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!)
Monday 18 June 2012
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!
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