapse and am now housebound. I'm struggling to find a stable baseline, never mind move forwards onto pacing thereafter. I'm using the Frenchay Bristol colouring in chart per the AFME Pacing booklet, and also have a list of mini-targets that I try and hit each day - to do with basics like personal care, hydration & nutrition and up & down the stairs once each way a day. But I'm not managing them, and can't see how I can give up much more without risking dehydration/hunger. And I am worried that if I stop moving any more, I'll never get back to moving in future, because I don't know how...
Any thoughts?
- Jessica Bavinton
- Posts: 40
- Joined: Wed Aug 07, 2013 9:14 am
Re: Baselines (& pacing)
Dear goblinff
There is a way forwards with the situation you're in, and I will offer some thoughts tomorrow when I have some more time to focus on what you need.
There is a way forwards with the situation you're in, and I will offer some thoughts tomorrow when I have some more time to focus on what you need.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
Re: Baselines (& pacing)
Lovely thanks Jessica.
I should say that the GP is referring me to my local CFS/ME clinic (I've moved areas from London). But they're insisting on a full set of retests & their rediagnosis, and anyway it's 40 miles away, so in the meantime, as I can't get there, I feel I need pointers on how to get a bit more stable before I even try! And on past experience, the other guys at Kings (whilst trying hard) didn't get anywhere anyway...
I should say that the GP is referring me to my local CFS/ME clinic (I've moved areas from London). But they're insisting on a full set of retests & their rediagnosis, and anyway it's 40 miles away, so in the meantime, as I can't get there, I feel I need pointers on how to get a bit more stable before I even try! And on past experience, the other guys at Kings (whilst trying hard) didn't get anywhere anyway...
- Jessica Bavinton
- Posts: 40
- Joined: Wed Aug 07, 2013 9:14 am
Re: Baselines (& pacing)
Dear goblinff
Firstly, I'm glad to hear you've been linked into your local CFS/ME service, but hear your frustration at it being so far away, having to go through re-testing and it seeming a bit out of reach at the moment.
I can't give terribly specific advice but I hope that there's a few things here that would make a difference.
There are so many things you are doing that are helpful: trying to set a small baseline, and making a plan to gradually and gently get back again. Even with professional support his can be a hard balancing act, but there will always be activities that you can do, however small. Little and often.
Basic food and drink comes first: is there anyone in your life who can help you with this? You could also post on the 'diet' section for some practical suggestions: I know Sue Luscombe, the expert dietitian, has some good ideas on this.
As hard as it is, it is essential that you keep to a baseline of low-level activity: this will halt any further reduction in your activity and function, and will give you a platform to build up from again.
Think about things you can do, or focus on how to do something rather than not doing it at all.
Another thing you could do is to contact the CFS service, tell them you are currently concerned about a recent setback and struggling with some basic activities, and see if they can offer some phone or home-based support. You can also contact your GP or social services for support if you feel you need it, too.
The reality is that your question contains so much more than I can possibly provide on this post, and requires specific one-to-one support from someone who can support and guide you through.
I expect this post covers a number of things you've already considered or tried, but this really is the way forward - build on the things you've already looked at, gently and bit by bit.
All the best
Firstly, I'm glad to hear you've been linked into your local CFS/ME service, but hear your frustration at it being so far away, having to go through re-testing and it seeming a bit out of reach at the moment.
I can't give terribly specific advice but I hope that there's a few things here that would make a difference.
There are so many things you are doing that are helpful: trying to set a small baseline, and making a plan to gradually and gently get back again. Even with professional support his can be a hard balancing act, but there will always be activities that you can do, however small. Little and often.
Basic food and drink comes first: is there anyone in your life who can help you with this? You could also post on the 'diet' section for some practical suggestions: I know Sue Luscombe, the expert dietitian, has some good ideas on this.
As hard as it is, it is essential that you keep to a baseline of low-level activity: this will halt any further reduction in your activity and function, and will give you a platform to build up from again.
Think about things you can do, or focus on how to do something rather than not doing it at all.
Another thing you could do is to contact the CFS service, tell them you are currently concerned about a recent setback and struggling with some basic activities, and see if they can offer some phone or home-based support. You can also contact your GP or social services for support if you feel you need it, too.
The reality is that your question contains so much more than I can possibly provide on this post, and requires specific one-to-one support from someone who can support and guide you through.
I expect this post covers a number of things you've already considered or tried, but this really is the way forward - build on the things you've already looked at, gently and bit by bit.
All the best
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
Re: Baselines (& pacing)
Thanks Jessica
To be honest even if it is stuff I've already tried (and some of it isn't, so I'll be having a good think about what you've said), it's reassuring and comforting that I'm going in the right direction... Because it's quite terrifying to have a sudden relapse and not be able to physically carry/sort out the food/water you need to live, and then not knowing what is safe or not safe to try and do/ not do - the sort of - should I give up stuff, but what if I can't get back to doing it again - swings & roundabouts etc.
Social Services are coming next week again to start off some short term care/ mobility etc aids assessment, so I'll do what you say and post about ways to cope in the other thread.
Thankyou very much.
To be honest even if it is stuff I've already tried (and some of it isn't, so I'll be having a good think about what you've said), it's reassuring and comforting that I'm going in the right direction... Because it's quite terrifying to have a sudden relapse and not be able to physically carry/sort out the food/water you need to live, and then not knowing what is safe or not safe to try and do/ not do - the sort of - should I give up stuff, but what if I can't get back to doing it again - swings & roundabouts etc.
Social Services are coming next week again to start off some short term care/ mobility etc aids assessment, so I'll do what you say and post about ways to cope in the other thread.
Thankyou very much.
- Jessica Bavinton
- Posts: 40
- Joined: Wed Aug 07, 2013 9:14 am
Re: Baselines (& pacing)
Thanks goblinff
There's no doubt you're going through a difficult time: a further piece of advice is as far as possible to surround yourself with positive people and interacting with people who have recovered, or are doing well with their condition. Unfortunately such people don't tend to shout about it too much, but please know there are plenty of people out there who have been in your shoes and got better.
Most people who are now well have been through a phase of being very unwell and disabled as you describe, so keep hopeful for a different future.
This particularly challenging time will pass, and you'll find a way to find a foothold soon.
All the very best
There's no doubt you're going through a difficult time: a further piece of advice is as far as possible to surround yourself with positive people and interacting with people who have recovered, or are doing well with their condition. Unfortunately such people don't tend to shout about it too much, but please know there are plenty of people out there who have been in your shoes and got better.
Most people who are now well have been through a phase of being very unwell and disabled as you describe, so keep hopeful for a different future.
This particularly challenging time will pass, and you'll find a way to find a foothold soon.
All the very best
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME