Back pain, showers, and the unexpected benefits of fibromyalgia

So, I wasn’t going to post because my days have been colored almost entirely with intense back pain, and who wants to hear me whine about that, right?! But then I remembered the entire point of this blog is to document my experience with FM, etc, so here I am.

I’ve felt quite trapped the last few days, as basic movement is limited by the spasms/pain in my back. Occasionally I can find a position that is mildly comfortable, and if I remain perfectly still in that position my pain is alleviated (at least until my muscles begin cramping from being immobile). I am attempting to do some gentle stretching, because I know that not moving for extended periods makes it worse. Mima, my Israeli physical therapist, would be proud of the stretches I am doing. Actually, I take that back, she would want me to exercise, the idea of which only makes me giggle at this point.

Did you know that one of the symptoms of dysautonomia is “exercise intolerance?!” I love this term, its lack of specificity, how it generally sounds made up. However, it does make sense in that everyone has always told me that exercise is fun, releases endorphins, etc, and I have Never had that experience. I never really understood these claims, because I’ve always felt awful during and after even mild exercise. Walking is perhaps a slight exception to this, and I find the strength training machines at Curves tolerable in small doses.

The gentle stretching so far does not seem to be making a difference, other than to increase my pain, but I am trying to listen to my body and move it in ways that feel beneficial. One of the major psychological hurdles with FM and the other health issues I have is the feeling of being trapped —

that I cannot even think about what I would like to be doing, with my life, with my days, because nearly everything that comes to mind is currently not physically within reach. Notice the presence of the word “currently!” I do have hope that my physical limitations will decrease. Sometimes I lose sight of it, but I always come back to it.

For me, there are definitely some unexpected, tangential benefits of having FM. For instance, for most of my life I have done a million things at once, and done them all well (from school to everyday tasks). I used to put enormous pressure on myself to keep up this pace, this standard, often losing sight of what genuinely made me happy, with little concept of relaxation. Having pretty major physical limitations, especially affecting energy levels and the ability to multi-task, forces me to relax and take things slowly, which can be wonderful. Also, in the absence of the activities I was previously occupied with, (full-time school, a job, a group of friends) I’m able to pursue my sort-of secondary interests (jewelry, indoor gardening, reading, cooking).
Beads!

a watering can!

a purse that looks like a watering can!

I found so many pictures of exciting watering cans — clearly I need a cooler one.

This change has (and still does at times) de-stabilize my sense of self, but in my best moments it feels more like I’ve just realized that who I am is much more expansive and flexible than I thought, which is a positive thing, and opens me up to different people and experiences.

Here are a couple of positive things that have occurred in the midst of the breathtaking back pain:

1) I have had almost no appetite the last few days, nothing has looked good, and eating has been a struggle. However, yesterday I realized that bran muffins sounded good, and I made some! They are incredibly moist and filled with healthy things, a very small amount of sugar (in the form of molasses) and almost no fat. I ate a million of them this morning, and feel like eating and I are getting on admirably once again.

Mine look even yummier than this, if I do say so myself:

2) I made grilled cheese sandwiches for the first time ever yesterday (I realize this may seem silly to you), and they were So Scrumptious. Welcome back, food, I’ve missed you!

Here is the virgin Mary’s face on a grilled cheese sandwich (not mine!):

Why must it always be the virgin Mary or some such person? What if that was really someone’s aunt Tillie or your next door neighbor Francine appearing on the grilled cheese?

3) Artie, the new snakey cute dog, continues to jump up on the bed multiple times each night, waking me up each time so I have to gently but firmly push him off (gently because I love him and also because he pees a little when he is frightened, which is extra fun — we think he was abused). Last night we put him in the boy’s room and closed him in, and it was so lovely to sleep without a dog face continuously waking me up! He was fine and didn’t whine at all, plus he got to sleep under the covers finally! Now Rozerem can do its job uninterrupted.

Before I depart I want to talk briefly about my shower issues (I know a little thrill of excitement shot through your heart at the mention of this fascinating subject).

For most of my life I have showered every day like many people. However, in the last year and a half or so showering has become quite difficult. This is partly because nearly every panic attack I’ve had has occurred in the shower, which of course makes me subsequently less excited about showering. The main problem, however, is my FM symptoms. It can be quite exhausting and painful to stand up, moving my arms and my body for the course of the shower. I’ve found that afterward I have to collapse for awhile — I get short of breath, dizzy, light-headed, sweaty (lovely, I know), and alternately hot and cold. I now know that much of this is related to dysautonomia.

I’ve started trying to simplify my showers as much as possible (I used to use a million different products and take a long time). I now only use Dr. Bronner‘s lavender soap, which is amusing and enjoyable not only because of the bizarre writings all over the label (some inspiring, some freakishly religious, some nonsensical), but because it is free of sulfates and yucky chemicals. I even use it as shampoo, which is surprisingly effective!

I also have started putting one of these strange menthol-y smelling things on the floor of the shower, which I’ve noticed helps regulate my breathing and relax me while undergoing the stressful shower experience:

These also help me keep my showers pretty short, because I know that when the tablet has melted almost completely away I should be getting out.

I don’t think that they actually do what they are advertised for, which is decongesting the stuffy nose, but for me at least they have a secret, fantastic use for FM. It makes me realize that if more people/companies were aware of FM issues and worked to create products to make our lives easier they could come up with all sorts of fabulous things. Meanwhile, I will continue to search for hidden FM uses in otherwise typical products.

Let me know if you discover another one of these secret FM products buried within a spoon or a desk or something!