Friday, 25 February 2011

The news is in

I can hardly believe I'm writing this but .... the funding has been approved for my MS drugs. The news came yesterday morning and the call took me completely by surprise. When my MS nurse said hello I expected her to continue with, 'sorry to tell you this but it looks like you may have to wait a while longer for your disease modifying drugs'. Instead she said, 'Thankfully the funding issues regarding DMDs have been resolved and the good news is you're top of the list'.

I then phoned my husband and promptly burst into tears. I was simply overwhelmed. Taking these drugs is something that I've been thinking about for the best part of a year and now that it's finally here I didn't know what to think.

I'm so delighted to be given such a chance at beating MS but there's no doubt that I'm also a bit scared about the whole process. I guess if they were handing me some tablets to swallow I wouldn't think twice about it but because I will have to inject myself it seems like a much bigger deal.

But when I texted a friend to share the news she made three brilliant points.
First off she said, 'oh god, that's amazing' - and it IS amazing, I can't let myself forget that. Secondly she said, 'You've dealt with far worse' - and that just centred me immediately; made me realise that this is not the worst thing to happen to me. It is, in fact, exactly as she said next, 'an opportunity'. Finally, and most importantly, she said, 'Think how u would feel if someone rang now and said you hadn't got it. You would be gutted'.

Never have truer words been spoken because if they had denied me that chance I would be on here now giving off bucketfuls. Instead, I am announcing BRILLIANT news, news that will hopefully keep me well for longer, and there is no better news than that!

I now just have to decide which of the four options available will fit into my lifestyle the easiest so I've arranged a meeting with my MS nurse next week to talk through the various drugs and hopefully once that decision is made it will be full steam ahead.

Tuesday, 22 February 2011

Adult company

Having Charlotte has certainly given my life a whole new twist, and more importantly, meaning. But, while I love her with all of my heart, I am also, strangely, looking forward to going back to work.

A newspaper office is a very stimulating environment. Yes, it's stressful constantly working to deadline, but it gets my brain going and at the minute all I seem to do is work out when Charlotte had her last bottle and sing the latest nursery rhymes!

So it's no wonder I am starting to crave a proper conversation. That said, I'm not due back until the end of July so it may be that by the time it rolls around the last thing I will want to do is leave Charlotte with someone else all day.

However, I only work a three day week - a decision I took when the fatigue side of MS was playing havoc with my work/life balance - so going back doesn't feel like it will be such a wrench.

In the meantime I try really hard to meet friends and family a couple of days a week to make sure I don't forget how to hold a conversation. And, in an effort to get some quality 'me' time squeezed in I have just booked a lovely overnight stay in a luxury hotel with my bestest friends - now there's a way to get the conversation going :)

Tuesday, 8 February 2011

World Book Night

Anyone who knows me well knows I'm a massive lover of books.

My husband can't understand how I can devour one in a few days, questioning how I've understood the story or the character quirks. As a child I couldn't even go to Tesco without a book in my hand - the one mile journey was much too long without some reading material to pass the time - and I've been known to lose myself in a bookshop for hours at a time.

So, when I heard about World Book Night it was as if it was made for me to take part in. The idea is easy. They're giving away one million books on 5th March 2011 and in order to do so they requested 20,000 'givers' to give away 48 copies of one title chosen from their list of 25. In case you're wondering, I know 48 times 20,000 doesn't equal one million ... the surplus will be given to hospitals and prisons etc by the organisers themselves.

I rapidly filled the form and hoped I would be chosen. And guess what, I have been! This fills me with so much joy I can't describe it. First of all, if I won the lottery this is definitely what I would do with some of the money, giving away the gift of reading to random people in the street. Secondly, it's my first wedding anniversary and this seems like such a novel way to mark the occasion. Finally, as part of the form filling you had to give the organisers an idea of who and why you would give your 48 copies to and I mentioned that part of my quota would go to my local MS Society branch. I'm hoping that Terry, the branch organiser, will have an idea of which members would appreciate a book, maybe those stuck at home or unable to work, and let them know that they are not alone.

Because in my mind a person who reads is never on their own.

As well as giving random people in the street a few copies my family and friends will definitely be in line for a good read too but if you think you deserve one then leave a comment telling me why and I'll pick two people at random and post them out ... don't say I'm not generous :)

For the record the book I'm giving away is Half of a Yellow Sun by Chimamanda Ngozi Adichie and you can read a bit about it - to see if it floats your boat as much as it did mine - at