on what I will allow

My very dusty running shoes.

My very sad, very dusty running shoes.

I’ve been avoiding writing this entry for long enough, I think.

So this was the relapse that I don’t come roaring back from, folks. It was inevitable. I’ve been doing my checks, carefully testing my limits, investigating how far I can go, looking for all the indications of disorder, and well, hey: I still love my Solumedrol infusions for pulling me together in a pinch, that’s for damned sure, but I think I need to acknowledge that it isn’t actual magic. The infusions snapped my body out of a tailspin, and that’s a good thing, but there was some damage this time, and I’m going to have to deal with that.

When we talk about body- hatred, we’re usually talking about body-image; the way we see our bodies, or the actual size of our bodies. I’m not immune to this sort of body- hate, either; I’ll slip up and gripe about having nothing to sit on occasionally, too, but in general my body- hate is very specific and focuses on ability. For the past near- 20 years, my relationship with my body has been very focused on ability; until my disease began to make serious inroads, my body gave me pleasure and made me feel very, very strong. It was very strong and very capable. That’s how I saw myself: strong and capable- and my body was a large part of that image.

Transitioning to a life in which my body is unreliable and gives me a great deal of pain is- I don’t know. Are there words? (There are words. I just don’t know if I’m up to typing them out today.) It’s disappointing. Frightening. Disorienting. I know who I am, within this body, but I no longer understand the vehicle I’m driving.

Part of my left leg is still numb, and while it mercifully lifts and responds, there are still some coordination and strength  issues. My left arm is still strange, and while it works, it’s weak, and only gives me about 60% strength— stupid and awful, my smart hand being the one that is going, there’s some irony there. Overall, my entire left side is off, but still- the infusions improved it dramatically: I am grateful for them.

I haven’t been brave enough to take this entire mess out for a run yet; I’m nervous, in truth, and it’s been so damned hot out. With the weather hitting the 90s, I’m back to hiding out in the air conditioning again— ah, the sweet taste of going completely stir crazy, that’s the good stuff. There’s that to look forward to, as well: I’m not really built for indoor living, but high temperatures and MS are a bad mix, so summer is a bit maddening.

I need to take myself to the gym, though, to really get a sense of where everything is. I have a feeling that I should be asking for an extended physical therapy referral at my follow- up, which is something I’ll be coming to with mixed feelings. Despite my honest love & admiration for physical therapists, I’d rather eat liver and onions for a week than go see one. They’re great, and the work is totally effective, but it’s just no damned fun to go through as a patient, folks- or at least, that was my experience putting my knee back together after I’d taken on running the hills of California’s Monterey Bay area one too many times. My physical therapist was terrific- kind, firm, and informative- but the work was not enjoyable. I know that this is something I need as a part of my life on a regular basis, I just… don’t want it.

I don’t want it. I’m having a bit of an internal strop over the whole thing, to tell the truth: I’m being a total child about the entire business.

I’m allowing it. I’m indulging myself: I’m okay with being a bit of a baby about this, as long as I actually DO THE THING. I’ve been so focused on keeping a firm jaw about doing the right things- This Is How I Will Take Care Of This, No Whining Permitted- and really, if this were one of my friends, or my kid, or my husband? You are damned right I’d listen to them bitch about physical therapy, as long as they MADE THE STUPID APPOINTMENT. So this is my gift to myself: I’ll let myself be less- than- thrilled, both about physical therapy and the need for physical therapy. Just the part where I write that feels like a release, it’s crazy. And I am looking forward to the payoff- the results, any improvement- very very much. Even the somewhat scary TENS units sound sort of intriguing. Also sparky and potentially burning, but… maybe good for neuropathic pain and muscle spasms, too. We’ll see. I’m allowing myself to be optimistic, because I’m allowing myself all sorts of things this week.

I’m off to allow myself a pint of Jeni’s ice cream right now, actually. What are you giving yourself this week?

  One thought on “on what I will allow

  1. June 3, 2013 at 8:07 pm

    Sarah,
    Gripe and cry all you want. We are here to listen and give you hugs from afar, but damn you, do make that appointment!! Keep the faith. If you don’t have hope, … Enjoy the u e cream and eat an extra pint for me! 😊

  2. June 3, 2013 at 8:12 pm

    Always wishing the best for you! I’m giving myself some time to take it easy this week (had a rough week last week).

  3. eudyptula
    June 3, 2013 at 8:24 pm

  4. June 3, 2013 at 8:32 pm

    The dusty running shoes hit me right in the heart. I was a runner — I ran 6 days a week until CNS Lyme disease took my balance and most of my vision, and I started running into potholes that I thought were shadows. Of all the physical losses I’ve experienced, not being able to run anymore is the one I still cry about sometimes. I loved it so much.

    By an odd coincidence, I just got prescriptions today for a TENS unit and 20 sessions of PT. I’ve been doing better since going back on immunoglobulin 6 weeks ago, but I still have quite a bit of neuropathic pain. 5 years ago, a doctor referred me for PT, and the therapist suggested TENS. I found the in-house unit very helpful, but the home unit the PT ordered for me when I ran out of sessions was too wimpy to be of any use. Then, recently, my father told me that he has a very good home unit. I got the brand and product information from him, and that’s the one I’m going to ask for this time. I’ll try to remember to post an update here if I like it.

  5. Deidra
    June 3, 2013 at 8:36 pm

    The TENS unit is the best thing ever invented. I just finished up a much-resisted course of PT for my RA and they used the TENS unit after each session. I’ve never loved a machine so much. It just uses electrodes to make the nerve endings stop over-loading you with pain signals and this interrupts their messages to your muscles that’s making them spasm. It’s kind of a pulsing feeling and they only adjust to the level you like and they used warm compresses with mine because that worked best for me but they can do ice, too. Plus it doesn’t mess with your mind or cause addiction problems like the higher level pain meds do. I hope it works for you. 🙂

  6. Beth
    June 3, 2013 at 9:50 pm

    ❤ you! When I read your blog, it's like you're reading my mind and writing what I think. I am so there; although it's not MS for me, you are going through the same steps of dealing with chronic health issues. Reading this made me cry because you've said what I was thinking but didn't want/know how to say. We both keep a very stiff upper lip most of the time and it is damn cathartic to whine every once in a while to get all the pent-up feelings out. And then we "DO THE THING" as you say. ((Hugs)) and my thoughts are always with you. PT is hard–and boring–but the payoff is worth it in the long run.

  7. June 3, 2013 at 10:05 pm

    I had a college math professor, a nun, tell us a tale in class one time. Seems her brother was quite wealthy, and he took the entire family for a tour of his yacht. Sister Agnes took a look around at the opulence and said, “I took a vow of poverty, but I don’t have to like it.” But she kept her vow. Physical therapy is your vow to yourself. Keep it. But it’s okay to freaking loathe every minute of it.

    This weekend I hope to hike 50 miles in 50 hours when I participate in the Allegheny 100 Backpacking Challenge. I’m going to dedicate every blister, every muscle ache, bug bite, every bit of peeling sunburn to you. I’m proud of how hard you fight. If you can keep this up, I can hike this hike. I feel like I’m on some weird, parallel but opposite course with you. I’m testing my brand-new limits, too, but in a different direction. We’ll travel together, each in our own way, and this weekend, I will think of you as I curse my way up yet another grueling hill…and I will be grateful for the pain.

  8. June 4, 2013 at 8:26 am

    I love you, Sarah! Bitch all you want, and then get your ass to pt. (It doesn’t always hurt!)

  9. Flannelberry
    June 4, 2013 at 8:33 am

    Thinking of you.

  10. Stella
    June 4, 2013 at 10:55 pm

    Good luck at PT! It’s no fun but… Later you’ll always thank yourself. My docto currently wants to send me for acupuncture so I’m kind of stressing about that (You haven’t happened to try that have you?) I was brought to your site because of a review you did on Topiramax; I’m on it for migraines and kind of worried that I lost six pounds in five days. It’s nice to see that there’s other people who have the same side effects as you and you’re not randomly dying from a new medicine!! (though I feel zombie-like enough… XD)

  11. Michelle
    June 5, 2013 at 3:46 pm

    Sarah, this post stopped me dead in my tracks. I wanted to yell “Yes, That’s it!” and then cry. I don’t have the same issues nor the same level of restrictions from life as I want to live it as you do, but oh man, the body thing! To no longer be The Strong and Capable One, to have to sit by and watch someone else ride my beautiful mare, to have to choose between a trip to the grocery store or some necessary chores around the house, is maddening. To read your words, see it all laid out so clearly, was a huge relief.

    I’m going to open a bottle of wine and have a glass for you. Please make that PT appointment!

  12. Barbara Hoffman
    June 6, 2013 at 1:57 pm

    I’ve done a lot of PT and it helps as does the TENS unit. It’s sort of like exercise. It’s hard to make yourself start, but once you do you find it is a good thing. The charm is in finding the right PT for you who not only understands your physical needs but understands the psychic stuff as well. Go make that appointment or I’m going to show up with some liver and onions!

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