Break in the Gloom

The worst part of a seemingly never-ending flare is that it starts feeling like a new sub-normal. You almost forget what it’s like to feel halfway decent, but remember just enough to make you doubly miserable about your new low. It is during those times that all I wish for is a glimpse of the light at the end of the tunnel. If I only knew that the light existed, that the tunnel had an end, the darkness would be so much more bearable!

Luckily, I was able to get just such a glimpse recently.

Drawn into the Light (7X14, oil on canvas)

For the second time this summer, I went up on my medication to combat the high pain and fatigue levels. Hopes were low this would help. But lo and behold, I noticed a definite improvement in my fatigue levels and less pain/stiffness overall! I was also waking up more days feeling a bit more refreshed than I was before.

That was relieving, but it all really came to a head last weekend.  Last Saturday, to my own surprise, I was able to drive out to a luncheon with a friend, do some grocery shopping and drive us back; and then be able to sweep one room in the house and paint the Sunday after!!

I realize this may not sound like much to a “normal” person, but this was more activity than what I could spend my weekends doing in over a month! I used to be so completely worn out from the work-week, that all I could do over the weekend was stay collapsed and try to recharge for the coming week. Besides, grocery shopping and housework are some of the most flare-inducing activities for me, given the repeated bending/stooping they require. So being able to do all of those things in one weekend – hell, I almost felt normal normal again!

The best part of this was the magical effect it had on my mood! I knew that kind of a high cannot last (and it didn’t – last couple of days have been pretty low again), but even in the current return of the darkness, I do not feel nearly as hopeless as I was before. I was able to catch a little break, a small breather, in the middle of getting my ass kicked by fibromyalgia. And now I feel like I have returned from the edge of doom. I have a renewed sense of vigor to fight this brute, and not feel like I am sinking into oblivion.

I know now that the light exists at the end of the tunnel. Though I may never see it for long, it casts enough of a glow so that the tunnel is now dimly lit. And that is enough for me for the moment.



Exercising Intimidation-II

I could have equally titled this post: How NOT to Do Medical Exercise.

As with nearly all things related to fibromyalgia, I learned this the hard way. Perhaps so did my Exercise Physiologist (EP). 

At my first therapy gym appointment, last Tuesday, I broke down.

The pain had just shot through the roof and I could not take it anymore. I was tearing up uncontrollably as the pain and effort had just taken the better of me, and nothing the EP tried could ease it any.

So I just laid down, with a box of tissues by my side, waiting for the burning shooting pains from my back into my arms to ease up. I wondered how much of the burn was from the pain and how much from the shame, as I am not one to easily lose control of my emotions in public like that.

What just happened?

At the core, it was a particularly bad day since I was still in the grips of a massive flare. I was super “doped up” on pain medication and muscle relaxers in order to simply be able to get up from bed.

The painkillers had me numbed, but the effort I was exerting to do the tasks was more than I felt they should have required.

The EP reminded me that these were “level 1” exercises and should not require that much effort. It was clear I was performing poorly. She pointed out as much, along with how much more I should have been able to do, especially at my age.

For several weeks now, I had felt that I was making some progress (overall) through our exercise sessions. And since our initial meeting, I had grown to respect my EP a lot as well. She showed me tips and tricks that helped me quite a bit.

But now it sounded to me as if she was saying all the effort I was putting in was not good enough. I felt like I was not making enough progress fast enough. And that really stung.

She tried some other exercises in order to loosen up my muscles. And then asked me to try the initial exercise again, that I had previously performed poorly at. She asked me to “will” the problem muscle groups into relaxing.

So I tried. It wasn’t working.

I was beginning to get afraid that she thought I was a waste of her time and effort.

So I pushed. And I accomplished. I pushed my arms, holding a ~3-ft stick horizontally, all the way over my head, and touched the surface I was laying on.

Then I broke down.

I had managed to “will” my muscles into doing things they were not ready for. And I paid for it by being perfectly miserable the next several days.

Based on this experience, I made several Personal Rules of Exercise Therapy:

(1) Take it extra easy when exercising on quite so much painkillers. I realized they mask the escalating pain until it cannot be handled anymore, and then you feel it all at once.

(2) Do not try new exercise routines, that you don’t know how your body will react to, on especially bad days.

(3) Voice your pain and fatigue more readily, even when not asked.

I can often be really bad at this. I always wonder if it is “really” as bad as I feel it is, and tend to underestimate and downplay my maladies.

(4) Regardless of what anyone else says, listen to your body.

The last one is the most critical, and the hardest for me. If I never pushed myself at all, I would likely never rise from bed. But I never know when it is OK to push how much without the pain getting out of hand. And that boundary changes every day as well. But I imagine it is a learning process, and I hope to get there some day!

I was definitely wrong to push my body (again!) like that, and was probably also over-reacting to what the EP said. But I was also having a very rough day. I guess I was hoping for a bit more sensitivity and encouragement for what I was still trying to do, regardless of the pain and fatigue, than being shown what I could not do. It’s not like the latter doesn’t stick out in my mind like a sore thumb already!

So if you’re an exercise physiologist or physical therapist reading this:

  • I would urge you to consider the fears and insecurities your chronic pain patients might have. I am sure you mean the best for all your patients, but please consider choosing your words carefully. We can be very vulnerable when we feel like our whole lives have been turned upside-down!
  • It would be great if you could take the time to get to know us a bit. For example, I can often look pretty normal even when the pain is getting up there. By the time my face starts to show it, I am close to breaking point. Knowing such things gives you some idea of when it might be OK to push your patient a little, and when it is not.
  • Keep lines of communication open with your patient. Mine did, and we sorted out what happened over the next couple of days. Amidst my continual apologies for losing it that day, we discussed expectations from therapy and how what she said had come across to me. Our discussion renewed my faith in that she was committed to helping me, and we had a great pool session later that week.

Gentle hugs,