Tuesday, 1 May 2018

The Challenges of...oh I don't know...god I'm so tired.

I'm not sure what to write about today...just that I should write something! It's been a while, and I promised myself that I would write every week. Minor fail.

I had a day yesterday when I was out from 9.30 until 5 and it's taken its toll. So I'm sat here bleary eyed, with coffee, trying to get some divine inspiration. The fact that I could be out that long is a testament to how well Tysabri is working! In fact I'm due to have my next batch on Thursday, and normally my the end of the month I start flagging so my stamina has been better this month.

I've been sewing a lot again recently, which has meant not writing so much. Last time I was on a sewing 'mission' I was experiencing a manic episode of my bipolar and sewed so much I gave myself RSI in my wrist! This time it is much more relaxed and I'm enjoying it. I'm sewing for my business Bubbaloop which has an Etsy shop. Not much sells at the moment, because the shop isn't that well established, but I'm hoping things will pick up and I can start earning a little bit of money from it. If anything it's keeping me busy, and come September when Ed starts preschool I'm going to have a lot more time on my hands. It's funny how my first thought is 'how can I fill my time', whereas when posting this dilemma to a friend she just said 'look after yourself!'. It's an interesting thought! And one that shouldn't be overlooked!

It's like there's a light at the end of the tunnel now, and I see how things are going to become less physically demanding which frankly is a bit of a relief. No one can prepare you for how hard it's going to be, yes it's a happy and rewarding time, but hard nonetheless. As a mum with MS, that was always my fear - that I wouldn't be able to cope with the physical demands, but I'm nearly at the point where I feel like I can say 'I've done that and bought the T-shirt'.

In the grand scheme of looking after myself, I'm still on a mission to lose weight....but not only that just get healthy. Try and do more exercise and enjoy it. In the past I've used MS as a reason to not do certain types of exercise, like aerobics for example, because the high impact stuff doesn't mix well with fatigue, but I've found some YouTube videos that are doable for me. This one is a 'Walk at Home' which I found really good. It's only 25 minutes, which is fine for me, and it intermingles walking and standing toning exercises.

I've also cut out sugar again, but I'm determined to have a real lifestyle change and stick at it this time - I haven't had any sugar in 3 weeks. I am very proud of that, and weirdly I don't miss it. I'm waiting for some huge sledgehammer of craving to hit me, but it hasn't yet which is good and so far I've noticed that cutting out sugar has helped with my tingles which is great.

I think I've brain dumped enough for now! I promise my next post will be full of purpose and be wonderfully witty. ;)

Till next time

sea mobile, baby mobile, needle-felted mobile, fish mobile, octopus, underwater mobile

My favourite mobile that I've done for the shop!

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 plus....it 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....

...is 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!