How much time do you spend undoing your doing?

I can't remain upright for long. When I have to drive myself somewhere, say 1/2 hour both ways, and do a few errands and chat with a few friends, it takes me 48 hours to recover back to my base line.

If I am up and take a walk for 15 minutes, I have to lie down and traction myself for about an hour. If I'm real good and don't actually do much of anything, ie: don't overdo, I can get away with an hour of up time a day.

More than that and kaka accrues exponentially. Sooner or later it hits 10 and I can't not lie down. I cramp from the neck down into a mishapen thing..... eeesh.

I can't do anything but commit to undoing the knots at that point. Pay the price. What's your life living time and recovery time like?

If I get 3-4 hours in a day that I can function half way normally, then it's a good day. Those days are not many.

I have to have physical therapy or my day is limited to an hour or two, if that. Without physical therapy the pain-fatigue cycle runs it's full route.

I'm supposed to do 3 sets of stretches at home each day. I can't do them the days I have physical therapy, for the PT, and the driving is more than enough to increase fatigue. On the days I don't have physical therapy (half the week) if I have to run any errand, that cuts at least one stretching set. If I have to use 3-4 hours doing something, including driving, then I can't do any stretches. (Not full sets)

It takes me 30 minutes to do the stretching at home, and an hour to two to recover. I can't maintain even with that as I'm not strong enough to do any real preventative work, thus the PT. I can't progress even with PT. (But I digress without the PT 3x a week.)

If I don't STOP and fully rest, and do self care... then the fatigue of the muscles causes extreme spasming, thus increasing the pain... if I push through any pain, then the fascia and the nerve signals really go haywire creating pain, and cause the muscles to spasm, thus increasing the pain.

If I become emotionally stressed and upset, that, too increases my pain and/or muscle response and more pain etc.

It can take two weeks to recover from an activity (say full day's) I've had recovery time of nearly a month for some flares not related to any particular activity.

I can usually determine ahead of time if an activity will be worth the result after the fact. Spending the full 4 hours (pushing when I'm not really up to it) will result in at least 2 full days of recovery time. (I'm talking full bed rest, ice packs etc)

What's also really tough is something like a grocery store trip. I have to use the go buggy... and what might take someone 30 min. to shop, takes me nearly 2 hours... due to decision making through the pain I'm always in. If I shop at a clothing store ...by the time I walk to the department and move hangars to browse... I often have to leave before viewing much, due to fatigue and pain.

I try to drag out to a restaurant for a meal each day (try to eat only half so I have that half for a meal at home later.)

I like your phrase "undoing your doing" and will use it IRL. TC

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oh sky, no kidding. if a friend takes me to the ocean for the day, it takes two weeks to get back to normal. one day, of just being upright, two weeks...... i just can't hold my head up for any legth of time, let alone the rest of me. my legs are in pretty good shape...... unfortunately they can't walk themselves..... (it takes me 10 years to get over a trip east to visit family, people just don't understand.....)

When my father died, (folks lived next door,) and all that family down and around and family dynamics et al and NO ONE understanding my inabilities... arrrggghhhhh!!!! It did take more than a year to fully unwind - partially because then I was the contact for mom, next door, and getting her to a place where she could live easier alone.

What's trying for me is like this week... weekend IT's beautiful weather out, but I don't dare do anything out of the ordinary, since I haven't had PT since Tuesday and he is out of town and I won't have PT till next Thursday. It's difficult to not tense up just thinking aboutit also, when I do feel break through pain, it's a flash of thought OH NO! but I have to overcome that or it will lead to more pain in itself. The mind and body are truly connected...

I guess in one way I'm fortunate in that I DO receive immediate negative physical response to emotions, that way I can correct my thinking almost immediately. Most ppl don't notice that and stuff their emotions away where they eat at them.

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cognition. we must listen to and become aware of our whole selves. no shortcuts. tis a freaking thin line, ain't it? good thing we are interesting cases, at least we don't bore ourselves..... this demands a lifetime committment to ourselves and our healing. bummer, if one had other plans.....

How true! The "other plans" went by the wayside in a manner of seconds.

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Wait!!!!!, hold on!!!! I am so not ready to be where you all are at. In my mind I can still pully 500 bales of hay to the loft at 7 months preg. In my mind I can still go through the house like a whirlwind and get a lot more accomplished in a short period then the average bear. In my mind I don't have to nap during or after a car ride, or after a brief social visit and car ride. I am having trouble with the acceptance part of this.

Undoing? I am always undoing damage that has caused me pain. But I feel the need to push push so far because otherwise I feel that I am a liar, insincere, complaining. It is so confusing.

Yes, well... I isolated myself from "others" for several years. During that time T plodded along helping me realize that I can't live up to other's expectations. That's really good stuff for everyone, but required for those of us who are not fully able to...

As for the "acceptance" of it all? Well, no. I haven't in my mind accepted my disability. BUT I DO KNOW what decisions I MUST make, as an adult giving anyone else advice? I do what I have to, but it doesn't mean I like it. I want to get to where I don't hate it, where I'm not exasperated with it. That will be acceptance I think.

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Sky, I don't yet know where my acceptance will come from. More and more medical work ups. Learning more? Don't know?

welllll, for me, my inner picture of myself is a buff olympic level athlete: rowing, shooting, luging, speed skating, geeez whiiz, you should see my thighs.......

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_Sky said:
Yes, well... I isolated myself from "others" for several years. During that time T plodded along helping me realize that I can't live up to other's expectations. That's really good stuff for everyone, but required for those of us who are not fully able to...

As for the "acceptance" of it all? Well, no. I haven't in my mind accepted my disability. BUT I DO KNOW what decisions I MUST make, as an adult giving anyone else advice? I do what I have to, but it doesn't mean I like it. I want to get to where I don't hate it, where I'm not exasperated with it. That will be acceptance I think.

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Thank you for this. I have MS and fibromyalgia so I hurt a lot. I get frustrated often because I can't do everything I used to, but am learning acceptance slowly. I'm not to this point (where you are) yet, but I'm working on it, LOL. How do you get your S.O. and friends to understand there are days when you really struggle, when you can't go to four or five stores, and that June Cleaver doesn't live in your house? Any input appreciated, also an info and adaptations for how to do things like cleaning, cooking, what have you.

Namaste,
RainbowFaerie

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_Sky said:
Yes, well... I isolated myself from "others" for several years. During that time T plodded along helping me realize that I can't live up to other's expectations. That's really good stuff for everyone, but required for those of us who are not fully able to...

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Sky,

This point of "other's expectations." is so true for me. I live in an elderly/disabled apartment community with about 50 units and I being in my 30's am the youngest here. I have given up on trying to convince some of the elderly, that aside my mental illness, I do suffer from chronic pain and am not able to do many things I did do when I first moved in around 5 years ago.

I no longer attempt to push the 'clinical depression' point of being a legitimate medical condition, and other emotional issues, however when I am suffering in the middle of a pain flare and am in major spasm and just am barely able to make it out of the apartment. I now at this point no longer leave here to go and do recreational or entertainment type of things the average thirtysomething would do.

My activities as tolerated are to generally go to the Doctors appointments most of which are monthly and also some bi monthly and weekly. I find myself being told over and over 'NOW HOW OLD ARE YOU?" and I do know that by the senior years pain and health are major issues for some but not for all.

Also, I find it difficult to explain in my apartment community that they are reflecting back on when they were in their 30's and their ADLS and working. Not realizing that when it comes to chronic health conditions, that age plays no mercy in the factor of health and pain. I know that I have been told in my cervical spine I have degenerative disk disease, as well as spinal stenosis C4-5 and C6-7 as well as 2 disks bulging in the cervical spinal area snd bone spurs growing and narrowing the spinal cord area causing frank stenosis.

Sorry got off track here, the point I am making is that although I am disabled from employeement, I still have to manage all the appointments to the Primary Care Physcian, the specialissts, the refills of the medications to be picked up at the pharmacy and my pharm has drive thru thank goodness. Along with dealing with all the paperwork and medicare prescriptions approved and those needing prior authorizaation and the prescription drug formularyy as well as managing the meds and self admistering them at the proper times and the one trip that is the most monthly difficult for me is the 'Pain Management' center itself as it is over an hours drive and by the time I get to the hospital find a parking spot, hopefully have already pre registared the day before, and then to the outpaitent pain clinic itself and back to the car drive for an hour and get prescriptions filled, then finally home to the apartment, I am so exhausted from the visit to the pain manaagement center I have to stay in my chair for at least a day of resst to do it all over again in 28-days. Ugggh.

I apologize for the lengthly post, only finding it to know others have to go through a recovery time after getting in and out of the car many times and all done in one day and appointments, away from the comfort of favorite chair and for me about 10 assorted bed pillows for positioning and posture......and on and on.

Thank You all who took time to read this. KrzK101

My S/O left as he "couldn't live with my disability." Wish he'd left sooner I learned that one can live with a cluttered home. I also learned things like: the bed doesn't have to be made EVER and clean sheets are nice every so often; I don't have to empty the dishwasher just because the dishes are clean, I can use the clean dishes from there, and if I want, add the dirty and rewash all of them together. Things like that. I even have a POB so I don't have to worry about getting the mail out of the box everyday so no one steals any of it, or it becomes damp. I get the mail when I can.

I guess what I've learned is to "think out of the box." Just because you might have learned something one way, doesn't mean you have to do it that way forever. If I eat leftovers, or leave leftovers... I can put the fork in the refrigerator with it. (I do live alone )

I do what I have to, when I need to when I can...the rest has to wait. End of story.

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Interesting stuff my friends. I am afraid if I say this too loud I will suffer but today was a very big day for me. I spent 4 hours at a wool festival mostly sitting, walking, standing, no falls. I then drove about 30 miles with my 6 year old to sit for a friend with an elderly disabled man who is in chronic pain from a hip fracture, can't be fixed. I spent 4 hours there. The six year old was intrigued with two kittens and television(remind me later to vent about commercials and the I wantS) I managed his care and the little one's bath and I am tired but I really don't have a lot of pain. Bright dry sunshine! I guess it takes looking at this gentleman to remind me how lucky I am.

hillbunny, can I come with you to the next olympics?

Oh yes Kris! Compensating is what we learn to do best (if we're able to.)

My insurance company always balks at reimbursing for the bed pillows. You know what? If it weren't for the injury I wouldn't be needing the several large, extra firm pillows to support my body so I can sleep. There are so many things I buy without asking them to reimburse me, when they balk at simple things I want to ask for everything just to show them!

I have a recliner that gives heat and massage, and I've had to sleep in it also on very high pain nights (as per my PT orders.) I don't like having to sleep there. I have yet to buy the small refrigerator/freezer to put by my bed for those days I just cannot crawl out to the kitchen for ice packs.

I have a remote alarm control so I don't have to find a house alarm panel before letting the dog out. I keep large dog biscuits on my bedside table for when I can't get to the kitchen to feed him a full meal.

Anyway, that might be off topic a bit.

When I'm at days like I am this week and last, without my usual 3x a week physical therapy, I can't do any additional activities. I have to be very careful doing my own stretching. Even so, my pain level is increasing. I'm using ice packs as I type I need to be asleep but the pain won't let me. I take extra pain med... but the sleep doesn't come. I do have T tomorrow, and a meeting tomorrow night (two in fact, I have no idea which if any I'll make.)

I don't like having to make choices between bad and worse.

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wisewoman, hey, ya wanna do a two woman rowing thing? you got rhythm? we gotta have good rhythm to row. my childhood pal Edie had a two seater row boat, ooow baby, we used to race cars.... they didn't know it, they were up there on the road, we were down there in the canal........ fun fun fun

hillbunny, I pushed myself until I could no longer walk or bend. I did a tremendous amount of house work today. Or basement work actually. I am so sore I don't have a clue what to do. I am lying propped up in bed and I know that will ease some of the pain in a few minutes. So I am going to dope up and become a vegetable. It's stuff that needed doing and no one else will ever do. So it falls on me. No I am not playing martyr. I simply wanted to get stuff done and feel the good part of that. I really hope I can medicate and catch myself now befor tomorrow becomes a nice bed-ridden day.

aha! No after affects of the adventures of yesterday. I did good. I'm not even really tired. YEAH!!! Time to tackle the garage.

it's all in the rhythm