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.
Wednesday, 13 June 2012
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!
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