Ramsays Disease
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The thorny realities of 'pacing' for those who live alone

I understand the concept of pacing. I think it is the best thing we can do to keep from constant flareups and boom and bust cycles. But it requires certain things without which our attempts will be only minimally successful.

One of those things is the support of others and physical aids. Another is a very great change in attitudes, personality factors, and habits of a lifetime, PLUS the courage to do it even when we seem to see little apparent change in the cycles or when others persist in 'sticking their oar in' to demand, require, or comment.

The worst of those comments and judgments from 'others' can come from doctors or other medical professionals such as social care workers and benefits people who make decisions to help or not and what and how much help the believe we require. People who say we should not be bothered about what others think of us because it doesn't matter, have never had their benefits stopped because the assessment official, someone who knew nothing about our disease, determined that we are a malingerer, for example.

I have always tried to do the pacing thing to some degree. The more I learn and the more support I get from fellow sufferers and carers, telling me to pace myself, the more I am reminded and try to do it.

I was excited to finally have Social Services provide money for an hour and a half of care a day, which meant that I would be able to enjoy a clean house at last, reasonable breakfast and lunch, and shift my small number of 'spoons' to things like personal hygiene, creativity/hobbies, and social activities.

Despite the extra care help and my better understanding of pacing from reading ME information, I have not been able to force myself to adhere to what I 'think' is my baseline.

In all honesty, I do not know my baseline, because I am a person of many passions and creative ideas, who hates to stop the flow of ideas, searching the internet, communicating with other people, reading news and educating myself about a whole host of things from the trivial to essential political and social awareness that I think everyone must try to have if they can. I never know where to draw the line.

I need to not be put in constant turmoil about how to do what must be done and still have a full and enjoyable life, participate in things I want to do online and create art, which I do as well. It's all those things that make me feel my life is worth living. I am a typical creative type who just keeps doing their thing despite tiredness until I literally will pass out or collapse. I try to catch myself, but it still happens all too often.

I also come from a background where the 'protestant work ethic' was drilled into me. You learn to stifle the need for sleep, rest, and self-indulgence except at approved times and places. Lifelong habits bring rewards of self-approval and other-approval, accomplishment and achievement of goals.

Then BANG we become sick. We try to have a period of recovery, and when that doesn't happen, we resort to the stoic, socially acceptable and financially/socially necessary practice of powering on, sublimating the needs of the body for more rest, more care, and doing things differently.

We ask for help and are told we don't need it. We keep trying. We become worse or stay the same. We ask again. We are offered help and it turns out to be the wrong kind. Doctors tell us it is all in our minds, we try to be reasonable and take that in as a possibility. After awhile, we realise they are wrong. (Thank goodness for the internet, or this would never happen in many cases)

Without a 24 hour assistant/partner/carer, the whole baseline idea falls apart every day. If I am in a period of great pain and fatigue, which can descend just about any time, and happens most days as most of you know.....

I must try to force myself, however difficult, to get to the toilet, to close the curtain or put on a pair of sunglasses (not great as my skin is still being hit) when the sun is at a certain angle, to get up and go to the kitchen to get the sandwich my carer made for me, to answer the door when medication is delivered.... and so many other tasks. On many days this puts me way over the baseline level of safe activity.

On top of that, I am determined not to lose the use of my legs completely or become deconditioned so that I can't get myself to the toilet at all or feed myself.

Putting these factors together into one lively minded, and determined person is not the best recipe for a pacing devotee.

Here's what happens:

Yesterday I felt miserable because I was 8 days without a bath. a few times using wet wipes or washing under my arms does not make that feeling go away. If you think about it, by the time you have washed your feet, armpits and nether regions and brushed your teeth so as not to send your carer away screaming and grimacing when she has to come near (I know she won't but I hate to be repulsive) YOU MIGHT AS WELL USE THE SAME OR LESS ENERGY TO TAKE A BATH.

I had done a bit of this partial washing, taken phone calls, talked with my carer, gone to the toilet, read detailed information I needed for something, and had a LOT of pain for several hours. After the pain lessened, I should have and desperately wanted to sleep and do absolutely nothing. Instead, I felt I couldn't bear the feeling of grubbiness and desire for a nice warm bath and getting rid of my greasy hair any longer.

I took a bath. I felt much better, but still tired, I did not go to sleep after my carer left from her half hour evening visit, but decided to check a couple of things online......and then passed out in front of my computer, to wake at 6 am today with it and lights still on. Not an unusual occurrence for me, sadly.

I stated very clearly when meeting with Social Services care manager and later with an OT for assessment and then carers a few months ago, that my #1 need at present is a way to bathe and wash my hair without spiking my symptoms for the following several days.

After bathing, I still have to do other things like getting myself to the toilet, answering the door, getting my lunch, and a number of minor things as they come up. After taking a bath, I feel pretty well for at least the next several hours. I do just a little more that day because I feel so much better.... until the P.E.M. sets in. When that happens, doing these things just feels like I'm crashing against the rocks. It's like punishment added to an already punished body for days upon days upon days, compounding the effects.

Every extra thing I have to do--add in a urinary tract problem that comes up and means I am going to the toilet more often, for example, or a week in which there are people coming here to talk to me to fill out forms asking questions, or one of my kids talks to me on the phone for a couple of hours... and you have P.£.M. situation aggravated. You all know exactly what I am talking about.

I am now waiting for a meeting between my carer and care company manager and my social services manager during which, among other things, they will advocate for reconsideration of my request for funding an inflatable bath lift, which the OT answered me with this lovely sentence, spoken not once but three times during the course of that assessment: "These things are for people who can't get in and out of the bath... not so you can lie there and luxuriate or wash your own hair."

My carers will argue that I am entitled to have a bath lift because

1. without it I can neither be safe (P.E.M goes off the charts for days after bathing in tub/getting out esp., and showering is same or worse and dangerous due to orthostatic intolerance, being unsteady and clumsy)

2. if I cannot wash my own hair, which I do in the bath by immersing my head, and lying almost fully supported by the tub while lathering, someone else will have to do it. Paying that person will be far more expensive within a short time, than paying the 400 or so pounds for an inflatable bath lift.

3. according to their understanding of the regulations, I am entitled to have a bath every day! I am currently only able to do so once a week.

4. bathing so infrequently makes me feel miserable and socially unacceptable. It affects my self-confidence and dignity.

5. I am one of the lucky fibromyalgia sufferers who gets relief from lying in very warm water. For me the relief lasts more than a day, currently followed by increased PEM/pain. So, in the long run, many savings could result in terms of hours of care, functionality/mobility, medications, etc.

All of these are completely reasonable arguments. However, people who discriminate against PWME and similar invisible disabilities do not think reasonably. They think through the filter of resentment and disbelief that we are really in need of help.

OT has already argued that available funding is for people with physical disability that prevents them getting in and out of the tub. Her answer was to give me a board that goes over the top of the tub, on which you balance, several inches above water level, and by some kind of gymnastic skill, wash yourself... managing the soap, the shampoo, and shower hose or other means of rinsing yourself while trying to hold on.

I will keep you informed of the outcome of this meeting, as I know some of you are going through assessments for social care and OT help.

The idea of pacing only works IF and WHEN we have enough support to make pacing doable. (Right?)

10 Replies

Can empathise with many of the dilemmas faced as cutbacks in social care locally have set the level at getting out of bed / meeting toileting needs, manage either of those there is no support. The road to hell may well be paved with good intentions such as pacing but only hindsight can truly see where the limits are. We make the best choices cognitive impairment allows while paying the price for misjudgement, I still venture the boundaries on a use it or lose it basis, part of knowing I am still alive, that part of me lives on against all the odds. Keeping some hope that I make the most of what is available tempers my acceptance that only the things I can change are worth worrying about.

Went from plastic plank across the bath onto a wet room a few years ago as the rubber legs of relaxed muscle made getting back to bed beyond weeks worth of "spoons".

What is worth the effort for quality of life is a personal choice beyond the monetary budget constraints of social services and OTs, what makes life worth living.

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I'm wondering if there might be an extra horde of spoons stashed away underground by some eccentric dead collector. Let's all get a metal detector and go looking for them.

Oh yeah, we'd have to have some extra spoons to go searching and drag those metal detectors around. :(

Forget that idea... back to the drawing board.

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I forgot to add point #6 - The 'independence' factor. They hammer on about trying to help people maintain their independence. But it looks like what that means is they don't give you any help unless you are totally incapable of doing something. You may be struggling desperately, having a lot of risks and near accidents and complications from trying, but they will not offer something until there is no other way. So... you have to persist and use their verbiage in your counter argument. To be independent, a person washes themselves... not having to give up their privacy or take safety risks or make themselves sicker to stay independent. The OT's job is to provide aids that enable you to maintain independence. So I SHOULD be able to wash my own hair as any adult would do and if there is something that can help me do it, they should not discriminate against me, unless it is way beyond a reasonable cost. Given that savings can be made by doing so, seems a no brainer to provide it.

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Try researching personal health budget as a means of funding the care you want, pointing out the savings of providing what's required over hospital admission after a fall should sway opinion positively.

Independence is only something that is paid lip service, cheaper than a care home if it can be done.


I will look for that, although it could be this is what I am receiving through Social Services??? I will write another separate post on my experience in the last 2 years with carers and funding for in home care. Titled: My experience with In-home help and care.


Personal Health Budgets are through the NHS for things that would improve health or at least slow deterioration


Internet cut out and I Just lost my reply dear BudgieFriend.

Agree and recognise so much of what you share !

Want to say so much back, yet limited today. Will come back again in the coming 10 days to pick-up and share more, if you like too !

~Sharing the physical experience (...except orthostatic intolerence....each of us unique in our expression of this).

~Sharing the imprint of protestant work ethic

~Sharing the passion of a creative soul !

~Yes, I know what you mean, about feeling clean, wanting that...

And also sharing the wet-wipe approach. Sometimes not even that, in truth.

Using dry shampoo in days in between the 'big wash' - like you, every 8 days or so.

Really hoping we'll each find ways to get past this.

Wishing you best of poise and luck in your discussions, hopefully to get the support you so desire and deserve. Keep chipping-away, holding ground !!

As for me...in principle, I actually love to work...and live energetically, vigorously and with creative outcomes...from a flowing energy and *inspiration*

And currently living within 1 hour a day -

Precious-golden spoon !

Obviously FAR from ideal ! I could voice that more powerfully. A tendency to understate !

In my case...Drastic 'cutting-out' of dear people, not through lack of heart or mutual caring, simply due to bandwidth, finance, physical mobility, incredibly tiny, precious spoons !

And, cultivating pacing like a tiny garden...2.5 years, now.

Learning lots ! Some of it fruitful ! Some rewards and greenshoots !

And tough decisions sometimes !

One tiny example in my life:

Dear, frail, immobile parents, who I cannot see.

Conscious of mortality.

Wanting to call once a week,

Discovering the payback when flowing in natural enthusiasm...easily *would like* to speak for 1 hour, 2 hours.. yet then ~~BAM~~! flu - can be for 8 weeks !!

Can't afford that cost !!

Then...'try something different'

As they say 'do what you've always done, get what you've always got' (this in no sense self-judging, by the way - rather a call and a spur to my experimenting !)

Contrary to my natural wishes, applying the boundary...that magical point of 'half a spoon'...

keeping half a spoon in reserve for the body to do its stuff (perhaps some healing too!)

not very practised as used to 'chronic over-extending' !!

Searing-through natural resistance -

my own and my parents -

re-setting our calls to 20-40 mins depending...

making a part 2 some days later...

and this for me is, encouragingly, working better.

Just one tiny, tiny, tiny example.

And one tiny greenshoot of reward.

Warmest wishes for all of us here...catch-up again after next week.

Rock Rose :-)

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Thank you, Rockrose,

Your solutions are helpful for me to think upon. I am admittedly passionate and stubbornly reluctant to curtail the delight of social interactions online, learning, exploring, sharing, talking with friends, mutual encouragement, sharing with other artists and seeing their latest projects.

But you have bitten the bullet and set your boundaries to try to take it all in hand.. the unruly beast of boom and bust ME crazy illness patterns.

My cognitive problems are less than my physical weariness and pain. I have perhaps not been honest enough with myself about how much physical strain results from my staying online too long, reading too long, talking too long whether in text or in voice chats, trying to sing a few songs every day to my pet bird... etc. (laugh) I could reveal what a nut and funny person I really am. But this statement will set your imagination going far enough.

I am rebellious and I am also reasoned with a lot of common sense. We have a war going between the two... they and I. (laugh) I have become accustomed to trying to get these two inner personalities to cooperate and support each other instead of pulling me backwards and forwards (no, not literally--it is not a mental illness).

Yours and others' experiences shared helps so much for me to contemplate and apply in some ways for myself.

Thanks thanks thanks to you and everyone who does this.

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Love everything you share BudgieFriend :-)

Including singing to pet bird. I love singing too !

Oh what a lively path, pitching the ALIVE ground

(between all the inner figures)

Oh, yes, I understand.

And find your reply more than real to me.

And we'll share some more, going along -

practical tips and reflections combine !

Thank you too ! And all our community here sharing together



Today's the 2nd day after bath day.... pain and exhaustion cresting like a wave. I have been unable to stay awake... yet when lying half asleep, there is soooo much pain that it is not possible to fully sleep. I am guessing this is a common situation.

I finally fell asleep after a few hours, with some peaceful music playing on Spotify. But I had upsetting, complicated, dreams fraught with conflict and misunderstanding from other people. Not realistic ones... but you know, judgmental in a nonsensical dreamlike way. Think Alice in Wonderland style dialogue! Mad Hatter and Queen of Hearts making absurd accusations.

I am now happy to be awake again!!! and not in as much pain. i think the sleeping helped a bit.


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