Is anyone else having difficulty knowing when to take a break? I am still discovering how much I should be doing in a day. I used to try to work through the pain(bad results) now I quit when it starts to hurt(faster recovery) I did not go with my husband today. It would have been over 5 hours in the car. It made me feel selfish, but being in the car that long is painful. He is visiting family, I am staying home, something I have been doing a lot.
When I was first getting the more sevre symptoms, I did not know where my limits were. Now I have become more aware of what my body is warning me. For example, Before I reach my walking limit, I havesome signs such as a sweaty back, my ears "stuff up" or my neck hurts. I do not know why, but I know I need to stop walking at this point or I will fall down. I do not think this is typical, but try to pay close attention to what is going on just before you reach your limit. There might be signals there that can help you. Good luck Jeffrey
We have to manage work, family, pain, weaknees, rests, all this in the better way we can.
Sometimes our loved ones can not understand, and we are in serious trouble, sometimes near divorce.
If we like being alive, we have to continue pushing, and pushing without vanishing.
Everyone knows the signals to go further or when to stop.
Wish I could get a definative answer to that. My research indicates that exercise is good - but too much of the wrong could be bad.... BUT - who knows what is bad? I liken my condition to someone running 3km just as fast as they can. Why do they keep going at 2km? Do they love the pain or want to get to some goal?
I went to the shops today. After walking to the first shop (not that far!!) I was quite ready to give up - but I had a goal so I pushed through the pain to do what I had to do. If that type of trip you have is REALLY important you might consider going, but if it was more routine then save yourself for something more worthy of the pain.
Pushing through the pain is most likely stressing those nerves hit by the CIDP. That could be bad - even very bad - but nobody can say for certain because everyone is different. The only real positive is that no matter what the pain, the muscles are getting exercise - so that is good.
I have gone through the exercise of pushing myself way past that pain and endurance barrier just to see. So I know I can do it if I absolutely have to, but now I also know the cost - what I feel like at the end. I agree with your point about recovery. That gives me great incentive to make that value judgement early - is it worth the pain? If not then stop NOW!
I do suspect that both of us are learning that break point and with experience (as you do indicate) we will get better at that judgement. Try not to break anything getting there!
I believe we all experience this and each, with time and patience learn our limits. Read The Spoon Theory…great analogy/story.
Oh yes! Pushing it!
That would be me. Last August I had come to my end of pushing it and got a diagnosis. Was out of work for a few weeks. Went back to work late in Sept. Kept pushing my self until now about a couple of weeks ago I just had to give up work. My summer work is way more physical than the rest of the year. The Dr. is trying to get me disability. I can do one to three hours of easy work sort of through the day and then I find out I did to much.
I seemed to take three days doing nothing just to be able to go back to my job and now that is over with.
Yes, sitting riding in a car is not a fun time. And of course I push that beyond what I should.
I guess we will have to figure out what is enough for us individually. Every one is different when it comes to this.
I am going for a spinal tap next Tuesday for them to make sure that It is CIDP for sure and not something else where as I have been having these symptoms for so long. They seem not to be in any hurry to figure this out.
I will run out of money by October and then I guess I will be living in a culvert or something because they have taken their sweet time to diagnosis me properly.
Ok, enough about me. But I do believe one has to keep moving as much as possible.
So I hope you find your limits and don't give up on doing as much as you can. We need the exercise.
I have heard a couple of doctors say that "exercise, to tolerance" is good, but never understood what they meant. Finally, I approached one after he had given a talk on CIDP, and asked him point blank what "to tolerance" means. I got the usual "boy, are you stupid" look that doctors tend to give anyone who asks questions, but then he said that if you feel bad the next day, you did too much. And you just have to learn from experience how much is too much. I have gotten pretty good at this, and have learned when to stop. Occasionally I still do too much, and then I feel lousy for a day or two, before I get over it. Ironically, the best thing for recovery is a good night's sleep, but that is hard to accomplish when you feel so bad.
Back a few months ago he said that he was sending me to Dartmouth to get another opinion from a Dr. that had more degrees than he does so it would help in my disability case if I should so decide to at some point. And he said he didn't see any reason why I shouldn't be able to because I am only 13 months away from being 62. and I worked all my life so why not. Well, I have been hearing horror stories about how long it takes and that it seems to be that every one gets denied at first. But I am going for it. I feel so much better just working a little at home and resting when I feel that I need to.
As far as adjoining culvert pipes,,,, They is a bear in the other one but maybe I can chase him out for you, LOL :-)
Nancy sorry you didn't get to go with your husband to visit relatives.
I think YOU are the one that can say how much you can take today. YOU have weakness and pain, how much are you able to take?
I wish there was something with a magic pill we all could take and this diease would go away...
Wishing you the strenght to do what is in you and what you want to do...never feel sorry or say sorry...
P.S.: I want to add this statement...I applied for disability the day/night they delivered oxygen to my home..I had COPD....all this other stuff with my legs, feet, arms, head came after my disabiliity with my neuropathy. I know that I was turn down fast frist time around...got a lawyer asap....one that would take me...and then with the second lawyer I was able to get social secuirty disability. I want to say also,
don't give up...I was 60/61 when I finally got it. I'm now 64. With several new illnesses...it never goes away the pain.
From all the replies, a lot of people were up last night. I guess I pushed it too far and fell asleep at 6:30pm, then woke up at 10:30pm and went to bed and woke up at 5:30am this morning. I guess I have to remember I can't run on 6 hours sleep anymore. Oh, well, I'll get it right someday. Gary
Thanks Sly - Love this - already posted for family and friends on Facebook.
Thank you everyone for your words of wisdom. My doctor did say I could apply for disability because I will be unable to work for hours at a time. I have not started the application, I am daunted by the mounds of paperwork. I am in physical therapy to help with muscle build up. I find it sad that the only way to find our limitations is to go beyond, experience the pain, then learn from it, but that's life. I did read "The Spoon" and the tears flowed knowing I am not alone with these feelings. As we all know CIDP is very difficult to diagnosis the spinal tap was one step my Doctor took to confirm the Dx. To all of you who do not have the "official" dx, I wish you strength and courage there are people out there who care,