By: Revanche

I want my body back

September 18, 2012

It’s Day Four of narcotics. Narcotics that my doctors dole out as soon as I ask for them because they have no answers for me, because they know I’m not kidding, because they know I don’t ask lightly and because they know I’m not at risk for drug abuse, I practically never use them.

Because steroids don’t work, because every physical therapy has been tried, because every other avenue has been tried, because I grit and bear it every single day of my life. Because I don’t have any other options but to suck. it. up. And hour after hour, I live in pain. And unless it is literally paralyzing, blinding, cut my damn throat now please pain, I don’t take narcotics.

And it’s Day Four of the narcotics.

The thing is, they don’t work like you’d think they do.  They’re no picnic. They don’t just magically smooth the pain away like a silk glove, they don’t make the world a happy shiny floaty glowy place. It’s not an All Better for two, four or six hours pill. They make me barfy, they make my hearing go in and out, they give me cotton mouth, I get dizzy or fuzz-brained or talk funny, they make parts of me numb or more sensitive or any number of crap odd things. The more I take, the worse it gets. It does, usually, take the edge off the worst of the pain. And when your pain is so screamingly bad that none of the regular medication can even dent it, it’s worth the side effects.

My god, I want my body back. Every day, I’m grateful I can walk, I’m grateful I can talk, I’m grateful if I can raise my arms or hold a pen, bend my knee or sit cross legged, I’m grateful I can earn a living and take care of myself, and my family and friends and I can finally walk my dog again.

Like this commenter TPP said,

your health situation seems to fall under the “mild” spectrum. There is no doubt that getting out of bed, pushing through long work days, and taking walks are difficult, but the bottom line is, you are able to do it with willpower.

To some degree, yes, that is right.  So I am so incredibly grateful that I can get out of bed, when I can.  Absolutely.  And so thankful to have been able to get as far as I have.

At 21, I was terrified that I would be a bedridden cripple by this birthday. And every time I am bedridden for days and weeks, I wonder, how long, this time?  Will this be it?

I deliberately set several goals for my 30th birthday, fearing that if I didn’t get it done by now, I would never be able to reach for them again at my rate of deterioration. Honestly? It wasn’t totally unwarranted.

This weekend triggered those feelings in full force.

I was assured on this very blog, back then, by a very dear friend not to lose hope because medicine would continue to advance, much as my condition might. She was not wrong, but though medicine might have made progress, I still have no real diagnosis.  Though I’ve pursued far more help in the past few years than in the preceding 17 years because I was so put off by doctors telling me my condition was all in my head and there was nothing to be done, I’m still nowhere with the medical profession.

So this week, I find I’m so far past the end of my rope, with this nonsense which wasn’t solely about the dog, but really from the offhanded selfish attitude that I don’t matter except in the context that their business is tended to. I’m done with family, and definitely not depending on them for support. I’m nowhere with them.

I certainly give freely but on my terms. Especially when there’s never reciprocation – I never require reciprocation for my gifts but there is absolutely an end to this well.

Damn it. I Want My Body Back. I want to feel right again. I want to feel true to myself again. I want to set my feet on the ground and trust in the stability of the earth, like an athlete again. I want to feel the wind blowing past, love the sun on my face, on my arms and legs and back and stretch my muscles and feel the burning of exertion, not the burning of pain, like a shame of failure and weakness, again. I want to blow it all out on the track, sprinting for all I’m worth, knowing that I can throw myself on the ground and catch my breath again the same day, not three weeks from now.

I wrote this a while ago, out of frustration, never sure if I wanted to share it because it feels ungrateful because I did at least once have this, but I don’t mean it as a complaint. I can miss all I’ve lost while still appreciating all that I do have in my life right now.

This is just apt right now.

**********

I want my body back

Morning.
Joints, roll call.
Who is fit for duty?
Roll call.
Start at the bottom: locked in rigor.
Toes are swollen. All of them.
Needs ice.
Top of the foot.
Needs heat.
Don’t turn that ankle.
Needs compression.
No weight on that hip.
Needs more heat.
Spine’s tweaked.
Needs adjusting.
Can’t raise your arm, that shoulder’s real messed up. Wrists are out of it today.
Don’t breathe so hard, ribs are gonna burst, tear or something.
Chest is compressed, don’t lean forward.
*blink*
Fingers are cracking. That’s kinda gross.

Who’s fit for duty? Anyone?
Neck’s only half bad.
No headache.
Left side’s mostly in commission. Elbow’s busted up but …
Today’s a good day, then.
What was it like again, once upon a time?

I want my body back

Leaning backwards and forwards, hefting and running
Lithe and sweat, burning and all
Punching and kicking, stretching, breaking, building, leaping, again!
Give me twenty.
Give me another.
Another,
Another,
Again!

Tip at the waist, keep your back straight, keep your center of balance low.
Reach further, further, breathe out, reach further.
That hurt? Good.
You’re not trying hard enough til that sweat burns your eyes.
Laughing,
Driving,
Comradery
in the pursuit of perfection.

I want my body back

Brushing a coat, picking out hooves, saddling up,
all rituals and bonding
Sitting a seat, a rider’s seat, a true rider, not a passenger, long years away,
reins in hand,
Hands behind your back,
Back straight,
Shoulders back,
Knees bent,
Heels down,
Head up,
Move with your horse.
Use your weight, shift your body, not your hands,
Fly!

I want my body back

Pick up your pace, pick up your knees, higher, higher, higher
In your nose, out through your mouth,
Elbows close to your sides, like blades,
Work it, work, work,
Exhilaration.

I want my body back

Warm cuddles, 
Tiny fingers, little toes,
Perky nose and microscopic eyelashes.
Yes, I’m your aunty, no, I can’t keep you. I
think your mommy would miss you.
But a piggyback ride home would be the best way
to get home, don’t you think?
After we climb that tree and catch that cat,
and teach you how to play one
more
game. 

I want my body back.

**********

38 Responses to “I want my body back”

  1. Kris says:

    Yikes. I don’t have anything to offer you but my prayers, and my admiration. Hoping this awful flare up settles down enough for you to finish with the narcotics. (hugs)

  2. Betty says:

    New here.

    I have had many health issues. Lots of suffering. Under control now.

    Turns out for me it is foods. The biggest problems are gluten, soy, and MSG.
    Corn can be an issue too. I do eat it once a month or, so.

    If you haven’t tried the diet route. It is well worth looking into.

    Wishing you well.

    • Revanche says:

      Welcome, Betty, sorry you happened by on a less than sunny day 🙂

      Thanks for the thoughts. Haven’t had the suggestion yet that this is diet-related but clearly the doctors aren’t coming up with any real master plans, so I may have to try that. I’m not a huge fan of the idea as I like to widely-range in my cooking and eating. Which is to say, I like to be utterly random! But it wouldn’t kill me to give it a shot and it might well help.

      • Ooh, yes, if you haven’t tried diet things yet, try them! I have a friend whose mysterious problems went away when she stopped eating gluten, and another with soy.

        I’ve been gluten free for a little over 9 months now, because I got a wheat allergy during pregnancy, and (after figuring out that say worcester sauce has wheat in it), it hasn’t been so bad. In fact, I’ve been slowly testing the waters recently (had a bite of wheat quesadilla, a bite of fried fish) and so far no ill effects, but I haven’t been desperate to go back yet because I kind of got used to it. (And I still have memories of throwing up.) Since it’s currently a fad diet, it is easier to avoid than it used to be

  3. It is so easy to go from grateful to hateful. Hang on. Virtual hug.

    • Revanche says:

      I don’t have these moods frequently, I’ve lived with this pain for about 2/3 of my life now so I’m used to hurting. Just an incredibly bad day out of a string of them. 🙂

  4. TPP says:

    Sorry to hear that you are in a bad flare. I truly did not mean to be blase about your suffering. I did not mean to imply that your suffering is mild, but that in the overall scheme of disability and illness…you are not disabled (thankfully!), so major life decisions, such as pregnancy and rearing children, are not already yet decided for you. But the limited spoons can make these decisions to be difficult ones.

    I hear ya about the narcotics. They are not fun. I’m sure this has been suggested before, but there are a lot of uninformed docs out there, so at the risk of butting in, I’ll list some suggestions. Feel free to ignore this if you life. There are other pain drugs such as Gabapentin, Lyrica, and certain antidepressants. Pain patches. Additionally, spinal cord stimulators and pain pumps can be implanted. Ketamine infusions may help too.

    This post really spoke to me. I want my body back too. And the family issues? I can definitely relate, oh how I can relate. When I was in the “moderate” stage, I could no longer work, drive, or being out of my house for longer than a few hrs…even if I was just sitting. Wind, air conditioning, lights made the pain so. much. worse. Getting out of bed, showering, getting dressed would take so much time and so much willpower. At that time, I had just quit working after pushing and pushing until I could no longer (all the while I was helping to care for my mom who was dying of cancer). What did my family do about this? They assigned me the job of taking care of my grandmother. Anytime she needed to go to the doctor? “Call TPP! She doesn’t work!” As if I chose not to work, as if instead of working, I was sitting around eating bon bons all day. As if there was no one else who couldn’t take a precious half day off work to do this.

    Anyway, horrible flares can cause so much fear and so much anxiety; I can never get use to them. I hope this passes soon for you.

    Take care!

    • Revanche says:

      Oh goodness, I didn’t perceive your comment to be blase in the least.

      I just excerpted that phrase because it touched on the key that I happen to live by: it’s bad, really bad sometimes, but right now it’s survivable because it could still be a lot worse. I’m well aware of that and accept that this is currently my life and continue to be grateful for what I still have even if I wish for more. Even if I’ll always work for more, hope and strive for more, that doesn’t mean I’m unappreciative for what I do get to enjoy today. Even if right now, it’s just a nice warm day from this side of the window instead of that side.

      I’ll continue to wish for better days, for both of us!

      And thank you for your kind thoughts, hearing about your experiences and everyone else’s kind comments are part of what I appreciate about today that I didn’t have in the yesteryears.

      I’ll run some of your thoughts past my med professionals – we’ve tried some of them and chosen not to try others for some reasons but maybe a few of them might be options. We’ll see!

  5. Quest says:

    Someone up there in the comments mentioned a food allergy. I have a feeling (just a feeling) that you may be gluten intolerant. Gluten plays havoc with the body. I have been diagnosed with an auto immune condition in which the body’s immune system attacks healthy tissue and, in my case, I can never eat gluten. It causes painful joints and flare ups. Nothing as bad as yours by the sounds of it but there have been days when I could barely get out of bed and move around for the first hour or so of the day. I am AMAZED that no doctor has yet mentioned to you that your problems might be diet related … just amazed.

    Here is what I am supposed to do wrt diet and it certainly helps. I have a real problem with food because I’m an emotional addictive eater but I want to feel well and I AM making progress with the eating plan:

    2 tbsp of coconut oil every morning
    No gluten EVER
    No sugar (I’m getting much better at cutting this out)
    No caffeine (ditto)
    No alcohol (ditto)
    No cow related dairy products (I eat goat yogurt, cheese, milk)

    This is just for starters. There are as well a range of vegetables and fruits that I am not supposed to eat. The first question I always ask myself, however, is “Does it contain gluten?” Please try cutting gluten out of your diet and see how you feel. It may take a few weeks to see results.

    • Revanche says:

      I must be such a baby that the idea of cutting out gluten makes me frown. But I am willing to give it a trial run – we have a relatively diverse enough kitchen that it won’t be hard to include non-gluten foods. The trick would be to not accidentally include gluten-containing foods.

  6. I’m sure I’ve suggested this to you before, but I had great success with the Mayo Clinic in Rochester, MN. If you haven’t tried a Mayo clinic, I really think it might be worth a shot. They really take the time to explore all the facets of your problem with doctors in various disciplines, and try to come together to figure out a solution. It was costly and time-consuming, but well worth it for the amount of narcotics I don’t have to take any more and the amount of daily pain that I am in currently (mild, in the true sense of the word).

    • This is a good thought, Revanche. There’s a Mayo Clinic here in Phoenix, too: not so far away. You might think about it.

      There’s a Marriott on the property where you could say. There also are at least three women PF bloggers in the Valley who would put you up while visiting there.

  7. Ivette says:

    Your day sounds a lot like my journey to being diagnosed with RA after nearly 1 1/2 of constant hospital visits, doctors appointments, and testing. To finally have a simply little ultrasound on my hands that revealed it all.

    Hang in there, I know some days can be easier than others especially when there are more bad days than good. The main medications are just a big of a pain for the little relief they provide at times.

    You are in my thoughts. Warm and well wishes.

  8. Ivette says:

    Your day sounds a lot like my journey to being diagnosed with RA after nearly 1 1/2 of constant hospital visits, doctors appointments, and testing. To finally have a simply little ultrasound on my hands that revealed it all.

    Hang in there, I know some days can be easier than others especially when there are more bad days than good. The pain medications are just as big of a hassle for the little relief they provide, if any.

    You are in my thoughts. Warm and well wishes.

  9. EAST says:

    I’m so sorry you aren’t feeling well. It sounds like you aren’t on the right drug. It took a while to find something that worked when I got hurt, and it’s different for each person. If this is a long term solution (probably won’t be) switching to something long acting probably help- it’ll eliminate the peaks and valleys you speak of. I can say that when they figure out what’s going on it does get better. Some times it just takes a while. Feel better soon.

    • Revanche says:

      Yes, finding the “right” drug(s) has been a long haul and even now I don’t think we’ve got the right combination. Hoping to get there though.

  10. Ms. S says:

    Sending positive vibes your way. Hang in there. Loves and hugs!

  11. I can’t imagine what you are going through. 🙁 I also find it suprising that no one can diagnose you. You need House.

    *hugs*

  12. Really, Lost Goat has an excellent idea. And if you have RA, Arizona has world-class specialists in RA because so many patients come here to be where the climate is hot and dry. Some RA sufferers feel a lot better in a dry low-desert climate; knowing that, the specialists have followed them here.

    It might be worth checking into that.

    • Revanche says:

      /sigh/ I LOVE heat. Love love love it. Mostly because that’s what I grew up in. But yes I said I’d have another go at diagnosing this year. (And last year. And year before that.) It’s a ridiculous sort of dance. And exhausting. But will step in the ring again.

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  14. jesinalbuquerque says:

    What a beautiful, brave post. Listen, I don’t want to sounds like your mother here (or like a certain kind of mother) but –Get your priorities straight. Put yourself first, numero uno, no questions asked. Keep up with whatever medical help you’ve been getting, but try other things too (maybe you already have, and if so sorry) Yoga, done frequently (even a few minutes of simple, non-difficult poses a day) works miracles. Take at least one, preferably two, classes a week. If you don’t know a good teacher, call several studios, ask to talk to a teacher, explain your condition and what you want and ask if there is a teacher there who is good at what you need. Try a naturopath, an acupuncturist, get regular massages. Go at it with a vengeance and decide you damn well will be well, vibrantly well, in whatever you think is a reasonable amount of time. At every step, love yourself and be good to yourself, some of these suggestions are really pleasurable. Sorry I’ve gone on so long. Kind of a ‘thing’ of mine. Go well down your path.

    • jesinalbuquerque says:

      Oh, and meditation. Huge.

      • Revanche says:

        🙂 I do appreciate it, actually, as much as it’s not always fun to hear all the time, it can help to hear different ideas. I have tried yoga but any regular yoga causes more pain – can’t put pressure on any part of the body at the moment. So I have to work on stealing little tiny bits of yoga that can be done and do that, then work my way up to more. But I do that with whatever I used to be able to do, and cobble together things. Have to do lots of different, creative, Frankenstein-ing of things to make any “workout” work.

        But thank you.

  15. oilandgarlic says:

    Have you looked into fibromyagia (sp?). A friend of mine has this and has all sorts of pain that sounds somewhat similar to yours. She also tried changing her diet at one point but she wasn’t good at sticking to it.

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