Surgery is disabling and isolating

Yesterday I was so happy to be able to go for a walk that I was brought to tears. It sounds like such a minuscule thing, but considering how difficult my recovery has been I saw it as a significant accomplishment.

Going into the surgery I was already familiar with what pain was, or so I thought. Playing competitive sports caused me a number of injuries (sprains, strained cartilage, torn ligaments, broken nose), some of which resulted in chronic pain. I get occasional migraines and have a gastrointestinal condition that leads to rapid-onset pain so severe that I black out for a few seconds. All of these of course are in addition to the chronic osteoarthritis pain that was the reason for my surgery in the first place. I also had a similar surgery a little over three years ago, where a metal plate was surgically installed to my ulna. It turns out I was rather woefully unprepared for how disabling this surgery was going to be.

In recovery I was in so much pain that my heart rate became too high while I wasn’t getting enough oxygen. I ended up having to be hospitalized over night to get my pain under control, which meant getting medicine made for moderate to severe pain every two hours, alternating between oral and injected doses. The most sleep in one sitting (lying?) I got that night was forty-five minutes: even with all of the painkillers I was being given I was in a hell of a lot of pain.

I was discharged in the late morning and within four hours I had to go to the ER because the pain medication I was given was not enough. I had even increased my prescribed dosage by 50% to try and reduce my pain, but I didn’t notice a difference. I am not being hyperbolic when I say it was the worst pain I’ve ever felt in my life.

Apparently removing medical staples and rearranging ligaments and nerves causes significant trauma to the body. I was supposed to have the other metal plate in my arm removed during the surgery, but my surgeon did not think it was a good idea to do so given the complexity of securing the metal plate in my wrist. Though I am more bionic with my new hardware, I have been informed I still will not set off airport metal detectors, much to my chagrin.

Nearly four weeks later I believe that aside for short time frames, my post-surgery pain levels have been worse than my pre-surgery pain. The windows of time are starting to get to a point where sometimes I “only” need to use prescription painkillers meant for mild to moderate pain in conjunction with over-the-counter acetaminophen. But I am impatient and these are not happening nearly as often as I would like.

Part of the reason for this has been the weather. Whatever the environmental triggers are for folks with migraines seem to affect my pain levels as well. I’ve noticed that when the barometric pressure changes rapidly or if it is humid my pain will be worse on that day. Temperature extremes affect me too: if it is warmer than 25C or colder than -20C I notice that I am in more pain then as well. In the span of about a week and a half there were some rapid weather changes causing about 30cm of snow to fall, and then unseasonably cold temperatures (as low as -38C with the windchill during daylight hours). It was hell on earth. A frigid hell, but a hell nevertheless.

As a result of the snow I was not able to leave my flat for fear of falling due to hidden ice on sidewalks. Once the snow was shovelled it became too cold for me to go out because even if I am dressed appropriately for the weather just being outside becomes too much for me to handle. In the week after my parents left, aside from a short encounter with someone from UPS and another with someone from Canada Post, I did not have any face-to-face human interaction for a week.

I was stuck in my apartment by myself for seven days. To say I was isolated is in my opinion quite accurate.

Of course Murphy’s Law came in to play wherein not only was there only one day when a few people were free, but I also ended up being too ill to do anything on that day anyway.

Thankfully my parents would call me daily, friends and family in other places hours away and in different time zones would see how I was doing via text or social media, and my supervisor and friends in the city with kids were in touch via email. Without them I probably would have felt worse and been even more frustrated with my situation than I was. This is not to say that there was a radio silence from other friends and colleagues close by, but rather that the majority have been extremely busy or preoccupied.

What I have learned over the last couple of weeks is that a lot of my resiliency has come from within. No one has any idea what my life has been or is like, though people close to me are empathetic because they have seen how difficult it can be.

At present for example I cannot tie shoes, so the lacing on my winter boots won’t be re-adjusted until I can ask someone to re-tie them for me. Likewise it took me between forty-five and sixty minutes to make my bed after tossing my sheets in the laundry last night, which was comprised of putting on the fitted sheet, tucking in the flat sheet, and putting pillowcases on four pillows. Putting a duvet back in its cover is far too difficult, so I will need to forgo that for the time being. These are simple tasks that literally many children can do.

Unless they’ve experienced difficulties like these, the majority of people have no idea what life can be like for people with disabilities. Because of the amount of pain I’ve been dealing with, and my limited ability to function due to the cast-splint I have to wear to help me heal, I am the most disabled I have ever been as an adult. Although this is hopefully a temporary situation for me, issues such as those described can be emblematic of the day-to-day challenges someone with disabilities may face, and demonstrate the importance of treating people with equity based on the abilities they have.

I am still looking to meet other folks with syndactyly to the severity that I do, but I am wondering if that will ever happen. I would also like to meet someone under thirty who has had a full wrist fusion. For both instances, it would really just be nice not to feel like I am the only person dealing with what life has thrown at me. It’s exhausting to constantly feel alone all the time.

I am also very much looking forward to going home in a week and a half, since my parents can offer me much more support than I can get here, including, literally, an extra set of hands.

Although I have only been able to complete a limited amount of school work over the past few months, I am in desperate need of a vacation.

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3 Responses to Surgery is disabling and isolating

  1. Makere says:

    wow. Thanks for writing this, Danielle. Even though I’ve stayed in touch by email and thought I knew how you were feeling, turns out to be even worse than I knew. You’re right, the rest of us cant imagine the awfulness of such constant, debilitating pain; constant, debilitating inability to do the things that the rest of us take for granted. Like changing a bed.
    And you’re being far too kind here to your absent friends, including me.

  2. Pingback: post. thirty six. (or loss, longing, and love [part one]). | danielle dissertates

  3. Pingback: Representation is Important | danielle dissertates

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