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 early morning. They hook me up to steroids pretty quickly after a quick shot of anti histamine to curb as much of the impending rash that is commonly experienced throughout treatment. Those steroids take an hour to push through and then, da-da-daaaa it's time for the golden drug.

Lemtrada takes about 4 hours followed by a 45 minute saline solution and then a further hour of staying onsite so the nurses can keep an eye on you.

I'm so grateful to God. I've tolerated things really well so far. The rash is blistery and I get it on my face and neck, but by being mindful and just accepting it's there and not letting it bother me, it's been fairly easy to dismiss.

Coffee and my mum and sister have been my real heroes through this. I couldn't be doing this without my sisters aloe vera dabs on my face and my mum trying to feed me back to health. 

I have smiled and I will keep smiling.

I've been speaking to others who have been taking Tysabri (an hourly infusion) over the last three days and their stories have been remarkable, inspirational and have kindled hope in me. 

A friend who's gone through the same treatment has been a beacon of support to me as well as my other friend expressing her deep happiness that something is forcing me to sit down to rest (we will HIIT this summer if it's the last thing I do Saf, give me that peanut butter).

I'm full of love, tiredness and gratitude. I'll keep writing and I'm smiling.

2 more days and another update on the way :)

PS check out my mindfulness page on Instagram @trail.of.light

I've been trying to pick out the little pearls of light to keep me grateful in all scenarios. Have a look and let me know what you think!