Skip to main content

Bounce and Spring

Happy Spring! (ok, well kind of…). The weather isn’t sure what it’s doing at the moment and I can feel my body trying to fight off the dreaded lurgy just as we break off for half term. I mean, sod’s law will have it that on the stroke of midnight on Good Friday, I will feel less than good, but I’ll get on that and bust out all the weapons of my immune system and eat a kilo of honey and hope for the best.  

So, for good news. I spoke to my consultant who, with some pressing and reasoning, have been put forward for a Lemtrada pre-assessment. Now, I don’t want to get too pumped up about this because the results may actually show it’s not the right thing for me, but after speaking to a friend and reading some forums around this treatment, I really want to get on it.  

Lemtrada is an infusion taken in two doses; your first lot, over five days and the second lot over three days a year later. It kicks out parts of your immune system and forces it to reboot, so hopefully when it does, it won’t be attacking itself and therefore you’ll be relapse-free. From what I understand, it can halt MS. Research-wise, it’s a new treatment, so we don’t know how long it can halt for, but it has potential to do so for a good amount of time. Right now, I’m counting my blessings because if I have relapsed over the last year and a bit, it hasn’t been disabling nor has it been as severe as my previous relapses. 

I’m nervous about treatment if I do go through with it but I feel that really, I have to take this risk for my long-term wellbeing and yes, it is going to really suck for a time after when I’m not feeling so good. But, with loads of mental preparation and ways to keep myself busy, I think I can do this. I’ve almost been mentally training myself for something like this for a while and I feel I’m getting better at savouring and appreciating things in the moment. Being able to hold onto things and find that beauty, is such a gift and really for me it’s about loving what’s there while it’s there and when things are tough, remembering that things can be beautiful and happy and kind after you cross over the bridge. Call me sentimental, but it’s a hard life for all of us in different ways and what it’s about for me is remembering those reasons that life is worth living and why life can be good during those moments of hardship to pull you through. We all have our dark spaces and hiding places that we can retreat to when we feel beaten up by our circumstances, but by working on those foundations of happiness and appreciation for what’s around us, you can really fight through anything. 

I’m working hard to remember how life is so beautiful and life can be so good and actually, we can all help each other see that too.

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