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)!
Tuesday, 24 May 2011
Monday, 23 May 2011
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!
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!
Wednesday, 18 May 2011
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.
Saturday, 7 May 2011
Fifteen minutes of fame
MS Week for 2011 will get off to a start in just over two weeks - from Monday 23rd-Sunday 29th May - and this year the MS Society has undertaken a campaign to 'Get MS on the map'. As part of that campaign they are setting up video booths across the country where MS patients can tell their story. These stories will then be uploaded to a website - www.mapms.org.uk - and the idea is simple, share your story and let people know how we cope and live with MS.
Now, I've gone one further - the day on which I went into labour with Charlotte two lovely film-makers from the MS Society travelled over from London to film me for a series of pieces which will be integrated into the MS Society website. Initially I was to speak about being newly diagnosed and how I coped with the news. But because I was pregnant I also spoke a little about my decision to have children and how the pregnancy had gone.
Those videos will go live during MS Week - and I'll let you know where you can see them then. But for now, some of the material they filmed has been used in the campaign video for the Map MS website and I've posted it below if you want to watch!
Can I just put a little disclaimer - put it down to vanity - but my waters literally broke three hours after they left so I'm VERY pregnant looking so please excuse the bloated look I'm sporting :)
Tuesday, 3 May 2011
A day in the life
Life has definitely changed now Charlotte is here so here's how my day looks at the minute.
Charlotte used to sleep until 7am but she's been waking at 6am this week so I'm hoping this early start doesn't become a regular occurrence - that hour makes a difference like you wouldn't believe.
Then it's a bottle and nappy change for the wee lady before I take my medications and a cup of Earl Grey. Tea is a big part of Northern Irish life but I hate the regular stuff, especially brewed to within an inch of its life. I just pour over the water, take out the teabag immediately and drink while it's still hot. Although I have been known to take a cup that's cooled down to freezing while Charlotte takes priority!
A wash is thrown in the machine, the place tidied round and I'll sit watching the breakfast news, always on BBC1, for an hour or so while I wake up proper. And despite my husband working for local BBC radio I rarely switch it on, I'm more of a TV kind of gal. He usually gets home for a break around 10am so I'll make him his breakfast and then pop Charlotte down for one of her legendary cat-naps - she sleeps for 40 mins if I'm lucky, it's normally 20.
I find time somewhere along the way to send a few tweets, usually about 4 a day although this number does vary - some days it's 20, others I write none at all, depends if the chat is interesting enough!
Usually I plan a trip out of the house, even just for coffee with friends or a walk in the park - anything to get out for an hour otherwise I feel like I've done nothing with my day. The activity will depend on my energy levels and whether my feet are painful or not. In recent months I've had to admit that taking it easy is no bad thing either so if I think I'm better staying at home I'll invite someone round - I love company.
Joe's home mid-afternoon and we have some family time, playing with Charlotte, laughing at her little expressions and marvelling over how quickly her personality is developing.
Dinner is something homemade, we rarely eat takeaways or ready meals, and I make the majority of Charlotte's meals from scratch too. I do buy organic fruit purees because to be honest, they're 100% fruit and if I was to buy fresh fruit and puree it myself it wouldn't only take forever but cost a fortune too - so while I like her to eat well I'm not stupid, sometimes convenience is just as good.
Her bedtime is around 7pm and she's usually no bother so our evenings are our own. Once she's down I take an hour to sort bits and pieces out, maybe do a spot of ironing, which is my least favourite household chore so I keep on top of it rather than give myself a huge pile!
Then Joe and I will settle down to read the papers or watch a spot of TV. I'm loving Sky+ because we can save the series we want to watch together for when Charlotte sleeps. Although the new Sky Atlantic channel has us spoiled at the minute so we switch between Boardwalk Empire, the Sopranos or Game of Thrones. If it's a weekend night we'll have a glass of wine and chill out.
Three times a week I inject my DMD's so I get out my little record book and double check I'm rotating my sites properly. Then I inject before I have too much time to think about it and it's bed for 11pm latest.
Monday, 2 May 2011
Fabulous friendship
I read somewhere recently that you will have around 50 acquaintances in your life but will only count five of them as true friends. I have a sense that this is very true but I must also be a very lucky person because I can honestly say, hand on heart, that I have more than five people who I would trust with my deepest secrets and hopes.
But it's also true that there's probably only three who I would ring at 3am if I needed a chat, or more likely, a shoulder to cry on. In recent years the need for middle of the night hand-holding has greatly diminished - mainly because my poor husband puts up with most of my moaning and groaning!
However, while my family are generally fantastic it's also true that friends are the family we choose for ourselves. And in recent years my friends have been a major source of support. They know when I want to talk about my MS - which isn't very often - and when not to ask. Lately, they are also the ones whom I love meeting for a coffee or dinner, leaving Charlotte with her dad, so that I don't forget who I am besides being a mum.
So, tonight's post is a big shout out to 'my girls' - you know who you are - thank you for being there, and thank you for letting me be me.
But it's also true that there's probably only three who I would ring at 3am if I needed a chat, or more likely, a shoulder to cry on. In recent years the need for middle of the night hand-holding has greatly diminished - mainly because my poor husband puts up with most of my moaning and groaning!
However, while my family are generally fantastic it's also true that friends are the family we choose for ourselves. And in recent years my friends have been a major source of support. They know when I want to talk about my MS - which isn't very often - and when not to ask. Lately, they are also the ones whom I love meeting for a coffee or dinner, leaving Charlotte with her dad, so that I don't forget who I am besides being a mum.
So, tonight's post is a big shout out to 'my girls' - you know who you are - thank you for being there, and thank you for letting me be me.
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