We interrupt this getting-better interlude to bring you pain


disabled parking spot painted over
Originally uploaded by Liz.

I grieve all over again every time I get 3 steps better and get 2 steps worse. It is a struggle to adjust to the situation.

Saturday night something just went all wrong again. I walked so much last week and pushed myself through some increasing pain, the nerve-pain feeling, figuring that I was walking so well and felt so much stronger, it was the right thing to do. I have been doing all sorts of leg and foot exercises while sitting, and leg lifts twice a day. I was even doing a few steps of staircases without cane or crutches, just hanging on to the handrail. It was a free light splendid feeling, getting up from bed whenever I liked, bustling around, being at that party *standing up talking with people*. Now I am back to struggling to deal with daily life and back on crutches to do any little thing. My right leg can’t support my weight without too much pain for me to take. Lying here in bed, I am feeling so crazed with pain. So the last 2 nights and now tonight, Vicodin. (Last night around 9? Tonight, too – I try to hold out until Moomin’s bed time for some reason.) My leg – doing that thing it does. It is like spikey things are inside the small of my back gnawing their way out and also it feels like rubber bands gone too tight and strained. It is like needle stabs and itching deep in there in my haunches, and like fire in my hip and the stripe down my thigh, my calf and ankle, and also crawling ants in my foot. Any breath of air or breeze is like being tortured with fiery ice cubes. I swear. You see how around 6pm I kind of start looking forward to that painkiller. The tylenol and advil are not cutting it.

I cried last night when i realized i could not put on my sock and had to ask for help. I know, I know, it is okay to ask for help, no one minds, and once I’m there, that’s where I am and I do adjust. The transition is very hard. A little bit of privacy and self determination about the tiny things, it is hard to put aside.

Did I fuck up? Did I go too fast? And walk too much? When I start to feel like I can do more, I feel like a fraud, and lazy, if I don’t keep trying. I can’t even know what I did, or if it was something I did or a random fluctuation. The hard part is not knowing what is going to happen. Is this going to be a minor blip I will laugh at in a couple of days? Or am I heading for a longer time of feeling like hell? If so then I will just have to manage it better than last year.

I feel ashamed, and then ashamed of feeling ashamed. You wouldn’t think any of that would go on in my head, but it does, and I can’t help writing about it.

I just slipped from a range of maybe 4.2 – 6.7, to a range of maybe 6.5 to 7.2. I can handle being worse of course but I would so rather not. Right now I shoudl have my wheelchair in the house but I am stubbornly not. BAH.

Other than that, and my underlying emotional reaction, I had a really lovely weekend. Hung out in bed with computers. Vaguely herded the local flock of children. Mostly I wrote, and read and re-read and took notes on the Marq’ssan Cycle.

And, I had an okay day at work, fooling around and setting things up for testing and pestering people. Pain was not bad till around 3pm. Tomorrow, meetings and then linux server install. I will need to lie down a good bit of time whenever I can. Must remember to bring a decent pillow. Can I do this? Am I being dumb?

I wish this had happened after my trip and not before because I really wanted to be on, and sparkly, and have fun, and talk to everyone, after last year when I just remember being a giant bitch all the time. Also, I act like I am brave about traveling, but actually, the more I do it the more I know how hard it is. But I am determined on it. I resolve to rest sometimes, and ask for help whenever I do need it instead of trying to tough it out.

Oh and this all makes me really glad that I pushed forward on my situation at my work building with parking. Somehow. Anyway, I just had to.

I got to the part in Stretto where Alexandra is broken and in bed and tormented by feeling greasy and trapped and oh, I know the feeling as do many of you. Some of the stuff about rehab seemed pretty good but other bits like how she just keeps working and doing the things the PT tells her to and it’s painful but she gets better, well, I have my doubts there! Still I did oddly feel comforted by Alexandra wheelchairing around and struggling with stairs on her island. There I was, a little, with my damage.

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5 Responses to “We interrupt this getting-better interlude to bring you pain”

  1. fridawrites



    I’m having some similar issues lately. I really just want to do my hair myself, that is all. All by myself. At least my sister colored part of it purple and blue. I also usually try to wait until late until taking heavier meds, guess I just want to be as clear minded as possible. Hope this is just a temporary setback for you.

  2. elswhere



    Dang. Sorry to hear about this. The pain and the not being able to walk around and how scary it is and, well, all of it.
    I meant to write to you a few weeks ago when my psoriasis got so bad and systemic that my legs started hurting and all of a sudden for a few days–but I didn’t know it was going to just be a few days–I couldn’t walk. It was so! fucking! frustrating! And my dad was visiting, and I was trying extra hard to project a sort of jaunty nonchalance about it while having to ask people to bring me stuff and suchlike, and worrying about them worrying about me, and having to fend off their anxious hovering while underneath it all I was fairly terrified myself.
    The point of which being: I thought of you a lot. And a lot of your posts made even more sense to me. Not that they hadn’t before, but they did, and do, even more after that experience.

  3. badgerbag



    OMG yes – jaunty nonchalance and making sure no one is too worried. Your description is so perfect.
    Weird, isn’t it?
    I was still trashed today and could not walk, but it is 10pm and I am not on Vicodin so that means getting better.

  4. Haddayr



    I think the worst part of MS is the wondering. Will this last? Did I do this by not doing something? By doing something? blah blah blah.
    Of course, if I was experiencing MS the way you are, I’d probably say the worst thing about MS is the pain.

  5. Rose



    Oh, for fuck’s sake, I’m sorry you’re having a bad spell. I’m in Europe having mostly good days and few bad (for me) days, and coping with a group of 14 Americans who don’t understand the idea of variable ability and also every German helper-person we have (students, professors, occasional secretaries) asks about my cane with such deference and respect that I want to bash them with it repeatedly.
    Um. That was supposed to be about you and not me. FAIL! Hope you get a break soon, and that in the meantime life is ice cream and SF and otherwise happy.

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