Another night, another blog written in the dark embrace of my bedroom. My heated blanket hugging me. The sweet tunes from this playlist labeled “acoustic doze-off” have me energized. My mind is racing, my legs are bouncing to the rhythm once more.
Lightning… it shoots down my spine from my hips. Oh, sweet agony. Pain has been my silent companion for some time now. My legs are sore, my feet are burning, and there is what I can only describe as the feeling of a hot needle in my right elbow at present.
While the discomfort can wear on me, it oddly doesn’t rate as high on my list of daily annoyances as you’d expect. Being chronically ill brings with it all sorts of magical ailments. Most are invisible to those around me.
My loss of strength is notable, but the fatigue is easily the most debilitating. The cognitive challenges I have experienced are likely my biggest annoyances. Often frustrating, sometimes plain infuriating.
Being unable to express the thoughts in my head in an effective manner can be endlessly frustrating. Not being able to find the words, speaking only to hear pure gibberish come out. Uff, what a mess.
There is no cure for what aisles me. Instead, we try to manage the symptoms and attempt to slow progression via a mixture of modern drug treatments, and lifestyle changes.
Multiple Sclerosis is a truly retched disease. I often feel like I am slowly losing pieces of myself. I have so many dreams, so many ambitions, and yet here I am needing a nap after taking a shower. Struggling to make the bed. Covered in bruises and unable to express myself. Not that I’ll remember what I wanted to say five minutes from now.
I try to take inventory and focus on all the blessings I have in this life. My loving partner Robin. All the amazing people I have met thanks to my MS. The beautiful home Robin and I have created for ourselves. I’d like to think I am generally a pretty optimistic person.
Sometimes it’s hard though. There are days when I cry. There are days when I don’t know how I’m going to make it through the day, let alone the next 20 years. It’s easy to feel like I can’t live up to my responsibilities, like I am letting people down. The term “useless” comes to mind.
I don’t believe I am useless. I do think I need to reassess what I can do, what my strengths are. Where do I go from here? Hmmm… I still want to learn to fabricate, and I still want to build a race car. Haha
I apologize if this post is a bit of a downer, it’s hard to describe what it’s like. Every day is a roll of the dice. I might wake up tomorrow feeling Ike a million bucks, only to feel like I owe someone a million bucks the next day.
It’s taken me some time to find my feet in this new life, to come to terms with the idea that I have a disability, and to understand what that might mean moving forward.
Clearly, I’m still a work in progress, just winging it. But I’m still dreaming… 🙂
Featured image provided by Alena Shekhovtcova.