As part of MS Awareness Week 2012, the team over at the MS Society have put together a series of three videos.
They are an attempt at trying to explain to people exactly what it is like to live with the illness. I personally identify with the 'Wellie challenge' one. But all three are a brilliant interpretation of how MS can impact on a person's life.
I constantly try to educate those around me about Multiple Sclerosis. Although it can be hard to not sound 'moaning', or repetitive.
And believe me, there are days when I sound like a moaner to myself, never mind those listening to me.
But in recent times I have found I can 'give off' for a few minutes, shed a quick tear, and then move on pretty quickly. It's my way of coping. Get it off my chest and then talk about something else.
Anyway, if you have five minutes, you can watch all three of the videos over at www.msfightback.org.uk.
Tuesday, 1 May 2012
Monday, 30 April 2012
Turning 30
Life has been busy since I last posted. The baby is now most definitely a toddler, the husband is still long-suffering and I have entered into a new decade, having celebrated my 30th birthday earlier this month. And when I say celebrated, I mean celebrated.
My mum and I cooked for three days straight, 72 cupcakes were made and a live five-piece band set themselves up in my house. The party was a late one (4am finish!) and I had all of my friends and family helping me sink the sparkling wine.
All in all, I had a ball. Which is what turning 30 should be about. Except I spent the next two weeks recovering. Apparently my husband kept telling people, as a bopped about the make-shift dance floor in our conservatory, that I would be 'good for nothing' once the hangover wore off. And he, as he always is, was right.
The bottom line is simple. I am not fit to party like I did when I was 21 (and those were the days when I REALLY partied!) Yes, age and motherhood has taken its toll. But multiple sclerosis is the main culprit in keeping this good girl down.
My legs haven't been the same since, the pain levels have ratcheted up, not a notch but twenty, and I am starting to understand my own limitations. Tough and all as that is to admit. The truth is that I need to start taking life just a wee bit easier.
But, in light of this revelation, the question remains ... 'Would I celebrate my 30th any differently, given the second chance?' And of course the answer is easy ... Of course not! I've always said that I would LIVE my life following diagnosis, and I would like to think I'm doing just that.
My mum and I cooked for three days straight, 72 cupcakes were made and a live five-piece band set themselves up in my house. The party was a late one (4am finish!) and I had all of my friends and family helping me sink the sparkling wine.
All in all, I had a ball. Which is what turning 30 should be about. Except I spent the next two weeks recovering. Apparently my husband kept telling people, as a bopped about the make-shift dance floor in our conservatory, that I would be 'good for nothing' once the hangover wore off. And he, as he always is, was right.
The bottom line is simple. I am not fit to party like I did when I was 21 (and those were the days when I REALLY partied!) Yes, age and motherhood has taken its toll. But multiple sclerosis is the main culprit in keeping this good girl down.
My legs haven't been the same since, the pain levels have ratcheted up, not a notch but twenty, and I am starting to understand my own limitations. Tough and all as that is to admit. The truth is that I need to start taking life just a wee bit easier.
But, in light of this revelation, the question remains ... 'Would I celebrate my 30th any differently, given the second chance?' And of course the answer is easy ... Of course not! I've always said that I would LIVE my life following diagnosis, and I would like to think I'm doing just that.
Sunday, 26 February 2012
Where does the time go?
It's been a month since I last blogged - and it feels like a day. The last few weeks have been so absolutely manic that time has simply passed me by.
And in that time I'm pleased to report that my body has thankfully being playing ball and I seem to be out the other side of the January relapse.
I've also had a review appointment with my consultant neurologist and he was generally positive.
Neurology appointments are funny things, especially for MS patients. The truth is that many of us will keep abreast of research news. We also keep in touch online, and I have found that by the time I see anyone in the medical profession I have already been assured by other MS'ers that what I am going through is normal ... or not!
And this was the case for this appointment, as he did not tell me anything that I didn't really already know.
However, my husband asked if he could give us any sort of idea as to the severity of my MS. He, of course, would not do so. He, and I, both know that the nature of MS is too uncertain for him to hazard a guess at what the future holds.
He did say that I have certain factors on my side. One, I am a woman. Two, I was diagnosed quite young. And three, my symptoms are sensory based rather than motor based.
All of these things are, apparently, a good thing.
Hearing this in the immediate aftermath of a relapse, I was inclined to laugh in his face.
But, for now, I'll take his word for it.
Finally, as the title of this post implies, time has been flying lately - and that also applies as regards my gorgeous daughter who is fast approaching the 16 month mark - eek!! Here she is in her latest cute-as-a-button outfit looking very sweet :)
And in that time I'm pleased to report that my body has thankfully being playing ball and I seem to be out the other side of the January relapse.
I've also had a review appointment with my consultant neurologist and he was generally positive.
Neurology appointments are funny things, especially for MS patients. The truth is that many of us will keep abreast of research news. We also keep in touch online, and I have found that by the time I see anyone in the medical profession I have already been assured by other MS'ers that what I am going through is normal ... or not!
And this was the case for this appointment, as he did not tell me anything that I didn't really already know.
However, my husband asked if he could give us any sort of idea as to the severity of my MS. He, of course, would not do so. He, and I, both know that the nature of MS is too uncertain for him to hazard a guess at what the future holds.
All of these things are, apparently, a good thing.
Hearing this in the immediate aftermath of a relapse, I was inclined to laugh in his face.
But, for now, I'll take his word for it.
Finally, as the title of this post implies, time has been flying lately - and that also applies as regards my gorgeous daughter who is fast approaching the 16 month mark - eek!! Here she is in her latest cute-as-a-button outfit looking very sweet :)
Thursday, 26 January 2012
Giving myself the chance to recuperate
So, I'm writing this is bed ... in a quick ten minutes reprieve from doing ABSOLUTELY NOTHING. Yes, my body has given up. Bed rest called and I am trying to embrace it as best I can. And that has meant no tv, no books, no phone (yeah right!) - all imposed by myself because I have had to recognise that the only way I'm getting over and past this relapse is to look after myself.
The last week has been such a rollercoaster. My break in London was simply lovely. Selfish as it may sound, it was great to not have to get up to a baby in the middle of the night, stay in my pyjamas until lunchtime, eat in grown-up restaurants and have some quality time with friends.
But the trip was clouded slightly by the fact that my legs were continually in pain. So much pain that at one point I even exclaimed that childbirth was easier - and it was. Because this was pain like I have never experienced before - excruciating, mind-numbing and constant.
The bottom line is that I have crossed over into an MS patient was gets spasms - a label the medical profession call spasticity. Horrible word, spasticity. Makes me sound all wobbly or something.
I digress. The result of these nasty spasms is that I am now on more medication, called Baclofen. And you know what, I think they're working already. I slept well last night and while I'm still completely zonked, the pain has subsided.
Now all I have to get sorted is this brain fog, which is the name I have given to this strange sensation that my mind is filled with cotton wool - and my body is simultaneously dragging through mud. The only way to describe it is that I can do everything, everything just takes ages (this blog post has been in the making for going on an hour already, on and off!)
In the meantime, I'm embracing 'doing nothing' for now - and eating lots of chocolate in the process -because let's be honest, chocolate fixes everything, right??!!
The last week has been such a rollercoaster. My break in London was simply lovely. Selfish as it may sound, it was great to not have to get up to a baby in the middle of the night, stay in my pyjamas until lunchtime, eat in grown-up restaurants and have some quality time with friends.
But the trip was clouded slightly by the fact that my legs were continually in pain. So much pain that at one point I even exclaimed that childbirth was easier - and it was. Because this was pain like I have never experienced before - excruciating, mind-numbing and constant.
The bottom line is that I have crossed over into an MS patient was gets spasms - a label the medical profession call spasticity. Horrible word, spasticity. Makes me sound all wobbly or something.
I digress. The result of these nasty spasms is that I am now on more medication, called Baclofen. And you know what, I think they're working already. I slept well last night and while I'm still completely zonked, the pain has subsided.
Now all I have to get sorted is this brain fog, which is the name I have given to this strange sensation that my mind is filled with cotton wool - and my body is simultaneously dragging through mud. The only way to describe it is that I can do everything, everything just takes ages (this blog post has been in the making for going on an hour already, on and off!)
In the meantime, I'm embracing 'doing nothing' for now - and eating lots of chocolate in the process -because let's be honest, chocolate fixes everything, right??!!
Sunday, 15 January 2012
Support and encouragement
Quick update on the steroid treatment .... which is now on day six.
Honestly, I'm not sure anything is really happening, bar the side effects. I suppose they take time to work and my naturally impatient nature means I expect results overnight. But the reality is that I still have eight full days to do, so I'm not even halfway.
So, I'm trying to be patient, amid the sleepless nights and crazy highs that have me a bit jittery come 6pm!
But mainly I have been completely overwhelmed and humbled by the amount of support that my last blog post brought with it .... from my family, friends, colleagues - and also from those who have left comments on here, through my personal Facebook account and on Twitter.
For everyone who has taken the time to get in touch, to say 'keep your chin up' and 'get well soon' - thank you. Sincerely, from the bottom of my heart.
Those words of encouragement gave me a boost that no medication could ever do. Proof, if ever I needed it, that I am a very lucky girl indeed - to have such amazing people in my life that are making this crazy 'ride' I am on, not so bad after all.
Honestly, I'm not sure anything is really happening, bar the side effects. I suppose they take time to work and my naturally impatient nature means I expect results overnight. But the reality is that I still have eight full days to do, so I'm not even halfway.
So, I'm trying to be patient, amid the sleepless nights and crazy highs that have me a bit jittery come 6pm!
But mainly I have been completely overwhelmed and humbled by the amount of support that my last blog post brought with it .... from my family, friends, colleagues - and also from those who have left comments on here, through my personal Facebook account and on Twitter.
For everyone who has taken the time to get in touch, to say 'keep your chin up' and 'get well soon' - thank you. Sincerely, from the bottom of my heart.
Those words of encouragement gave me a boost that no medication could ever do. Proof, if ever I needed it, that I am a very lucky girl indeed - to have such amazing people in my life that are making this crazy 'ride' I am on, not so bad after all.
Wednesday, 11 January 2012
The dreaded relapse strikes
Totally gutted to be writing this but it's time to admit that I am currently in the depths of a horrible relapse. I guess one was to be expected but it's never easy when it hits.
And this one has brought with it new symptoms. Bleugh!
Basically my right arm, you know the one that I need for EVERYTHING, while still functioning, is painful and has this hard-to-describe dead-arm feeling.
And I know half of that makes hardly any sense but I'm putting that down to the equally horrible steroids that I've had to submit to - to try and fight off this bad boy before it has my arm totally useless.
Steroids are never good. Well, they are in that they are supposed to help kick the ass out of a relapse, but their side effects are notorious - hence the reluctance on my part to start taking them.
But, I'm nothing if not a pragmatist, and if the neurologist and my MS nurse says they're worth giving a go, then so be it.
Today is day two and I've been awake since 5.30am and in constant pain since the minute I woke up.
Sympathy is appreciated at this juncture, but, genuinely not necessary because, honestly, it's the sort of pain you get used to.
And I'm thinking that if it continues then that can only mean that it improves my pain threshold - and surely that means my next child birthing experience will be a breeze!
You see, ever the optimist.
Of course, they're also known for their ability to make you permanently starving, so I've all my nearest and dearest warned that I am NOT to eat everything in sight over the next 12 days. Pity I've written this while scoffing chocolates ... but I'm sick, so they're allowed, yes?!
And some of my Twitter friends with MS have warned me that they also induce a state of insomnia - a condition I suffered from while pregnant and which I would very much like to avoid because a mum with no sleep does not a good mummy make!
Finally, I'm all booked to go to London next week for gloriously girlie weekend, which I most definitely will not be missing. Under. Any. Circumstances.
There's nothing else for it. I will rest from now until then and let the steroids do their best work.
Wish me luck.
And this one has brought with it new symptoms. Bleugh!
Basically my right arm, you know the one that I need for EVERYTHING, while still functioning, is painful and has this hard-to-describe dead-arm feeling.
And I know half of that makes hardly any sense but I'm putting that down to the equally horrible steroids that I've had to submit to - to try and fight off this bad boy before it has my arm totally useless.
Steroids are never good. Well, they are in that they are supposed to help kick the ass out of a relapse, but their side effects are notorious - hence the reluctance on my part to start taking them.
But, I'm nothing if not a pragmatist, and if the neurologist and my MS nurse says they're worth giving a go, then so be it.
Today is day two and I've been awake since 5.30am and in constant pain since the minute I woke up.
Sympathy is appreciated at this juncture, but, genuinely not necessary because, honestly, it's the sort of pain you get used to.
And I'm thinking that if it continues then that can only mean that it improves my pain threshold - and surely that means my next child birthing experience will be a breeze!
You see, ever the optimist.
Of course, they're also known for their ability to make you permanently starving, so I've all my nearest and dearest warned that I am NOT to eat everything in sight over the next 12 days. Pity I've written this while scoffing chocolates ... but I'm sick, so they're allowed, yes?!
And some of my Twitter friends with MS have warned me that they also induce a state of insomnia - a condition I suffered from while pregnant and which I would very much like to avoid because a mum with no sleep does not a good mummy make!
Finally, I'm all booked to go to London next week for gloriously girlie weekend, which I most definitely will not be missing. Under. Any. Circumstances.
There's nothing else for it. I will rest from now until then and let the steroids do their best work.
Wish me luck.
Monday, 2 January 2012
Starting as I mean to go on
First off, apologies to any regular readers for my prolonged absence.
There's no proper excuse, life has merely taken over.
My baby girl celebrated her first birthday on 11/11/11 - which was a brilliant day. Everyone tells you the first year flies but it honestly did. A close friend had her first baby on 08/11/11 and when I held him for a very lovely cuddle I could hardly believe Charlotte had once been so small, and so dependent, just twelve short months ago. Now, I can hardly keep up with her. As we say in Derry, 'she could buy and sell you' already!
And then of course the madness of Christmas swallows up December and before you can say diet the New Year arrives.
This year I'm not imposing any ludicrous resolutions on myself. Well, not any that require giving up anything. Rather, I intend to be less hard on myself. Give myself a break.
I figure that learning to negotiate the path along which MS is taking me is a hard enough journey without me putting pressure on myself to be the perfect mother, wife, daughter, friend and colleague as well.
Because I'm beginning to realise that nobody, no matter how hard they try, is perfect - least of all me!
That said, I do hope to blog a bit more often this year. There have been many times in 2011 when I have written a post in my head and then never got round to actually putting my thoughts on here.
In the meantime, here's a very cute picture of my daughter taken on her birthday :)
There's no proper excuse, life has merely taken over.
My baby girl celebrated her first birthday on 11/11/11 - which was a brilliant day. Everyone tells you the first year flies but it honestly did. A close friend had her first baby on 08/11/11 and when I held him for a very lovely cuddle I could hardly believe Charlotte had once been so small, and so dependent, just twelve short months ago. Now, I can hardly keep up with her. As we say in Derry, 'she could buy and sell you' already!
And then of course the madness of Christmas swallows up December and before you can say diet the New Year arrives.
This year I'm not imposing any ludicrous resolutions on myself. Well, not any that require giving up anything. Rather, I intend to be less hard on myself. Give myself a break.
I figure that learning to negotiate the path along which MS is taking me is a hard enough journey without me putting pressure on myself to be the perfect mother, wife, daughter, friend and colleague as well.
Because I'm beginning to realise that nobody, no matter how hard they try, is perfect - least of all me!
That said, I do hope to blog a bit more often this year. There have been many times in 2011 when I have written a post in my head and then never got round to actually putting my thoughts on here.
In the meantime, here's a very cute picture of my daughter taken on her birthday :)
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