People like a good story. The kind where positive realizations are shared and they can feel warm and fuzzy and encouraged after they read it. I am not immune to loving those stories. Tears will drizzle down my face as I cheer inwardly for whoever has reached a state of internal sunshine. It makes for a beautiful life.
But what of the darker stories? The kind we usually don't get to read because what is shared with the public are only the happy chapters? I refuse to do that. I would be doing a disservice to myself and to others who have Fibromyalgia. I would only be portraying the downhill moments versus the ones where I am climbing, straining, dragging myself up the jagged hills of illness. Sure, the view on the mountaintop is brilliant, but I wouldn't ever see it if I didn't force myself to keep climbing.
About a month ago I started a new medication, which helps with the nerves. It has been a miracle medication for me. I felt less immediate pain and because of that I started to do more. Instead of one major ( this would be a trip to Walmart or Target) outing for the month like usual, I instead went out 2-3x a week. I also started exercising on a regular basis again. First with walking around the block, and when I inherited a bike, I relished in the freedom of flying down the street as the wind whipped my hair. I was laughing with ease, sleeping easily, and enjoying feeling human after nearly three years of being cooped up inside 98% of the time.
I slowly started to feel the effects of exercising too much, of going out into the real world... Noises became even more intolerable, the pain came back with a vengeance... But I had tasted a newfound freedom, one I had lived without for years, and I wasn't willing to give it up again. So even though I was already in a flare I just kept pushing. It felt beyond grand to be able to function in the actual world again! I was proud of myself and I fed off of the cheers from family and friends. I felt like less of a disappointment (that is something we Fibro-ites deal with continually... Feeling like we are letting down everyone in our lives because we are so extremely limited) and that was really wonderful.
This is the part where a person without Fibro would say that this is awesome and I should keep exercising every day, and this is the "cure" for it all... and where the one who does have Fibro would give me their own two cents for how they handle their flares and their exercise. Both are opinions I am not looking for.
Fibromyalgia is a specifically tailored illness. I've said it before and I will say it enough times it takes for people to GET it. We are all different. We share varying degrees of a long list of symptoms, but how and when we feel each of those things is such a personal experience. We who have this illness know it is not a one size fits all, but sometimes we can get smug thinking we have something mastered.
We don't.
Fibromyalgia is moody. It's unpredictable and unkind. We think we have a delicate balance but then it switches up on us.
As I said, lately I have started to feel the reality slump down on me... Little by little, until everything started driving me bananas as my nervous system went haywire! I started having trouble sleeping again and would lie awake until 6-7am, the pain pressed HARD in forgotten places... And tonight the thud happened and suddenly I was feeling hotter then Africa inside... I'm surprised there was not steam coming from my ears. I threw the remote across the room, and I cried. The trigger was when something happened with the cable and DVR, but that was only a manifestation of the deep rage that ran beneath the surface.
I was... and am angry. Furious even. I realize again that I DO have limitations... A lot of them. I can't exercise every single day (though I want to and typing that makes me feel like a bird trapped in a cage or having my wings clipped off), I can't go out every week, Gabapentin is not a cure, and I still have Fibromyalgia.
The reason I am able to have "good" days is because I moved here to NC. I stopped working, I had to leave behind my whole life, I had to leave behind Mylie. I had to stop pretending I was normal and continuing to drive myself into the ground because I desperately wanted to stay active and the same.
This last month I felt like the old me... Still with Fibro, but also capable of having a life outside of these four walls. And it felt damn good... Too good. So good that it caused rage to realize it was an illusion...
Because I am sick, and I do have limitations, and I can do some things, but I cannot do all things no matter how much I ache to.
Last week I had this notion that maybe I could get a job again, I felt freedom again, and it was wonderful. But now I have learned that having a series of "good" days still means I have to ration my previous energy and only select a few to dos. If I don't I will end up on day ten of a massive flare, ignoring the very real alarms going off in my body, and breaking down from the extreme overload and pain.
It's quite upsetting to understand this once again, but on the flip side I am grateful I had this last month. It has reminded me that I can still live, still exercise, still have days of freedom... But I also have to remember that I am not healthy. I AM sick.
Maybe one of these days I'll actually fully grasp that and stop pushing so hard. I'm not so good at the resting thing... I find I won't sit still for very long, I rarely lay down even when my body is begging that is all I do, I do loads of laundry while in a flare, and I ride my bike several days despite knowing I shouldn't, I don't do sick properly. That has got to change in A major way. I have made a lot of progress handling this disease, but I still need so much more patience and growth.
It has been a hard lesson re-learned for my stubborn mind.
Until next time,
Janet
