Sunday, 10 March 2013

Tysabri number.......too many to count!


And so last Thursday it was Tysabri infusion time again! I can't believe just how long I've been having these infusions.
30th June 2009 was the date that I started the treatment and the beginning of September 2009 was when they put my portacath in. That means I've had my portacath in my chest for over three, how time flies and it's amazing how you get used to something.
I remember when it was put in and each day I thought about what to wear so that no one could see it, now though, I don't even think about it being there!!

I'm not convinced about how much good the Tysabri is doing me but my consultant is happy with me being on it and as I completely trust him I'm happy to continue with it. Plus there's no real alternative so there's no point in coming off it!
I think one of my issues with it is that I don't feel any different while I'm on it. What I mean by that is that I know people who can feel when they're ready for their next infusion. They know when they are coming to the end of their four weeks and are due the treatment. I don't feel that at all. In fact last year, when we had our six week holiday, I had a gap of seven weeks in between my infusions but it wasn't an issue. I didn't struggle while I was waiting that extra time.
My frustration is, because I don't feel any benefit, it's hard then to convince yourself that it is actually doing you some good! 

But as I say, until something better comes along I guess I'll be having a needle in the chest every four weeks for the foreseeable future!! :-)  


I wish this weather would decide what it wants to do and get on and do it! One minute it's mild and warm and the next it's freezing cold and bitter.
The cold has a horrible impact on my MS too.
My feet get very very cold, but my problem is that it then becomes difficult to differentiate between cold and pain. My toes especially. Because I have very little proper feeling in my feet, most of the time I can't tell what's going on. The carers that I have coming in are always telling me that they are freezing cold.
They put cream on my feet (Hydromol and Double Base) because when they first started coming to me my feet were in a dreadful mess. Very dry skin on the bottom of my feet, not helped by me walking around with nothing on my feet! The number of times that I stepped on something without realising it! ;-)
But I was referred to our local podiatry service and between the carers putting cream on and the podiatrists cutting my nails, my feet are in the best condition they've ever been's a shame I can't feel it isn't it?!?!

I thought that we may have made it through winter and that spring was just around the corner but apparently we may be in for snow again next week! 

And by we I mean the country but not us here.........we very rarely have any of the beautiful white stuff much to Martin's annoyance!! ;-)

Anyway whatever weather you are hit with next week, I hope it finds you well and able to cope with it!

Until next time! :-)

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