Decisions, decisions

After a four week hiatus from injecting Rebif, I have had a productive meeting with my MS nurse about the next step forward for me as regards treatment.
I have definitely felt guilty about taking a break, because I know there are MS patients across the world who would give their right arm for any treatment whatsoever.
But I had this feeling in the pit of my stomach that I simply could not ignore, and it was telling me to take a break. So I did, and it's now over.
And I am absolutely convinced that many of the problems I have been experiencing over the last 12 months have been more a result of side effects from Rebif than any MS symptoms.
There's no question my head feels clearer and the flu-like aches and pains have also lifted.
So, my meeting today was to decide which other DMD I would try instead. There are three options available to me, each with their own pros and cons, so I'm going to have a good chat with my family, and do some more reading, before I make a final decision on which one I move to.
But, there's no question that I cannot accept a treatment plan going forward.

A day in the life

Life has definitely changed now Charlotte is here so here's how my day looks at the minute.

Charlotte used to sleep until 7am but she's been waking at 6am this week so I'm hoping this early start doesn't become a regular occurrence - that hour makes a difference like you wouldn't believe.

Then it's a bottle and nappy change for the wee lady before I take my medications and a cup of Earl Grey. Tea is a big part of Northern Irish life but I hate the regular stuff, especially brewed to within an inch of its life. I just pour over the water, take out the teabag immediately and drink while it's still hot. Although I have been known to take a cup that's cooled down to freezing while Charlotte takes priority!

A wash is thrown in the machine, the place tidied round and I'll sit watching the breakfast news, always on BBC1, for an hour or so while I wake up proper. And despite my husband working for local BBC radio I rarely switch it on, I'm more of a TV kind of gal. He usually gets home for a break around 10am so I'll make him his breakfast and then pop Charlotte down for one of her legendary cat-naps - she sleeps for 40 mins if I'm lucky, it's normally 20.

I find time somewhere along the way to send a few tweets, usually about 4 a day although this number does vary - some days it's 20, others I write none at all, depends if the chat is interesting enough!

Usually I plan a trip out of the house, even just for coffee with friends or a walk in the park - anything to get out for an hour otherwise I feel like I've done nothing with my day. The activity will depend on my energy levels and whether my feet are painful or not. In recent months I've had to admit that taking it easy is no bad thing either so if I think I'm better staying at home I'll invite someone round - I love company.

Joe's home mid-afternoon and we have some family time, playing with Charlotte, laughing at her little expressions and marvelling over how quickly her personality is developing.

Dinner is something homemade, we rarely eat takeaways or ready meals, and I make the majority of Charlotte's meals from scratch too. I do buy organic fruit purees because to be honest, they're 100% fruit and if I was to buy fresh fruit and puree it myself it wouldn't only take forever but cost a fortune too - so while I like her to eat well I'm not stupid, sometimes convenience is just as good.

Her bedtime is around 7pm and she's usually no bother so our evenings are our own. Once she's down I take an hour to sort bits and pieces out, maybe do a spot of ironing, which is my least favourite household chore so I keep on top of it rather than give myself a huge pile!

Then Joe and I will settle down to read the papers or watch a spot of TV. I'm loving Sky+ because we can save the series we want to watch together for when Charlotte sleeps. Although the new Sky Atlantic channel has us spoiled at the minute so we switch between Boardwalk Empire, the Sopranos or Game of Thrones. If it's a weekend night we'll have a glass of wine and chill out.

Three times a week I inject my DMD's so I get out my little record book and double check I'm rotating my sites properly. Then I inject before I have too much time to think about it and it's bed for 11pm latest.

Low blow

Tonight marks the end of week four on Rebif and it has been a tough week. That's hard for me to admit because I approach everything MS related as positively as I possibly can. However even I have to admit sometimes that the clouds turn black now and again.

I'm not sure if it was the Rebif hitting me or a weekend of solid sun that did it but I woke up on Monday feeling as though a bus had hit me in my sleep. Besides feeling a 'bit low' every single ounce of me ached and walking was like wading through mud. But I have a 22 week old baby and lying down under a black cloud is simply not an option.

And you know, that's a good thing. I gave myself a talking too, got under a hot shower and got going regardless.

That all said it was the start of a week I'm glad to be putting behind me - physically, mentally and emotionally. I had a chat with my MS nurse yesterday and she said it's pretty normal to have a 'down' day now and again, even when you're well. But it's not a state of mind I'm used to.

With a body in pain it's hard to keep your mind intact too but I think the enormity of what I'm actually going through has only just hit me. This process isn't a stop-gap, it's not going to end tomorrow, it's for the rest of my life. And that's the hurdle, realising it's FOREVER.

I've always known it was but the physical act of injecting myself makes the knowing very real.

Lift off

The first two weeks on Rebif are now over and the verdict is in. Started on a smaller dose than expected - just 8.8mcg every day - but the aim is still to be up at 44mcg by the start of week four.

The first day was weird because they suggest you take no painkillers at all so I could assess the side effects properly. So basically I sat around all day waiting for something to happen. Every twinge made me question my own body and it eventually transpired that the only obvious side effect was a persisent ache in my bones - like the kind you get when you have a proper flu.

So the plan from here on in is to take a few painkillers about an hour after the injection so it kicks in before the aches.

The actual injection itself isn't so bad. It does take a wee touch longer than I expected. The needle goes in and you have to hold the machine on the skin while the drug is administered before the needle is then retracted again. But it's nothing I can't get used to.

I've read some other MS patients' thoughts and there is a train of thought that you will find a site that you least prefer. Already I find myself not liking the stomach area but you have to rotate so I've been employing the help of my husband and getting on with it.

Today marks the start of week three and a huge increase up to 22mcg every injection so I'm hoping my body plays ball and the side effects don't get worse.

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.

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.

The fork in the road

So, I had my appointment with the neurologist on Wednesday and he didn''t really tell me anything I didn't already know. That can sometimes be the problem with being well-informed. The internet is such a wealth of information that I've almost diagnosed myself before I get there. BUT, that said, it does help to go with some idea of what the professionals are going to say - it means nothing is too much of a shock.

Anyway, he confirmed that the sensory problems in my feet were officially a relapse. He also seemed relieved to know that my appointment with his colleague, who specialises in MS, was soon (next Monday, 25th). I suppose it makes sense that I have more specialised care - and since my neurologist seems to think that my next route is disease-modifying drugs (DMD's) - he is more than happy for me to have someone who knows more about the condition looking after me.

The news about the DMD's, is again, not unexpected. The implications of them however are certainly hard to take in. More specifically, the information that you are advised not to conceive while taking them (because there has been no research done to tell what damage the drugs may have on the baby). Obviously I am at an age where having a family is becoming a distinct possibility - especially given that I am getting married in less than seven weeks.

So now, we face a dilemma. Do I start the drugs asap and give them a chance to get working before I embark on a family, then come off them in a few years time to have children.
Or, do we decide to have our family straight away, and start the drugs in a few years time, never to come off them again.

In my mind there is no right answer. I have thought continuously about it since Wednesday, and there is never a solid reason to go with one option or the other. The only conclusion I have come to is simple - we want a family, it's just the 'when' part me and J need to figure out.