Am I spinning my wheels, trying to find patterns in my fibro? Am I wasting my time trying to figure it all out? This roller coaster ride really, really gets to me sometime. Today is one of those sometimes.

Actually, it started at about 6:00 this morning. I woke Tom (and myself) out of a sound sleep by screaming out in pain. I don’t think I’ve ever done this before. I was sleeping so deeply that I can’t remember what it was all about, but I remember feeling this searing pain in my knees, and just shrieking in agony. This was real pain, not a dream. It was kind of like being under anesthesia, that “twilight sleep” where you can remember what’s going on, but you’re sort of out of it too. I went back to sleep, and when I woke up, I felt fine.

At some point today, I noticed that I was having no pain. None whatsoever, and I realized that I’d been feeling that way all day. I was so happy. That’s the one thing about fibro. You start feeling extremely grateful for every good moment.

Of course, my brain started this confused inner-dialogue. I want to work. I need income. And when I start feeling good, I think, “How in the hell am I supposed to do this?” Is there a temp agency that will work around my pain schedule? My exhaustion schedule? I gave up trying to figure it out, and just went back to doing some writing.

A couple of hours later, I went downstairs to give my eyes and my brain a break. I laid on the couch, talking to Tom, and as we were talking, pain once again began descending on my body. Within minutes it felt as though it was searing through to my bones. It moved around, and the only way I could describe it to Tom was that it felt like a flaming pinball, bouncing around inside me.

Let me explain that I have to really, really be hurting badly to even mention it to anyone else. This was so strong that it was making me cry. And it was hurting in the same old places, but different ones too. My hips, my butt, the tops of my knees, and in the joints at the top of my legs, all the way around. I just lay there for a while noticing it and crying a little.

The other thing is that I have to be in excruciating pain to ask Tom for a massage. I’m determined not to make my problem his any more than I have to. But this was bad, and I asked. Usually, I want a deep massage. It hurts like hell, but in the end, I usually feel some relief. But this time, he just gently started rubbing my body. No pressure at all, just rubbing my skin. He rubbed my legs, my bootie, my stomach– there was no real rhyme or reason to it, it was just gentle touch. Immediately, I felt the pain begin to drain away from my body. It was as effective (if not more so) than a deep tissue massage. At some point, he applied some gentle pressure to one of my legs, and it made me cry out in pain, and my leg sort of spasmed. But the gentle touch actually worked.

So I’m feeling better. Drained, but better. I don’t think I’ll ever understand the way that this works, but each time something new and good happens, I feel a little bit of hope. And hope is what keeps me going.

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