Compounding challenges of a cold

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A cold is no fun for anyone. I recognize that. Who wants to have any portion of their day spent dealing with sniffling, sneezing, coughing, headaches, body aches, or joint aches? But living with a Spinal Cord Injury and having a cold just feels like a cruel joke from the universe. As if things aren’t challenging enough on a daily basis, having to deal with the added stress of even more physical obstacles is debilitating.

Before my accident, I almost didn’t know the meaning of getting sick. I might get a sniffle or two here and there but I can confidently say I pretty much never got sick. The last time I had the flu I was a 6th grader. Fevers were a long forgotten memory from childhood, when there was a bittersweet thrill in staying home from school, drinking endless glasses of orange juice and eating my mother’s home remedies of vegetable soup. Strep throat, mono, bronchitis, and anything that would have had me bedridden for more than a couple hours were completely foreign to me. To be honest, I was a bit unsympathetic towards people who were consistently missing large chunks of time from school or work due to minor sickness. Well, what a difference a traumatic accident makes…

Since I got out of the hospital, I’ve made a huge effort to be as healthy as I always was, if not more, so as to avoid getting sick and compounding my daily challenges with new ones. Thanks to those efforts I’ve been fortunate to avoid any illness despite the fact that I’m constantly working with different people who are around a lot of other sick people. The streak ended yesterday when I came home exhausted, achy and nursing a stubborn cough. Today was the first day of therapy in over eight months that I missed and it’s incredibly frustrating to think that even one day of rehab and exercise has to be compromised from my recovery due to something that’s out of my control. I take my rehab very seriously, and as anyone who knows me should recall, I don’t do anything that I care about half-assed.

So why is it especially challenging to deal with illness with a SCI? I’ll provide just a couple examples. My lung capacity is much less than it used to be before my accident. I remember one night in the hospital just days after my accident when I did not sleep the entire night because I had a tiny bit of phlegm in my chest but I was too weak to cough it up. I’ve gotten some of that lung capacity back but now I have a tiny scratch in my throat and I cough and cough and can’t clear it up. So I have to do the impossible, accept it and just deal with it. The other example is just how hard it is to do anything when my shoulders are achy and sore. I use my shoulders and arms for everything so even shifting positions in bed feels like a monumental task when my shoulders feel like heavy, painful clubs hanging off of my torso.

I realize that everyone gets sick and that my pseudo invincible previous self has to swallow his pride and accept that it’s ok to be under the weather a bit and that it’s temporary. But it doesn’t relieve my frustrations at having to deal with even more obstacles in an already challenging daily life.

The nerves they burn burn burn

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Less than 10 days after my injury, upon admission to inpatient rehab in a new hospital, I was on my way to get X-rays when the technician started chatting with me. Although I was running a consistent 101 degree fever and still very heavily medicated, I was able to describe him the basics of my injury. “Do you have any burning yet?” he asked me, to which I told him no with a befuddled look. He followed up and said, “I’ve had nerve damage dude, it will heal over time but wait ’til you get the burning. That’s a trip.” A few weeks later, in mid-August, I realized what he meant and started to feel the burning in my forearms.

The vertebra I had broken in my accident were in charge of the nerves that run down the forearms and through the fingertips. As a result, the first signs of those nerves healing was an intense burning sensation through my arms and fingers. It’s difficult to describe exactly, but I would say it feels like a string that’s on fire running through the length of my forearm which then branches off into my fingers. The intense burning feels like it’s just below the surface of my skin, almost like an itch, so I naturally scratch that area thinking that it will help it somehow, but it never really does much. It occurs randomly, lasts for a few minutes but sometimes much longer and since there’s little I can do about it, I have no choice but to accept it. It definitely hurts but more than anything, it’s a very strange sensation, unlike anything I’ve ever experienced.

Doctors told me this is normal and an indication that those nerves are healing and regenerating. I’ve had the burning in my arms and fingers for the last four months or so, but it occurs less frequently than it used to. Now I’ve started to feel a similar burning sensation (but not as itchy) in my abs and low back, which makes sense if you think my spinal cord is healing from the top down and now reaching those levels in my mid-body where I have about 60-70% sensation. While it’s an odd feeling, I do somewhat appreciate the burning since it’s an indication of healing. Now I try to embrace this burning and imagine that the fires burning in each millimeter of my body are happy fires that are bringing my body back to normal.

A Crowded Battlefield (Part 2)

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Continuing on from my previous post about the military battlefield analogy I used to describe dealing with SCI, I want to highlight more specifically what I meant.

I think that for many people I talk to or meet who learn of my condition, their thought is that my inability to use my lower body is the absolute thing I’m concerned with. I tell them about my intensive therapy and exercise that I’m doing six days a week and their rightful assumption is that it’s all intended for me to be able to reengage my legs. In my military analogy from my last post, the battle to regain function of my legs is the army facing me straight ahead. It’s obviously the most significant challenge for me and the one for which I’ve most prepared.

While that is a mostly correct assumption, one of the most frustrating aspects of this injury, and its ensuing recovery, is that my legs are one of MANY challenges I struggle with everyday. Because the level of my injury was so high up on my spine (C5 and C6 vertebra in my neck), there are many functions that are controlled by nerves further down my spine, that I do not have full control of yet.

Here are examples of just three:

Hands – This is probably my biggest day-to-day frustration. My fingers and hands have regained a lot of function and improved considerably but they’re still at about 50% of what they should be. My grip is still weak and I can’t hold certain things in one hand (i.e. laptop, heavy book, plate of food). My fingers are stiff and not dextrous so simple things like buttoning up a shirt or tying my shoes is a massive struggle. This also prevents me from cooking, playing guitar and doing other hobbies that are so important to me.

Core/trunk – This has improved tremendously and is the area I’m exercising the most in all of my therapy, but it’s still weak. Other than a flabby, soft stomach (which isn’t great for my ego…), it means that basic mobility and moving around in a seated position is very difficult. Dropping something on the ground or reaching for something becomes a risk of falling out of my chair. Cutting food with a fork and knife is still impossible because that would involve  both my hands and I don’t have the strength yet to sit and use both arms unsupported. So I can only still use one hand to eat, and the other to stabilize myself.

Shoulders – To be clear, my shoulders are working 100%, and they’re stronger than ever but that’s where the challenge comes in. I use my arms for EVERYTHING. Aside from moving around in the wheelchair, throughout the day I have to lift up my legs and move them with my arms. Ok so I do have thin legs but they still weigh a lot! Every time I transition from my wheelchair to the car or to bed or to the couch, it means supporting my entire body weight in my shoulders and arms. The bottom line is, my shoulders are exhausted all the time. I have massive knots and tight spots throughout my back, shoulders and neck. Massage anyone??

Aside from these three functions I’ve described, there are many more that aren’t 100% but I think this gives a more complete sense of what dealing with a SCI is like. It’s not just the legs. One day or one hour, it’s one challenge, the next it’s another. I may think I’m improving one thing but as soon as I want to celebrate that accomplishment, I realize four other things that aren’t working. Every day gets split up into segments of dealing with one body part at a time and trying to measure that progress becomes lost in the attempt to improve other body parts. Back to my battlefield analogy, it’s a feeling of being attacked on so many fronts, from so many places. Some days, I don’t know where to focus my efforts because it’s all so overwhelming.

I know that as I improve and as those functions come back, I can focus more energy in less places and feel less overwhelmed. But for now, the battlefield remains crowded…