Wednesday, 21 March 2018

Good news overload!

It's been a week full of good news.

Firstly, I had my annual Tysabri review which went really well. Dr Inglis conducted the usual tests and seemed really pleased with the results. Plus...and it's a big turns out one of my brain lesions has actually shrunk since being on Tysabri. This is terrific news!
It's the first disease modifying drug I've been on that has actually worked.

Then the same day there was an article I read about how they've discovered a particular protein that is linked to MS. It's obviously a long way off from a cure but it all sounds promising.

And THEN they've announced they've made more developments with stem cell therapy and the results are great for people with relapsing remitting MS. There's a great breakdown on the MS-UK site for anyone who is interested.

So the future is bright. They've come a long way since I was diagnosed (17 years this April) and I feel more and more reassured about the future.

Back to the here and now though, and it's been a busy and therefore tough week. I have a lovely weekend away with my Mum and two aunts planned though, so I can get a bit of respite, ready to knock the Easter holidays out of the park. I'm planning on taking the kids to Lincolnshire on my own! It could be a disaster, but I've got to try these things. If it works out OK, it means I will feel less tied to the house which would be great. We even got the kids some passports the other day (not that I'd ever take them abroad on my own!) but it just goes to show how much more confident I'm feeling about travelling. You never know, maybe one day we'll get a proper summer holiday somewhere. As much as I like Wales, it ain't exactly tropical. :)

Wednesday, 14 March 2018

The Trouble with Gym.... that it's knackering.

Until recently Ed has been taking part in a little gym class every Wednesday. I say 'taking part'....lying on the floor or running around aimlessly isn't exactly taking part. He loved using the equipment, but he decided that doing the singing and warming up at the beginning just wasn't his thing. Which meant the dreaded word.......wrangling.

God how I hate wrangling my son. He's bigger now. He's stronger (as strong as me, I'm sure) and he's stubborn. This led to 15 minutes every week, at least, of me tussling with him, chasing him, trying to out-manoeuvre him, while a class of well-behaved children took part in their entertaining and well regimented warm-up time. And I was paying for the privilege.

It was exhausting, and I ended up dreading it every week. Wednesday was not a good day to get stressed because I also had to take Lib to drama after school too, so overall it was a busy and tiring day. So I finally gave in, and realised that if he wasn't going to take part there's no point in us being there, plus not going would make my Wednesdays a whole lot easier. But what to do instead?

I'm not the most energetic of people, as you can probably guess. Ed's gym class was a way of him getting some exercise and learning some new skills, so I had to think of a viable alternative. I don't want my kids to be adverse to exercise just because I am (I have good reasons, sure, but for their own health I want them to get stuck in where I can't). So how I can encourage them, but still preserve my own energy?

The park is great, but inevitably I have to push swings or spin roundabouts and it all takes its toll during the day. So my current solution for Ed? Soft play. Say what you will about them, but soft play has it's place, and for me at the moment it's invaluable. Ed's finally at the age where he'll go off and play, especially if we've invited a friend along too, so I can sit back and 'relax' (let's be honest, it's hard to relax in those places though!) while he does his thing. It's good exercise for him, and I'm sure he learns a few social skills while he's throwing himself around. And talking of social skills, I'm making a more conscious effort to organise play dates with other little mites his age. It's a win win situation. I get my social fix, Ed gets to develop friendships, and it breaks our day up. I've decided that getting into a routine with these things will really help not only me, but him too.

Finally things seem like they're falling into place. The older Ed gets the more I can see the light at the end of the tunnel. I'm generally getting better sleep, feeling less fatigued during the day, and excited for him starting preschool (though emotional at the same time!). I can talk to him and reason with him now, which helps a great deal, and I just feel the hardest days are over. I could be completely wrong and there's a whole sh*tstorm of emotional torment heading our way, but let me sit in my little bubble for a few moments......before I crash back to reality!

He loves a ball pool!

Wednesday, 7 March 2018

Making time for myself

So the latest bout of depression has been and gone... thank goodness.
It was a tough time, but I feel completely back to 'normal' now.
As with the nature of the Beast though, a low period means it's usually followed by a high where I try and over-compensate with the kids. This time I've tried harder though to keep myself on an even keel and it seems to be working. Things are stable but we're still managing to have some fun.

I've realised that I need to make more time for me and try to become a bit kinder to myself. Yoga has helped a huge amount with that. I started in the New Year because my back was hurting horribly. Now, at the very least, on a Tuesday and Thursday morning when Ed is at Kindergarten I take the time out to do at least half an hour. Its relaxing, good exercise and... grounding, which is really what I need. Especially with the bipolar. It makes me concentrate on myself and how I'm feeling.
I've been following a programme on YouTube called True: Your 30 Day Yoga Journey, hosted by a wonderful teacher called Adriene. I was a complete beginner (well, I still am!) and I've found the course supportive and gentle. Perfect for the MS. My back and legs have both improved through the practice and my core strength is better.
I think it helps with my confidence too because every time I complete a session I congratulate myself for turning up and giving it a go. ☺

I need to get into writing again too and keep up to date with this blog in particular. Documenting my thoughts and feelings is also a kind of therapy for me.
So here I am, at soft play while I wait for Lib to finish drama, writing this post. Having screaming kids running around me isn't quite my idea of 'me' time, but it's a start! If I can take little moments for me amongst the madness of life I'll be on the right track.

With or without health issues, it's so important for any Mum to make time for themselves. It's Mother's Day on Sunday. Make it count by doing something for you. 😃

At Playspace...trying to look sane.