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

My Medicine

Hello! It has been quite some time and I supposed a got a little kick in the backside from my mum who was asking the other day what had happened to my blog and if I had deleted it. After that call, I’ve been having a real think about why started this blog in the first place, and ultimately what I was trying to do was document a journey that fellow MS warriors could follow to see what another person’s medical and personal journey looked like. I’ve been writing for the MS Society which has been a great chance to connect with the community, but I have found myself slipping away from my own blog. When I started writing, I wanted to make sure that those who were newly diagnosed could hear frankly what a real experience looked like, but also walk through my mental processes as I worked through it myself. It isn’t all doom and gloom as it was told to me 5 years ago (and still can be I may add) but it is about learning the patterns of your body, utilising some handy tips and trick alon
Post a Comment
Read more

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
Post a Comment
Read more