Restart Button

Do you ever have a week where you’re not yourself; everything seems to be going wrong and, as much as you want to appreciate each moment, you can’t wait for a better day? Among many others…this past week was one I couldn’t wait to put behind me…

Ever since June of last summer, I’ve been receiving monthly 2 hour-long infusions of an aggressive treatment to delay the progression of my MS and subside some of the debilitating symptoms.

With a pain that takes hold of my hips, burying itself in my back and stretching it’s limbs up to the base of my neck and around my waist, with a tight squeeze; how can you not want to fall to the floor crying? The pressure…the discomfort…the mind-numbing pain follows me through every part of each day.

Sitting provides some acute relief, but pain is persistent, and relaxation becomes a feat on it’s own. Therefore, I am stuck between complete immobility and rigid, spastic, uncoordinated movements. Because fatigue is also a good friend of my dear MS, finding enough energy throughout the day requires excellent planning and an impeccable balancing performance of daily tasks. Even then, each day comes with it’s own challenges and makes it almost impossible to plan. I find myself cutting time out of the things I really enjoy; like walking or dancing in my living room; because I’ve used all of my reserve on necessary, responsible, “adulting” things. When I do find some energy, it’s wonderful…I am not sitting! But then comes the heat waves…the vertigo, the numbness, the spasms, and the amplified dis-coordination. And there I am, stumbling around like a drunk…which is an accurate description of how I actually feel…and I want to collapse because I can’t feel my waist down to my toes and the pain in my back takes an even tighter hold!…Persistent, right?

This provides some insight to my week leading up to treatment. Outside of my MS, I try to lead a “normal” life. I am 6 weeks away from completing my school program as an occupational/physiotherapist assistant…ironically. However, this past week was also the first week of my full-time 7 week block placement. So…being on my feet all day, ready to learn, and trying to making a good impression while dealing with my symptoms did not make for an optimal week. Like I mentioned before, it’s almost impossible not to compare yourself to other able-bodied people without getting frustrated and angry with yourself.

Fortunately, my treatment was a breath of fresh air…a restart button. I got home and jumped for joy…literally, I did jumping jacks! I felt like a whole new me. Don’t get me wrong, my symptoms don’t just disappear; they are managed. Like if you put cold water over a burn…it feels better temporarily, but continues to itch for attention afterwards.

It’s actually incredible how much impact pain and anything going on inside of your body has on your mood and reaction towards others. I close myself off and sit like a ticking time bomb ready to explode. You can probably call me emotionally labile. In a way, I’ve always been that way …since I can remember. I was quiet as a mouse, internalizing everything until I was full to the brim. Then, I would explode out of nowhere. Anger and tears spilling everywhere; leaving me empty and embarrassed. Now, I experience some derivative of this pubescent outburst when I find situations aggravating. Unfortunately, my emotions are primarily channeled by my symptoms and pain. So now, I try to take a deep breath and restart myself if I am able to anticipate when I am getting overwhelmed. Sometimes, however, I am unsuccessful and there’s little to no warning before an outburst; which is also frustrating. I really dislike being labile.

Feeling the difference my treatment makes in my day…like a restart button…I’d like to give it a try on my own in the way I handle and self-manage my symptoms. Maybe it’ll make that dreadful week more bearable. Maybe it’ll make me less of an emotional bomb. I can’t tell just yet…but I do know that everyday still counts.

I know and/or hope that, with time, I will get better at my balancing act between perseverance and rest; while considering self-acceptance and forgiveness of my faults and weaknesses. When I am in pain I know my body is trying to tell me something and instead of getting stubborn and upset I can stop, reflect, and hit refresh. I can take the tough moments as a learning curve instead of one I need to combat.

No self-destruction…but rather self-construction.

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