Today is the 13th of the month and according to my list, I am supposed to write about fibromyalgia. Since I am currently only dealing with a slight flare, I will make this one public and write about it here in the blog rather than in my journal.
With these topics I will most likely blog about each rather than journal, unless the topic is very private or sensitive in nature to me or others.
- An aside. Once I wrote something on my blog and my sister let my mother use her computer to read my blog and my mother did not like how I disclosed something, so she made a comment back. At the time I was extremely angry about the whole thing, but through time I have realized that member of my family have their own slant on reality so each to their own. As one of my idols, Emily Dickinson, once wrote, "Tell the truth, but tell it slant."
Having fibromyalgia can - on a good day - be likened to having a really shitty roommate in college. This roommate trashes the damn house, always fucks up your plans, has loud parties so you can never sleep, and basically puts everything you want or need just out of your reach. Fibromyalgia is - at least partially - responsible for the fact that my bedroom, my haven from the world, is usually a freaking pigsty and why my office at work is never truly as clean as I want it.
Fibromyalgia is the reason that I feel I have no energy left when it comes to being a "real" (whatever the hell that means) mother to my daughters. My 17 year old would say that she keeps expectations low for me. My 7 year old is still a baby, so she loves me no matter what. Puberty and socialization with shitty capitalists has not yet ruined her capacity for unconditional love. Basically fibromyalgia is the reason that I have to push every bit of physical energy into working 12-18 hours a day and have nothing left for anyone at the end of those days.
In a word, fibromyalgia is a real bitch. And an asshole to boot.
So what does it feel like? Well, there is feeling like I have the body of a 90-100 year old woman. Sometimes the hinges in my body don't work. And they hurt. Even where there are not hinges, such as the wings of my shoulder blades, it hurts. And it doesn't hurt because I moved it this way or that. It just hurts. I've read it as described as "diffuse muscle pain." If that means all over, then yeah. But it rarely diffuses and goes the hell away. It is always there, a seed of agony in each muscle fiber of my being, almost palpable with the power to say, "I may be feeling generous and let you do what you want today. Or I may tell you to kiss my ass and the idea of getting anything done today goodbye." Fibromyalgia is a fickle bitch. On the days it is feeling generous, I may not hurt too bad. However, I will be exhausted within three to five hours of getting up, no matter what the day. Constant is the the companion of the lovely fibro fog. I have to write everything down at work just to keep track and have to organize my methods of organization constantly just to keep on track.
For someone who tries to appear that I have it all together, this is a real kick in the head.
There are things that work, however. Most of them cost money or require health insurance, or I haven't tried them yet, but other swear by them. Here is what I have tried and what helps me survive:
1. Getting to sleep as much as I can.
I don't want to write too much about this today, as tomorrow's Topic du Jour is SLEEP HABITS. Stay tuned, my loves.
Yeah, really. I found these vitamins called Bio-35, and they are actually good. I need to order another bottle, as I am getting kind of low. And for you jaded folk, of which I am a member, NO, I am not getting paid by them at all. Money between me and the Bio-35 folks has only gone one way - from me to them, in me buying a bottle of vitamins. I get the soy and dairy free, but with iron. Next time I order I am going gluten free as I've had some gut issues lately. You can get them here.
I also like taking vitamin D-3.
3. Gentle movement, stretching.
I don't go to a yoga class. (That requires money, and my money is rarely spent on me, but on keeping up the household of five people on my one income. Keeping that income going is why I try to push through this fibromyalgia stuff and not let it win.) I try some basic yoga stuff on my own. Not consistently enough, of course. Moving my big old fat body through time and space, as much as I can tolerate as often as I can tolerate keeps me moving.
Basically, I am a massage junkie. If I could afford them, I would get them weekly (or more). I can't even afford one a month, or one a quarter. I get about one a year. However, when I do, I usually feel better. With regular massage I think I could get my body to do my bidding way more often. The last few massages I have had have included lots of trigger point work, which hurts like hell when it is happening, but feels phenomenal when it is finished. You can check out my massage therapist here. Visit her page and book with her, as she deserves the business for working magic on me and I wish I could pay her to work her magic more often!
5. Eating right.
This means many things to many people. But I do best on a minimally-processed, mostly vegetarian diet. Alas, I am not a vegetarian, and since my mother has been staying with me for her cancer treatments, my menu has run more to convenience or her taste, not mine. As a result, I am having more pain and way more gut issues. Another one of my Topics du Jour is COOKING, so I will save more on this for another time.
I have more that I can say about fibromyalgia, but I am trying not to dwell on the negative. I also want to remain positive and focus my physical energies on housecleaning (another topic!) and going to the grocery today. My rowdy housemate, fibromyalgia may not like it, but I am going to do what I want today.