Tuesday, 29 June 2010

Coming out the other side

Two Fridays ago I had what can only be described as a meltdown.

Maybe it was the un-inspiring consultant appointment that did it, or perhaps the simple fact that I was trying to squeeze too much in (again) but basically I fell into a black hole for a few hours and it wasn’t pleasant.

It all came off the back of a pretty intense week at work when the entire city was waiting on the historical release of the Saville Report which investigated the tragic events of Bloody Sunday in Derry some 38 years ago. When it happened, it was an emotional day, and we were all flat out trying to get all angles covered for a special edition of the paper.

As a part-timer I flipped my hours and did a late evening shift rather than start first thing and work flat-out for 13 hours straight like the rest of my colleagues - a move I thought wouldn’t impact on my fatigue levels too much - how wrong can you be!

That late finish, followed by an early start and then another long day when I barely lifted my head, finally hit me - hard. I woke on Friday morning completely zonked out, with not an ounce of energy left in reserve. And, blame it on the pregnancy hormones, but I just crumpled.

And I cried. Not just a few tears but a breath-taking sob-fest that ended with me hurled into my husbands arms blubbing about the injustice of having MS.

And I hated myself for doing it. There is no good that can come from self-pity, it just makes you feel worse than you did before. But, in my defence, once I was done crying, I was done crying. So, while I was berating myself for being so self-indulgent at the time, in retrospect I recognise that these moments are part and parcel of living with MS.

It’s not an easy illness to have. It’s a chronic one. And as such I’m not supposed to, or expected to be, happy-go-lucky all the time. That realisation is one I’m glad to have finally hit upon because pretending to be something you’re not all the time isn’t healthy either.

Monday, 21 June 2010

To drug or not to drug

It was back to the hospital last week for an appontment with my MS specialist. Technically though he might as well not even have bothered seeing me.

Firstly, I mostly spoke to the MS nurse. She is fantastic and asked me lots of questions that I gave honest answers to. And to her credit, she made lots of notes as I spoke. In short, I told her that since my relapse at Christmas I have been relatively well. There is some residual pain left in my feet, and that varies from hour to hour, never mind day to day, but generally I’ve been ‘grand’ - as we say here in Derry!

J and I also got the chance to ask her about the drugs again, and express our wish that I remain on the waiting list while pregnant. There is currently a three month waiting list for drugs so I want to be right at the top of that list as soon as I choose to start the treatment.

That’s something else we will have to talk frankly about. I’m not sure I want to give birth and start injecting myself with drugs straight away when I have no idea what sort of reaction they will have on me. Ideally, I will give myself a few months to settle into a routine, get myself acquainted with being a mum (eek!) and then think about moving forward with treatment.

There is also a very real chance that I have a relapse straight after the birth. This is not true for every mother with MS but I have been told very succintly that there is a higher risk. So, it’s very much a wait and see process.

Additionally, I have an ideal senario in my head in that we will add to our family quite soon after our first baby arrives. I’m not talking a few months later but maybe ten or twelve months later - my idea being that we ‘get it over and done with’ - which sounds very clinical but I’ve always been a practical type and I figure that once you get into the way of changing nappies and making up bottles you might as well keep going!

Anyway, the crux of the conversation is that both the nurse, and the specialist (once he deemed me important enough to talk to) say that I should really give myself at least twelve months on the DMD’s for them to have any worthwhile effect so it’s looking as though we have another choice ahead.

The first option is to have baby one, stay off the drugs and take what’s coming on the chin (which may of course be absolutely nothing) and then proceed to have baby two pretty soon - as I outlined above.

Option two is to have baby one, give myself a few months breather, take the drugs for at least a year, giving them a chance to have some impact, then come off them for the required three months before we try and conceive baby two.

At the minute I’m concentrating on staying as well as I can throughout my pregnancy and with my husband being the ever constant voice of wisdom in my life, he has made a very sensible suggestion that we have baby one and then make a more informed decision once it’s here safe and sound - he’s never been one for looking too far ahead and at this juncture I think his wait and see approach is one I’m going to take.

Before I sign off, I should go back to the specialist - he really was with me for all of 2 minutes and my husband and I both felt that his demeanour gave us the impression that each of his seconds was very precious and could we please just hurry up and let him get back to his job.

I understand that the NHS is at breaking point, and that he probably did have a massive case load to get through that day, but I am a human being, not a number. It would be nice if he could remember that sometimes.

Wednesday, 9 June 2010

Baby, baby

Way back in January I blogged about the dilemma my husband and I faced as regards having a family - the crux of the matter was, I either went on the MS drugs or we started to have a family. At the time it seemed like a huge decision - on one hand I wanted to focus on getting myself better while on the other I knew we both wanted children.

Well, I’m pleased to report that the decision has well and truly been made .... I’m 17 weeks pregnant and it’s all going great!

I have suffered horribly from tiredness and morning sickness (that lasted all day!) but in the last two weeks that has started to get easier - now we’re just really excited about welcoming our baby to the world in November.

We always said that 2010 was going to be our year - and with our wedding and a baby on the way already it’s certainly looking as though that’s going to be the case.

Thursday, 3 June 2010

It's not always about me

Getting frustrated about things I cannot change is something I usually don’t indulge in. I’ve always had the attitude that what’s done is done so you’re better to face it head on than stress about the stuff you can’t fix.
My approach to my MS diagnosis has pretty much followed this path and it has stood me in good stead so far.

However, there is one aspect about having MS that frustrates greatly - and it’s something I will never be able to change. And that’s the impact my illness has on those around me.
This hit me hardest when first diagnosed. While I was striding forward, convincing everyone in my wake that this really wasn’t the worst thing to happen, I watched my husband and parents struggle to come to terms with it all.

Looking at things from their perspective I would probably be the same. After all, when someone you love is hurt, whether that be a cut on the knee or a life changing diagnosis, you want to kiss it better.
But they must look at me and I think, ‘What can I do to help?’.
In truth, despite not having a magic wand to make me better overnight, they have helped massively, in all sorts of ways.

My mum helps with practical stuff like the ironing and she has this unbelievable gift of coming into my home like a whirlwind and somehow leaving 60 minutes later with a clean house left in her wake - genius!

My dad just keeps the jokes coming ... and then, every so often, we have a heart to heart where I get to off-load lots of stuff I’ve been thinking and/or feeling and I feel miles better.

And then there’s my darling husband who worries like mad and takes the brunt of any mad mood I may indulge in. He has held me tight while I’ve sobbed (which I might add happens so rarely I think he’s sort of glad I’m actually having a cry so I’m not trying to be superwoman all the time!) and told me very patiently that no matter what the road ahead brings, we will face it together.