Skip to main content

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 punctures with your fingertips on my knuckles.

Cool me. That's all I need right now.





Comments

Post a Comment

Popular posts from this blog

3 Years

When I got the letter through the door, it struck me how once this very small intrusion would have made my heart stop. I would probably feel sick, be filled with trepidation and probably just let my mum open it. Then that would cushion the blow. Nearly 7 years post-diagnosis, I'm a little calmer about those formal envelopes that follow me into my home a few times a year, taking the approach that there's nothing to deal with until the letter is completely read. On the letter; after another annual MRI, 3 years after my infusion treatment (Lemtrada), there's been no worsening in my lesions and no new ones. And I just thank God. The optimist in me wants to jump up and down, and bounce off the ceiling cheering. The realist in me tells me this was really lucky and it's a miracle and this will change one day, that this is temporary. I'm working to sit somewhere between these two voices; being grateful and working to keep myself well. Stress levels are the main reason I was...
4 comments
Read more

Lemtrada Update

Hello,  I know it's been a little while. Truthfully I've kind of been distracting myself from anything MS related because I've been so nervous about coming on Lemtrada. I'm on day 3 now and I'm really tired so I'll keep it short and sweet and give you a little update. My nerves were really getting the better of me this time last week. I was feeling sick with trepidation and just thinking "God, what if this is the worst thing you could be walking into". Well, how are any of us supposed to know, unless we just do it and who said it would it be?  I didn't think I would smile this week. But I've smiled and actually my spirits have been really high. I've had lovely people checking in on me, my mum and sister by my side throughout the infusion and, I would say (touch woodp) minimal discomfort, minus my dislike of cannulas. The days have been long. With an 830am start at the hospital after a 45 minute drive to the hospital, it's an ear...
2 comments
Read more

Lemtrada: Day 4

Day 4: ooooh this is a rougher ride today but I'll take it because it's taken 4 days to show rather than on day 1. I woke up this morning with a raging, blistery rash. I've never seen anything like it, but apparently that means it's working. Once I got to Southampton, they gave me some anti-histamine which brought it down a little. The joys of three hours on the clock. Reading a good book definitely helped to pass the time. But today, it wasn't going to sidle off unnoticed and behave. It began to rage again a few hours later and I had to really wait without scratching myself into ribbons. To say I was on fire would be an understatement and it has required real self-control not to paw away at myself. No, I was not thrown into a nettle bush and no, this will not feature in high street fashion next season. It was a shorter session without the steroids, but I didn't realise quite how much they were doing for me. On completing treatme...
2 comments
Read more