Aggressive resting starting for 2017

[Sallyagerharris]

I nearly forgot to start with this. I have had ME for 10 years now heading towards 11. I'm severely affected and spending more and more time in bed as I just can't always get to the sofa. I've been trying to live as a person who has ME but without accommodating it and trying to carry on as though I can achieve the same as a person who is not living with ME. This has meant I'm not booming but continually busting. I'm not sure if my brain has yet realised but I think it's important that I state that I'm severely affected and estimate that I operate at approximately 5% of my pre ME capacity.

I'm very much aware that I may not have a baseline but am starting a deliberate effort (not much in case I tire myself) to utilise aggressive resting, autogenic relaxation, mindfulness meditation and generally gentle brain and body calming "activities" including monitoring heart rate in an effort to find my elusive baseline and to try and get out of the boom or bust cycle.

I'm lucky enough not to have to do much each day with a wonderful husband and no children at home. There will always be life events which I cannot anticipate but I'm determined to see what I can do.

Apart from the Christmas meals I've managed to lose my ME weight put on over ten years and now eat nutritionally dense foods but only the amount my body needs to function. I've started the autogenic relaxation course over the past 2-3 weeks and am already doing some mindfulness meditation.

Other calming small activities to include colouring and radio 4 as I generally find the slow pace quite soothing. I will also start listening to some classical music again as I used this last year when I was suffering particularly from brain inflammation / pain.

I will post occasionally with my progress but welcome ideas from others on gentle calming things to try.

Sally xx

 

[Cheesus]

Good luck!

 

[trishrhymes]

Do let us know how you get on. You might even persuade me to give it a good try.

 

[CFS_for_19_years]

@Sallyagerharris,

I've found it very helpful to keep track of how much time I spend in various body positions. This means keeping a log and pen at your bed, couch, dining table and wherever it is you sit while you are on the Internet. Leave a log at each spot where you spend any time, and record the time you sit or lie down, then record the time you get up from that spot. That way you don't have to worry about carrying a log with you each time you move. When you add up all the time you spend sitting, reclining or lying in bed, you may come up with something like 20-22 hours. Subtract that from 24 hours and you will know how much time you are spending on your feet or doing hygiene (bathing, showering, etc.)

For example, break down your time with regards to time spent in each position:
1. Lying down absolutely flat
2. Reclining semi-recumbent on a couch
3. Sitting upright with your feet on the floor
4. On your feet (calculated)

You may only need to do this for a week or two. Do it long enough to see a consistent pattern. You may see that you only sit upright for a few hours a day, but you might feel worse if you sit up for more than a certain amount of time.

In addition to this, a sleep diary might also be helpful. Most sleep diaries include not only time spent in bed not sleeping, but time spent also trying to sleep. From this you may find the amount of sleep you need to function your best.

If you are so inclined, you can repeat the activity log every 6-12 months, just to see if you are improving or worsening.

You are lucky to have a husband to help you. I don't know how you coordinate your activities together, but if you haven't already, you may need to state your need for "alone" time that is in response to your need for rest.

Good luck with everything.

 

[hellytheelephant]

@Sallyagerharris -it sounds like a good plan- good luck!

You say you already listen to R4, but have you tried the Homefront omnibuses available on iplayer. The dramas are 1 hr long and there are 64 episodes to date. I mention this as when resting it is important to get long programmes to listen to so you don't have to keep finding new and interesting things.
Both myself and hubby are addicted to Homefront which is set in WW1 and with many fascinating storylines.

 

[starlighter]

Sounds like a good way forward Sally I wish you all the best x

 

[Sallyagerharris]

Thank you everyone for valuable feedback and ideas which I will incorporate and listen to respectively!!!

Xx

 

[Sallyagerharris]

I've added the horizontal, vertical and other positions to my lack of activity sheets to start again tomorrow. As my husband is still on holiday I'm taking advantage of him letting our dogs out and I just keep sleeping which I've needed after a far too busy but good Christmas. Good not in ME terms!!!

 

[Little Bluestem]

Apart from the Christmas meals I've managed to lose my ME weight put on over ten years

Good for you!

I've started the autogenic relaxation course over the past 2-3 weeks

Is this something that is online? If so, where?

 

[Sallyagerharris]

http://goodmedicine.org.uk/goodknowledge/autogenic-training-session-1

Above is the link to the autogenic online sessions. I'm working through them slowly trying to do two each day but repeating them over a week before moving onto the next.

Horribly sick at present but feel it is a post Christmas relapse so sticking with what I'm doing. My heart rate had dropped for a few days but up a bit today. I'm struggling with the obscene head nausea combined with pain that is just constant. But determined to find my baseline. I realised also that I overdid a progressive muscle relaxation session last week which I won't be repeating. Sticking with my autogenic relaxation which I love and it's helped me through my worse moments of which they are many,

I wish I could sit with a person who could test out drugs on me with immediate results, as a frustration I have is trying to suss out what meds work for me but such a slow process.

Right time to update how little I've managed to do!!

 

[Sallyagerharris]

I'm now asking a question to which I don't think we know the answer but has anybody managed to find their baseline. This is partly as I'm trying to find mine but of course have no idea whether I will have truly found it or may seem to find a level where I don't make things worse.

One problem is life events which are uncontrollable which in the past have guaranteed a relapse. Also in my years of ME I've never been totally ME free but that partly as I was working or just doing too much. Now I've started my third year of not working and have cleared my diary, apart from the unexpected, I just need any clues as to when and if I will know.

I'm closely monitoring via activity sheets, heart rate monitoring along with symptom tracking and a daily ME rating which I hope will help inform me. But any and all advice is welcome!!

Thank you.

 

[ukxmrv]

I've only been able to find a baseline during times of stable illness. This could be (as an example) a season or a year of functioning at a particular average rate.

The "stable" illness level can vary but needs to be predictable and the most important things that change this (as you said life events) are

1. Acute viral illnesses
2. Travel
3. Moving home
4. Problems obtaining benefits and having to do things like attend tribunals
5. Other major health problems such as accidents or operations

Even within the constraints above that wreck levels of functioning it is possible to find a new baseline but the problem is we don't want to exist at this new level and we can't anyway as more "life events" as you say keep getting in the way. The worse we are the smaller things can be that disrupt this. The "life events" keep getting smaller.

As an example, you may get evicted if renting and have to move home ( It's not by choice of course). Even if a company or family comes in and does the packing / moving you are then faced with all the activities needed to survive in a new place (i.e. find a GP, get registered for supermarket home deliveries). So here you are, exhausted from a move and faced with more activity needed.

I can find a new baseline in the new situation after aggressive resting but that doesn't get all the things done for me to be able to feed myself and survive. It's a constant battle against these ever decreasing life events.

What I do is try and cut down on the things that drain me if I am not stable, so no dentists or hairdresser or unpacking or visits from friends or repairing my own clothes or filing or sorting out my finances, and be disciplined about it. Also to get as much help as I can afford from cleaners etc.

I've had the disease long enough that I know what to do when stable. For years I kept activity diaries until it was no longer worthwhile. I was one of the 80's ME patients who adopted aggressive resting. Experimenting with exercise programs in the 80's and 90's was the big disaster for me. I've learned to be disciplined even when it means a life shrunk down to basics.

 

[trishrhymes]

I don't think I've exactly found my baseline yet. Like you, I spent years crashing and burning, oops, sorry, pushing and crashing, while working and raising kids.

Since I've tried hard to keep within a level I set myself on my fitbit, I'm crashing less, but certainly not getting any better. More of a continued slow decline with fewer crashes... The fitbit has certainly helped, but I suspect I'm still above baseline.

You're doing much better than me on the record keeping. There's a bit of me that isn't giving myself permission to do a detailed diary, partly because I think I've taken on board in an unhelpful way the BPS model's 'symptom focusing' being a bad thing. Which is perverse, because I do my best to ignore my symptoms, and that's what gets me in to trouble and crashes. I push through, for example today I spent about an hour chatting in quite an animated way to my son on skype. I really enjoyed it, but felt pretty shattered afterwards. And that won't show up on my fitbit at all.

It sounds like you're doing all the right things. I guess it will be a case of looking back after a few months at your records and looking for patterns - trying to correlate activity levels with when you had sustained periods without crashes.

Good luck and keep us in touch.

 

[Little Bluestem]

Right time to update how little I've managed to do!!

At least you have managed to do something. "Start low, Go slow".

There's a bit of me that isn't giving myself permission to do a detailed diary, partly because I think I've taken on board in an unhelpful way the BPS model's 'symptom focusing' being a bad thing.

Back when I had a life, I was taught that you cannot manage what you do not measure. (A symptom diary is basically measurements, sometime qualitative, of your physical condition that day.)

 

[Sallyagerharris]

Despite aggressive resting, postponing all trips out and really resting as much as possible there is no light as yet in that I'm feeling dreadful. However, I've just come out of what I call brain and body inflammation with hypersensitivity into flu like symptoms which is a bit more bearable. I've been laying with ice packs all over my head but flu stuff easier to cope with.

I'm doing autogenic relaxation twice a day on most days and also doing it when in severe pain and have found it has slightly helped in relaxing the muscles on occasion lessening the pain.

I know as usual with ME that my hope that if I stay still I will be better that maybe this will not happen, but it is early days and will continue on. All appointments are postponed until the end of March and minimising high activity. Disappointing results so far but I'm determined not to give up.

I've realised also that I'm hoping to stop the ongoing deterioration. This is one of those black hole ME questions that would be possibly life saving and quality of life saving to know.

Sally X

 

[TiredSam]

It took months of disciplined pacing for me to start noticing an improvement. No guarantees of course, but if things are going to improve it may take a while.

EDIT: I don't know how much you are able to read, but I found this account of someone recovering from ME helpful:

http://www.recoveryfromcfs.org/