Because she brightens up my day ...

... I hope she brings a smile to your face :)

Just in case

The last few weeks have been beyond manic - but I believe I can be excused for my lack of updating the blog given that I have a 5 week old at home! Charlotte has quite simply taken over - in the nicest possible way.

MS wise this last few days have not been easy. My feet are playing up again and the pain in my right foot is not unbearable but it isn't pleasant either. That said, I am delighted to report that I have not yet had a relapse following Charlotte's arrival. It's well documented that your chances of a relapse following pregnancy are increased so I feel incredibly lucky to be generally quite well.

However, I have placed myself back on the active waiting list for disease modifying drugs. I am not sure if taking such toxic medicine is the road I wish to pursue just yet but I do believe in keeping my options open. Therefore, given that there's a 13 week wait for the medication, it makes sense that I am on there 'just in case'.

It's a decision I will need to take after some serious soul searching and I'm hoping that it will suddenly become clear in the coming weeks. In the meanime, I am looking forward to spending Christmas with my family - especially my new daughter!

Presenting Charlotte Beth ...

She's here ... our precious girl - Charlotte Beth - was welcomed into the world on 11th November at 4.31pm weighing in at 7lbs 12oz and she is honestly the best decision I have ever made!
Already our house is filled with an inordinate amount of pink and it finally feels like the family home we so hoped it would be.
And I know I'm naturally biased but she is simply perfect!! At the minute she's curled up sleeping in her moses basket while her daddy cleans the house and I have ten minutes out to myself on here.
If I ever had one ounce of doubt that becoming a mum was perhaps not the right move it has been banished without a second thought because I promise that it is THE most amazing feeling and privilege I have ever had the benefit of having.
Yes she is hard work, like all newborns, but I would go without every lost second of sleep all over again in an instant.
So, to anyone with MS who wonders if having a child is possible, my resounding response is most definitely yes. And I know everyone's circumstances are different and that I myself may have moments in the future when it seems an impossible task but when Charlotte looks at me with wide eyed wonderment every time she wakes it is no exaggeration to say that she makes my life complete - and I wouldn't exchange that feeling for anything in the world.

The uncertain path ahead

Here's the thing. When I started this blog I promised myself that it would document all aspects of life with MS - the good, the bad and the ugly. But as I wish for it to remain a positive account it is sometimes easier to ignore the bad and ugly sides.
However, in recent weeks I have found it difficult to sidestep the issue of uncertainty and that's why I've been away for a while. I genuinely feel that voicing my concerns here will have a negative impact on my thought process but in the interests of keeping it real - here goes.
Of course, the impending arrival of my first born - expected in just over 2 weeks - has me very excited and I've never questioned our decision to have a child - both J an I are going to be great parents (if I do say so myself) - and will strive to give our child(ren) all the love and support they will ever need.
BUT, and here's where the uncertain aspect of MS rears its ugly head, it does worry me that having a child has been a somewhat selfish decision. Yes, we will be great parents and as John Lennon once said, 'Love is all you need' but is it fair for me to sentence our unborn baby to a life with a 'sick' mummy.
It's so frustrating because as I, and all MS patients, know, there is no crystal ball for what lies ahead. I may never deteriorate further and if being this 'sick' is all I have to face then I would be a very happy woman. But there simply is no knowing.
I hate that I go to sleep some evenings and worry about what sort of state my own body will have left me in by morning. I've read the experiences of other MS patients and know that there's a possibility I could, for example, suddenly wake up with impaired or no vision. And there's no point in pretending that that thought doesn't scare the absolute c**p out of me.
I also hate it that MS isn't something I can work at getting rid of. It's there, inside me, working whatever damage it feels like doing - and no amount of positive thinking can make it stop.
In essence, it's an uncertain road and I'm at its mercy.
Yet, I will finish on a positive note - I can't bear not to! For all of its faults and the uncertain future it represents, MS has not taken away any part of my personality - and I am determined that my child will grow up with a confident, happy and positive mum by its side - you just watch!

It'll all be worth it in the end!

Okay, so I've just over five weeks to go and I'm already hoping that I defy the myth of first time mums going late and have this baby early. Not massively early because I, of course, want it to be a good weight - lovely and healthy. But honestly, carrying a baby is hard work.
This week has felt especially hard because the wee mite is doing what it's supposed to and moved head down into my pelvis ready for labour. So, once again, while I'm all chuffed that it's behaving itself and doing as nature intended, it is really starting to hurt.
I have tiny feet pushing up under my ribs at the right, two little fists punching my left side and a head pressing on my bladder - usually all at the same time!
Work today has dragged as I cannot find a single way to get comfortable, and I'm also conscious that this time next week I'll be finishing up - and I'm counting down the hours in anticipation.
Thankfully I held onto some of my holidays so I'm only at my desk for 5 hours next Monday and all of next Thursday, so it should fly by. Then I simply intend to hibernate at home and start nesting - ready for the much-anticipated arrival of our precious bundle of joy.
And once it gets here I'm sure all the aches and pains of recent weeks will simply fade into the background ... and the sleep deprivation will take over instead!!!

8 weeks and counting ...

The birth of the baby is fast approaching - just 8 weeks to go!! - so we have brought the pram home (I swear it needs two months to get used to all the buttons and gadgets!) and I am eagerly awaiting the arrival of our nursery furniture.

I cannot wait to get all the little white and 'neutral' clothes washed, ironed and hung up in the cute wardrobe we've ordered. But before all of that I really need to think about getting my 'bag' packed. My mum is convinced I'll never go to full-term (I'm not THAT big, honest) - but it's better to be safe rather than sorry, especially as I could never trust J, as brilliant as he is, to pack all the right stuff under pressure! I can just see myself mid-contraction screaming, 'No, not that pair, I need my fancy slippers!'

Aside from all the excitement this baby-growing lark is hard work. I've been getting really tired lately, which everyone warned me would hit around this time, and I find myself wanting to sleep in the middle of the day. But it's also a time when the baby's movements are really pronounced - I get kicks all day and find little body parts digging up under my ribs at night - which is the most unbelievable (and sometimes uncomfortable!!) feeling in the world.

Overall though I've enjoyed being pregnant. It's such a miracle, to grow another human being - the magnitude of which I have never fully appreciated before now. To think a little person, half me and half J, is almost here is an overwhelming thought. And I am sure it will be a life changing experience like no other.

Finally ... flat shoes I love!

In my constant quest to find a pair of gorgeous flat shoes that are both comfy and on trend - rather than sore to wear and plain black - I spent a glorious half hour in Dune at the weekend trying on every pair they had. Eventually they came up with these ... the most beautiful pair of flat shoes I have ever had the priviliege of owning.

They also had several other pairs of flats, including winter boots, that I now covet greatly. Roll on for the next pay day when I might just treat myself again.

As an aside they also had a very beautiful bag in store that was screaming to be bought - and big enough for me to justify buying as a crossover changing bag for when the baby arrives - but it was priced at £135 (!!!!) and in fact not justifable at all in the current climate of saving for baby so if anyone would like to treat me it looks like this and comes in three colours - I'll take any one you like :)

Smiling through the pain

Sometimes I'm so intent at proving to people that I'm doing ok that I forget to look after myself. And so it was that this week my right foot decided it had had enough. So much so in fact that I had to take Wednesday off work and basically sit doing nothing.

Thankfully that day's rest seems to have done its job and while the foot isn't 100% it's certainly not as painful as it was. The burning sensation comes and goes and while walking on it can feel a bit like walking across a bed of pins it's not unbearable.

As an aside work was manic yesterday and at one point my deputy editor came over looking decidedly stressed out ... we mutally complained a bit, getting the troubles of the day off our chests and as she went to leave she commented ... 'and yet, here you are still with a smile on your face' - that's me, always smiling :)

New audience

A colleague of mine posted a link to this blog on her blog (www.claireallan.com) - which is infinitely more successful and widely read than mine but she's an fabulous author so that figures! - but I digress - the point is that more readers have come this way as a result.

And, as it's always been my aim for this column to educate and inform, it's great that it's starting to reach a wider audience. So, if you're new here - welcome!

It's also attracted the attention of a young woman who I met many moons ago through what the people in these parts call 'cross-community projects' - ie. they made Protestant and Catholic kids socialise and learn from each other thinking we all hated each other - they couldn't have more wrong by the way but it was a free weekend away and me and my mates where there in seconds.

So we've kept in contact via Facebook over the years and yesterday the mentioned young lady sent me an e-mail, following reading my thoughts on here, asking if I would like to recommend an MS charity that would benefit from a Christmas Day swim she and her mates are doing later this year.

The gesture has really touched me - to the point that when I tell people of her intentions my eyes well up with tears. And even though I'll have a newborn at home over December I'll still be championing her efforts and raising a few ££ for the cause - after all, if she can don a swimsuit in the middle of winter and brave the Atlantic when most people will be opening presents and drinking an early glass of wine then the least I can do is contribute to the fundraising.

I'll be on here reminding you of it nearer the time so keep collecting your pennies in the meantime - it doesn't take long for the pounds to add up!

What I miss the most

I’ve just spent a lovely week off work recharging the batteries and I cannot underestimate the power of sitting still in making me feel better.
We stayed for three nights in a cottage with no television and being forced to simply curl up and read was pure bliss.
I’ve gone back to work raring to go and it’s proof that everyone - not just MS sufferers may I add - always benefit from some rest time.

Anyway ... as an aside, I’ve also been thinking about the things I miss most since diagnosis. It’s silly but it’s the small things that I miss the most.

Firstly, I’ve been saying lately that there has to be some sort of injustice in giving a sun worshipper MS because now if I spend just half an hour under the sun I’m completely zonked. And I miss the sun!

I was also at a wedding recently and besides the fact that being pregnant has me confined to flat shoes anyway, the residual pain and general annoyance that are my feet these days keeps me out of high heels - and I miss wearing high heels. I do anyway but I generally only last about two hours before they become unbearable. And when we moved house recently it pained me greatly to have to place my gorgeous pairs into a box that I know will stay closed for a good part of the foreseeable future.
I’ve also had a hard time finding flat shoes that I like and with autumn around the corner I’m dreading looking for boots I can actually feel good in.

Finally, and probably most importantly, I miss my independence. More specifically it frustrates the hell out of me that I need to rely on family (mainly my mum, aunt and J) to help me with household chores.
It may seem like heaven for someone to come in and do all the horrible house stuff for you (and mostly it is!) but sometimes when I’m laid up with painful feet all I want to do is fill the mop bucket up and wash my own floors myself.

When I can see a job that needs done, and know it would have taken me ten minutes a year ago, there are no words to describe the sense of helplessness that comes over me when I realise that not only would it take me an hour if I dared to tackle it myself now, the simple reality is that I just can’t do it at all. Such a task would leave me knackered for the rest of the day and saving my energy is something I’ve learned to prioritise.

But, this week I’m simply enjoying feeling brighter and with the baby due in just over 11 weeks, making the most of the quiet for now!

The new abode

The big house move is now complete and it’s amazing. We’re out in the country in our own wee patch of paradise and I swear the new atmosphere is a tonic for my mood.

Every day I race home from work – inside the speed limit of course – and an impulsive smile crosses my face as I pull into our drive – especially if my husband is there before me! It’s a whole new era for us as a couple and a complete lifestyle change too. And I never thought a house could become a home so quickly.

We have all our photos up, the painter is in giving the rooms a fresh lick of paint and we’ve had a constant stream of guests up to see us settled. I love having my family and friends around me and the new house is simply made for entertaining.

That said, I have this tendency to go at a project full pelt and not stop until everything is exactly how I want it but that was the old me, pre-MS, and the new me, with-MS, needs to slow down – mainly because my feet are feeling the pinch. But I’m learning more about my limitations every day and forcing myself to curl up in our new conservatory looking out across the hills isn’t exactly a hardship!

Time for celebration

This wonderful city in which I have the huge privilege of calling home has been named as the first ever UK City of Culture - and it's a title I feel we, as locals, richly deserve. Derry is steeped in culture - artists, writers, actors, singers, poets are in abundance - and with our past history seemingly overshadowing everything that is good about us lifting this title is a momentous day in which we can now move forward with a renewed sense of hope and expectation.

If you're still doubting our greatness then this fantastic video showcasing the city will surely make up your mind - and maybe encourage you to come and visit - if not in 2013 then sometime in the future. I guarantee you will be taken aback by the welcome and generosity of everyone who lives here.

Pregnancy and MS

Everyone has this perception that during pregnancy MS symptoms disappear. It was my hope that that would be the case but it hasn’t been my experience so far.

For starters, the second I found out I was expecting I had to come straight off my bladder regulating drugs – and it wasn’t something I relished. For a start, they had given me back some semblance of a normal life and I wasn’t delighted at the thought of giving that up – but, the baby comes first and there was no doubting that I had to stop taking them.

So, with the drugs out of my system and the baby playing havoc with my bladder as in most normal pregnancies it was no surprise to find myself frequenting the bathroom more often. For me, going during the day wasn’t the issue, it was losing so much sleep at night. There have been nights when I’ve been up 4-5 times and it has to be said that the lack of uninterrupted sleep definitely contributed to the meltdown I talked about last month. But, that said, I keep thinking it’s nature’s way of letting me know that a full night’s sleep is going to be the exception rather than the norm in the not too distant future!

Aside from the bladder issues my feet haven’t gotten any better either. There is still some residual numbness coupled with a burning sensation and intermittent pins and needles – which I recognise is leftover from my relapse last December – but which I hoped would disappear in some miracle pregnancy side effect. But it was wishful thinking.

However, in recent weeks there is no doubt that I have been feeling better - I have much more energy and there have been nights when I haven’t had to get up at all to go to the bathroom – so it looks as though I’m entering the phase everyone talks about. It’s only taken me 22 weeks to get here!

PS. I’m not one to bore people with baby scan pics but these ones are just too cute not to post – the top one shows our baby face on, it’s blowing bubbles in the second one and in the third it’s showing off its dexterity, holding its feet with its hands! Cannot quite believe we’re going to be parents soon - cannot wait!

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.

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.

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.

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.

Every penny counts

It's May, the sun should be shining and spring should be in the air. Not so. Instead it's pretending to be sunny with a hint of blue peeking through the clouds and it's absolutely freezing! I know all about it because I spent two hours this morning shaking my collection thingy outside the local shopping centre, trying to raise a few pennies for the local MS Society branch, and mum and I realised too late that we should really have been wearing gloves.

But it went ok. We stood together, having a giggle at the characters that grace Derry streets first thing on a Friday morning, and our boxes were considerably heavy when we finished up so hopefully we've done ok. I have to say though, never again will I walk past a collector. Even if it's just a few pennies, it all adds up and it makes you feel like less of a beggar when people stop for a few seconds.

There's also a considerable feel-good factor to be had from doing your bit for charity. It doesn't take much and it warms the heart to be helping out. And those two hours went much quicker than I had imagined they would so for as long as I'm fit to help out, I will be!

Raising awareness

I'm a journalist by trade so it probably comes as no surprise that I've documented some of what I've faced over the last year or so in the publication for which I write ... And in the absence of a new, more fulfilling post ... here it is!

The day my life turned upside down
It’s a startling statistic but Multiple Sclerosis (MS) affects around 100,000 people in the UK. And I happen to be one of them. Diagnosed last April, it felt at the time as though my world had been turned upside down. Although I had been feeling under the weather, I put the tiredness, headaches and sporadic collapses down to a hectic lifestyle and burning the candle at both ends.

Looking back I wonder how I ever believed that could be the case but I have a tendency to stick my head in the sand sometimes. Considering this time it concerned my health, ignoring the problem was not the way forward. In the time since, I have read up on the symptoms, treatments and information available both at the local MS Society Foyle branch, and on-line. Now I am a walking encyclopedia when it comes to MS.

This week is MS Awareness Week. It aims to educate people on the impact the condition has on patients and also to raise a few pound for the MS Society charity. As such, I have spent the last week home baking a stack of cakes for consumption at a ‘Cake Break’ at work, all in the hope that I manage to raise a decent amount for the charity.

They have been absolutely brilliant over the last twelve months. Locally, the Foyle representative, Terry McNamee, has been a fantastic source of knowledge and support, and some of the money the branch raises goes towards funding a local MS nurse who is quite simply, brilliant and nationally I have made use of the concise information available from the extremely well put together charity website - www.mssociety.org.uk.

And now I’m also writing this ... in a bid to get across the education side of things for those readers not familiar with what MS is and what it means for people like me. I don’t aim to be an expert, and the crux of it is that when it comes to people with MS, nobody is the same. Like many people, the first thing I thought when I heard MS was, ‘I’m going to end up in a wheelchair’. Yes, that can be the case for some people but I’ve been finding that it’s more of an exception rather than the rule.

If anything, having MS is a silent sort of condition. Well, that’s been my experience anyway. If I had a pound for every person who said, “You’re looking fantastic”, I would be a millionaire. While their sentiments are lovely, and certainly not to be scoffed at, if truth be told it can sometimes be a tad frustrating. It may be the case that I’m actually having a bad day, feeling excessively tired, suffering from pins and needles in my feet and/or running to the bathroom every ten minutes.

I’ve felt a few people stare when I’ve parked in a disabled bay, with my badge there for everyone to see, and watched me walk away with nothing seemingly the matter with me. Yet it is often the case that that trip to the shops may just have taken all of my energy to get there. Being able to park closer to the place I’m going to means I’m able to be independent, and when my feet are particularly painful, that can be the difference between an isolated week at home or a chance to get out for half an hour.

For the majority of the time however everyone has been fantastically supportive. My family and friends are my backbone and my work colleagues couldn’t be more understanding. That level of support cannot be underestimated. My approach is also very positive. I live every day as it comes and try not to worry about what’s around the corner because MS is unpredictable in its nature. I’ve also got a new perspective in life - I worry less about the little things and appreciate what I have more - and that can only be a good thing.

While the last twelve months haven’t always been easy, I’m pleased to say that the good times have definitely outweighed the bad. Last month I married my soul mate in a very moving and emotional wedding service and we are looking forward to a long and happy married life together. Before my diagnosis we had a whole host of plans for our life together and, to be honest, they’re still in place - we’ve just tweaked them slightly!

On this day

At the request of my lovely Uncle Tom I'm resuming blog posts with a bit more regularity from here on in .... promise. To start back however I need to go back a bit because I've missed so much out!

Of course, first on the list was our absolutely amazing wedding day. Friday 5th March, 2010 will forever reign high on the list of days I would most love to have all over again. It was, quite simply, amazing.

The day started early as the florist was due at 7.30am, and I rushed straight off the hairdressers for two whole hours of preening. But I was completely calm, not at all nervous and just really excited at the prospect of being J's wife. The morning flew, our house was chaos, but in a good way, and I actually managed to be at the church with ten minutes to spare .... fulfilling a promise I had made to J that would NOT be late ;)

Our service was just beautiful and I only wobbled a little bit at the 'In sickness and in health' part of the vows - obviously those words hold so much more weight now than they would have done twelve months previous - but J gave me a little look, one that only I know translates into a nod that encourages me to be brave, and I was fine. He has been my rock up to now and it's the most wonderful feeling to know I have married my soul mate - someone who I know will support and encourage me no matter what life throws at us.

But enough of the soppy stuff .... the rest of our day went off without a hitch. It was amazing to have everyone we love with us for such an important part of our lives together and it all went so well, making the months of preparation very much worth the saving and compromises along the way.

Yes, my feet didn't hold out too well and I found myself ditching the beautiful white wedding shoes for a battered pair of black pumps once the dancing really kicked off, but I wouldn't have changed it for a minute. You know, to be dancing at all was just fantastic. I maybe should have planned ahead and bought a nice white pair to set the tone but the fact that I didn't sort of sums the day up ... laid back and comfortable!

Time's up

So, it's almost here ... and I've been so busy I've neglected my updates slightly ... I promise I'll be back when the honeymoon is over :) Until then, keep everything crossed that my feet stay well ...

All systems go

It's celebration time today ...
The feet feel great (touch wood!) and with nine days to go until the big day that's a massive deal.

Now all we have to cope with is this blasted weather.
Can I ask nicely that the snow clear up PLEASE.

And in case you didn't know, I'm getting married next week!!
Yes, I know, you haven't heard that yet ....

A weekend to remember

So, it has been a few days, but wedding details have taken over! Anyways, the hen do was, as I said before, unbelievably amazing. I think my chief bridesmaid should start giving classes on how to be a brilliant bridesmaid - I know I'll be taking tips from her if I ever get the role.

She organised a night on the West End, including a scrummy meal, Dirty Dancing live on stage and our names on the guest list of a cool club that also played cheesy music and was therefore perfect for boogie-ing on down til the wee hours. We continued the party back at the hotel with a sneaky bottle of rose and an even bigger bottle of vodka - oops!

Next day was pretty much wrote off for most of us as the hangovers started to set in but I was whisked off all the same to a very sumptuous hotel - you know, the type you would want to live in if you had the money, filled with blooming flowers, Laura Ashley style interiors and plush bathrooms - in short, beautiful.
It was here that I was treated to a champagne afternoon tea, complete with small triangular sandwiches, cup cakes, strawberries and cream and fresh, still hot, scones. The girls then raised their glasses and gave me a short toast which brought tears to my eyes and I know I've said this before, but I felt very loved.
Every one of them has been completely supportive over the past year, beyond my wildest dreams and I could never have gotten through all that MS has thrown at me without them.
The toast was a reminder that no matter what life throws at us, having friends who care is priceless.

Next on the agenda was pizza and more bubbles in our room but they weren't letting me off so lightly. They had requested I wear a pink dress and I had duly done so, while the rest of them were wearing black dresses with a hint of pink on their attire - lovely touch I thought, not too tacky, just nice. Boy was I in for a shock when 'chief' produced a bright pink feather boa, long black gloves, a 'bride-to-be' sash, 'L' plates, a mask adorned with even more pink feathers and the icing on the cake, a headband complete with pink willies! But I took it all in good humour - nothing else for it really!

They then started a round of Mr and Mrs - with a twist. They asked me questions and once I had answered they produced a lap-top with J giving his answers on a video camera. The amount of effort they had gone to was unbelievable. Thankfully we didn’t do too badly – proof that we are really made for each other J

A comedy club followed, where I hid at the back and hoped the comedians wouldn’t pick on me, and then another reserved area in the club. Again we danced til our feet hurt and I went home with a huge smile on my face.

I had braved my high heels on night one but gave them up for comfort on night two – a wise choice as my feet survived quite well! Now back home, it’s just over two weeks until the ‘big day’ – how that came around so quick I’ll never know – and I’m trying to pace myself. My feet were a bit sore on Monday but that’s because I didn’t stop all weekend, and I’ve learned a sore and sorry lesson. This weekend you’ll find me laid up watching films and taking it easy!

I blame 'brain fog'

The big hen do extravaganza - as my chief bridesmaid called it - is now officially over. Technically it was over on Sunday but with all the reminiscing and chat it sort of only feels as though it ended today!
It was one hell of a weekend - completely amazing and totally unforgettable - but not without its traumas either.

To start with, I left my handbag on the plane - with my phone and purse safely tucked away inside it. And while I said I wasn't going to mention MS through the preparations and wedding itself, I feel I sort have to here.
Reason being, I think MS is to blame! Honestly, there's a thing out there that MS people call 'brain fog' and I completely 100% believe that it is 'brain fog' that has me forgetting stuff and leaving things behind me.

Once I discovered the loss I missed a heart beat, followed by a mad dash to an airport telephone where a lady on the end said she could do nothing to help me - typical. The woman at the easyjet desk was even less helpful, with her aggressive 'arms across the chest' stance and withering look.
So, once I realised there was nothing I could do, I accepted my fate and rounded up the rest of the posse to catch the train.

A year ago this sort of fiasco would have had me reduced to a blubbering mess, frustrated at my inability to look after myself. This year, I have a new approach. I couldn't fix it and the withering lady wouldn't help, so I got on with it, not a tear to be seen. My late grandmother used to say, 'Don't cry over what money can buy' - and never before have I taken her advice so literally.

The weekend was just about to start .... and those stories will be posted later, promise.

Off to London town

Tomorrow is day one of my hen weekend .... and I can't wait. As I've said before, I have an amazing crowd of friends who are brilliant every day but I know they're pushing the boat out for me this weekend and that means SO much.

There's 19 of us in total hitting London town - I know little about what's happening because my bridesmaids (and my chief in particular - she knows who she is!) have kept it all under wraps which makes it all the more special!!

They've also taken the 'stupid feet' into consideration so hopefully I'll be able to enjoy everything without much problem. To be honest I'm going to try and completely forget about MS for a while - not just this weekend but for the next two months, through my wedding day and honeymoon - and hope that it doesn't make me remember.

Wish me luck :)

Keeping fit ... and rest too!

So, aside from everything MS related, my life is pretty hectic at the minute. Our wedding is less than five weeks away and while the majority of the organising is finished, there's still 'stuff' to be done!

As I write my intended is partying in Barcelona with a bevvy of his mates and I'm taking the chance to catch up on some rest and take it easy. It's no surprise to find that I'm holed up at my parents ... no better place to chill out.

But on a serious note, rest is something I have to take seriously. Fatigue is a symptom of MS that raises its head when you least expect, or need, it. With my own hen weekend starting on Friday and the honeymoon just over six weeks away I want to be in the best possible shape so that I can enjoy everything wedding related - and the big day itself of course :)

Thankfully, my feet are almost back to 100%. I have no difficulty walking at the minute and aside from some sensitivity they're behaving okay. I'm also going part-time at work on Monday which will be a real help in keeping any tiredness at bay.

I've also started working out at a gym. My instructor has helped devise a plan that allows me to keep off my feet for the majority of my 40 minute workout and I'm actually really enjoying the process. It's true that keeping fit is something everybody needs to consider in order to keep healthy but with MS playing a role in my life now, it's something I've decided to prioritise. After all, if I look after my body the best I can when it's well, there's a chance that I'll be better placed to keep on top of the MS in the long-term too.

Not so scary MS guy

So, today was the all-important MS specialist appointment. I was a bit anxious this morning, couldn't really eat (that'll help the diet!), felt on edge etc etc. For some unknown reason I had Mr MS guy boxed away in the scary corner, someone to be feared - but I shouldn't have worried. Yes, he was to-the-point and precise but his straightforward approach was exactly what I wanted - no bullsh**!

Again, there wasn't much more to add to what we already knew. But before we start looking at the drug options I have to have a lumbar puncture done - that's that horrible procedure where they stick a needle into my spinal cord and remove some fluid. That fluid will hold the definite, definite information they need to allow me to go a waiting list for the medication.

It's not something I'm looking forward to, but I understand the need too. Basically the drugs cost money - and whether we like it or not, money makes the world go round - so before they start anyone on them they have to be double sure that there's a need. Thankfully the puncture won't be done until after the wedding - which is now just over five weeks away - eek!

On that note, some of my family and friends took me out for dinner at the weekend, sort of a pre-hen hen do! Was great fun and I wore heels for the first time in twelve weeks - and while my feet burned just a tad, they were bearable - proof that the 'stupid feet' are getting better. Made me nice and tall again too - I've missed height :)

Positive thinking is key

In a previous post I mentioned that my attitude during all of my investigations, consequent diagnosis and every day thereafter, has been generally very positive. That's just my way.

From day one, I have never wanted the sympathy or the pity looks, but most importantly, I fully believe that your attitude can have a massive impact on how you certain situations affect your life. It would have been the easy option to feel sorry for myself, put my head in the sand and talk to no-one. Instead, I did the very opposite.

Everyone who knows me, knows I have MS. I find it helps to be open about it, then there's no lies to tell when I'm off to the hospital to see the consultant, there's no pretending to be OK when the pain is excruciating, and most importantly, my family and friends know where I'm coming from.

To say they have been supportive over the last ten months is an understatement. Some just let me rant, allowing me to get whatever it is off my chest, others listen patiently while I try desperately to explain what it is I feel on any particular day, and then there are those who allow me a weak moment, a few tears at the seeming injustice of it all.

But all of them boost me up, allow me to be me, regardless of the MS, and for that I am extremely lucky.

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.

These feet were made for walking

In addition to the continence advice, my neurologist also sent me for another MRI scan. This was completed in Sept 2009, nine months after my original scan.

Before it was completed he saw me at an outpatients clinic and seemed pleased with how I was doing. In fact, his words were simple, “If I hadn’t seen your MRI scan, I would be convinced that you were doing well, so my advice would be for you to go off, enjoy your life, plan your wedding and I’ll see you at the start of 2010.”

But, just a week or so after the MRI scan I got an unexpected appointment to go in and see him again. Naturally, this worried me. And I was right to be worried. He immediately told my fiancé and I that the MRI showed new areas of demyelination. For these to have occurred in less than nine months was a scary prospect.

So a new plan of action has been taken and I am now being referred to an MS specialist at the end of this month. Since then things have taken a downward turn.

My attitude has not changed - I’ll talk about that at a later stage - but I have suffered a few setbacks. The major one involves my feet. At the end of October they started to get a bit numb on the outside edges and it was initially so slight that I hardly even noticed, if anything my shoes sort of felt tight. But then it was very obvious.

I remember having a bit of a cry to myself, but it was more to do with what I thought was coming up ahead than the actual numbness itself. Over the course of a few weeks they did get worse and by the time Christmas came around, I could barely walk.

The numbness started to be intermingled with a burning sensation, which would then give way to a series of pins and needles. It’s a weird feeling, hard to describe and I almost find that what I’ve written doesn’t quite do it justice.

There are also moments when I touch my feet and they are ice-cold, but I can’t feel it. Then when they heat up, they are lukewarm to the touch but absolutely burning inside. At one stage the pins and needles crept right up my foot into my ankle, and the pain was hard to bear. I started hobbling about on my heels, desperately trying to keep the weight off the foot to try and minimise the pain.

It was then that I spent a whole week laid up, moving only to use the bathroom and little else.
To say I found this time hard is an understatement. It was very isolating and my mood dropped considerably. Family and friends were busy getting prepared for Christmas and I know if I had asked them to visit they would have done so but I felt guilty taking them away from busy schedules.

In the end, I made myself get dressed up and join people for dinner and a few drinks here and there. I always drove, or was driven, rarely drank alcohol and was always home before midnight - but the company and atmosphere in itself was enough to get my mood up.

By the New Year the pain had moved from an unbearable grade 10 to a more manageable grade 3. That’s where I am today.

Going every five minutes ...

Since then I have been placed under the care of a new neurologist. His approach has been much better - and because he wanted a thorough look at me, he started all of the tests from scratch.
However, in the initial stages he didn’t seem too concerned, mainly because I had no new sypmtoms as such. But he did refer me to a continence nurse which was a major help.

Those with MS will understand when I say going to the bathroom was starting to take over my life. I didn’t like going anywhere if I didn’t know where one was and long journeys had started to become a real difficulty. This is because I was going practically every hour, if not more.

Looking back, I had spoken to my GP about the frequency with which I went to the toilet, but he fobbed me off saying everyone was different and I would get used to it. But I now know that this is actually a sign of MS.

Thankfully, my appointment with the nurse has changed how I live my life. She has given me a prescribed drug that regulates the frequency with which I need to go, and to say it has given me back my freedom is not overstating the situation.

Emotionally, the bathroom issues were one of the hardest to deal with. I used to be embarrassed that I was running to the toilet so often and became paranoid that everyone was watching me go all the time.

It was even consuming me so much that my upcoming wedding day started to look like it was going to be taken over with me running to the toilet in my gorgeous gown - and it wasn’t a prospect I was looking forward too. Now, with the tablets working really well, it’s a problem I’m no longer worried about!

Getting some help

Thankfully, my uncle is a doctor - a retired one but someone who knows what he’s talking about. After calling my parents and telling them the news, he was my next point of reference. And was amazing.

Immediately, when I said the neurologist was vague, he scorned, “He was just too scared to tell you the news properly. That’s what these people are like. He’s only flown in to cover a back-log, and he has no vested interest in your long term health.”

Straight away he started thinking positively. His friend and colleague works closely with MS patients and he believes fully in the treatment of Hyperbaric Oxygen Treatment (HBOT). This sort of treatment is a controversial one in the land of MS, some patients feels it gives them a boost, others believe it does no good whatsoever.

It basicially involves sitting in a chamber (not unlike those used to help divers who fall victim to the BENDS), being decompressed to 16, 24 or 32 feet, and once the chamber is decompressed, breathing in pure oxygen through a mask.

The idea is that the decompression allows oxygen to get into the system more effectively and subsequently helps repair the nerve damage in the brain that causes MS. In my mind, there was no question about whether or not I would give it a try - it is simply pure oxygen, and even if it does me no good, it certainly won’t harm me either.

In the immediate six weeks following the inital tentative MS diagnosis I undertook 20 hours of oxygen treatment. Since then, I have tried to get at least two hours of HBOT every month, sometimes four.

Meanwhile, I asked my GP to refer me to see a more permanent neurologist based in my Trust. Going back to see the initial doctor was simply not an option.

“Is it MS? Maybe. Maybe not.”

These early posts are a background - getting to where I am today - and follow on from previous posts.

I was called back to see my neurologist - someone drafted in by my local health trust to plug the gap in neurology services. As such, he only came to the city during weekends and my first proper appointment with him was in April 2009.

Because it was a Saturday, my other half (from here on in, called J) was lazing about. He had been up early for work all week and I insisted that he stay at home. This is a reflection on just how sure I was that nothing was wrong. But when I sat in front of my neurologist, he talked around the results before tentatively coming out with, “There’s a chance that you have MS.”

As a journalist I had interviewed MS patients before, I knew what it meant and I remember switching off a bit as he continued the conversation. He was very vague. “Is it MS? Maybe. Maybe not.” But he was very clear that my MRI scan had showed up sections of demyelination in my brain - a sign of the condition.

The rest of the conversation seemed to fly by. He told me to go home, live my life and see what happened. In fact, his very words were, “Come back and see me if something happens. You know, if your foot falls off or whatever.” On reflection, his manner with me was disgraceful. I can only hope that anyone else who has the unfortunate circumstance of seeing him after me is treated with a bit more dignity. That he told a young woman, with her whole life in front of her, news with such massive consequences, and play it down so off-hand, is beyond belief.

But, there was nothing I could do but drive home and ponder the future. When I walked in the front door, my fiancé took one look at me and I burst into tears. In the few seconds it took for me to get out exactly what the consultant had I said, I think J had me dead and buried.

In all of this situation, that’s something I hold close. I was not given a death sentence.

Investigations begin

Visiting my doctor was not very helpful. Rather than focus on what I was telling him, he seemed intent on finding out if I was depressed or not. I suppose it didn’t help matters that I was sat in front of him, near breaking point and unable to voice my real concerns.

But the second collapse had really shook me up. And while I have real empathy for anyone who suffers from the horrors of depression, that wasn’t what was wrong with me.
Eventually he was convinced that I needed some further help and/or investigations done.
So, I was pencilled in for a neurology appointment.

Again, the doctor wasn’t the most helpful - which is becoming a recurring theme - but he did decide to send me off for an MRI scan.

Given that the scan wasn’t completed until January of 2009 - some six months after the second collapse - I had honestly put all thoughts of being sick to the back of my mind. Apart from feeling tired and few headaches here and there, I felt fine.

Also, in October 2008 my darling boyfriend proposed, and my thoughts had been taken over by wedding preparations.
But when the MRI scan came round it did make me think - what if there is something wrong?

Then, the women operating the MRI explained that I would be in the tunnel for around 40 minutes, with four seperate scans being taken. I counted out the scans and was relieved it was over.

However, when I was taken out she explained that I actually needed two more scans done. It worried me that this was in addition to the usual procedure - and I did wonder if there was something amiss that she felt was worth investigating further.

But told myself that if anything was REALLY amiss then my neurologist would be duty bound to tell me asap - with nothing forthcoming from him, I put my head down and got on with organising my wedding.

My feet just gave way beneath me

To make sense of where I am now, it makes sense to give some background.

I firstly collapsed at work. My feet just seemed to give way and one minute I was chatting to a colleague, the next I was on the floor. I’m not sure who was more taken aback, me or her. Once I had gotten over the mortification of collapsing in the middle of a busy news office, my boss demanded I go straight home and take a few days off. But if truth be told I felt fine seconds after I fell.

However, I had just started a new role at work, my duties were increasing by the day and I did feel exhausted. Being sensible, I took his advice and spent a few days at home making the most of being pampered. Then just a few weeks later, with work getting busier and me taking little rest, I found myself at breaking point.

I spoke to my boss again and he apologised for my workload getting beyond anyone human. As such, he told me to take it easy the next day, have a lie in and meander into work once I was up and ready. Taking him at his word I slept until I woke and decided to treat my boyfriend and I to a homemade breakfast of pancakes and syrup. And then, standing at the cooker, in charge of flipping over a pancake, I fell to the floor again. No warning, nothing.

I was literally standing there one minute and my other half was picking me up off the floor the next. It was an experience I wouldn’t like to repeat in a hurry. My abiding memory of the day was him panicking, saying over and over, “What happened?” and me unable to answer. I just couldn’t put into words the way I felt.

But I knew this, I had to get some answers.

And so it starts ...

As someone who writes for a living - in my capacity as a journalist for a local newspaper - I have toyed with the idea of setting up a blog many times. In fact, a few years ago I even contributed to one as my colleagues and I attempted to lose a few lbs after Christmas and we thought writing about our lapses into chocolate binges would help keep us away from the inevitable munchies.
Now, a few Christmases later - and probably only a few lbs lighter - I have finally bitten the bullet and decided to write a blog of my own. And it comes off the back of a more life-changing topic than losing weight.

Last year, in April 2009, I was referred to see a neurologist after I suffered from chronic headaches and collapsed a few times with little explanation. As an otherwise healthy 26 year old, I honestly thought my problems were down to stress at work and little else.
So, I was completely floored when he mentioned the possibility that I may in fact be suffering from Multiple Sclerosis.

A bigger blow he could not have thrown at me.

I’m hoping this blog gives me an outlet to vent my exasperations and rejoice in the good as I try and live my life in as positive a manner as possible - this is my account of a life coping with MS.