Tightrope Walking Through Chronic Pain

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Life is a tenuous walk on tight rope these days. Fortunately, I am getting much better at staying in line. For the most part I know what needs to be done for the days to work out in my favor.

I am thankful because I have been in places in the past where it didn’t matter what I did, there was no way I was possibly going to stay balanced. With some recent health improvements, staying balanced has been extremely difficult, but possible if I am careful.

For example, I know exactly how many hours  I can sit before I risk too many consequences.

I know that on Mondays I need to lie down all day before work, which means I will make it through without too much trouble, and then when I come home from work it’s a canned soup day because I shouldn’t cook.

I know what days to shower and which days to not so I don’t smell at work but also don’t use up too much energy on showers throughout the week. That was a strange sentence, but life with chronic pain is strange at times.

I know that I need to take rest days between work days.

I know that on Sundays, I can make it to church as long as I don’t do much of anything else.

I know that when I work on my computer, I should do it lying down instead of wasting my energy sitting up. Honestly, anything that I can do lying down should be done lying down to save energy for activities that must be done sitting or standing up.

I know just how many exercises to do on which days to ensure that I don’t decondition but that I also don’t overdo it.

This life is a constant and confusing puzzle of allocating resources just so, in a way that everything that needs to get done gets done.  And then I rest. I pick the most important things, I carefully schedule them into my week, and I survive. I am more than surviving lately. I have some days that I would dare call pleasant.

But, it is oh so easy for this tenuous balance to be thrown for a loop.

Step an inch to the right and I fall flat on my face.

Step an inch to my left and I rewind several weeks.

Something as simple as taking a shower on the wrong day can throw me off for the entire week.

Deciding to sit up too long on the weekend means the work week is oh so much harder. That is where I find myself today. I should have done that writing not the couch instead of at the kitchen table, but writing is just so much more enjoyable when I do it sitting down. It really is.

Choosing to not make a large pot of food on Saturday means I will be scrounging in the kitchen for something easy to eat or sitting on the couch just knowing if I make something it will throw me even more off.

Tightrope walking through life is an exhausting endeavor. It gets easier with practice, but even after months and years of walking the same rope, mistakes can still be made.

And sometimes it is not just mistakes but conscious choices to step of the rope because I am so dang tired of being up here when the rest of the world gets to walk on solid ground.

Just for a moment I step off to try and feel normal. And sometimes it is oh so worth it. And sometimes it is not. And whether it is worth it or not, the longer I stay on the ground, the harder it is to once again navigate the rope.

10 responses

  1. I thank you for writing this, as you just have described my week to a T. When I go to church on a Sunday, I know that upon returning I must rest as it takes every ounce of energy just to attend the two hour service and the one hour drive there and back. It is the highlight of my week. Unfortunately I am homebound due to the severity and the spread of complex regional pain syndrome in all four of my limbs, as well as other rare pain syndromes. It is such a comfort to read your posts, just to know that you’re not alone. Thank you again for sharing your writing is with us. Nancy Belz.

    • Thanks for commenting Nancy. It is comforting when people comment so that I know I am not alone as well. I admire your dedication to get to church, especially when it is so far away. Being in community is definitely worth it!

  2. Man that is so true!! You phrased it all so well. It’s this strange allocation of resources and one miss step ruins everything! It happened today to me. I was feeling surprisingly good and decided to go the gym but as I was getting dressed I smelled Febreeze in the bathroom and lost so many spoons that going to the gym was impossible. Wishing you more good days. Thanks for writing.

    • Hi Megan, do you also have multiple chemical sensitivity? Chemical smells throw me off balance so easily now on top of chronic fatigue and pain, to continue the metaphor, it’s like someone jumping on my rope trying to make me fall. But to keep tight rope walking I wear a mask or scarf asap. I’m home bound anyhow but I get that sometimes on the rare outings when it’s too late or your purse is too far and you’ve lost you’re balance and spoons in seconds.

      Yes Esther you’ve written this post so well again. Made me realize I miss that routine of how to walk on the rope these past months. Thanks. I’d decided to review my routines yet again and redo them and your post gives me more courage to.

    • So glad other can relate so I feel less crazy! Sorry you experience the same thing. Being sensitive to scents must be so extremely difficult – so impossible to avoid!

    • Omg, I just begged my hubby to stop using the febreeze. Glad I’m not the only one but it’s sometimes ridiculous all the tiny things we have to consider every day. One word- exhausting! Great post esther!

      • Hi Christine, yes indeed. All the little things seem to add up and it gets exhausting. However, as my hubby and I have made changes to our lives and eliminated all the products that cause me to react (including many new ‘natural’ ones I was trying but ended up reacting to a month or a year down the road), we have also improved our lives. He can’t believe how much he loves my simple natural 2oz water with 10-15 drops of 100% essential oil (Aura Cacia brand, not NOW brand – definitely huge quality difference my noise knows!) for air freshener and how efficient it is for kitty litter or bathrooms.

        I found Dr. John Molot’s book (or blog if you prefer) helpful in knowing why it’s important (12000 canaries can’t be wrong) and stopthestomachflu website made by a scientist-mom-at-home making experiments comparing the real efficacy of cleaning products versus natural ones blew us away! She makes her method accessible to everyone by showing lots of photos of her results. We had to use natural products but my husband growing up with a nurse that sterilized the heck out of everything as a kid and taking micro-biology in university, he always felt ‘at risk’ with our new products. Not anymore thanks to that website. Just adding hydrogen peroxide in the bathroom was all we were missing really. Even that scientist lady herself was blown away at how simple products were just as good if not better than commercial ones. Her repeated trials with Lysol are funny because she just couldn’t believe it was as efficient as vinegar in her tests even though she was an addict herself. And out went the last of my hubby’s resistance to throwing out the Lysol bottle, the last thing he was clinging onto.

        Sure there were lots of trial and error (deodorants, shaving creams, etc) but since Oct 2014 when we started, we have improved so much, found lots that work great or better and would not go back.

        We didn’t have the means to replace every single items at once so we focused on the worst triggers. That’s also an important thing to do: do it gradually or else you lose your mind trying to find new products for everything. Prioritize.
        Hope that helps 🙂

  3. I think you’ve summed this up so well using the tightrope metaphor.
    I’m delighted to hear that you’re managing. Keep it up and ‘don’t lose the run of yourself,’ as we say in Ireland!

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