As anyone who reads this blog, or knows me well, will know, this year hasn't been an easy one MS wise. Two relapses in six months at the start of the year knocked me for six. Then a period off Rebif, followed by a trial month on Avonex left my body not really knowing which way was up.
I struggled to come to terms with the medication options available, feeling that they were harder on my body than the actual MS. Side effects are a common problem with Disease Modifying Drugs and as hard as I tried to see the good they were doing, I simply couldn't function while on them.
It wasn't easy but after some discussion with my family and my MS nurse I made the difficult decision to simply stop taking any.
I've talked before about how it's a double-edged sword because there are people around the world, and the UK, crying out to be given the chance to take some form, any kind, of medication and they aren't always readily available. Yet I have never been denied any.
And now I'm turning them down.
But it's our local policy not to give MS patients regular MRI scans so I don't know if the 18 months I spent injecting myself with drugs was even worth it.
I have always found this a frustrating situation. Surely a yearly scan would show if the lesions have increased/stayed the same? Then I might at least feel that every side effect was worth it.
Regardless, I have had to make a decision that feels right for me and my family. For now that means going without.
In recent months I have also managed to come off all of my pain-relieving meds which is brilliant. This proves, to me at least, that a relapse is simply that ... a blip, a knock-back, something I can, and will, overcome.
Those meds were essential to keeping me functioning but today I need none. To say that aloud is so amazing. To know that my body won't always let me down. That I can fight this.
But, more than that, it feels incredible to be saying that 2012 is, in fact, ending on a very high note.
In order to come off the DMDs but leave my options open, I choose to take what they call a 'pregnancy break'. This allows me to stay on the waiting list, so that when I decide that taking DMDs is once again right for me, I will automatically be allowed to start again.
And the reason I choose this option is because it wasn't far from the truth.
My husband and I have always made it clear that we wanted a baby brother or sister for Charlotte.
And, to our joy, that's exactly what we're doing!
I am 12 weeks pregnant, we had our first scan yesterday and our precious second child is due to arrive on 30th June 2013.
Sometimes the twists and turns of this road I am travelling on are hard to fathom. But this morning, as I write, I am clear that they have taken me on the right path. Yes, having MS is not ideal, but I am happy, I have a wonderful family and incredibly supportive friends.
Today, life is good.
Tuesday, 18 December 2012
Monday, 5 November 2012
Pregnancy and MS video for MS Society
My gorgeous baby girl will be two this Sunday, and she definitely isn't a baby any more. In fact, she has become a wee woman over the last month, chatting away, showing us who's boss and generally, full of fun.
There have been some temper tantrums to deal with ... but everyone talks about the terrible two's and I'm hoping that they don't last much longer!
It feels like yesterday when I was heavily pregnant with her and being filmed for the MS Society's Pregnancy and MS information video. In fact, three hours after the guys left my waters broke and Charlotte was born the very next day, a whole three days early.
They returned last year, as Charlotte turned one, and completed the filming, giving a more rounded view of what it's like for women with MS who decide to have children.
I had always hoped that the video would help others see that having MS doesn't mean you can't have kids. If anything, I wanted people to see that having MS wasn't stopping me from living the life I had always hoped for.
Yes, it was tough at times, and still can be, but what mother doesn't find parenthood hard going?
I was very conscious that this was MY story, and therefore couldn't reflect the entire MS community, but I still believe that doing the film was the right decision. I have had great feedback on Facebook and Twitter and the film is something that I am very proud of.
It's available to view here ....
Thursday, 4 October 2012
Living life
The MS Society magazine MS Matters had a great interview with a fellow MS-er recently in which she said that if she could do it all again she would "have fun while she could" and her words really resonated with me.
It has been no secret that the start of 2012 was very difficult, I went through two successive relapses and suffered quite a lot of pain. But thankfully in recent weeks I have been feeling much more like 'myself' and have found that I have been able to do so much more than usual.
Fridays are a good marker for me because they are at the end of a working week and it's also my day with Charlotte. At the start of the year there wasn't much we could do without me feeling knackered or sore. Even giving her a bath was a chore.
But the last few Fridays have been so different. Besides giving her a bath I am able to wash floors, prepare lunch and dinner, bake a cake, do some drawing or crafts and still have energy left come 7pm.
To anyone else this probably doesn't seem too out of the ordinary but for me it feels like a miracle.
Today I was out gardening with Charlotte and Joe, a task I have avoided in the past, not just because of the hard labour required but because I can't stand dirt in my nails!! But the words of the interview struck a cord and I decided life was too short to sit watching. Instead I got involved. The sun was shining, Charlotte was running and laughing about with our new kitten, I was planting bulbs which will hopefully flower in the Spring ... it just felt simply lovely to be enjoying life with my precious family.
So, while I can, I am striving to live life to the very best of my ability ... while I can, because no-one knows what tomorrow will bring.
PS. that also includes a weekend away with the girls for a hen do next weekend, where I intend to wear high heels, get glammed up and drink champagne. That's what I call fun :)
It has been no secret that the start of 2012 was very difficult, I went through two successive relapses and suffered quite a lot of pain. But thankfully in recent weeks I have been feeling much more like 'myself' and have found that I have been able to do so much more than usual.
Fridays are a good marker for me because they are at the end of a working week and it's also my day with Charlotte. At the start of the year there wasn't much we could do without me feeling knackered or sore. Even giving her a bath was a chore.
But the last few Fridays have been so different. Besides giving her a bath I am able to wash floors, prepare lunch and dinner, bake a cake, do some drawing or crafts and still have energy left come 7pm.
To anyone else this probably doesn't seem too out of the ordinary but for me it feels like a miracle.
Today I was out gardening with Charlotte and Joe, a task I have avoided in the past, not just because of the hard labour required but because I can't stand dirt in my nails!! But the words of the interview struck a cord and I decided life was too short to sit watching. Instead I got involved. The sun was shining, Charlotte was running and laughing about with our new kitten, I was planting bulbs which will hopefully flower in the Spring ... it just felt simply lovely to be enjoying life with my precious family.
So, while I can, I am striving to live life to the very best of my ability ... while I can, because no-one knows what tomorrow will bring.
PS. that also includes a weekend away with the girls for a hen do next weekend, where I intend to wear high heels, get glammed up and drink champagne. That's what I call fun :)
Friday, 7 September 2012
Pounds in the charity pot
It's happened again ... My blog gets neglected whenever I'm on my feet!
But, to fill any regular readers in, the charity evening was a MASSIVE success. I can't believe I'm saying it but we have raised just over £2400!!
We had initially hoped to get around £1000 so we are all completely overwhelmed with the support we have been given ... The money raised will go a long way to helping the charities.
The actual weekend was manic and I did worry that I would tire myself out but we staggered the organisation and apart from baking four cakes in one day everything else was fairly straight forward.
I had hmm-ed and haa-ed about giving a speech on the night but when it came down to it, it was hard not to thank everyone for coming, the local businesses who gave prizes and all those who helped make the night so successful.
And in typical me fashion I did shed a few tears. The generosity of everyone and finally getting a chance to say publicly just how much I appreciate and love my husband and parents, was simply too much!
But I am so glad I did. I hope everyone there got a sense of why I am so passionate about raising funds for MS Society Foyle and RAMS, the fantastic work they do and how vital it is that we support them.
The atmosphere on the night was so brilliant, everyone seemed to have a good time and the final 'closing' didn't come until nearly 6am ... Oops! But I sneaked to bed a good bit before then :)
With it proving to be such a success I think we would definitely host a night again, but maybe leave it a few years.
But, to fill any regular readers in, the charity evening was a MASSIVE success. I can't believe I'm saying it but we have raised just over £2400!!
We had initially hoped to get around £1000 so we are all completely overwhelmed with the support we have been given ... The money raised will go a long way to helping the charities.
The actual weekend was manic and I did worry that I would tire myself out but we staggered the organisation and apart from baking four cakes in one day everything else was fairly straight forward.
I had hmm-ed and haa-ed about giving a speech on the night but when it came down to it, it was hard not to thank everyone for coming, the local businesses who gave prizes and all those who helped make the night so successful.
And in typical me fashion I did shed a few tears. The generosity of everyone and finally getting a chance to say publicly just how much I appreciate and love my husband and parents, was simply too much!
But I am so glad I did. I hope everyone there got a sense of why I am so passionate about raising funds for MS Society Foyle and RAMS, the fantastic work they do and how vital it is that we support them.
The atmosphere on the night was so brilliant, everyone seemed to have a good time and the final 'closing' didn't come until nearly 6am ... Oops! But I sneaked to bed a good bit before then :)
With it proving to be such a success I think we would definitely host a night again, but maybe leave it a few years.
Friday, 17 August 2012
Getting up and at it
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.
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.
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
Thursday, 3 May 2012
Raising money and awareness
A week of baking has me absolutely knackered so today's post will be short and sweet!
First up, my efforts have not been in vain because I raised a whopping £100 at my Cake Break at work this morning.
I also managed to sell a measly 8 buns for £20 at my husband's work, and because I can't bear the shame of it, have baked a further two dozen buns for them tomorrow.
Tomorrow also brings a new challenge with it because I am going to talk on our local radio station, BBC Radio Foyle, about MS and how it affects my life.
I'm hoping my positivity will shine through the medical jargon and that I can help get some really important information out there about the illness.
But deep down I'm really nervous. I generally have a tendency to talk too quickly so I'll be trying to slow down while making sense ... Agghh, the very thought of it scares me silly.
If you're a local then I'll be on just after the 2pm news bulletin. Listen in and then tell me I sounded ok ... Even if I don't!
First up, my efforts have not been in vain because I raised a whopping £100 at my Cake Break at work this morning.
I also managed to sell a measly 8 buns for £20 at my husband's work, and because I can't bear the shame of it, have baked a further two dozen buns for them tomorrow.
Tomorrow also brings a new challenge with it because I am going to talk on our local radio station, BBC Radio Foyle, about MS and how it affects my life.
I'm hoping my positivity will shine through the medical jargon and that I can help get some really important information out there about the illness.
But deep down I'm really nervous. I generally have a tendency to talk too quickly so I'll be trying to slow down while making sense ... Agghh, the very thought of it scares me silly.
If you're a local then I'll be on just after the 2pm news bulletin. Listen in and then tell me I sounded ok ... Even if I don't!
Wednesday, 2 May 2012
Cake baking for a break
One of the fundraising ideas dreamed up by the MS Society is the annual Cake Break.
It takes place in MS Awareness Week every year and while Friday is this year's official Cake Break, I'm doing it one day early at work tomorrow.
I've rustled up 60 cupcakes and, with my mum's help, have iced every one. I'm hoping they're something a bit more glamorous than the usual 'buns' my colleagues indulge in for their tea break - and as such, raise a good few pennies for the MS Society locally.
Baking is something that I do to calm me down. It's a therapeutic pasttime, with a delicious outcome at the end, which always helps.
And it may sound silly but I take great pleasure in the fact that it's something I am still able to 'do'. Sometimes it tires me out after making a dozen, and on other days the thought of even having to lift out the mixer is enough to put me off, yet there are days, like today, when I can rustle up five dozen in an hour.
It's a lovely boost to have the knowledge that, despite the darker days and amid the relapses, that there WILL eventually be a point when I can still make a few cakes.
Thankfully, this week is one of those times and I'm proud to be taking part in the Cake Break.
There's still time to take part so if you fancy rustling up a few sweet treats and selling them to your family, friends and colleagues then there's no doubt that the MS Society will be very grateful of the money!
It takes place in MS Awareness Week every year and while Friday is this year's official Cake Break, I'm doing it one day early at work tomorrow.
I've rustled up 60 cupcakes and, with my mum's help, have iced every one. I'm hoping they're something a bit more glamorous than the usual 'buns' my colleagues indulge in for their tea break - and as such, raise a good few pennies for the MS Society locally.
Baking is something that I do to calm me down. It's a therapeutic pasttime, with a delicious outcome at the end, which always helps.
And it may sound silly but I take great pleasure in the fact that it's something I am still able to 'do'. Sometimes it tires me out after making a dozen, and on other days the thought of even having to lift out the mixer is enough to put me off, yet there are days, like today, when I can rustle up five dozen in an hour.
It's a lovely boost to have the knowledge that, despite the darker days and amid the relapses, that there WILL eventually be a point when I can still make a few cakes.
Thankfully, this week is one of those times and I'm proud to be taking part in the Cake Break.
There's still time to take part so if you fancy rustling up a few sweet treats and selling them to your family, friends and colleagues then there's no doubt that the MS Society will be very grateful of the money!
Tuesday, 1 May 2012
Educating and explaining
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.
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.
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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