Wednesday, 19 July 2017

Tysabri Number 8

Today was my 8th Tysabri infusion and for some reason it really drained me.

After the first couple I felt positively buzzing straight after, but maybe that was because of relief that it had gone ok. But this time it has been a challenge. Everything went fine (I even looked at the canula being inserted this time...and didn't pass out! Yay for me! ;), but I just felt completely shattered following the infusion. Luckily there were enough hands on deck for me to be able to have a lie down.
It's like this time has been mentally as well as physically draining. I have felt low and down in the dumps this afternoon. I've been dwelling on my future more and more, and when I see other patients at different stages of their MS it brings it home to me how unpredictable my health is. Like Si says, there's no point in worrying about a future that might not be, but it's hard sometimes.

Looking to the here and now though and Tysabri seems to be doing some good.
I've generally had more good days than bad, which is noticeable particularly at the weekends. I went through a stage when I would need to rest every weekend because I was so fatigued after the week, but I've had some lovely weekends recently when I've been able to make the most of 'family time'. That says a lot, especially considering how hot it's been in recent days.

I wonder whether Tysabri has made me more resilient to the heat? It has made me reflect though on how over past summers I wasn't in a good remission, so the heat affected me particularly badly. Now Tysabri has pushed me into a strong remission, I can cope with the temperature changes much more successfully. Thank goodness! It's been so nice to be be able to be out in the sun with the kids and not worry about it wiping me out for the whole day.

Anyway....buck up Chloe. Tomorrow is a new day, and you're going to need your wits about you to cope with the school holidays!


black cloud, MS, depression, fatigue