Sunday, 14 September 2014

A year down ...

It's hard to believe but this time last year I was just about to embark on my Copaxone journey.
It was one I faced with trepidation but also filled with hope.
Having already tried Rebif and Avonex I was very aware that Copaxone was sort of my last throw of the dice, and felt as though I really was putting all of my eggs in one basket.
Having to inject every night was always something I worried about but 12 months later I can honestly say it doesn't bother me anywhere near as much as I expected.
Yes, I still avoid my legs (they bruise too easily and the pain isn't great either!) and while I use my arms because it helps with rotating my injection sites, I still wince every time the needle pierces my skin.
Generally each injection is over within ten seconds.
I've even been known to take it with me to a restaurant, nip to the toilets and inject quickly before anyone even notices I've gone.
After all this time I still have days were I forget to take it, despite my alarm buzzing at 7.30pm. 
Sometimes it's the day after before the injection site annoys me, as they can get incredibly itchy. Which isn't a great look at work as I surreptitiously try to scratch my stomach.
Talking of my stomach, it's my favourite place to inject. I'm (un)lucky enough to still have some baby weight lingering on my middle and as a result I hardy feel the needle going in.
I desperately want to lose my 'mum tum' but when my diet gets side-tracked I always console myself with the knowledge that my injections will at least not hurt so much.
But on the whole I've got used to it. 
I've probably only missed about 5 or 6 doses in a whole year so by my calculation that's 360 injections. Each one loaded with a medication I honestly believe is working for me.
I have no major side effects, especially compared to Rebif which left me groggy for half the week. 
Crucially I have had no significant relapse in the last year.
Don't get me wrong, I've had some exacerbation of old symptoms, and the fatigue and pain are things I am unlikely to ever live without. 
But NO relapses is a milestone to be celebrated. I'll take that. 

Monday, 28 April 2014

My MS Life speech about Pregnancy and MS

On Saturday I had the privilege of speaking at the MS Society's biggest information conference for people with MS - MS Life in Manchester. It was a very positive experience and one which I hoped would allieve some of the fears others with MS might have about having children after a diagnosis. I've had some lovely feedback since so here's the speech for anyone who wasn't there. At the conference I then answered some questions so if you have any please do ask away!

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I know we're here to talk about pregnancy and MS but I think it might help if I gave some of my background too. I was diagnosed five years ago, just weeks before I turned 27.
My boyfriend had proposed six months earlier and, now my fiancĂ©, together were planning our wedding which was organised for a year later. 
I knew about MS. In my job as a journalist I had covered MS Week countless times and met many people affected by it. But it wasn't on my radar.
I had been feeling out of sorts, collapsed a few times, ran to the bathroom at every opportunity ... But I never thought they were all linked. 
So it was a huge shock to be diagnosed but I also felt a strange sense of relief because at least now I could get help and there was a label for my problems.
That first year I spent time coming to terms with the diagnosis, I told my family and friends and got strength from their support. I constantly told anyone who would listen that MS would not get the better of me.
My wedding was a welcome distraction. There was too much to do to be worried about MS. But then just weeks before the big day, in between my hen do and final dress fittings, I had an appointment with the neurologist.
He was fairly blunt. My MRI had shown a significant increase in lesions, starting a Disease Modifying Therapy was not an option but instead something I needed to start immediately.
Then he declared, but if you want kids you can't be on DMDs while trying to conceive or during the pregnancy. 
Basically we had a choice, babies or DMDs.
Our wedding was four weeks away. Our whole lives ahead of us. And we wanted a family. The question now was when? 
My husband and I didn't rush home to read the information or go on the MS Society forums, instead we made the decision based on what we wanted to do, just like any other couple.
I didn't want MS to cloud our judgement.
Thankfully, it didn't and on our return from our honeymoon in the Far East I was already pregnant.
Charlotte was born in November 2010 and her sister Lucy was born in July last year.
It's sometimes hard to believe that five years after that diagnosis I am a wife and a mum of two. Having my girls will always be the best decision I have ever made.

But I would be lying if I said MS didn't impact on my life or my pregnancies and labours.
Generally people with MS are told that you can feel much better during pregnancy, with the chance of relapse increasing after the birth. 
With Charlotte I didn't relapse during pregnancy but I had had some sensory issues in the run-up to my wedding and they got slightly worse rather than better, but I learnt to live with them. 
My labour was fairly straightforward and I was able to give birth naturally.
I had a support team in the form of my husband, mum and extended family. That's essential, but I would say that to any new mum not just a mum with MS.
But I did have a mild relapse in those early months, my legs constantly felt heavy, and the pain in my feet made them very sore to walk on.
And the DMDs loomed in my mind - just four months after having Charlotte I started Rebif.
In 2012 I had two relapses in quick succession and they worried me like they hadn't before. I wanted more children and I worried that if I left it too long then relapses may start to impact on my life too much and I would put off having any more. 
So my husband and I decided to try for baby number two.
And on Charlotte's second birthday I was delighted to tell our family that our second was on the way. Lucy's pregnancy went well. I felt great MS wise and it was merely the normal pregnancy aches and pains that bothered me, tiredness, sickness, nausea, sciatica. 
Again my labour went ok. Unfortunately I had to have an emergency c-section but that had nothing to do with MS. My midwives knew I had it but it wasn't a major concern as I was on my feet and had no mobility issues.
Lucy is now almost 10 months old and I have been back on a DMD, this time Copaxone, since last October. I haven't had a significant relapse since 2012 and medication is keeping the nerve pain at bay and controlling my bladder issues. 

People ask if it was a difficult decision to have my children knowing I had MS, and honestly, the answer is no. Yes, I know that MS is unpredictable and I do not know what lies ahead, but does anybody think ahead when they have a family? Of course not, you live for the here and now. I'm biased but my girls are amazing, and I cannot imagine my life without them. There are days when it's tough going and two under the age of four is hard work. But that's the case for every mum, not just me. 

Friday, 25 April 2014

Stop and enjoy the moment

This blog is so desperately unloved that I'm going to pledge to write at least once a week for the next ten weeks ... the lack of posts over the last few months are very simple to explain - Charlotte and Lucy! I honestly never get two minutes. I knew two kids would be hard work but my goodness it's ten times harder than I expected! 


Having Lucy has definitely been one of my best decisions in life. She is a ray of sunshine and her big sister adores her. I worried before I had her that Charlotte might be jealous, but that definitely hasn't been the case. If anything she is over protective. 

MS wise things have been quiet and that also accounts for my lack of updates. I always live life to the max when I'm well and that often means that I burn myself out during the day and then when night-time and my regular blogging time arrives, I'm fit for nothing. I don't regret that for one minute. MS is so unpredictable that I always grab the good days with both hands and treasure them. 

I've loved being well for Lucy's start in life, there's nothing better than being able to bath your own baby, to skip around the garden with your children, to organise and run a home without any major help. They are all things many take for granted but over the last ten months I have found myself stopping and taking in the joy around me, stamping the memories into my mind and being grateful for the chance the enjoy them. 

There have been days when I've begged for just half an hour of peace, but I always stop myself from feeling sorry for myself and remembered that my children will not be young for long and I may not always be well to enjoy them. 

That said, I'm currently sitting in an airport, on my way to MS Life - a conference organised by the MS Society - and I'll be away for three whole days. It's going to be busy as I'm also squeezing in a visit to an old uni friend who I haven't seen in years, as well as meeting my nephew William for the first time - and I'm truly relishing the thought of not being woken at 6.30am for a few mornings! I'm giving a talk at the conference about Pregnancy and MS so I'm slightly nervous but looking forward to telling others with MS that having a family is very much a possibility. I'll post my speech here next week so anybody who doesn't catch me there can read it here.

Until next week ... look after yourself, be kind to others and live life as if today is your last. As always, I appreciate your comments and I'm on twitter too - @catdoran

Thursday, 3 October 2013

The Copaxone journey starts here

Yesterday I had my usual Wednesday morning of peace. This occurs when my aunt takes my two girls out to a local playgroup session and I manage to relax without having the baby monitor attached to my side, or a toddler asking repeatedly for sweets (until I inevitably give in, just for a bit of peace!) 
But this week's Wednesday wasn't the usual. Instead I shopped a bit, spending money on the girls again, and lost the first hour trying not to think about the second.
It involved a trip to the local hospital to see my MS nurse Fiona, where she was all set up with my Copaxone start-up kit.
A lovely rucksack was presented to me, inside of which was the myriad of accessories that go with taking the medication.
These include a sharps box for the discarded needles; a mini sharps box for going on holidays with; two fancy pouches to keep the pre-filled syringes in, marked out with the days of the week; two gel packs for heating or cooling as I see fit; two auto-injectors; an injection diary; a DVD on the process and an instruction manual of sorts.
And sitting on the desk, one pre-filled syringe all ready for me to inject.
After a quick chat it was time to get started.
There are nine injection points available to me - two thighs, two arms, two bumcheeks and three areas below and to either side of my belly button.
I decided to start on my bumcheeks as I figured it would be a difficult enough spot to get to on my own and having some instruction from Fiona would only be a good thing.
And it wasn't too bad. The actual injection was easy enough in the end and I'm already preferring doing it myself instead of using an auto-injector which I've had previously. 
It gives you more control and it was over in seconds. The only part that was hard going is the sting afterwards. It starts off as a tiny nip, growing into a serious enough sting but a few deep breaths and I was out the other side.
A red rash not unlike a nettle sting did appear after but it lasted about two hours at most and I was fine for the rest of the day.
It's some difference to Rebif and Avonex, both of which left me feeling groggy and as though I had the flu constantly.
I'm hoping to do my injections in the evenings from now on so will be giving myself the second dose tonight. Wish me luck! 

Monday, 30 September 2013

And so it begins ....again

Wednesday heralds the start of my new treatment, Copaxone.
As mentioned in the previous post, this is a daily injection so it will inevitably impact on my life a touch more than previous medications.
However, I am embracing the routine and staying positive as to the rewards it should bring.
I would be lying if I said I wasn't nervous because of course I am. It will take a few days or weeks to master the art of the injection, and then there's also the feeling that this is all that is left for me to try at the minute.
There are other options licensed for use in the UK but they are mainly kept for those who relapse more than I currently do, or as a last line of resort once these initial DMD's have been tried with no effect.
So it's sort of like I'm putting all my eggs in one basket and hoping with all my might that none of them break.
It can feel sometimes that my body is already breaking. 
Small cracks are appearing on the surface. 
My upper torso currently has no feeling, I've mentioned the dead right arm before and of course the usual fatigue, pain and bladder problems have been well documented.
But I can cope with those small ailments, they have seeped into my everyday life with such ease that I am carrying them without realising.
It's mad to think that I am now used to chronic pain. It's crazy to know how willing the human body and mind can be to taking extra burdens onboard.
But I am proof that this is the case. 
Now I want to see if I can stop those cracks from opening new wounds.
I have to hope that Copaxone is that sticking plaster, for it seems that there is no healing cure just yet.

Wednesday, 25 September 2013

Focused and hopeful

Lots has been happening recently so I'm going to start with the good stuff. 
Firstly, I went along to the MS information day organised by MS Society Northern Ireland at Titanic Belfast (I'm pictured below on the replica staircase from the ship) - it was a really well put together day, with a hopeful and refreshing talk about research. So much is going on, most of which is funded by the MS Society, and I left feeling that a cure is actually in sight, and possible within my lifetime. 
That blows my mind.
To think that someone somewhere is working on a thought and idea that is going to give people like me a chance to live a life without MS. Incredible.

This day was also really helpful for my mum and aunt, who went with me, and left with a better understanding of the illness. I have been pondering whether I really want to start back on disease-modifying therapies (DMT's) given that they involve injections, again.
I also suffered so much from side effects when taking the last ones that I'm nervous about how the new ones may affect me.
But the research talk made it very clear that treatment of this sort is essential. 
It's simply not an option or something I should be pondering over.
My mum has been, justifiably, worried about me starting again but the talk made her see that I need to start sooner rather than later.
It helps so much when those closest to me understand the process and the decisions I am taking.

And that leads me very well onto the bad stuff.
When I say bad it's not really awful, it's just not lovely either! In short I will be starting back on DMT's next week. 
I've chosen to stay clear of beta-interferons and all of their horrible side effects and instead will be starting on Copaxone. 
The reason I didn't go on it in the first place is that it's a daily injection and that will inevitably impact on my life slightly more than the ones that are only 3 times or once a week.
But it has no side effects bar some redness and irritation around the injection site and I'm hoping I can cope with that quite well.

I've also been suffering with a good bit of pain. My legs in particular ache constantly and my right arm feels as though someone has punched me very hard over and over again. But I am walking fine despite the pain and generally getting on with a hectic life now I have two little ones to look after! 
It's lovely to have people tell me I look so well just 12 weeks after having Lucy but as I always say, 'Never judge a book by its cover'. 
Multiple Sclerosis is frustrating in this way in that most symptoms are invisible and trying to get people understanding the condition can be quite difficult.
I hope if you're reading this that you are slightly better informed :)

As ever, I will try my best to answer any questions so please feel free to comment - or connect with me on Twitter @catdoran

Sunday, 1 September 2013

Social media support

When I was first diagnosed I trawled the Internet to find people like me. I wanted to hear about young women who had lived a full and happy life despite the trials and tribulations of Multiple Sclerosis.
But I found it incredibly difficult to find an honest account of 'real' life following a diagnosis. It was really frustrating, especially as a journalist who spends most of my working life telling the tales of others. It was this lack of proper stories that led me to start this blog.
In the years since, Twitter and Facebook have become a part of everyday life and thankfully social media has introduced me to many others like me.
There have been times when I have felt down; demoralised - and all it has taken is a short tweet and within minutes there is support from a whole host of my followers.
Not just those with MS, but people who have interacted with me because of my children, or because of my work.
Their responses and words have comforted, reassured and encouraged me at various points, and for that I am always thankful.
To some extent I would like to think that these virtual 'friends' are also people with whom I would meet for a coffee and a chat if they lived nearby.
There are too many to name but the list is fairly extensive.
However, today I want to mention one in particular. She tweets under the name @innocentcharmer. But her real name is Kara. She is married to Ashley and they have three beautiful children, Grayson, Addison and Deacon.
We connected firstly because of our kids. Addison is a few months younger than Charlotte and Deacon was born just a week before Lucy.
However, we also have MS in common because her late grandfather had the condition and passed away when Kara was just two months old.
Kara is an incredibly inspirational woman. Her eldest son Grayson has a myriad of health problems yet no medical team can say exactly what it is he has. In essence he has a Syndrome Without A Name (SWAN). 
Young people like Grayson are few and far between; he is essentially one in a million.
As a result Kara & her husband battle on a daily basis to get access to the support and equipment he so desperately needs.
Last year they decided to raise funds themselves for equipment he needs, as well as the charity SWAN UK, by holding a huge fun day in his name. 
It has now become an annual event. But this year Kara touched my heart when she got in touch to say that this year's fun day would also have MS Society UK as a recipient of some of the monies raised, despite the fact that they desperately need to purchase Grayson a walker which the NHS will not provide for.
She has told me since that she relayed my story and circumstances to those who came to support Grayson, and many of them sent messages of support.
Tomorrow, on Facebook, Kara is hosting an auction to raise further funds for this year's pot - and it would be amazing if you would take five minutes, look at the prizes and if something takes your fancy, place a bid.
Naturally the highest bidder wins and every penny is going to brilliant causes.
Stories like hers, and the online support I get from people like Kara, are what make the new world of social media so fantastic.

If you want to connect with me on Twitter please pop over and say hello - @catdoran