Skip to main content

The Morning after the Night Before

So, hi guys. It is me having risen from 12 hours of sleep (post 2 hours nap). I was intending to blog yesterday after I finished the last of Lem but I was too tired. I mean, in my bones, shaky eyeballs tired.
I'm still tired today but feeling more human and I'll take the tiredness over the rash and nausea any day. I would say over all that I've coped better than I anticipated and I will take a moment to pat myself on the back here. I didn't even cry when I wanted to throw up my guts as the lovely nurse had to repuncture a bruise to get into my non-cooperative veins.
My arms do officially look like battered peaches and weigh as much as lead but on the plus side, this treatment could change my life. Aaahh it almost seems crazy optimistic to say this out loud, but it really could! 

I'd like to take a minute to gush about the company I was in for about an hour or so of my treatment yesterday. These heroes come in monthly for their Tysabri infusions and are just legends. They stick a massive cannula in their arms EVERY month. Heroes. Just heroes. Anyone who knows me will know how squeamish I am just over conversation around blood or veins or needles (eye tests make me squeal, that's how bad it gets. Completely psychological, I don't know, man). 
Anyway, we just engaged in conversation about whether I was a Tysabri patient and we went into what Lemtrada was and then from there it was this wonderful dialogue around living with MS, being human and taking life as it comes. It was so insightful to speak to MS sufferers that were so positive and were doing less suffering and more living. We shared our love of food and what we like to feed our bodies with to give us good energy, fatigue tips and discussed our love for yoga and meditation.
We also discussed pregnancy and the difficulties we had faced but in a way that egged each other on to push pass this disease and bloom into who we are supposed to be, not what society expects of us.
I just felt/feel so inspired. These ladies were fabulous. A physicist and the other a mother of two children. Just whaaaaaat! Amazing ladies. I also had the pleasure of meeting some of their family member and we got into the nitty gritty of language, politics and culture. I can't imagine a better way of ploughing through a rough treatment.
To Mel and Sylvia, you shone a light on me yesterday and you gave me such hope and happiness. I'll carry that and I hope to see you well very soon.
Check out Mel's blog manylemons.com
It's brilliant and full of amazing insights and information.

As for recovery, I'm taking it slow, day by day. I have wonderful people around me, the sun is shining and while it's good I'll embrace it, and on rougher waters, I'll just have to ride those waves. Thanks for reading :)

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