MS and the 'disabled' label

As someone who has MS it will probably come as no surprise to you that I am in possession of the ubiquitous blue badge. I applied for it for various reasons but the main ones include being able to have close access to shops and when my bladder is at its worst, a toilet.
When I go shopping I always plan my shopping route in advance so that I can complete all of my chores without walking too far unnecessarily or doubling back on myself - thus reducing the pain in my feet.
And it's a running joke with my mum that I know every bathroom in Derry (and I may add, every other town or city I have ever visited, thanks to my good memory for such information).
But using the blue badge is not something I enjoy or have become comfortable with.
It sound silly but I always feel that people who don't know me stare when I get out of my car looking, to them, perfectly healthy. There's no wheelchair or stick - and to many that means I'm not disabled as the badge suggests.
I guess it's an education exercise but disabled means so much more than not being able to walk unaided.
Recently I got into my car and was about to reverse out of the space when a man stood behind me waving a disabled badge. Naively I believed he simply wanted the space after me and was claiming it as his own before anyone on the busy road drove in after me.
But, as I reversed he shouted over, 'You know you're parked in a disabled space?' - with a tone that implied that he didn't feel I should be there. I instantly leaned over, waved by own badge back at him and replied, 'Yes, I have MS if you must know'.
The incident really shook me up. He was aggressive and frankly, rude. To his mind, he had seen a happy, healthy looking young woman walk up to her car with some friends and promptly drive away. He obviously hadn't bothered to check I had a badge displayed and jumped to his own, wrong, conclusions.
This sort of attitude is hard to change. And for someone like me who hates being labelled 'disabled' anyway, it just made me feel about two feet tall.
I don't expect everyone to understand what it's like to have an illness like Multiple Sclerosis but I certainly think that a touch of compassion now and again wouldn't go amiss.
As for judging me without knowing me, that's another issue altogether and one I'll talk about further another day.

Born This Way ...

... as in, the Lady Gaga song.
I can't get it out of my head this week, and Charlotte is probably sick of hearing me sing it, but it has got me thinking.
Was I born with MS mapped out in my DNA, or is it something I have had the unfortunate fate of getting later in life?
It has to be said though, with no answer forthcoming, I'm happy enough to face it head on regardless. The real question is, would I have lived my life up to diagnosis differently if I had known Multiple Sclerosis was around the corner.
Put simply, probably not. Some would think I would have looked after myself better, got lots of Vitamin D, ate less saturated fat (not because they say this helps people with MS, just because it would help my mid-rif!) and maybe drank a lot less wine - but in actual fact, if anything I would have done the opposite.
If I had known I was going to have MS at 27 I would have travelled extensively, been more spontaneous, and cared a hell of lot less about what people thought of me over the years.
Since I didn't have the benefit of hindsight I'm still pretty satisfied of how I spent my days pre-MS - laughing, dancing, drinking, all surrounded with friends and family - but most significantly, I had the fortune to meet my husband before I became 'Catherine who has MS'.
I mention this because I know some people with MS have talked about how hard it can be to meet someone post-diagnosis - telling them, when to tell them, what to tell them - and I'm so blessed to know that J fell in love with me - the woman born just the way I am now, just without the label of MS.
After all, I'm still laughing, dancing and drinking with my family and friends - nothing has fundamentally changed, I just face the world a little bit differently.

Nobody's perfect

I've had a tough few weeks. Generally, I give the appearance of someone who is coping very well. I'm back at work one day a week to ease myself back into the madness that is local newspapers, there are washed and ironed clothes in everyone's cupboards, the floors are mopped and we are well fed.
But inside I'm struggling.
And the reason is very simple. I expect too much of myself.
Everything may be done but at what cost. Today I think it may be my sanity.
Because my brain is on overload. You know those days when you your mind is on a constant loop ... well that's been me for the last fortnight. And quite frankly I'm doing my own head in!
It's easy fixed - I just need to use a diary better - but instead I've been running everything that needs done over in my head ... again, and again, and again!
The situation hasn't been helped by the fact that I haven't been great MS wise (feet playing up, horrible fatigue, flu-like pains after injections) and Charlotte has been up teething leaving me with unbroken sleep and a body that simply doesn't want to do what my mind is telling it.
I'm also pushing myself physically. This weekend I'm off to Sligo for one of my best friends' hen night - which I wouldn't miss for the world - but it involves a two hour drive which I know will drain me. So as a sacrifice I'll just drink less champagne :)

Then next weekend we're off to Scotland to visit my family - in what will be our first family holiday. And I am really looking forward to it but the organisation required is sort of freaking me out.
So, in order to redress the balance the solution seems obvious - I need to chill out!
I also need to remember that I'm not always going to get everything right, done on time or perfectly - but that that's ok. After all, no-one gets it right 100% of the time.

MS is not a life sentence

As well as writing my own piece last month for the local paper about life with MS my colleague Andrew Quinn also came to speak to me on a separate occasion so he could also write about my diagnosis and life thereafter. And I have to say it was a strange experience to be on the other side of the writing process. But he did a brilliant job, capturing everything that I wanted to get across perfectly - and being very complementary, which also helps! So, here it is in its entirety for anyone who missed it - including the brilliant photo Andy took to accompany the article.

At first glance Catherine Doran cuts the appearance of a woman who knows what it is to feel deliriously happy. Catherine, 29, married her now husband Joe Doran last March and last December the newly weds celebrated the birth of their first child, a baby girl, called Charlotte.
Like every other bride-to-be Catherine relished organising her big day and when it finally arrived it did not disappoint.
“Marrying Joe and when Charlotte was born were the two happiest days of my life,” recalls Catherine tearfully. “I was so emotional when myself and Joe exchanged our wedding vows - especially when we said ‘in sickness and in health’.”
The reason this part of the wedding ceremony resonated with Catherine was because one year earlier she had been diagnosed with Multiple sclerosis (MS).
“When you think about it, most young couples are in good health when they get married,” says Catherine. “I was diagnosed with MS a year before I got married so when Joe was reciting the ‘in sickness and in health’ part of the vows I became very emotional.”
Catherine and Joe celebrated their wedding day at the An Grainan Hotel, Co. Donegal just outside Derry. Only close friends and family were aware that Catherine had MS but her husband Joe decided to talk about Catherine’s condition openly during his wedding speech.
“There wasn’t a dry eye in the house that day,” says Catherine through a mixture of smiles and tears. “Joe’s speech was the most wonderful thing I’d ever heard and when he told everyone in the room that I had MS. Joe’s speech made everything feel so right that day - it meant so much to me.”
Adversity is something that Catherine has become all too familiar since her diagnosis but still she has managed to experience the things that most young women aspire towards. Since finding out that she had MS, Catherine has had her wedding day, given birth to Charlotte and both her and Joe bought a wonderful new home on the outskirts of Derry.
Catherine is currently enjoying her maternity leave from her job as a reporter for The Derry Journal; she has used her time away from work extremely well; she keeps an online account of what life is like for her through her blog titled ‘A life with MS’. Catherine is also an active member of the Foyle branch of the MS Society and on her Twitter profile she warns all who ‘follow’ to ‘expect MS awareness tweets’.
“I knew virtually nothing about MS before I was diagnosed but now I am an expert in it,” she smiles. “I want to stress a very serious point - a life with MS is not a life sentence. I might be ill but everyday I am determined to live as normal a life as possible.”
Catherine first started to notice that something was wrong in 2008. Various symptoms manifested and after collapsing both at work and at home Catherine was referred to a Neurologist Consultant by her GP.
“In the beginning I started to experience what many MS sufferers experience and that is problem with their bladder. All of a sudden I was having to go the toilet a lot more than usual. It would happen very suddenly - it became a serious issue for me so much so that when I was going out I had to know where the nearest toilets were.
“I was working in Donegal at the time and I remember on the way to work one day I had to stop and use the toilet seven times along the way. There’s not a toilet on the way Letterkenny that I don’t know about,” she laughs.
One of the most common symptoms experience by many MS sufferers is feet pains. Catherine says that her doctor asks her, on a scale of one to ten, how painful her feet are. She explained that since her diagnosis and with the help of painkillers the pain in her feet is never below three.
“MS patients suffer terribly from fatigue,” she explains. “I found that I put a lot of pressure on my feet they would be very painful a few days later. It took getting used to and thankfully, fatigue hasn’t been a major issue for me for the last four or five months.”
After collapsing twice Catherine went to see her GP and was then sent to have an MRI scan in Coleraine.
“Anyone who knows me will tell you how fiercely independent I am - so much so that I drove myself to Coleraine for my scan. I thought it was just routine - although I felt unwell, I was still able to work and get on with the day-to-day things.”
Catherine met with the consultant a few weeks after her scan to find out her results.
“I couldn’t believe it,” she says. “I asked him for my results and he said that he thought that I might have MS. I didn’t know what to say - I lost my voice and he basically threw his hands in the air signalling that there was nothing they could do for me.

After the initial shock of her MS diagnosis Catherine returned to work, got married and gave birth to Charlotte. Despite her admirable courage and stoicism she said that her first ever relapse during the Christmas of 2009 was one of the most lonely periods of her life.
“I was so scared when I went through the first relapse. I spent a lot of time along by myself and it’s not nice sometimes when you’re alone with your thoughts. However, I have a very close family and circle of friends - along with Joe they helped and supported me. Without them I don’t think I’d be in the position I’m in today - they were all just so supportive.”
An example of just how determined Catherine was to limit the affect her condition would have on her life occurred when she and her friends went to London for her hen party in February 2010.
“It was the month before my wedding and although my maid of honour had organised the trip around my condition I was hell bent on wearing high heels on the first night of my hen party.”
This week was MS Awareness Week. Asked what her message would be to people with the condition, Catherine pondered for a few seconds, took a deep breath and said:
“Stay positive because it’s only way to rationalise what’s going on,” she says honestly. “I can only speak for myself but I found that by staying positive it helped me through my toughest days. I am very lucky that I have a husband like Joe and that I have such an amazing family but people with MS have to know that the help and support is out there.
“The support that I got from the healthcare professional in the NHS was just amazing - the MS specialist nurses have been there for me every step of the way and Terry from the Foyle branch of the MS Society has just been second to none.”
Catherine has spent the last few years highlighting MS and she urges everyone with the condition to sign up to the national register. She holds out hope that someday a cure will be available but at the minute she is setting her sights on goals closer to home.
“I definitely want Charlotte to have a few brother and sisters. I’ve always wanted a big family and although I have to be realistic I am not going to let my condition stop me from giving my family the best possible life.”

Sign up now!

To mark MS Week the MS Society are urging everyone who has MS to sign up to the MS Register. It aims to track everyone across the UK who has the condition, thus giving health providers, and the government, a better idea of the numbers who have MS and how it affects their mental wellbeing and daily life in general.

I signed up 15 minutes ago and it honestly takes ten minutes to do. It's such a fantastic idea I am aghast that no-one has thought of it before. After all, if the health trusts and government don't realise the extent to which MS infiltrates every corner of this small country then they have no idea of the resources and funds needed to cope with it.

So please, if you're an MSer living in the UK then take ten minutes to fill it in ... then we can all say we did our best to let them that hold the purse strings know just how big of an impact MS is having on our population.

And to make it easy I'll even give you the website address ... http://www.ukmsregister.org/ Now go do your bit (said with a bright smile and not a bossy tone)!

Raising MS awareness

** As this is MS Awareness Week I have written a short piece for the Derry Journal - my employer! It aims to educate readers about the condition and is also a general oversight of my MS story. **

Aged just 27, I was diagnosed with Multiple Sclerosis just under a year before my wedding day. It was a shock revelation because while I hadn't been completely well in the months beforehand, I wasn't really unwell either. Niggly health issues were definitely there but I never believed for one second that I had an illness that's life-changing and currently incurable.
Headaches were recurring at a frequently high level, I had constant black shadows under my eyes and was constantly running to the bathroom. I had also collapsed twice for no apparent reason and suffered various bouts of vertigo so in retrospect it seems obvious that there was something inherently wrong.
All of these little things were in fact symptoms of MS. Isolated as one thing after another they seem innocuous but gathered together they, and a confirming MRI scan, pointed to nothing else.
Two years later I pretty much know all there is to know about MS, especially the form which I have, relapsing-remitting. This means exactly what it says on the tin in that it comes and goes. I have had one serious relapse, affecting my feet, and they continue to blow hot and cold. I can walk but sometimes this is under serious pain, others days they just tingle, and on others they are simply uncomfortable.
Just two months ago I started on an injectable medication called beta-interferon. This means I have to inject myself at home three times a week, which initially seemed like a huge deal but is already feeling very normal and part of the routine. It won't 'fix' me but it is supposed to reduce the number of relapses I will have and their severity. The MS nurses, Fiona and Carole, based in Spruce House at Altnagelvin Hospital, have been a godsend throughout this process. Their expert help and information is quite simply invaluable.
The last 24 months have also been filled with other milestones for my husband Joe and I. Our wedding day went ahead as planned, as did our brilliant honeymoon halfway around the world to Hong Kong, Bali and Singapore, we moved house a year ago and six months ago I gave birth to our first baby, Charlotte.
Choosing to have a family was a huge deal, but only in the respect that it's a huge responsibility - for anyone. The fact that I have MS didn't come into it, apart from delaying the beta-interferon process until Charlotte arrived safely.
If anything my life has been more happy since my diagnosis. My outlook on what lies ahead is also more positive than negative. It's true that a life with MS is inevitably unpredictable. Relapses can happen at any time, last for any length of time and can prove disabling. However, I firmly believe that no-one can truly plan ahead and I am no different in that respect.
This week, throughout MS Awareness Week, the MS Society will be launching a new website and I will be featured across the new content in a series of videos. These were filmed the day before I gave birth to Charlotte but I felt so strongly about letting others with MS know that it's not the worst thing that can happen to you, that I filmed on through the early twinges of labour! It was a brilliant experience and I truly hope that anyone newly diagnosed with watch them and see that life most certainly does go on.
A fellow MS-er made a brilliant point last week when she told me 'it isn't the cards you're dealt with that matters, it's how you play your hand'. And let me tell you, I'm playing my hand like I have four aces up my sleeve!

MS nurses are vital

Regular check-ups with the neurologist are part and parcel of having MS. I talked about the last visit here and it's pretty clear that I found the entire process unhelpful. But I had my first appointment post-pregnancy last week and because I am no longer with child I was able to get some help.

Most significantly, I have been given tablets to help with the neuropathic pain I continually have in my feet, especially the right one.

These, I have been told, can make you drowsy so I have been increasing my daily dose gradually and so far, just a week in, they seem to be helping. In saying that I have also been trying very hard to take things a bit easier and the change of pace isn't a bad thing either.

I have also been attending a series of talks that have set up by my local health trust for those newly diagnosed in the past two years. They have been really helpful so far and are proof that a dedicated MS team - in this case the Trust's two dedicated MS nurses - are worth their weight in gold.

There is talk that the current government may look to save money by removing funding for specialist nurses and I cannot stress enough how much of a mistake this would be. The MS nurses I have contact with have been a major source of support and information. Ultimately I believe that they save the NHS money in the long run because they help MS patients manage the condition before it gets so bad that they are admitted for treatment.

My aim over the next week is to write to my local MP and MLA's in an attempt to make them realise how vital MS nurses are - because no-one knows until they have to personally use them.