There's no denying that my blog has been taking a backseat in recent weeks. A relapse simply takes over. And then I always find that once it's away, leaving me alone, that I am so focused on getting myself back on my feet that there is room for nothing bar getting myself up and out!
More than that, when I feel better I spend every waking minute I have simply enjoying life.
There are two arguments in this regard. The first is that you do as I do, make the most of feeling good and go 'hell for leather',
The second is that you conserve your energy, basically reserving funds for when the next relapse strikes ... and that taking things easy prevents one in the first place.
Of course no-one quite knows if either argument is better than the other so in essence no-one is 'right' but for me personally, taking the second route would be very difficult.
When I have energy, I use it. Whether that be taking Charlotte for a walk, baking some cakes or going away for the day as a family, then I want to enjoy life as best I can, when I can.
Family and friends are constantly telling me to rest and sit still, but honestly, you can't teach an old dog new tricks!
So, as I am feeling relatively 'well' these last few weeks, Joe and I have decided to host a charity night at our home, complete with a marquee, live bands, a raffle, lots of food, plenty to drink and a bucket-load of fun :)
It has all been organised in the last two weeks and takes place next Saturday, so it's all come together in less than three weeks! And I have to say, I have been overwhelmed by the generosity of people so far.
For starters, the bands that are playing are giving their time for free. The marquee has been provided by a colleague of Joe's. And the raffle prize list is so long it would take me all day to list them, but they include meals out, cinema tickets, hair and beauty vouchers, bottles of drink, an artist print and signed books by Irish authors, including Marian Keyes!
Next weekend is going to be a busy one, cooking up a storm and entertaining but it will all be worth it once the final figures are counted up and we can donate much needed funds to two Northern Irish MS charities .. MS Society Foyle, which is my local MS Society branch, and Race Against MS (RAMS), which is outside Belfast, and where I go for hyperbaric oxygen treatment (a holistic approach which I feel gives me a boost).
Both charities do outstanding work, and the staff work tirelessly to help those diagnosed with what can be a very scary chronic condition.
I'm so delighted to be finally giving something back. All I wish for now is some decent weather for the night itself! Wish me luck.
Friday, 17 August 2012
Monday, 18 June 2012
What a rollercoaster
Funny old thing, this MS. One minute it has you completely on the floor, albeit sliding slowly onto it, the next hovering somewhere in middle ground, before a quick push later and you're back on your feet.
And that's where I was at the end of last week, yet today I'm back on middle ground.
It's a never-ending rollercoaster, with the dips and highs appearing erratically and totally unannounced.
For weeks, outwardly, I was the same old me. At work, keeping a house in order, looking after Charlotte, making sure she was entertained, educated, looked after, being a decent wife* ... need I go on?!
But I was ignoring the fact that I wasn't actually very well at all. Far from it.
Instead, I was trying new medications, hoping for a quick fix, but not really stepping back and seeing exactly what it was I needed to be doing to help myself.
In the end, MS pushed me too far and I am nearing my second week off work.
Hard as it has been for me to take that time, today I am very mindful at it has absolutely been the best thing for me to have done.
But it has been a very frustrating time. Just five days ago I was about to attempt a day a work, convinced I was much better, only to find myself really not improved at all today.
And I'm the sort of character that needs to be at work. I crave the structure and the focus. But no matter how much my head is telling me I can do it, my body simply isn't playing ball.
I have spent the best part of yesterday and today either asleep or curled up on the sofa.
Gutted doesn't even cover how I feel today.
But tomorrow I will be back at work. I need to try. Otherwise I might actually go slowly mad!
*my poor husband may disagree but I am trying!
(and this was supposed to post yesterday so it's a day late! ... So to update, I survived work ... just! ... Will update properly tomorrow!)
And that's where I was at the end of last week, yet today I'm back on middle ground.
It's a never-ending rollercoaster, with the dips and highs appearing erratically and totally unannounced.
For weeks, outwardly, I was the same old me. At work, keeping a house in order, looking after Charlotte, making sure she was entertained, educated, looked after, being a decent wife* ... need I go on?!
But I was ignoring the fact that I wasn't actually very well at all. Far from it.
Instead, I was trying new medications, hoping for a quick fix, but not really stepping back and seeing exactly what it was I needed to be doing to help myself.
In the end, MS pushed me too far and I am nearing my second week off work.
Hard as it has been for me to take that time, today I am very mindful at it has absolutely been the best thing for me to have done.
But it has been a very frustrating time. Just five days ago I was about to attempt a day a work, convinced I was much better, only to find myself really not improved at all today.
And I'm the sort of character that needs to be at work. I crave the structure and the focus. But no matter how much my head is telling me I can do it, my body simply isn't playing ball.
I have spent the best part of yesterday and today either asleep or curled up on the sofa.
Gutted doesn't even cover how I feel today.
But tomorrow I will be back at work. I need to try. Otherwise I might actually go slowly mad!
*my poor husband may disagree but I am trying!
(and this was supposed to post yesterday so it's a day late! ... So to update, I survived work ... just! ... Will update properly tomorrow!)
Wednesday, 13 June 2012
Decisions, decisions
After a four week hiatus from injecting Rebif, I have had a productive meeting with my MS nurse about the next step forward for me as regards treatment.
I have definitely felt guilty about taking a break, because I know there are MS patients across the world who would give their right arm for any treatment whatsoever.
But I had this feeling in the pit of my stomach that I simply could not ignore, and it was telling me to take a break. So I did, and it's now over.
And I am absolutely convinced that many of the problems I have been experiencing over the last 12 months have been more a result of side effects from Rebif than any MS symptoms.
There's no question my head feels clearer and the flu-like aches and pains have also lifted.
So, my meeting today was to decide which other DMD I would try instead. There are three options available to me, each with their own pros and cons, so I'm going to have a good chat with my family, and do some more reading, before I make a final decision on which one I move to.
But, there's no question that I cannot accept a treatment plan going forward.
I have definitely felt guilty about taking a break, because I know there are MS patients across the world who would give their right arm for any treatment whatsoever.
But I had this feeling in the pit of my stomach that I simply could not ignore, and it was telling me to take a break. So I did, and it's now over.
And I am absolutely convinced that many of the problems I have been experiencing over the last 12 months have been more a result of side effects from Rebif than any MS symptoms.
There's no question my head feels clearer and the flu-like aches and pains have also lifted.
So, my meeting today was to decide which other DMD I would try instead. There are three options available to me, each with their own pros and cons, so I'm going to have a good chat with my family, and do some more reading, before I make a final decision on which one I move to.
But, there's no question that I cannot accept a treatment plan going forward.
Monday, 4 June 2012
Heels and healing
Once more I find myself in the throes of a relapse. Again, it is mainly leg related, with some other niggling factors thrown in for good measure. I've been ignoring its subtle onslaught as much as possible, although my use of a stick for walking these last few days should really have prepared me better for my current situation.
That's the thing with me. I know the signs. I know the time is coming when I have to admit defeat, if only for a while. But the knowing doesn't make the coping any easier.
Even today, despite calling in sick to work, I have found myself 'just tidying' when there is no need to tidy a thing. Joe and my mum have the house looking spotless, so I really should be 'just sitting' instead!
Which I am now. And I already feel more at ease by doing so. I need a calm air to take hold, I need to give my body the chance to recuperate and I need to listen better to myself.
I am also on yet another course of steroids, so while I try desperately to look after myself emotionally and holistically, I am not afraid to get the big guns in and tackle the relapse medically too.
With the number of pills I take these days I am sure I would rattle if you shook me hard enough!
This weekend I am attending my cousin's wedding and I want to be well to enjoy it. So between now and Saturday I am hoping that my renewed approach to taking care of me will work its magic. Because there's a pair of heels with my name on them that I really want to wear!
That's the thing with me. I know the signs. I know the time is coming when I have to admit defeat, if only for a while. But the knowing doesn't make the coping any easier.
Even today, despite calling in sick to work, I have found myself 'just tidying' when there is no need to tidy a thing. Joe and my mum have the house looking spotless, so I really should be 'just sitting' instead!
Which I am now. And I already feel more at ease by doing so. I need a calm air to take hold, I need to give my body the chance to recuperate and I need to listen better to myself.
I am also on yet another course of steroids, so while I try desperately to look after myself emotionally and holistically, I am not afraid to get the big guns in and tackle the relapse medically too.
With the number of pills I take these days I am sure I would rattle if you shook me hard enough!
This weekend I am attending my cousin's wedding and I want to be well to enjoy it. So between now and Saturday I am hoping that my renewed approach to taking care of me will work its magic. Because there's a pair of heels with my name on them that I really want to wear!
Wednesday, 30 May 2012
World MS Day is upon us ...
Coming hot on the heels of MS Awareness Week, today is World MS Day.
The aim of today is as simple as it sounds. People from around the world, who are living with or have some experience of, Multiple Sclerosis, are trying to get the word out about what exactly MS is.
It's a tall enough order. Research suggests that there is a low public awareness of the illness, and as such, those of us who live with MS every day can be faced with ignorance and contempt when out and about.
So, for today, World MS Day aims to educate and inform, mainly the following three basic key messages:
1) There is no known cause or cure for MS
2) MS symptoms usually start between the ages of 25 and 31 and can last a lifetime
3) MS symptoms vary from person to person and from time to time
It is a great initiative and I hope it works.
Today alone I am coping with weak, painful legs, using a walking stick, a dead arm, funny sensations in my hands, the usual bladder problems and the prospect of another round of steroids.
It's fair to say that my family, friends and colleagues know what MS can do to someone like me, a young woman who looks happy and healthy. It's getting others to see past my appearance that will take time.
Happy World MS Day :)
The aim of today is as simple as it sounds. People from around the world, who are living with or have some experience of, Multiple Sclerosis, are trying to get the word out about what exactly MS is.
It's a tall enough order. Research suggests that there is a low public awareness of the illness, and as such, those of us who live with MS every day can be faced with ignorance and contempt when out and about.
So, for today, World MS Day aims to educate and inform, mainly the following three basic key messages:
1) There is no known cause or cure for MS
2) MS symptoms usually start between the ages of 25 and 31 and can last a lifetime
3) MS symptoms vary from person to person and from time to time
It is a great initiative and I hope it works.
Today alone I am coping with weak, painful legs, using a walking stick, a dead arm, funny sensations in my hands, the usual bladder problems and the prospect of another round of steroids.
It's fair to say that my family, friends and colleagues know what MS can do to someone like me, a young woman who looks happy and healthy. It's getting others to see past my appearance that will take time.
Happy World MS Day :)
Sunday, 27 May 2012
Muddling through May
The month of May has been a very mixed bag. One day I am feeling great, the next I am struggling. But, if truth be told, there have more 'bad' days than good.
There has been a lot happening too and I have, once again, become very aware of my need to slow down.
This is so difficult for me. My personality won't let me sit still, and I hate sitting watching while others do things for me! It is definitely something I need to simply 'get used to' ... however hard I find it.
Additionally, I have also taken the decision to stop my injections for a few weeks, because I have a feeling that the 'fog' I was living under might actually be side effects from Rebif.
If, in six weeks or so, I am still feeling funny then a least I can rule out the side effects theory.
In the meantime, the spasms in my legs have gotten more frequent and increasingly painful. My MS nurse contacted my neurologist and he has recommended Lyrica instead of the Baclofen. I'm only on day five but so far I have seen no improvement. In fact, I have had to start using a stick for walking when I'm out of the house. It's mainly in case my legs buckle beneath me or feel weak.
This has been a big step for me as I have had to admit that I need it. It's one thing buying a stick, but actually taking it out of the house is hard.
It's a physical embodiment of how my body is letting me down. A sticker for all to see that, despite the brave face and positive energy, MS is still taking its toll.
On a lighter note, Charlotte is now 18 months old and turning into a little character ... keeping me on my toes but she also the very reason that I have more smiles than tears.
Note: I should mention that I decided to stop my Rebif treatment after speaking to my MS nurse and neurologist.
There has been a lot happening too and I have, once again, become very aware of my need to slow down.
This is so difficult for me. My personality won't let me sit still, and I hate sitting watching while others do things for me! It is definitely something I need to simply 'get used to' ... however hard I find it.
Additionally, I have also taken the decision to stop my injections for a few weeks, because I have a feeling that the 'fog' I was living under might actually be side effects from Rebif.
If, in six weeks or so, I am still feeling funny then a least I can rule out the side effects theory.
In the meantime, the spasms in my legs have gotten more frequent and increasingly painful. My MS nurse contacted my neurologist and he has recommended Lyrica instead of the Baclofen. I'm only on day five but so far I have seen no improvement. In fact, I have had to start using a stick for walking when I'm out of the house. It's mainly in case my legs buckle beneath me or feel weak.
This has been a big step for me as I have had to admit that I need it. It's one thing buying a stick, but actually taking it out of the house is hard.
It's a physical embodiment of how my body is letting me down. A sticker for all to see that, despite the brave face and positive energy, MS is still taking its toll.
On a lighter note, Charlotte is now 18 months old and turning into a little character ... keeping me on my toes but she also the very reason that I have more smiles than tears.
Note: I should mention that I decided to stop my Rebif treatment after speaking to my MS nurse and neurologist.
Friday, 4 May 2012
Talking 'live'
What a day! Had the privilege of speaking on our local BBC radio station this afternoon, Radio Foyle, promoting MS Awareness Week. My husband is a news broadcast journalist by trade and I honestly don't know how he goes on live radio every day for his work.
I was SO nervous. And not just because I had to speak live, but because I felt that I was a 'voice' for MS for a while ... and with everyone coping with the illness in their own personal way, I felt a duty to do everyone service.
In the end, the presenter, Mark Patterson made me feel very at ease very quickly. I think the interview went well. I simply focused on how MS affects me, and didn't try to be a 'voice' for everyone ... just a voice for me.
I hope that anyone listening got a small insight into what MS is and how it can affect life. I also hope that I did sound positive because as hard as a diagnosis of MS can be, there is so much good to come of it too.
If anyone fancies a listen you can catch me talking at this link ... 63mins in ... http://www.bbc.co.uk/iplayer/console/b01h0z8l
I was SO nervous. And not just because I had to speak live, but because I felt that I was a 'voice' for MS for a while ... and with everyone coping with the illness in their own personal way, I felt a duty to do everyone service.
In the end, the presenter, Mark Patterson made me feel very at ease very quickly. I think the interview went well. I simply focused on how MS affects me, and didn't try to be a 'voice' for everyone ... just a voice for me.
I hope that anyone listening got a small insight into what MS is and how it can affect life. I also hope that I did sound positive because as hard as a diagnosis of MS can be, there is so much good to come of it too.
If anyone fancies a listen you can catch me talking at this link ... 63mins in ... http://www.bbc.co.uk/iplayer/console/b01h0z8l
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