What If Desperation Can Transform Into Temporary Strength?

Dear Audy,

The wedding…it was beautiful. I’m so thrilled for the stunning bride and her equally stunning groom. I wish them nothing but happiness in their lives together.

My body…it survived. I threw away everything that day, all of the stress and cares and inabilities. I chucked the woes aside and I danced with my arms above my head. I put my hands in the air like I just didn’t care because of that fact that I did care. I cared very much about having the best time that I could and celebrating such a wonderful day.

It’s hard to explain how I got through such a big event when, so often, I can hardly get through a day at home.

I was watching The Walking Dead over breakfast this morning, as you do, when I realised a possible explanation for how I sometimes manage to physically push through an important event that just won’t be repeated.

I was watching a character running for their life (no spoilers, I promise). Running through pain, stress and confusion. Running fast, propelled by the promise of imminent danger. People can do some pretty incredible things when they are threatened. That flight or fight response can create instant energy in a lethargic body. Our survival instinct understands that a threat is not going to wait until we are feeling well before attacking.

Not the image that inspired this line of thinking, but you get the idea...

Not the image that inspired this line of thinking, but you get the idea…

What if that instinct, that power to flee, that fire to fight…what if that can be harnessed and used to overcome less life threatening obstacles? What if desperation, in different forms, can tap into the primal desperation for survival?

I am no stranger to feeling desperate.

These days, I am so desperate to enjoy any sort of event or activity that I won’t wear my sad face on such occasions. I’ve spent quite enough time at home feeling sick and sad over the past six and a bit years, I’ve learnt a thing or two about feeling pain without showing pain.

Don’t be fooled because you remember my bearded performance as Lord Montague in that high school production of Romeo and Juliet, I’m an amazing actress. I have to be, I’m trying to fool myself and I’m a tough audience. You see, anytime that I’m not scrunching up my face, or falling to the floor, or sobbing hysterically, or making that absurd wailing sound that I’m fairly sure means that I’ll become a banshee when I die… anytime I’m not doing that I am acting, to some degree.

Chronic pain doesn’t take breaks. Sure, it has an unpredictable ability to fluctuate in intensity, but it’s never gone. When I appear well, it’s usually because I am coping well, rather than actually feeling well. When we are having a good time together, you usually won’t see my pain until my body reaches the point of no-functiony-collapsy-exhaustion.

My last blog post was on the topic of feeling empty. Maybe, the desperation to fill that emptiness with something, anything at all, maybe that helps to allow me to summon extra strength. It’s not a singular driving force. That particular sense of desperation is accompanied by the desperation to not miss out on all of life’s wonders due to CRPS and also by my constant desire to still be me, to still do things that are an expression of me as a person and a friend, not just a sick person.

I’m still in here, somewhere.

Perhaps, sometimes, overcoming is simply a matter of different streams of desperation, combining and combusting. The explosion lights up my darkened mind like a flare in the night sky, rejuvenates my strength like a sugar overdose in a toddler. Much like the toddler, I will collapse afterward. I will spend days, weeks, even months recovering from the physical ramifications of the emotional blast.

Much like the person fleeing zombies, my body will give out the moment that I am safe. At the end of the party, at the end of the thing that I’ve wanted to enjoy, I will shut down, pain will skyrocket and probably there will be a flashing empty battery sign on my forehead. If I’ve had myself a soul replenishing good time, I usually wear this collapse with a slight smile of pride (provided that I’ve sustained no infectious zombie bites).

And so, maybe, that is how I managed to have such a lovely weekend for my friend’s wedding, despite the fact that I’ve spent most of this year flailing about and struggling for breath. Aside from this one, magical, weekend, I’ve been feeling overwhelmingly useless. Coping with pain flaring has been more of a struggle than usual and coping with life stresses has seemed like an unobtainable illusion.

Coping? What’s coping again?

I want my mojo back and I’m going to have to trek some hard yards in order to get it. Such journeys always start with the smallest of steps, little itty bitty things that allow me to feel even the tiniest bit of control over my mind and body.

I have to practise my relaxation techniques and increase the amount of time spent doing Feldenkrais and physical rehabilitation exercises. I have to try to reconnect with life, friends, my writing and figure out some goals that are achievable. I have to expose myself to information that is inspiring, read the work of writers that I enjoy, follow my interests and (most importantly for my daily sanity) filter my social media feeds and interactions to only include people and things that don’t leave me feeling negative or drained.

How do you get through important events, Audy? What do you think about my theory of combusting desperation?

Love & One of those itty bitty steps that I mentioned,

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  • 9 thoughts on “What If Desperation Can Transform Into Temporary Strength?

    1. Rusty Hoe

      Is it freaky that I just finished watch “Vatos” from Season 1 of The Walking Dead (for the 80billionth time, I’m a bit of a tragic) and clicked onto Twitter to see your post?

      I’ve had similar occasions where I’ve managed in the moment eg my son’s deb, and collapsed in a sobbing heap after. For me I think there are things that are worth it, that I get that extra mental push that I need to make it through. The worth of those events is way beyond the worth of regular daily events, (I am not motivated to do another load of washing on a bad day. I’d rather wear my mnaky pjs for another day than push through). I can push myself for a short time, knowing there’ll be consequences, but the consequences are worth it. No way I could sustain that day in day out for the more mundane aspects of life. Special events are a case of go hard, go fast, weep into your cornflakes for the next month.

      I do hope your mojo comes back soon. I’m starting to think mine left on Summer holidays and forgot to come back. xx

      1. Hayley Cafarella Post author

        Hehe! Nothing strange at all, I’d think it stranger if you *weren’t* watching The Walking Dead ;P

        The contrast with motivation for events and motivation for daily tasks is so huge. I got so confused after surviving the wedding with wondering, “Hang on, how did I do all that? Why haven’t I been off the couch in weeks?!”…quite nonsensical in retrospect, especially as weeks later I still haven’t fully recovered and I can’t really afford that body price on a regular basis! I do wonder if I can capture some sort of essence of that motivation that gets me through the important stuff and use it for smaller things though…I think I’m just trying to find ways to trick myself back into a better coping pattern…these thoughts might not actually go anywhere 😉

        I’m hoping that your mojo comes back too! It’s totally Summer’s fault, it’s probably been lifting mojos from all over the place…we need a mojo hunter *patents new super hero* xx

    2. Lisa Tait

      You are completely correct, Caf. I’ve had times like this, though I’ve not risked dancing with abandon… But maybe I SHOULD (note: I usually avoid saying “should” due to its negative connotations/shaming-blaming slant, btw) because one of the things which causes me regular and deep sadness is not being able to dance anymore. I mean, I could, I suppose. The last time I tried was maybe a year or so into CRPS which, for me, meant I was still walking just less and with increasing pain and worse, an overall feeling of… confusion, you might say. Like even more than the pain that was sharp and gasp-inducing was this undercurrent of mind-numbing pain which made it increasingly hard to think straight. Yeah, that. I feel sure you can probably relate.
      Anyway, that was a good 6 years ago as I ‘celebrated’ my pain-a-versary on the 9th of this month.
      That last time I moved carefully, slowly, not moving my legs, but more dancing with my torso and arms. But the shifting of weight back and forth always causes increased pain and the backlash which always seemed delayed by hours if not a day now seems to hit harder and faster than ever.
      I gave up on dancing because the after-effects seemed to outweigh the fun of dancing, moving my body to inspiring music, feeling free.
      But consequently, I now feel trapped, uninspired and sad. I’d love to take a Zumba class or Bellyfit; they look like things I’d totally enjoy!
      Maybe the thing to do would be dancing in my living room one day like I used to, when you’re alone and can dance without self-consciousness. Maybe this might give me that much needed joy injection, even if I pay the price of pain and even lower function for a couple of days afterward? I mean, I often pay the price for doing next to nothing, or actual nothing! Why not at least enjoy the ‘crime’ if you’re ‘doing the time’, know what I mean?!
      Anyway, back to your post. Even before CRPS I have had many instances where I’ve managed to push through only to collapse after, exhausted. Several examples from the Adventures of Mommyhood, or when working though the sick season and managing to not get ill over the holidays when we would be at risk of running short staffed, but from working extra covering sick peoples’ shifts and the general stress of the holidays left me run down and I finally got sick then, when my body couldn’t hold up to the stress anymore.
      Something else which comes to mind is, as you noted the fight or flight response, is that CRPS has us living under a fight or flight response *all the time*. It’s why we tend to be so anxious and are best served to learn as many relaxation, meditation and other techniques to keep calm and cope better. We are fighting our body’s innate response to danger, in our case the danger of the pain we are in is so severe, it’s telling our body ‘holy CRAP are we in trouble! RUN FOR YOUR LIFE!’ But we can’t run, we don’t get to burn off that adrenalin rush, so it sits there and causes us intense anxiety.
      It is a good sign, I think, if our bodies – despite the daily onslaught of intense and incredible pain – can still get that adrenalin rush that allows us to do something seemingly ‘normal’ to others, but SO out of what’s become our reality. It means that our adrenals aren’t totally burnt out, perhaps, that they can still offer such a protection, in this case allowing you the enjoyment of one evening of fun?
      I hope your ‘time’ is minimal for your ‘crime’ is nothing more than a misdemeanour to most folks. 😉
      As for me, I will take to hear my own words and risk dancing to one song in my living room this week and hoping that any payback isn’t more than I get from brushing my teeth AND washing my face while standing, etc!

      Hugs to you; you’re a strong-ass woman and an incredible person. I’m proud of your growth over the years I’ve known you, of your willingness to look at, name and write about your innermost thoughts with honesty, humour and objectivity. You has mad skillz and they’ll get you through this life more than anything else.

      Hugs. xx

      1. Hayley Cafarella Post author

        Thanks so much Lisa! For this and the the other lovely comments and messages that I haven’t had the energy to reply to, just receiving them always makes me smile and feel understood :)

        I don’t like to use “should” either, however you totally should dance a little! If you happen to enjoy drinking, I’d recommend doing that a little bit first also, makes it feel like that good old dance floor freedom from the young and healthy days. I really enjoy the attitude of the lady who runs this site http://dancingwithpain.com/ -she’s of the perspective that if you can only move your little finger then dance with your little finger! It’s a different way of looking at it. I’m sure I look like a nutcase when I dance these days, which feels way better than thinking I look cool but worrying about it the whole time 😛 I just shake whatever can handle shaking…If it’s living room dancing then it usually comes about as a result of living room singing (translation: screeching along to loud music), which is also a pretty good stress reliever!

        Thanks for your perspective on the adrenal function, you are so right! It’s a really good thing if we can still get that system working despite it being turned on all the time. I hadn’t thought of it like that 😀

        Many hugs to you!! xoxox

    3. Ross

      You are a fighter and a champion in all of this Caf! I’m seven years into this myself and over the past couple of months things have been really tough for me. The pain has been consuming my every thought and it’s been tough to stay positive. We fight for the day that we will be able to declare that we live without pain. You are a person that inspires me to keep going and beat CRPS. Stay positive and don’t let the chronic pain win. I’d really like to Skype or FaceTime with you sometime if that’s ok with you.

    4. Jem

      Rusty Hoe pointed me in your direction.
      I also have a form of dysautonomia and have found that due to pride & unrelenting standards (purely my own) the every day tasks can take over & leave me unable to then go and do something I want to but if I have rested or if I know it is so important to someone I can force myself through an event as I must put others first (part of the depression & anxiety symptoms) but of course it takes such a toll. We all have to just keep smiling through for others despite the pain, running off to be sick or going to find somewhere for a quick lie down before we pass out.
      I have so much I want to do but have finally learnt I need to put my own needs first (or my illness’ needs) and take baby steps with everything in life.

      1. Hayley Cafarella Post author

        Hi Jem, thanks so much for your comment and my apologies for taking so long to find it! I’ve been in a mental slump for most of the year but just keep trying to claw my way back out of it. I keep attempting to pace myself well enough to move forward, it’s such a difficult thing to do and I think that accepting that sometimes my body will just surprise me with new limits (good or bad) is a part of managing. I definitely need to take some steps towards getting myself back on track this year, a few extra “hits” and I’ve found that I’m physically and mentally all over the place. I’m sure that I’ll get back on top of things eventually. Thanks again for reading and wishing you much fortune with your pacing and management! :)

    5. Della

      I’ve noticed the same kind of thing repeatedly in my own life. It’s puzzling how I can get through some event OK, then just crumble afterwords. It’s like the fight or flight instinct kicks in and holds for as long as needed. The after effects really have to be worth it though, for me to take something on. I know I couldn’t maintain that guise of better health for long without crashing and burning worse than I could handle. It’s far too hard on the body. These days I take on much more though.

      Lately I’ve been feeling the urge to dance… dancing in my head.. sometimes actually dancing a little on the outside. It’s amazing how the combination of Spring and better pain management has picked me up out of my chair. I’ve never really even learned how to dance. I’m so grateful for these days of joy. I know that rough days will come, and I’ll drain every ounce of good out of the good days to help sustain me then. The other day I found myself pushing my cart through the grocery store and actually skipping and bouncing around a bit to the half formed tune in my head. I store those moments in memory to remind me that there is hope on the bad days.

      1. Hayley Cafarella Post author

        I’m so glad to hear that you’ve been feeling like dancing, Della! I don’t think that anybody needs to learn how to just in order to be able to do it. I don’t think that it matters at all what you look like as long as the movements are helping you to feel better, or process some energy, or just whatever benefits they are bringing…it’s all good! xx

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