pain management

I check my list and lean on my cart. There’s that familiar flutter, the anticipation of it’s going to get worse and I’m stuck. I’m here to buy groceries and the pain in my legs is explosive. I could desert my cart and drive home, but we need food. I began the shopping trip okay, my legs cramping but tolerable. And then the ache crept, grew bigger and I have three more aisles to go.

Butter, sour cream, milk go into my cart. My left leg feels squishy and I know there’s blood pooling in my liner. (A liner is made up of silicone which goes over my leg and then fits into the protheses.) What I need is some privacy; to take off my legs, ease the pressure and clean up the blood. I have to get to checkout.

One step. Two steps. Twenty steps. A hundred steps.

My hands shake as I plunk every item onto the conveyor belt. Fast and careless. While I pay I look for a restroom sign and there it is; a beacon. Public washrooms are gross and they’ve become my safe haven.

I roll my full cart into the handicapped stall. I sit down hard. Legs off, shoulders sagging, my head in my hands; I wait. Until the throbbing subsides. Pain is a second heartbeat. A ragged pulse.

I grab toilet paper to catch the dripping blood before it reaches the floor. There’s a scrape, a shuffle outside the door. Deep breath. I slide everything back on, biting my lip as the liner rolls over the open wound. Opening the door, I apologize to the woman with her baby for taking so long. For a quick second I think maybe I should explain. But. No time. No strength.

She smiles. “No, no. That’s okay.” Her sincerity, my weariness almost makes me cry. Now I have to get to my car.

One step, three steps, a thousand steps. I still have to drive home. 15 minutes of torment until I reach sanctuary.

Since being burnt and losing my feet due to a horrific car crash 17 years ago I have dealt with chronic skin breakdown and pain. There are days of reprieve. I’ve even had weeks of reprieve, but my skin breaks down, I get different liners, new prosthetic legs, and pain resurfaces. Distress is never far away.

A few short years ago I wrote a book. A memoir with a cover and publisher and title and everything! There were book signings and television spots, months of feeling like the luckiest woman in the world.

I was invited to speak more. My kids began to grow up, turning into people with lives of their own. Life got busy. My legs were an ongoing problem. Battling infections. Energy waning. A bad week spiraled into a bad month and then it was, “it’s been a bad year and a half. Oh, um, I guess it’s been two years now.” There didn’t seem to be an end. Bad legs became bad health. My body couldn’t cope. There were frequent visits to doctors. Blood drawn. Priorities changed.

Careful with my time and energy, my life is a forced list of capabilities. There’s little room for extra. I’m fine until I’m not. Each day is different. When it’s a good day, I’m grateful and I go with it – no analyzing. Walking. Seeing a friend. Going to work. Yay! Unless I’m obviously limping or I tell you “my health is for shit”, most people will assume I’m alright. I want to be okay. Because I’m over it. I am so sick of being sick. You get tired of explaining. My complaints on Facebook would look like this:

Legs hurt. Again. Please send chocolate.

In bed. Watching Downton. How cute are Mr. Carson and Mrs. Hughes?? (I did text that to a friend.)

Full thickness wound. Boo.:(

Really missing morphine! #nostalgic

On prednisone for some weird immune thing. I’m allergic to myself. Feeling manic. (For those of you who have had the delightful/disturbing experience of being on that steroid you get this.)

I put out the happy stuff, not because I’m lying about my life but because these issues can be consuming and my life has other parts – lightness, sweetness. The bad cannot outweigh the good. My family. A great book. A dancey Annie. A funny, weird thing Ben said. Good friends. The TV I’m obsessed with. If I’m not driving or working, I’m resting. I don’t have a choice. I have to go to bed. That gets old fast.

So, what is the point of writing this?

To fill you in, to catch you up on where I’ve been. This is what’s happening. I felt I owed it to you guys, to the kind people who followed me on this journey of writing. I was around until I wasn’t. To say I’m so sorry to my writerly friends that I haven’t been around.

To tell those of you who deal with chronic, persistent anything that you are not alone. As children we’re told we can do anything and we grow up to discover that might not be true. We have limits. We’re told to push past and soar. Sure, yes, sometimes that’s possible. But. Sometimes in order to thrive we need to acknowledge our limits – not in defeat but with acceptance. Sometimes it’s worthwhile to say this is hard. In the muck of it all I can still see the good and make the most of living. Because there is so much good.

 

28 thoughts on “pain management

    1. heidi Post author

      This was about being honest – thanks for saying so. So much time had passed and I sorta withdrew, so I felt I owed an explanation. You are always so good to me. So good. And I’m very grateful. You are a fabulous human being, Julie. xoxo

      Reply
  1. Ann

    I wish I could hug you, so consider yourself hugged. I think part of getting through is writing through, but that can make the pain feel even more keen at first–then hopefully less as people gather to welcome you back and say “me too, thank you” and cheer you on. You are a source of such strength and compassion, even while you experience your body’s limits and frustrations. You are tending to others and to your self as you tend these wounds. Wishing you a reprieve.

    Reply
    1. heidi Post author

      I consider myself hugged! It was so hard to get back into writing. I was spent after my book and then, well, you know the rest. You are right – writing through to get through. I finally did and it helped. I completely freaked out about posting this because it’s vulnerable and so much time had passed. I’m also not really into people feeling sorry for me. But here it is. Thank you for being here. For your wise and kind words.

      There has been some reprieve. It’s been a pretty good week.:)

      Reply
  2. Jennie Goutet

    It was hard to breathe reading this.

    Since I have about zero words that will be any use let me just say instead that I was glad to read yours so that I could share a tiny part of your life that way.

    Reply
  3. Amanda Vooys

    Sending love your way. I get it(not to the full extent of your pain of course), chronic pain is exhausting and you can’t put it out there all the time or that is all you will be. I think about this too… If I talked about it I would never stop. So it’s” I’m fine”, “it’s good”, because it’s so much better then it was but it still is always there. Eran and I were just laughing about when I tried prednisone numerous times just last night. I turn into a crazy person, total pysco so I can’t take it! Hope you hit a long good spell soon. xo

    Reply
    1. heidi Post author

      Yes!! I know you get it. It’s exhausting to talk about so “fine” is easier. Prednisone is nuts right? I felt flat and crazy energetic at the same time – like I could do anything, but do not ask me to feel. Zero feelings.

      Thank you for the love. Hope you feel better, too. xo

      Reply
  4. Miriam

    Not to the same scale, I am sure, but I remember being in so much pain during a pregnancy that I could not walk to the back of the store to get milk, even though I knew I had another baby at home that needed it. The clerk at IGA turned off her till and went to the back to get it for me. It’s made me a forever loyal IGA customer. At the time I called all of the grocery stores in the area and asked if they delivered or if they could even get someone to assemble the order and I could pick it up. I am not in pain now, but I am so grateful that they are now doing this at Save-On and Superstore. It’s worth the nominal fee when you are in pain or have someone sick at home.

    Reply
  5. Wendy Taylor

    Thanks for your raw honesty Heidi! These last 2 years we have learned more about the unseen challenges that people face and how quick others are to tell you ‘it doesn’t look like you have a problem’. We deal with so many personal things in our lives; we all need to be more accepting ans kind to one another.
    Sending hugs and good thoughts your way! Thanks for making me stop to think!

    Reply
    1. heidi Post author

      Thank you for your words here, Wendy. It means so much to me. Absolutely yes, we need to be more accepting and kind to each other. It’s good to “see” you.:)

      Reply
  6. Faith Bateman

    You continue to be one of my heroes Heidi. An amazing woman who shares with transparency, feels deeply and inspires. Praying freedom from pain my dear

    Reply
  7. Wendy

    This was very difficult to read. I am so very sorry to hear this. I too live with chronic pain. It consumes and rules your life and yes, you get tired explaining. I simplified and just say “I have the monster” to my family and good friends and they get it. Thank you so much for sharing.

    Reply
    1. heidi Post author

      Oh I like that you have a defining word – something everyone understands. It is much easier than explaining yet again, which sometimes is just as tiring as the pain. Thank you for sharing here – it means a lot to me. I wish you strength and peace.

      Reply
  8. Lana

    i get it. not in a “oh man, i’ve been there” way, but in a chronic-pain, chronic-stress kind of way. i have a handicapped placard now, so I get the constant and exhausting pain. the work, the restlessness, and dr’s appointments. it’s so hard to know when to push through, and when to acknowledge the limits.

    L.

    Reply
    1. heidi Post author

      Yes! It is so hard to know when to push through and when to say enough. I struggle with this often. The back and forth is exhausting. I’m with you. I’ve had to back out of commitments and I hate that, but it’s necessary to function well. I want more than just getting by – you know? So for the sake of well-being sometimes I say no. Wishing you courage and a whole lotta peace.

      Reply
  9. Katie

    HEIDI!!!! It is SO good to have you back; I have missed your voice! Thanks very much for this honest update. I am sorry to hear that things have been so difficult. Your description of your grocery store experience is such an important reminder for me to be kind and patient with everyone I meet; we really have NO idea what that person is dealing with at that given moment. Love to you my friend.

    Reply
    1. heidi Post author

      KATIE!!! I love seeing you here. We are so due for a coffee. Thank you for your sweetness and understanding. I think you are just wonderful. xo

      Reply
  10. Kerstin

    Heidi, my friend. Thank you for writing and sharing. You are not alone either. I am glad you are choosing the good over the bad, I can’t even imagine how hard that is some days. Thinking of you, always. ❤️

    Reply
  11. Tori

    I get it. I’ve been there. Maybe not to the extent you do… I mean, I still have both my legs. But I know how it is to push through the pain when you have no choice, and how difficult it can be sometimes when you have no choice but to say you can’t do it today.

    I also understand your desire to focus on posting only the happy stuff on social media. Mostly people don’t know when I’m in pain, or when my health is so poor it’s all I can do to get up long enough to eat. I just say I’m OK, because explaining all the reasons why I’m not usually takes more energy than I have. Besides, I don’t want to make others feel bad just because I do.

    Reply
    1. heidi Post author

      Thank you so much for sharing, Tori. I was just telling a friend how sometimes explaining the issue is as exhausting as the issue – I hear you on that. Hopefully you have some loved ones you trust. I have some good friends who get it and that helps so much. It’s so great you have boundaries and know when to say no – as difficult as that is! It’s important to take care of yourself. To give yourself grace and rest. I wish you more good days than bad, and if it’s bad, to hold on. All the best to you…the very, very best.

      Reply
  12. Emily

    Heidi,
    I’ve read this a few times now and am finally commenting! Is it bad if I say it brings me comfort to know I am not alone? Obviously not in the same way but I do understand chronic pain. Lately I’ve been feeling extra discouraged and find myself imagining what my life could be like if I wasn’t in pain all the time. It’s so bad, I need to stop! Have you heard of the “spoon theory” when talking about pain? Google it if you haven’t! But we have to choose our activities that our bodies can handle each day and so many people just don’t get how difficult that is.
    Have no shame in watching lots of tv. The other day I called myself lazy to a friend who is chronically ill and he stopped me immediately and said “never call yourself lazy. You and I both know we’d be doing so much more if we could. We are not lazy.” It brought me some comfort so I thought i’d share. Now to go watch some trash tv… 🙂

    Reply
    1. heidi Post author

      Emily, thank you for this. I read this late last night and you made me cry – just a little.;) It should bring us comfort to know that we’re not alone. This stuff can be isolating. Just the other day I was in bed again feeling crappy and then the next day was different, better and I did everything I could to enjoy it. We live our lives day by day and it’s tough not to be discouraged. We want to give up. I get that. I’m with your friend – you are not lazy. No way! I struggle with that, too. And the fear of people judging me. I want to do it all but I can’t. It’s okay. You are doing the best you can. That is enough – truly. Your words comforted me and made me laugh last night. Yes to TV!! Thank you so, so much.

      Reply

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