Yes, But…

January 10, 2012 at 3:42 pm (Uncategorized)

My hope for this year is that I can be fully and deeply alive in the days I am given.

Who wrote those nice words?

It couldn’t have been me. I’m about as deeply alive in this day as a clod of frozen dirt.

I slept for sixteen hours last night and awoke feeling as though my body and brain were encased in concrete. Pushing through a few mundane tasks today hasn’t enlivened me. I’m more tired. My hands are swollen by sarcoidosis-induced arthritis. My knee throbs. Worse is the unholy trinity of neurological problems caused by the neurosarcoidosis. A searing headache, vertigo, and periods of vision loss have been bothering me—no, plaguing me—for the past couple of weeks. It has been especially bad the past few days. I can count the hours I’ve been stable enough to get out of bed (when I literally am not falling over from vertigo) on one hand.

I want to feel alive. I want to look out my bedroom window and notice sunshine glinting off the distant mountain peaks. I want to be free of pain and filled with energy. But I am neither.

I never promised you a cheery read on Chronic Town. You aren’t going to find purple sunsets and puppies, much less inspiration, on this blog every day. However, I did promise to tell the truth about what it’s like to live with a wretched and painful illness. Sometimes that truth is sweet and nice. Sometimes when the illness has backed off a millimeter or two, I can see beyond the edge of this minute to hope. Then there are days like this one, when everything hurts, when nothing helps, and I feel alone. This is one of those days. Everyone is Chronic Town has these days. Telling the truth means telling you about these days.

The best thing I can do for myself is crawl back into bed and stop fighting the disease for this day. That is what I am going to do.

How do you get through your not-nice days? How do you deal with physical limitations or a tough time?

12 Comments

  1. Leanne Shirtliffe said,

    R, my heart goes out for you. I wish I lived closer. I don’t think I could do anything, but I’d do what my mom has done her whole life: make some meals and maybe – just maybe – make you smile or laugh. But you’re right: no one says you have to fight every day. Often your body knows best.

    My 7yo had a migraine on Saturday (her first and hopefully last). Her body told her to sleep 14 consecutive hours.

    Hoping the unholy trinity vanishes soon.

    Hugs.

    • Rebecca Stanfel said,

      Thanks, Leanne. I wished you lived closer too. I’d hit you up for writing dates or to meet for a glass of wine (or two) after work. But, as it is, your blog makes me laugh, and your kind wishes here have filled my heart with warmth. So, thank you…mission accomplished.

      (Speaking of Leanne’s blog making me laugh…for those of you who need to get in touch with the humorous side of parenting and read some kick-ass writing, you must check out Leanne’s blog, Ironic Mom. (http://ironicmom.com/) Be forewarned, though, when your guard is down she’ll sneak in a poignant piece that will make you cry. But in a good way.)

      That’s just awful that your daughter had a migraine. I hope it’s her last too. There should be a law against kids getting headaches (or any health problems.)

      Vertigo and white-outs have been better today. So, maybe there is something to the sleep-of-the-dead school of recuperating. My spirit feels a little stronger today.

      Thanks again for brightening my day.

      Hugs back,
      rebecca

  2. Randy Bekkedahl said,

    So sorry to hear about your day, but appreciate your honesty and willingness to share. I had three good days in a row last week and was feeling on top of the world, then woke up the fourth day stiff, sore, achy, fatigued, etc. And I found myself right back at the bottom of the pit.

    I wish these diseases were more predictable, or at least more consistent so a person could anticipate what the day would hold. Instead, I take my morphine pain killers, my Provigil to fight the fatigue (Provigil is a synthetic amphetamine–the air force gives it to pilots before long trips) and my multiple other pills and injections, all in an attempt to be somewhat “normal” and function at a very basic level. And the sad news is that it’s not working. And the doctors are running out of things they can do to help. On bad days I find myself thinking that when I reach that point, it will be time for me to exit this world.Of course I can’t, there are still people who need me, but the thought is there because of the damned disease and it’s an attractive thought when I’m miserable.

    A friend who is going through chemo and radiation for brain cancer told me that when she has a bad day, and can’t see the light at the end of the tunnel, she has faith the light is there and in time she will feel better. I admire her greatly for her “glass is half full” attitude, but it seems out of my reach for some reason. The pain is just too great and I lose the ability to have faith in the future. It takes all I have just to get through the moment.

    My hope for you Rebecca (and me!) is that science will progress to the point they can solve our health problems, and in the meantime laugh when we can, and pull the covers up to our chins when we can’t.

    Hang in there, we’re rooting for you.

    Randy

    • Rebecca Stanfel said,

      I know how you feel, Randy, and I appreciate your honesty and willingness to speak the dark thoughts we aren’t supposed to mention. I think the reason it’s sometimes hard to claim the “glass is half full” optimism of your friend with cancer is that you’ve been sick and in pain (and enduring tough treatments) for a lot longer. This isn’t to diminish either her illness or her spirit. But most cancers don’t consume you (slowly and painfully) for 10, 20, or 30 years. They’ll more likely kill you quickly. This is the aspect of chronic illnesses that is the most difficult to explain to healthy folks. It’s chronic. Of course, we hold onto the hope you gave voice to–that medicine will catch up to chronic, auto-immune diseases. We’re hoping and praying for that–or that we’ll go into remission spontaneously. In the meantime, we’ve got to live with diseases that are painful and chronic. I don’t know about you, but I have a harder time with pain and the other problems sarcoidosis brings me after I have a good day or week. I think it’s because (even though I try not to) I start hoping that I’m better after even just a day of feeling better. I start writing more, connecting with friends and family, bonding with my kid and my husband…and then, SLAM, it’s back to bed, back into pain.

      It’s almost funny–you and I take nearly the same meds. I switched from Provigil to Focalin recently because the provigil was contributing to my headaches, but they’re very similar drugs. And when my pain gets out of control, I take a controlled release form of narcotics. Thank God we have doctors who treat our pain and try to treat our fatigue.

      You hang in there too. We’re rooting for you too. I can’t tell you what a relief it is to read your comments and know “He gets it!”

      Thinking of you,
      rebecca

  3. nan said,

    Must be to post-holiday sarcoid call to arms…..the holidays were smooth, not without vertigo and ups and downs. An improvement over the flu-shot reaction, upper respiratory infection, allergic reaction (hives to the max) to the antibiotic then all ending in my lower back/hips and not being able to stand till before Christmas. Thank goodness for the walker – did I say this started in September?
    Last week, I cooked the old standbys and we were all rolling in the meals like a dog that found something wonderful in the grass – the headache, vertigo and fatigue are back. My father-in-law passed away on New Years and we made the decision for me to not take the trip to Chicago. This was a tough page to turn. Bruce said he did not want me to get sick and wear-out. Neither do I – feel I am letting my best bud down, something I feel alot. Back to the mantra…I wish I could just suck it up and trudge through. This disease keeps tapping the brakes. Makes it hard to drive. nan

    • Rebecca Stanfel said,

      Oh, Nan, I am so sorry to hear about Bruce’s Dad and the terrible time you’ve been contending with…

      Crap, crap, CRAP! We have such a delicate hold on health that any small thing, like a damn flu shot, can set off a cascade of problems. But, oh…CRAP!

      It’s no consolation, I know, but I do understand, I think, what you’re contending with. I hate the vertigo and the other “standbys” of sarcoidosis that make our lives such hell. Hang in there. I think the worst of it will ease in (the hopefully) not-too distant future. I also have experienced the sadness and frustration of not being able to accompany my partner when I have really wanted to. I was too sick to come with Jay to his Grandfather’s funeral, and I was in the hospital for his Grandmother’s funeral (so that he didn’t feel right leaving me.) Bruce is right. A trip might have caused you to lose your tenuous hold on health. But that doesn’t make it suck any less.

      I also wish I could suck it up and trudge through, as you put it so well. I will tell you what I sometimes need to hear, though. This isn’t a question of will power. If it were, you’d be well and I’d be well. I’m sure you are sucking up through pain and difficulty a thousand times each day already. You are doing battle with a fierce opponent.

      As Randy said to me, we are rooting for you. Hang in there. Hang tight. You are strong and amazing. Don’t forget there.

      Hugs,
      rebecca

  4. Barbara Barnes said,

    Rebecca, I too appreciate hearing what is alive and real in your life. Chronic Town has so many of its own ordinances, taboos, requirements and climates. I feel sad with you and send hopeful whammies your way! I take to bed when I have a bad day… and do my best to smile at my inner judges the way I would a dimented relative… the “oh, uh huh, yes, uh huh, surrre” kind of look. Hope you can use what you know is true about yourself and know this too shall pass. eventually. maybe sooner…
    love you… B

    • Rebecca Stanfel said,

      Thanks, Barb,

      I am reaching up to catch those hopeful whammies.

      I’m also taking your advice and practicing my best look to give the inner, crazy judges, who whisper about taking to bed for a day (or two). “Yes, uh huh, surrrre,” indeed!

      It will pass. I can remember that most days.

      love,
      rebecca

  5. Elena Aitken said,

    Wow. It amazes me with what you have to go through. And no, you don’t have to be cheerfully optimistic everyday. That’s not realistic. Your attitude about what cards you’ve been dealt inspires me. You’re clearly a fighter and even if you take a day off, it does not mean you’ve given up the battle. Everyone needs to rest.
    And by the honesty of your words, I don’t think you took a day off of fighting at all…you just fought the battle a different way. 🙂
    Hugs.

    • Rebecca Stanfel said,

      Thanks, Elena, for those very nice words.

      I’ve been pondering your comment since I first saw it (sorry for the delay in responding), and it really cheered me. You know, I am a fighter, but I sometimes forget. Those inner judges that Barb described above always help me keep track of every nap or day of rest–or any other “lapse” in my struggle to live as normal a life as I can. They aren’t so good at tracking all the hard work I do fighting this disease and fighting for a functional life. And you’re right, we all need rest. It’s not weakness to rest. It can indeed be part of the fight.

      So, thank you for this perspective. I get such perspective from your blog too.

      (While you’re checking out Leanne’s blog, make sure to take a peek at Elena’s too. (http://elenaaitken.com/) She’ll remind you to breathe in your busy day–and provide an insightful and meaningful perspective on parenting, fitness, writing, and more.)

      Thanks for the words of encouragement.

      rebecca

  6. Paul said,

    You said it Elena

    Rebecca- Hang in there – you’re not alone

    Even when it’s bad you’ve still given me a little chuckle “purple sunsets and puppies”……purple puppies??

    Hugs
    Paul

    • Rebecca Stanfel said,

      Thanks, Paul.

      That chuckle was an inadvertent one. My inner editor must have already headed off to bed before I posted that. The sunset was supposed to be purple, not the puppies.

      But if I can give a laugh, so be it. I’ll leave the purple puppies in there.

      xo
      rebecca

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