I've taken a bit of a hiatus, but I'm still here.
Enjoy these awesome photos Andres Vargas took of me back in 2018 at Dibeppe in Gastown. Vancouver, BC.
I know you are probably already aware of how limiting my struggle with Multiple Sclerosis has been. I've spent my entire adult life just adapting at every bump in the road, doing the absolute best I can.
Fatigue has been one of my biggest enemies through all of it. My mind wants me to get up and go, experience things, learn, be active, etc. My body wants me to sit and rest. All the time. It is an endless battle of learning that I can still do so much - but not all at once, and not every day.
Art has taken a huge hit in this battle, as I do not have consistent energy to complete consistent work. Every creative burst requires the stamina to execute something from it. My brain is overflowing with ideas constantly. My limbs sometimes cooperate. My brain often does not.
It is hard to explain how exerting myself affects me. I'll try.
Imagine your energy as currency in the bank. You may have multiple accounts (physical, mental, emotional, etc.) but if you withdraw from one account, it reduces your overall bank balance (energy). You get a very small allowance per day and there is no way of earning more.
I start my days with only so much energy currency. There is no way of increasing capital (naps or hearty meals don't restore this currency).
If I spend too much mental energy, my physical energy becomes depleted. If I overexert emotionally or physically, my mental energy taps out. Basically what this means is that if I were to spend too mucy time studying or reading, there's a high chance my body will physically pay the price for it. Or if I, say, did a hike and pushed myself too much- my thought process becomes slow and I then struggle with comprehension. There is no overdraft. The debt just builds.
I can quite literally think too much, and have my body stop moving. Or I stop tasting. Or hearing. Or seeing.
A good example is how if I spend too long reading or doing computer work, my brain forgets how to control my right shoulder. My shoulder blade will slip down my back ("winging" is what it's called). This is incredibly painful, but avoidable if I limit how long I mentally exert.
Every single thing I do requires discipline and careful attention to how my body responds.
It is up to me to realize that there is no way around this, and to just find a way of making life comfortable regardless of circumstances.
Diagnosed nearly 14 years ago. Every road bump comes with new challenges. It has taken the past 2 years (since my last relapse) to get in the flow again and know how my body reacts throughout the year (to seasons changing, to cold/flu season, to Ocrevus infusion time, to holidays...).
Finally, I feel like I'm getting in the rhythm of it all.
Just want to end this by saying "Thank you" for following along and supporting me in this wild journey!
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