Its the ups and downs that frustrate me

[peekawho]

Does anyone else feel confused by the ups and downs in your pain levels?

I have about 1 or 2 absolutely fine days a week.  Whenever I have them, its like all my pain issues are erased from my memory.  I feel like I"m making a big deal out of nothing when I"m having a good day...like, "the pain isn't so bad, what the heck am I acting like I"m dying for?"  

Than the next day, when the pain hits me like a freight train again, I feel like its all starting over again, and I get severely depressed, thinking it will never end, that I"m a weak person who can't handle pain.  I isolate myself and just curl up in a ball and wait to die.  Then of course, the next time I have a good day, it begins all over again--I feel great, and think I"m being a drama queen about nothing.   Over and over and over again, day in and out, week in and out.

At least I feel stable on the drugs I"m on.  I take the Opana ER twice a day, greatly decreased the Neurontin to 600 twice a day (it was making me have double vision), and Norco 10's for breakthrough (hardly ever take at home..do use about 2 a night at work).  I feel like at least I"m hanging on with this regimen.  

Today is a good day, and I feel on top of the world.  Will take the doggies for a walk, fix a nice lunch, and nap this after noon.  But I work tonight, and that will trigger another couple of days of pain.  Wish I could simply quit and apply for SS disability.  Cant afford to, though.  

Its just confusing to me mentally, the ups and downs of the good days and bad days.  At least Mr. Peek has learned to leave me the he!! aone on the bad days.  Im grateful the man has learned that much.  I wish I could get people at work to stop asking me "how are you?", though.   I say "fine", but they always go one step further and ask how the pain is, and I just wish they wouldn't go there.  

Oh well.  Im going to enjoy my good day and get out in the sun with the boys.  

[deadgamegrrl]

I have this same problem but its not so much about the pain fluctuations, but the crushing fatigue that hits at least once a month for several days.  At other times, even though I can't sleep well, I can still function and still have some energy and focus.  At these times I always think, 'what was wrong with you a week ago, you're just TIRED, suck it UP!'

Then the mega-fatigue hits again, I can't get out of my own way, I can't concentrate to get even the simplest tasks taken care of, feeding the dogs is a major project blah, blah, blah.

I start thinking about calling out of work even though I never do because I'm trying to retain a semblance of professionalism and also not lose my current clients.  Trying to write a simple training routine seems like performing calculus.

The pain levels just seem to be an added 'bonus' at these times, so that when I do drag myself to work, actually lifting a weight makes me want to just start crying, when normally I can use heat and meditation to cope fairly well.

I'm having 'one of those weeks' now, because I have been going through a lot of both severe physical and emotional trauma the past three weeks and it all pretty much caught up with me yesterday.  Any adrenaline I had is now gone, my body still hurts from the trauma, and my mental state is fried.  Someday I may post about what happened but its still too raw now.

Anyway, don't want to hijack the thread with my problems :-)  but I wanted to say you are NOT alone!

~~ dgg

[peekawho]

I will try to tell people exactly what you said..it's a great idea.  Part of the problem is that I work with about 30 different people...hard to get the message to all of them!  The few that I have given a form of that message to, they will reflexively ask me the "hows the pain" question when they see me, and then clap their hands over their mouths and say "oops..I'm not supposed to ask you", and then they get all flustered.   But I'll keep trying.  I think it's just human nature for us to ask someone about their known problems, to be caring.  

Lol, Mr. Peek doesn't want to help me on my bad days...he bothers me to ask me to go to the store, why does the house look like a pig sty,  what's for dinner, etc.  he knows better now.  He just fixes a frozen dinner for himself and watches tv by himself.  It took a lot to train him to do that!  

[Jaybay]

Peek, I had to educate friends and in particular family members about how to deal with the new me.  Everyone was beginning to see me as my "disease" and it was up to me to remind them that I am NOT my disease.  My in-laws were the worst - constantly sending "get well soon" cards when I'd told them a hundred times I wasn't going to "get well" any time soon.  They'd send quack remedies like Willard Water or "colon blow" and completely ignore what I told them about the cause of my symptoms.  I was ready to tear my hair out every time the phone rang or the mail arrived.

It boiled down to telling everyone that part of my therapy was to NOT focus on my pain.  Constantly bringing it up did not help.  Treating me like an invalid did not help.  Just treat me the same as you always did and I'll let you know if anything changes.

Peek, you have to tell people or they won't change.  Next time someone asks about your pain, just tell them it's part of your therapy to focus on things in life unrelated to your pain.  You appreciate their asking, but they can actually help you by treating you no differently than they did before you had chronic pain... blah blah blah.  I know they mean well, but when everyone in your life inquires about your pain every single day, you can hardly be distracted from it.

I know what you mean about the ups and downs.  It's confusing and frustrating because you can hardly plan anything not knowing what kind of day you'll have tomorrow or next week or next month.  I make plans for the future with the caveat that I may have to bail.  Some of my family members still don't get it, but that's their problem, not mine.

It took ages to train my husband that when I have a bad gut day I want to be left alone.  Those are the days I have to use self-hypnosis to survive and I can't very well do that with his constant interruptions to check on me.  No, I don't need any soup - barf!  Yes, I still feel like shite.  No, it's not any better.  No, I don't need anything but for you to get out of my frakin' face for one blessed hour!  LOL!

[namnam46]

Hi Peek,

I'm REALLY happy that you are going to be able to enjoy your day "in the sun with the boys"!!

I wish that I could give you an answer to WHY we have good days and ALMOST forget about our pain and then it hits HARD "like a freight train."  I've never come up with an answer to our "ups and downs"!!  

I HOPE you have a WONDERFUL day with "your boys" and that the people at work DON'T ask you about your PAIN!!!!  :)

Hope your pain level STAYS low..........Sherry  :)