I Just Don’t Understand This Stuff

January 7, 2008

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.

8 Responses to “I Just Don’t Understand This Stuff”

  1. Wendy Says:

    I’m so glad you have Tom to understand this whole thing, to apply gentle massage, and to be there for you. What a terrible thing to have to live with chronic pain. Is there nothing to ease the pain from fibro, no medications? Don’t answer me if it hurts to type.

  2. It’s not so bad, Wendy. And it’s only terrible sometimes. There are some things that can be done to relieve it and make it bearable, but there are certain aspects of it that are uncontrollable– pain flares and fogginess that seem to come out of the blue. They blindside me, and I haven’t figured out how to get rid of those.

    I am lucky to have Tom. A lot of people leave their partners under the stress of living with someone with fibro. But I think many people just completely succumb to syndrome (or whatever the hell this is). I always hear about people who’ve ended up living life in front of the TV sitting in a La-Z-Boy or a wheelchair. Some can’t help it, but I think some just give up in frustration. I just can’t even imagine it.

    I’m rambling.

  3. Little Miss Says:

    Fibro follies. There’s a post title for you. Fibro has no rhyme or reason, that I can tell. That’s what confounds the medical community as well, I guess. And probably why they all think we’re hypochondriacs when we complain because the pain is different (feeling, location) each time we tell them. Thank heavens for men like Tom. Can you clone him and send him my way?

    I’ve been feeling pretty good too lately and I don’t want fibro to take over my life. I keep forging ahead with the attitude that “I’m fine”, and I’m much like you – I don’t complain too loudly – and I just live with the underlying constant pain. It is what it is. But today my knee – just one knee – hurts like I twisted it, but I didn’t. And I’ve been having strong pains in weird places that concern me as being unrelated to fibro, but then I think possibly it is fibro.

    It makes no sense to me. Fibro follies, because fibro is having fun at our expense. Dammmit.

  4. @ Little Miss: How funny…when I first started this blog, I named it “The Fibromyalgia Follies,” then changed it at the last minute.

    Maybe I could just hire Tom out. He needs the work.

    I’m so happy that you’re feeling good. My theory is that it’s because you’re doing things YOUR WAY. It somehow makes this all better, maybe because there’s less inner struggle.

    My other part of the theory is that you’re feeling good because young guys are coming on to you! 🙂

  5. Hi there! Brian from InRepair sent me over here. I know I’ve read your blog on my tag surfer and I think I have you in google reader.

    How funny we both ended up on the same blog (In Repair).

    Nice to meetcha!

  6. @ Free: Hi! Nice meeting you too! I have two blogs– this is the one where I whine and rant and scream about Fibromyalgia, and I don’t post as regularly as on my other one. I just visited your blog, and it’s great!

    (Brian’s a sweetie.)

  7. Sometimes a gentle touch does do the trick. I’m so glad that this was one of them.

  8. @ Nick: Me too. Thanks so much.

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