Monday, 10 June 2019

4 years 3 weeks - Big milestone for the blog and I'm going to 'Come Out'


I woke up this morning feeling good, I had energy, I felt upbeat and raring to go. I remembered my meds on time, jumped in the car and got into work. An hour and a half later and I feel like a flat tyre, someone has ‘popped’ me and let all my air out. I’m hoping that if I don’t do too much that I’ll ‘re-inflate’ later LOL
Last week was a whole lot of relaxing outside work, we had lovely meals and chilled and did very little really. Winston had another trip out to the pub and didn’t disgrace himself (much) although there was a lot of bribing him with food involved in keeping him calm and focused on us.

When I started writing this, Lemtrada was a newly approved treatment by NICE - I was only the 3rd to have treatment at Southampton once they were approved to administer it.
I had read so much by those who participated in the trials and kindly documented their experiences so those of us that followed could read the experiences of those incredibly brave people and understand what Lemtrada was and how it felt for them. It was reading those experiences, exchanging messages, emails and sometimes late night calls with those writers that made my mind up that Lemtrada was the right choice for me. I wasn’t going to give in quietly to the MonSter, I was going to war with it and well - I’m northern and ginger and I don’t fight fair so my MS should be afraid – very afraid.

The film ‘Pay It forward’ stuck in my head. The simple concept that in your life; do something good for 3 other people for no other reason than you can and ask them to also ‘pay it forward’ to 3 more. If my random ramblings could help just a few people to understand how the treatment had  been, why I chose it, and how life has been since then – well I was ‘paying it forward’ too.
It also seemed only right that having benefitted from those stories online that I should add to the documented experiences available, not just to be a recipient, but a participant too. I’m not a talented writer, grammatically I’m terrible, I am pretty crap a spell check and goodness knows I ramble a lot; but if it helped just one person – that was enough.

It never ceases to amaze me how what is effectively my online diary of life post Lemtrada and my strange slightly animal controlled life has been read by so many people around the world. This hardly a ‘right riveting read’ it’s just a diary of a  slightly crazy middle aged bird with MS.
At some point this week though the number of reads for the blog will pass 200,000 views worldwide.

I’m staggered, humbled and just a little bit intimidated at the thought.
I feel like I should throw a virtual ‘party’ and do something different to say thank you to those who have read this over the last 4 years.

I’m going to have a chat with Gareth tonight and see if he will help me with popping something up onto YouTube. Goodness knows I’m self-conscious about my weight; I hate cameras and it’s my idea of hell, but I should stop hiding behind a keyboard and ‘come out’.
If the British weather will co-operate perhaps something filmed in the garden with the dogs running around and a G&T on standby for courage.

Just writing that terrifies me ……. Time for me to ‘Find my brave’

No comments:

Post a Comment