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?)
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Possibly misdiagnosis of my CFS? Extreme weight loss and severe fatigue. 
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