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Showing posts from July, 2017

The Morning after the Last Day

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 treatmen

Lemtrada, 2: 2/3

This is really short one as I feel really shattered after a 45 minute cannula ordeal that was literally so unnecessary and distressing. It has left me feeling really exhausted and it shook up a massive nervous reaction. I am otherwise really fine, the Lemtrada response itself was Alhamdulilah, as good as it could have been and I've seen signs of the rash and hoping to see more tomorrow so I know I my body is responding positively to it. I am ever grateful, and fortunate, but for today these are all the words I have. Keep me in your prayers and thoughts and find light in every space you can. Here's a poem I wrote that sums things up and I hope tomorrow my words will be full of more zest and greater strength inshallah: بردو قلبي And tell me something that washes over me Like ice water and a sea breeze Enough to take edge off the now And bring the light back to my eyes Cool the burning in my veins And loosen the knots in my lashes. Heal these