G’day, friends and welcome to another week and another blog post.
If you have been around this blog for a while, you would know that having a neuromuscular condition means that injuries are inevitable through falling or some other means.
I have fallen from a horse, had 2 surgeries, a muscle biopsy, split my head twice, several concussions, bruised ribs, a hairline fracture in my foot and knee, pneumonia, plantar fasciitis, and bruised my knees countless times! … So it’s safe to say I am a complete clumsy human being, and am no stranger to saying high to the ground. I guess you could say the ground and I are besties.
I have been through so much, and each time has required a lot of rehab. Even just disease management in my opinion, is rehab! To me, rehab isn’t just physical; it is also mental. The mental resilience and determination required to push through the pain and be uncomfortable to get your body right again is enormous. It takes so much of your energy.
Living with a neuromuscular condition, you are almost in pain 24/7. It’s like your body works double time to simply just stay standing, so it is, I would say, like it is in constant stress mode; just having weaker muscles that work overtime to support a body is going to cause perhaps more wear and tear than the average person. For me, the pain (if not injured) is more so during the winter; my body seizes due to the cold weather which makes my muscles tighter and the back pain more intense
So safe to say you get good at ignoring the pain or just living with it and getting on with your day. mental resilience isn’t an overnight thing; it comes from simply taking each day as it comes and having to suck it up at times, constantly being aware of how you are feeling and being proactive when things pop up.
That mental resilience means that whenever an injury happens, you can tap into an extra gear mentally to chip away at rehabbing whatever may be injured—day by day, hour by hour. Well, that is the idea, at least!
I know I am not perfect resilience-wise. I have moments where I am lazy, don’t feel confident in my body and its capabilities, and feel weaker than usual. The pain becomes too much to deal with at times, and I find myself sitting down for extended periods rather than dealing with back or leg pain.I struggle to find motivation, and my willingness to push past pain and continue to fight to be stronger just isn’t there. Especially if I have a mile high to-do list or other stressors. It all adds up.
I almost liken living with MD to a boxing match; it throws a right hook (pain, increased weakness, no longer being able to get off the floor by yourself, heightened increased risk of falls, inability to get out of tight clothing on your own, walking no longer than 1k or a couple of hundred meters at a time), and you have to throw a combo back at it (weekly physio, stretching more, keep walking further, exercise more, eat well). It’s a constant back-and-forth, the most epic boxing match you will ever see.
But sometimes, the pain, the injuries, the outside noise gets to you. And if you aren’t ready for it, you mentally fall as well.
I fell over twice in the space of 48 hours last week. Once on Tuesday evening, I took too much of a step back and hit my desk chair, which made my knee give way, and I fell to the floor. No injuries, thank goodness. I tucked and rolled in a way that would make James Bond proud!
The next fall happened that Thursday. I was getting changed, and as I went to stand up from the end of my bed to pull my pants up, my knee must have given way, and I fell. However, where I fell was between my bookcase and my wooden bed end. It was a 40cm gap roughly.
My feet got caught underneath me on the way down, my right toes were splayed out then curled under my feet, my right ankle twisted at a bad angle, my chin grazing my bookcase on the way down, and my left foot caught at another angle which made my knee bend awkwardly. I ended up in essentially a strange, super narrow squat/ curtsey. The pain was instantly excruciating; I thought I was breaking my toes and ankle. I tried to twist to my left to get unstuck, but it was useless. I screamed out for help like my life depended on it. Pain does that to you!
Fortunately, my brother came to my rescue. He manhandled me out of the tight spot and onto my bed. After half an hour, I hobbled out of my room, feeling a tad sorry for myself and frustrated but so grateful my brother had heard me and come to help me.
I knew I hadn’t broken anything but had at least sprained my ankle and toes. However, the biggest pain was in my left knee. Every time I took a step, it killed and it would buckle every few steps.
Fortunately, it seems like a grade-one meniscus injury and potential lateral ligament problems. But nothing too serious. I feel I should go and get a lotto ticket the fact that I didn’t break anything!!
Mentally at the moment, I am not 100%. I have never cried on a physio’s table in the 3 years I have had weekly physio. But this week, the pain plus the mental chatter just compounded, and my 3 year streak of not crying during treatment ended. I have had a lot transpire over the last few months personally and with study, plus an ever-changing body, which has taken a massive hit on me.
I am full of anger, resentment, anxiety, and fear. Anger, resentment towards myself and my body, and anxiety and fear over facing another rehab period, and for the first time, fear over my physical strength. Falling and having someone manhandle you makes you feel un-human; I feel embarrassed, a burden, and just ew( Good descriptive word Rhi, well done!).
When you aren’t on top of your game mentally and taking care of yourself, it does compound, which is what happened to me.
I desperately want to have an extended time where I am not rehabbing anything and focus on getting as strong as I can again physically and mentally.
How do I get there, though? It’s again really being in tune with how I feel physically and mentally. I don’t just check in once a day; I do it every few hours or when my mood changes, whether good or bad. Am I holding tension in my stomach, is my heart rate higher than normal? Do I feel like I am about to scream in anger or cry from exhaustion and defeat? Or am I feeling in control of my body, confident, light on my feet, free, relaxed through the midline, clear in mind and goofy?
All of these things contribute to how I perform physically in rehab, looking after myself or professionally. If one thing is off balance mentally, then everything is off balance. It is a constant see-saw. That goes for anyone, regardless of your physical capabilities!
Once I figure out how I feel, I can adjust if necessary, whether that be taking a hot bath, journaling, letting out some pent-up energy by exercise or bouncing up and down on my chair while listening to metal music, talking to someone, taking a few deep breaths and taking in my surroundings, or even just having a good cry. After doing any of these things, I immediately figure out my way forward.
Writing to-do lists, journalling again, and talking to myself positively. I then get to work and try and flip the script.
Does it happen immediately, though? Heck no, it takes time and repetition. I have good months and bad months. I have really good days where I am on top of things and others where I am flat. Sometimes the turnaround is fast to getting back to your peak, and other times it takes a bit of fine-tuning to find something that works.
With this injury, I know what I have to do and what questions to ask myself, but most importantly, allow myself to feel how I want to feel if it is negative or positive. If it is negative, I allow myself to feel that way for a few hours and then regulate again. Or if it is positive, hold onto that feeling and be super productive and intentional with rehab and study.
If you are physically going through pain for extended periods, it can quickly transfer to other areas of your life due to the mental energy it takes.
Finding a way forward through constant injury setbacks or just setbacks, in general, does require a lot of effort, but digging deep, working on the things that I know work for me, talking when I need to talk, taking a step back when I need to, and troubleshooting is necessary.
Having a disability means that you get accustomed to finding a way forward, which is never bad.
The most important thing is that I never give up. I cannot roll over and admit defeat. It is simply just not in my nature. I owe it to myself to keep pushing and getting back up when a setback happens.
Nothing will break me completely. Why? Because I am stubborn as hell, and am determined to keep living abled my way.