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

Thursday, 13 July 2017

Good news...and sports day

I'm proud to say that I'm going to be a regular guest blogger for the MS-UK website!
Apparently the posts I've written for them have been very well received, so that's great news. Onward and upwards with this writing lark! The book I'm writing is slowly but surely coming along, though I have no doubt that it'll take me years to actually finish. Then again, you never know, I might surprise myself.

In other news we had Libby's school sports day today.
She did brilliantly and I was so proud, but things hit a bit of a snag when she wanted me to go in for the mother's race. I said I couldn't (I mean, I don't even know whether I can run anymore, and I didn't fancy trying in front of a whole school of people! Plus, there's always the risk of me knackering myself out for the rest of the day) and she got really really upset because the other Mum's were doing it. It was my first taste of her being upset because of my MS and it sucked. Usually she's so good at listening to me and going with the flow, but she was beside herself.
I guess this will happen more and more the older she gets and the more aware she becomes of my MS. It's such a big thing to take on board, and I'm just sorry that she has to deal with it.
There's no point in dwelling on it though. I do what I can, and that's all I can do. The kids will
understand that one day.

Lib clearing a foot of air!

Monday, 19 June 2017

MS in a heatwave

It's heat wave time. Get those windows open, fan on and get out the half inflated paddling pool, it appears summer is here.
Now, if you've read this blog you know that heat does not sit well with me. Not only does it make me stiff and tingly, it also knackers me out beyond compare.
So, at 28 deg outside I should be sat here feeling pretty miserable, right?
Well, believe it or not, I've been fine.
In fact, yesterday I was up at 4.30am with Ed (damn you early sunrise) and managed the whole day in the ultra heat. We even had a bbq, which obviously takes far more preparation than you think, and yet. And yet....I'm fine.
No tingles. No stiffness. No crippling fatigue.
I'm now starting to get nervous. I should be suffering.
Is it Tysabri? We know that it can't repair damage, but what with it pushing me into a good remission, maybe this is the first summer I've had for years where I have been in a proper remission.
Is it sugar? Is sugar really a poison like they say and was flaring up symptoms. I can't deny that I feel better physically from restricting my intake. I've come off the mega 'nothing sweet whatsoever' detox though, and allowed myself a bit of fruit every now and again. I figure fruit has benefits that outweigh the sugar intake. If it is the lack of sugar that has improved things, it's a sobering thought. All these years I could have been helping myself and my MS but I didn't, for want of a sugary treat. It brings me right back to when I was diagnosed and a nurse told me I couldn't have chocolate anymore (no explanations, just that I couldn't have chocolate. She was like an old crone cursing me for all eternity).
It's all hindsight though, I guess.
For now I'm just going to try and keep cool and enjoy my non-tingling feet. Who knows how long it'll last for!