So, for those of you that don't know, I finally got my fibromyalgia diagnosis in September from the pain management doctor I went to see. It was a bitter sweet victory; I was finally able to get the treatment that I need. But the diagnosis meant it was real, and that I would have to live with this for the rest of my life. The doctors there have been incredibly accommodating with me. They started me on Cymbalta, which has helped. They've also given me strong muscle relaxants to help me sleep, and pain killers for bad days.
They also prescribed me exercise (walking and swimming, if I can) and physical therapy. Now, I wasn't thrilled about the PT, but since everyone says it's going to help me, I went along with it. My first session was last week and they gave me six simple stretches to do. Even that made me sore and especially since it's getting cold, I'm having more and more bad days. So I'm just doing what I can. Yesterday, I went in to physical therapy and my therapist added five new exercises to my regimen. And while I was there, she pushed me -really- hard. The sore didn't start to creep in until late last night but when I woke up this morning, I hurt everywhere, worse than my normal fibro hurt everywhere. Which makes me not want to go on my walk. Or do my PT for the day.
It's so fucking hard, dealing with this stupid illness that I never asked for. They say that movement will help me feel better, but how am I supposed to be motivated to get up and move when I feel like I was hit by a semi-truck in my sleep? And the fatigue doesn't help either because I just wanna sleep all the time.
I'm so angry with myself over this. My fibro doctor has been fantastic with me and has prescribed me the Cymbalta, which is helped take my pain down a notch or two and given me more energy. But my scumbag brain converts this into, "Hey! You're feeling better! Let's go do all the things you can't normally do!" And then I feel awful and suffer for days because I pushed myself too hard. This has happened several times, and Chris keeps telling me that I need to slow the fuck down and stop overdoing it because I'm not helping anyone when I do too much and put myself out of commission.
I used to have this dream, as a child and a teenager even, that I was going to be the perfect housewife. I would be a Stepford Wife (or for those of you that share my guilty pleasure of Desperate Housewives, a Bree Vandekamp). The house would always be clean, we'd always have a home-cooked meal, everything would be perfect. And then I was struck with fibromyalgia and my dreams of that flew right out the window.
And for the most part, I've accepted that things will never be the way they once were. But last week, I had a -really- good day. So I went on a cleaning spree and cleaned the entire downstairs of my house. And I felt AMAZING, because I could look around and see an empty sink, mopped floors, throw pillows and blankets where they should be, clothes in the hamper not the floor. And I was so sad... because I knew that this was never something I'd be able to keep up. That I will always have dirty dishes in the sink, clothes and blankets everywhere, dust bunnies and cat food on the floors. I felt absolutely dreadful the day after this, because there were several times where I told myself to stop, but that little nagging voice kept saying, "Just a little more!" So I kept doing just a little more, until I finished.
I know that it's irrational to be angry with myself over my illness. There is no one to be angry with over this. But that doesn't mean that I don't get angry with this, with dealing with this disease and everything that goes along with it. A friend of mine finally got to see two of his favourite bands and told me if they ever toured near me, I should take the chance to go. I told him that because of my illness, I wouldn't be able to go. My concert-going days were over because the crowds make my anxiety sky-rocket, the standing/sitting in the stadium hurts me, and the noise is just too much. I've come to accept most of these things; a common coping method for this is to just tell yourself that it would be just as fun as it once was, and to capture the memory of doing it when you were well enough to.
For the most part, I do that. I fondly remember going to theme parks and wandering around all day long without any pain. Attending concerts and jumping and screaming for hours on end. Girl's night out at the Castle, dancing in tight dresses and boots until 2 AM.
Now days, instead of heels, I get excited over slippers and house shoes. Instead of new jeans, I frequently buy sweat pants and pajamas. I've come to accept that I need to get around to buying an "old lady" bra to help with my posture. I have a box filled with pill bottles next to my bed, and a pill taking regimen every day, including an alarm to remind me in the afternoons. My friends and family know that they can't push me too hard and that they need to give me time to rest after activities of any sort rather than jumping from one thing to the other. Naps are a common occurrence around these parts and my housemates know that my chores will be completed when I have the energy to do so.
I have had to make huge life changes because of this disease. Chris and the rest of my family have had to make adjustments for me. Chris especially has had to do this; I know from watching my parents that dealing with a chronically ill spouse is no easy feat. It's trying on your nerves, on your energy, on your sex drive, on scheduling. There are a lot of things he's had to change, including his expectations of me and what I can and can't do. I can fault him for a lot of things and a lot of the time, he's a douchebag. But he's a saint for sticking with me and being there for me through my illness, even knowing that it'll never get better, only worse.
Fibromyalgia has done a lot of things to me. It's changed me, it's made me have to adapt to a different lifestyle. But it won't take away who I am. If anything, I'm a stronger person because of it.
I am a fibromyalgia warrior and I refuse to succumb to this war on my body.
