D-Day is fast approaching

My appointment with the MS nurse went really well and after another look at the options available I have decided that Rebif will be my medication of choice. It's a form of interferon beta-1a and while it isn't a cure (none of the drugs available are) tests indicate that it does reduce the relapse rate by a third, and also the length of any relapse you do have by a third too. And while they aren't exactly hugely positive percentages they're a hell of a lot better than what I'm facing at the minute.

So, I've made the choice and now it's all about the doing. Rebif is injected into the skin 3 times a week and I've chosen Sundays, Tuesdays and Thursdays - that way my 'weekend' starts on Friday mornings and I won't have to inject again until Sunday evening.

And the day of my first injection is looming large ... next Tuesday (22nd March) in fact. Thankfully the MS nurse does the first one, then I go back to her again on Thursday and I inject myself with her help. Finally on the Sunday I'll be at home and it's all systems go.

The process is also made 'easier' by a very fancy looking machine that Rebif comes with. It has so many bells and whistles I couldn't even begin to list them all but it's safe to say I'm pretty impressed by it. It doesn't remove the injection (naturally!) but it does make it more palatable.

I also go through what my MS nurse called 'titration' - this is where they start me on a low dose of 11mcg for 2 weeks, then increase it to 22mcg for another 2 weeks before I am finally on the allocated 44mcg. It is hoped that this gradual approach will help my body adjust to the drug better and lessen the affect of any side effects.

Talking of side effects, they aren't awful but they aren't pleasant either. Flu-like symptoms are the most common, shivering, aches and pains, headaches etc, as well skin reactions at the injection sites. However, most patients find that these disappear over a few months and if they do continue regular painkllers like paracetamol and ibuprofen can help. They are also why I will generally be injecting at night so that I hopefully sleep though any reaction I may have.

So, all in all, it's not so bad. I am a little nervous but hopefully once I get the first week over me it'll simply become a part of my life, as normal as brushing my teeth and having a shower. Fingers crossed :)

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.

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 :)

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 http://www.halfofayellowsun.com/

Unconditional love

My baby girl is currently suffering from her first cold ... and it's horrible to watch. Her eyes are streaming, her nose is all blocked up and she's generally not in good form. Worst of all there's very little I can do to help bar using saline nasal drops and giving lots of cuddles.

And the situation made me think back to a previous blog I posted on here about how I believe my diagnosis is probably harder on those who love me most - namely my husband and parents - because if I could have the cold for her I would and I'm guessing that's how they probably thought back in April 2009 when I got the news that I had MS.

That's the thing about being a parent - your perspective changes, you never come first any more, your children become your everything. And I wouldn't change it for the world.

I really hope my precious girl gets better soon, even if it's just a simple cold it's taking it's toll on her (and me!)

The waiting game

There's always been a 13 week waiting list for DMD's in my health trust - basically the neurologist recommends you go on the drugs, your name goes on the list, you visit the MS nurse to see the needles and decide which one you like best (honestly, you couldn't make this stuff up) and then 13 weeks from the process started you get to try them out.

Now, when my neurologist placed me on the list last January (2010) he also pre-faced his advice with the line, 'You have to be off the drugs for at least three months before you even consider trying to conceive, because we have no way of knowing the impact they may have on an unborn baby, so if you want a family you may want to consider having it now.'

I subsequently went to see the needles and decided I'd rather go through labour first! Well, sort of. In truth, J and I were ready to have a family so we decided to try for a baby while I was waiting the 13 weeks - and lo and behold we now have Charlotte, our first baby.

Following her arrival I gave myself a few weeks to get my head around being a mum and then phoned my MS nurse to get me back on that list. She told me that just 12 months after first being placed on the list things have changed. Now, every case is judged individually by the powers that be (ie. the men/women that hold control the money) so I'm now waiting patiently to see if they allow me the opportunity to at least try and stop this illness in its tracks.

It's taken me some weeks to write this post because every time I mentioned it before now I've gotten so frustrated I've cried. Put simply it annoys me beyond words to know that someone who I've never met before holds my destiny in their hands. It also winds me up that because I choose to have a family first the rules have since changed.

I wouldn't change my choices if I could do it all again - because then I wouldn't have Charlotte - but there's no denying I feel let down by 'the system'.

No one else lives my life, so why should someone else have the right to deny me a way to make it better.

I live in hope

At last... I've managed to grab some time to blog for the first time in 2011. Of course, I'm still using Charlotte as my excuse (having a newborn in the house does not leave time for much else besides looking after her, cleaning and cooking dinner!) but it's my self-imposed resolution to get writing on here more often this year.

The reasons being ... Firstly, maternity leave takes me away from my daily job of working with words and I would like to think that writing on here keeps my brain active at least a little bit - and secondly, my initial hopes of this blog was to both keep a record for myself of how my life is with MS and also to *maybe* help others with MS to read a mainly positive aspect of living with the condition.

So, off we go again....

And as the first post of a new year it is wonderful to report on some good news as it would be remiss of me not to mention the fabulous news this week that the European regulators have given preliminary approval for a drug in pill form, called Gileyna, which in trials was proven to cut relapse rates for MS patients and slow the disease’s progression. (you can read more about it here ... http://goo.gl/fb/gYsfU)

This is particularly heartening for me as I have just recently placed myself on the waiting list (which by the way is an entirely different blog post I will be having in the not to distant future) for the injectable disease modifying drugs (DMD's).

Hopefully the NHS will see that these pills are worth their money and I will not have to inject myself for too long before they are given the green light. I live in hope.