A 4am post that won't be posted until a lot later but good morning! And what an interesting day the last day of Lemtrada was. In my experience of what having the infusion was like last year, I'd say this time round (so far) it has not been as draining as the five day round I sat through previously.
The extra two days really took it out of me last summer, and whilst I'm not exactly bouncing off the walls, I'd say there's a bit more about me and I'm still strong enough to give sass to anyone who prevents me from satisfying a steroid-induced starvation pang. That's killer by the way, I could haven even eaten my own arm before lunch arrived yesterday and my lord has hospital food never tasted so heavenly.
We got there. I mean, I look a bit like a have hives for periods of the day and slightly vacant, but this has been worth it and inshallah the long term will be the proof of that if I maintain a healthy life style that optimises the best this treatment could potentially offer me.
At the end of my five days last year, I had a huge surge of relief and a flood of emotion as we came to the closing of that final saline flush post a gruelling 8 hour infusion session. I recall it being the most glorious sunny day and I took myself outside to sit on the concrete slabs of University Hospital Southampton, in the city that held the memories of my undergraduate days. It was the place that held the memories of the starts of my friendships of my adult life, the beginning of my relationship with my now soon-to-husband 5 years later (who knew Z?), the endless nights of laughter and last minute library cramming sessions and now, the place I come to sit with a disease that I had never known had existed until it collided with me.
It was pretty hard-hitting back then and I just gave myself some time to let all this wash over me. I felt the sun on my face, I drank coffee in a little blue mug and pressed my bare feet into the heat of the ground and it felt good.
Leaving yesterday was a different experience. It felt...done. There were no heartfelt emotions, no tears. No heart backflips and lumps in my through. It was a quick peel back of a cannula, 300 pages of a great book, at least half of the world's carb intake and a rocket-speed exit. Ok, maybe not rocket-speed, but it was different, and I think I'm just over it all, not in a resigned way, but more that I just don't want to give something like MS more time than it needs in this short time we have here.
Don't get me wrong, I'll keep writing. I'll keep doing and tending to my body and my needs that's call out to me (and hopefully get to others before they do!) but I think my fundamental message is, we are so much bigger than the curses and secrets in our veins that are hidden from the human eye.
We are more than the night sweats and the mood swings and the burst veins. We are solid humans and whatever physical hardship may be riding your back, it's only something that can define you if you let it.
I'm hoping that my optimism and fullstop on this particular chapter isn't short-lived, but that's where I am for now. My closing thoughts are less philosophical and related to shoving a croissant in my face, but to anyone who finds this and is fighting out there, just remember, you're bigger than it all, and no matter what, there are always ways to triumph over hardship and stop it from consuming who you truly are.
"We've all been sorry, we've all been hurt. But how were survive, is what makes us who we are". - Tim Mcilrath.
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