Recently, I have had people inquire if I am feeling better. Which made me realize most people don't understand fibromyalgia.
It is not like other conditions or diseases-it's more like a roller coaster than a steady decline, or a bad spell followed by recovery. And, it is different for each person. Everyone has different aches and pains, different side affects, different reactions to medications. I have read accounts of other people that have it on blogs and yahoo groups, Facebook and real books. I actually consider myself fairly lucky, in terms of the symptoms I have, the support system I have, the job I have. Which does not mean I don't know how to throw a humdinger of a pity party though.
Here, in a nutshell, is what it is like to be me, with fibro.
Each day I wake up, after a not-very-restful-night of sleep. I get out of bed and take a few agonizing steps until my legs begin working (which almost ALWAYS happens) while I assess my general body. By the time I have walked the 9 steps to the toilet, I have figured out what, if anything, is hurting (my therapist wants me to keep a journal to figure out any trends).
---At the beginning of my diagnosis, my husband and I would try to figure out what each ache could be attributed to. This is futile, and depressing, because ultimately, you might hear your significant other say, "Maybe you ate too many shrimp this past week", or "Well, you DID work 5 hours yesterday", and then you get more depressed. See? Useless.---
So, I just make a mental note, then go on with the morning. Pretty quickly, I figure out how things are going to go. Some days, I wake up with energy and a happy body (and I will in no uncertain terms ruin that all by overdoing it, to take advantage of feeling so great...), and other days either my body, my mind or more spirit lets me know they are NOT on board with the plans for the day. Even if those plans are just to get up and not swear at the kids. (Can you tell which things failed me THIS morning? Yep, body AND spirit-sorry about the grumpies...).
Each day is a complete reset. Yesterday usually doesn't have much to do with today. Unless I overdid it. Then, I will pay, except on the rare days I don't. See?
Remember the Spoon theory? Each day, you have so many spoons. Each spoon represents your ability to do things, like take a shower, call a friend, drive somewhere. Once you spend all your spoons, you are done for the day, regardless of when you run out of spoons. And, the number of spoons you wake up with is not predetermined. There's no way to know how many you will wake with.
Some days, I have tons of energy, and a little pain. Some days, no pain. Some days, tons of energy, and tons of pain. Or, I feel fine (in my body) but I am grumpy, uncomfortable in my own skin. Yes, I know, that is called depression. I have it, been diagnosed with it, being treated for it. It comes with Fibro.
And, my worst pain (usually) is in my arms-typically my elbows and wrists, sometimes hands. I know others that can't stand the leg pain. Or, back pain. Each person is unique.
So, when I am having a good pain day, it unfortunately has no bearing on whether tomorrow will be a high pain day, or low pain day. Sometimes, the pain is hard to localize. Meaning, my body just has a low-level ache that encompasses everything.
The mental aspect of it sucks too. Not only do I have a raging case of fibro fog-short-term memory loss-but it all really bums me out. I mean, I know i have stuff to be depressed about, but normally I'm a pretty upbeat person. And, sometimes the mind kind of takes over.
Most of all, I think about my body and my health almost all the time. I know that is not healthy, but I also know that it will ease up after some time. My husband keeps telling me that once we get through our first year since my diagnosis (Jan 2011), we will know how we navigated each thing we do, each weather change, each family gathering, each week. From there, I am hoping some of this will begin to come naturally.
Today, I had a great chat with a former colleague who found out she no longer has MS. Yep. NO LONGER HAS IT. Her doctor said that he now believes in miracles. One thing she said stuck with me, and that is that she never wanted to BECOME her disease. So, she told almost no one. Then, when she found out she didn't have it any longer, she realized despite her best efforts, she had become her disease.
I have become, for now, my fibro. My Reynaud's, my RA. It's all me. The person I used to be seems to be gone for now. You know the one-the one that did so much, accomplished tons, was busy busy busy, and crammed everything she could into one day. I would partially swallow, just to bite off more. Now, it seems as if showering AND shaving, along with one trip to the store, and one doctor's appointment is TOO MUCH. And right now, this crap seems to have taken over my life. I know that this, too, shall pass. One day, I may find that, even though the pain is not gone, I do not obsess about each ache. I will go through my days like they are normal, skimming over the discomfort, adapting to each number of spoons as if by rote. I will be able to see the positive in everything more regularly, and my posts will be more about how awesome everything is, despite fibro. Not about how crappy everything has become because of fibro.
I do know that this year will come to an end. I will look back, and I will see a lot of change, a lot of pain, a lot of hurt, and a lot of knowledge. I hope that I can look upon the year and be thankful, more than filled with remorse for the life I have left behind. I hope that I can dream of a day when all this is behind me, when the fibro is gone, when I can choose to tackle too much, plan a lot, be busy, if only for a brief time.
While I miss my old, pain-free life, my quick mind, my seemingly boundless energy, there are things I do not miss.
I don't miss being so busy. I don't miss checking my calendar, only to note that I obligated the entire family to too much, and there is no room in our schedule for a bike ride, a spontaneous dinner with friends, a last-minute opportunity.