Thursday, 27 January 2011

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!)

Tuesday, 25 January 2011

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.

Sunday, 23 January 2011

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 ...

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.