Tuesday, 19 September 2017

Autumn has arrived...

Great British Bake Off on? Check.
Considering putting on the heating? Check.
Raided the jumper box under the bed? Check.

Yep...Autumn is officially here.
My favourite season!
My body literally gives a sign of relief when it gets cooler. But great things have occurred this year..after all I've managed to go through Spring and Summer without having another relapse!
Tysabri must be working wonders. It's such a nice feeling to think that I'm on some drugs that are actually helping now. They do tire me out after I've had had the infusion, but that's a small price to pay for a drug this good. My one fear is that one day I'll be positive for the JC virus though. If you remember, the JC virus is a dormant virus that, when it becomes active, greatly increases my chances of getting PML (a brain infection). Because of the way Tysabri works, the body can't fight the infection and so PML can lead to severe disability or death. Often people remain on Tysabri even though they become positive for the JC virus, because the chances of getting PML are still 1 in 1000. But as it's 1 in 10000 at the moment, that's quite a leap, and one I'm not sure I'd be willing to take by carrying on with Tysabri. I guess it's not worth thinking about now, after all it may never happen, but I confess it has been in the back of my mind recently.

Back to the hear and now though, and I'm glad that we're starting to get back into a routine as a family too. Lib has started back at school (as Year One!) and Ed is still enjoying nursery, thank goodness, so things are ticking along nicely. This Saturday we managed a day trip to Bath to go the Egg Theatre to see Sarah and Duck. There was much walking and a bit of standing around, namely on the train, but I managed it. That being said though, I was in bed the following day, and limping the day after that. I guess it's still swings and roundabouts at the moment. It was nice to get out and have a family day together though. We just need to find that balance between having a nice day out, but one that doesn't tire me out too much :)

Oooh....I've had another guest blog post published on the MS-UK website. They have asked me to contribute once a month, which has really perked me up because I've had complete writers block recently. Even writing this has been a challenge.
The link to the blog post is here: Summer Holiday Musings
I shall persevere though. I've been writing children's books too, and as I'm getting better with each one, I'm hoping that one day I'll be able to be published. That's the dream anyway. It just seems like a bit of an uphill struggle at the moment. Onwards and upwards though!

Ed loved his first train journey!!

Friday, 28 July 2017

Summer holidays

Between you and me, I secretly like the summer holidays. Sure it's knackering, but it makes me far more creative in my parenting. I get stuck in a bit of a rut with the kids sometimes. Lib being off school gives us more options to do stuff, so instead of me having to rely on weekends (many of which I've been ill) to do fun stuff with the kids, in the holidays we can be spontaneous and head out when I'm feeling ok.

Today I managed to take them to The Wild Place all by myself! Normally I'd have another adult on hand just in case I got tired, but I felt confident enough to do it, so off we went. It was lovely to do something a bit different on my own with the kids for a change.

I enjoy The Wild Place because it doesn't get busy in the same way the zoo does, and there's so much outdoor space. I find the zoo very claustrophobic and really quite stressful whereas at Wild Place it's much more about meandering about. Plus there are giraffes and zebras so Ed was one happy bunny!

We're off on holiday to Wales tomorrow, with my whole family. Fingers crossed the weather will be ok enough to get some days out - otherwise I fear we're all going to go stir crazy! After such a bad week last week, it's like a huge weight has been lifted from my shoulders. The fog of depression has gone, so I can fully look forward now to what next week brings. I'm sure I'll have periods when I'm fatigued, but with so many helping hands me and Si should be able to get a bit of time to relax. Here's hoping!

The photo is of Ed riding the jeep at Wild Place...he's starting to look so grown up!

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