Musings and Snoozes

In the immortal words of Winnie the Pooh

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Dear Dad,

I won’t make this sappy. We didn’t do sappy all that much while you were here, so there’s probably no need 9 years later. But I do miss you and I do wish you were here.

I wonder what you’d make of everything in my life now. Pretty sure you’d bloody love the pooch. You were a sap for dogs – no one will forget you falling in love with Tilly after insisting that you really didn’t do small dogs. Like father like daughter there it seems – I went to look at a Rottie and came back with a Jack Russel, If it’s possible, I reckon Bella would be even more spoiled than she is now if you were around. She’d certainly be a fair few pounds heavier, especially with your cooking!

And how I miss your cooking! I’d like to think I inherited some skill there, though I can’t help but still feel you standing behind me making the odd comment or three. “Oh, you do it like that do you……..” for instance. You’d hate my kitchen – too small and too much stuff everywhere. I did inherit your shopping skills though – I think Jon might have to stop letting me go to Tesco unsupervised soon.

The end of the F1 season is coming up in the next few weeks. You’d be pleased to know that I’ve occasionally been known to nod off half way through a race too. And then insist I was just resting my eyes of course! You wouldn’t be all that impressed with the changes in rules since we last spent Sunday afternoons in front of the TV – too much tyre management and not enough excitement. Plus all our favourite drivers are commentators now – how did that happen?!

You’d love Bug though! Or at least you’d laugh at Bug, but secretly be impressed. You’d certainly be proud that I eventually turned into the petrol-head that you probably always hoped I would! It was a bit touch and go for a while – as you know, I had no interest at 17 when everyone else was learning. I can’t say as it got much better when I finally learned and passed at 24, but a few months later and I realised what you’d always loved about driving, and now you can barely separate me from the driver’s seat. I’ve done alright with the car buying too – your insider motor trade skills have served me well – I certainly won’t be bullshitted by some smarmy dealership sales dude that’s for sure!

I’m off to Ireland next month with work – you’d be bloody loving that. Mum’s already asked me to pack her in my suitcase, you’d have probably booked a flight by now knowing you. I must admit, it seems kind of apt that my job now focusses on a country that you loved so much and had so many links with. Gabriel asked me all about you and mum the other day – it made me quite proud to tell him how you lived there and talk about it a bit. I’m looking forward to going back, though i’m a bit aware that I haven’t been since we went that summer, which makes me sad. I’ll be sure to find something in your honour though while I’m there.

And then there’s everything going on with my health. I sometimes wish you were here to hug me and tell me it’ll all be ok. I wish you could reassure mum too when she worries about me, which I know she does. I’m stubborn though – can’t imagine who I get that from – and most days I really am ok. It’s hard, but I’m really learning how to change the little things to make everything that bit easier. You’d laugh at my purple flowery crutch and my brightly coloured medial bracelet, but I know it’s only what you’d expect.

Most importantly, I’m blissfully happily married and you’re not here to see it. I can’t believe you didn’t get to walk me down the aisle like I always thought you would, but mum did a fine job in your place 🙂 You’d love Jon – he’s as daft as you and I’d forever be being ganged up on were you here too, He’s probably a little bit more like you than I care to admit, not least because no matter how smart he is, he still always looks like an unmade bed – just like mum reckons you always did! I’ve even got him going to folk festivals and listening to proper music – you’d be dead impressed! He still needs a bit more educating, but I’m working on him.

What I wouldn’t give to have you here to share all this with, but I’m pretty secure in the knowledge that wherever you are, you know perfectly well what’s going on in my life. I can still hear you calling me Chuckie, teasing me, and being generally baffled by my ever-changing hair colour and love of Doc Martens. I think you’d be proud though, after all, everyone knows I get it all from you 🙂

x

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Not broken, just power saving

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I was going to blog about my current crippled state, but then I realised there’s not a lot to actually say about it. I did a teeny tiny bit of gardening yesterday, I looked after myself, took my medication, had a hot shower. This morning I couldn’t move. Sigh. It’s got a bit better as the day’s gone on, but I’m now back to small steps and no sudden movements. So that’s that.

I then came across the picture at the top and it’s remarkably similar to how Jon and I are spending our evening. He’s currently gaming with Matt via the magic of the interwebs, while I’ve made myself a bean bag blanket fort with the pooch, my phone, and a box of chocolates. And you know what, this works for us because we both understand what our complete opposite selves need.

During my pain therapy sessions a few weeks ago I brought up the fact that sometimes I say no to social things not necessarily because of my pain limitations, but because of how mentally tired I often am afterwards. My therapist just looked at me and said “I expect that’s because you’re an introvert”. I’ll be honest, I was all set to argue. After all I’m a people person, I’m good with people, I spend most of my time at work training or mentoring people – surely introverts are shy and awkward?! But no, the definition of an introvert is someone who regains their energy from being alone. I don’t think of all the definitions of my personality that there’s a truer one than this. We talked about it a lot over the following weeks, and I think understanding it, and consequently myself, has been the biggest part of my recovery so far.

Not that it’s all been peachy – I’ve also learnt that a huge amount of my low mood and anxiety issues are tied up with this too, and I’m slowly learning how much alone time is too much. It’s almost like filling a balloon with air – it’s all good until there’s that little bit too much and then pop, it explodes and falls apart.

I’ve actually been referred for further therapy to address these exact issues. I won’t lie, I’m terrified. After all, I’m totally fine in my blanket fort thank you very much. Except I know I’m not and that I have to learn to balance just how much recharging is too much, but I hope that with a bit of help I can learn to mange both the physical effects of whichever illness is wearing me down on a certain day, as well as the mental recovery too.

Tonight I’m happy with the pooch and my bean bag, but tomorrow I will get up and face the outside world again. Crippled status permitting of course….  🙂

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#GoodAndBadDays

One of the nicest things people say to me is “Oh my goodness, you’d never know you were ill”. Honestly, it does my heart good to know I’m not walking round looking like death and that I might keel over any second.

But it does have its downside. When I’m having a tricky day, the kind where even sitting down hurts and every noise and movement feels like it might tip me over the edge, it’s hard to know that on the outside I just look like my usual happy, healthy self.

Now don’t for a minute think that I’m wishing I looked like death on a daily basis, I’m not. Trust me, knowing that people don’t suspect a thing means that I’m still winning at life as far as I’m concerned, but trying to explain that you feel like you’ve got a bad case of flu crossed with a three day hangover really isn’t easy when you’re still standing up and getting on with things.

So that’s where #GoodAndBadDays comes in. If, like me, you follow any sort of invisible illness group on social media then you may have seen some of these posts already, but the idea is simple – photos of how you look to the world on your good days (or at least functioning days) along with photos of the days that people don’t get to see, the ones where you physically can’t get out of bed, and when you can’t pretend that everything’s ok. It’s a pretty powerful idea and shows just how different someone’s life is when the illness gets the better of you.

So here’s my little collage – the good, the ok, and the bad. I don’t let many people see me on my bad days (and what you don’t see here is the walking stick, the hot and cold flannels, or the drugs!). I don’t even let myself admit how bad things can get sometimes, so here is a rare moment of bravery for the sake of a much needed understanding of life with an invisible illness.
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