Invisible Disease

Having an invisible illness is a strange thing – the way I feel on the inside and the way I look on the outside couldn’t be more different.

Looking at myself in photos now is an oddly jarring experience. I desperately fight my way through each day, wading through deep treacle barely keeping my head above the surface. I must look completely awful, my face and body showing just how shattered I feel.

And then I see a photo of myself from that day and I look..normal.

In a way it’s great that what’s happening inside doesn’t always show, but sometimes I wish it did. Maybe people would be a bit more understanding, sympathetic, and there’d be less of the ‘You really don’t look sick at all’ type of comments.

I know people mean well when they say those things, but it always feels a bit undermining. My body is fighting a war with itself – what difference does it make if I don’t look sick? I guess it makes it easier for them if they can’t see what’s happening.

My referral to meet with a surgeon (set for mid-June) arrived in the mail today – I have a lot of soul searching to do before then, because I’m still convinced I don’t want to go down that path…

Martial arts are a great leveler. Whenever you start feeling confident you grade and go back to feeling like a total novice again.

Taekwondo classes start back up tonight after a two week break. First session as a yellow belt, and the double grading means there’s a lot to learn!

Also, flexibility. Turns out that at 32 years of age I basically have none. I need to set myself a goal, something tangible. How about…photographic evidence of me doing the splits in, say, 5 weeks?!

Yeah, let’s do it 🙂

All the sugar!

Two weeks into my sugar-free diet experiment, and over the weekend I totally let my guard down.

It was my sister’s birthday, a family get-to-gether, and I convinced myself that one night of treats would be fine. You know, before hitting the sugarless wagon again in the morning.

Yeah, no. A night of high sugar intake after two weeks of having almost none is a bad, bad idea. I lay in bed that night with a pounding headache, a horrible taste in my mouth, and my UC (which has been flaring moderately for what feels like forever anyway) on high alert. I generally only get nauseous when my UC is flaring hard, but I felt more sick than I have in a long time.

Up and down all night, blood, nausea, blood, nausea…

Then I woke up with the worst sugar hangover ever. I felt sluggish, blurry, headachy and *dry*.

Ugh!

Needless to say I won’t be jumping off this wagon again any time soon.

Come to me, real food…

How do people announce pregnancies these days?

I was thinking of telling a story about our washing machine – how it plays a really cool tune that lasts for a full minute when the wash ends, it’s just so catchy and I whistle along to it every time, but how in November I’ll probably take to it with an axe after it wakes the baby for the 6th time.

Then I got thinking about sentimental stuff, like how incredible it’s going to be to meet the third(!) brand new human we’ve created, how lovely it’s going to be watching Will grow into his role as a big brother, and how Joey is going to be such an amazingly helpful little guy.

The other option was just coming out and saying that Kate’s totally pregnant and is due on November 4th, but that just seemed so *boring*.

So long, sugar!

I’ve tried a bunch of different diets since being diagnosed with UC 4 years ago, and so far I’ve had little luck. The Specific Carbohydrate Diet was the most promising initially, but after 2 months my symptoms hadn’t improved much (if at all) so I packed it in and walked back into the comforting arms of a stack of bagels and a triple scoop of ice-cream.

I have an emotional attachment to food. I often have the image of a specific food (a bowl of ice-cream drizzled in chocolate, a pack of chips and salsa, waffles and maple syrup, a bagel drowning in cream cheese and raspberry jam) pop into my head, and my heart will actually start *racing with excitement*. Seriously.

There are a couple of common themes running through the type of foods that cause this reaction for me –

1) they’re all insanely delicious and moreish, and

2) they’re all loaded with refined sugars, flavours and additives, and are incredibly bad for me.

For a normally functioning healthy human these foods are straight up bad. For someone suffering from a chronic illness related to the digestive system these foods are actually *evil*.

To make it worse I can’t even begin to exercise any level of portion control with them – they just run riot, and I carry on until I clear the plate/bowl/packet/house.

So, given that I’m completely incapable of denying that 14th Easter egg even after scolding myself during the previous 13, it’s dawning on me that the only way I’ll cut my intake of refined foods is to remove them from my diet altogether.

I’m rocking along this Taekwondo journey and it’s already arming my brain in the mind over matter fight, but my physical health is actually degenerating quite quickly. Medications have stopped working and I’m still on a waiting list to talk about this stupid surgery, so I’m starting to feel a bit desperate about it all.

Desperate enough to take an immediate stand on sugar, that’s for sure. I’ve read a lot lately on the impact these horrendous levels of (unnecessary) sugar are having on people, so I’m really interested to track and test the impact on both my body and mind over the next couple of months – especially from a chronic illness perspective. If you’re keen to know if it might help you out but don’t want to take the leap yourself just yet – stay tuned!

First stop – mapping out a list of alternative comfort foods to go running to! 😉

First grading – the result

So I flicked my grading instructor a message for my result over the weekend, and was totally blown away by his reply – the grading panel gave me something called an ‘unrequested double grading’ (which I barely knew existed), which skips me straight from white belt to yellow.

Over here in the New Zealand (www.itkd.co.nz) it looks like the rate of double gradings sit at about 1%.

“Double gradings are awarded to those who show abilities far beyond their grade. These are students who have a real flair for TKD, and performed extra well at grading. “

Needless to say I’m still buzzing! Looks like the conviction and effort I put in on the night of the grading really did cover up my many technical flaws 😉

It’s early days of course and my instructor takes the journey through Taekwondo seriously, so I’m quite confident this will be the only time a double grading happens. But while I fight through this disease looking for positives to keep me focused, this is a massive boost to my self confidence at the start of my martial arts journey.

Final thought – I now have two full theory, pattern and technique sections of the syllabus to master in time for the next grading instead of just one. *sweats*

First grading, done!

First Taekwondo grading, done! What an experience. I felt totally out of my comfort zone, but I moved with as much conviction as I could during the night. 110% effort and focus for every movement – I still felt clunky and my muscles still forgot where they were supposed to be half the time, but I’m hoping that purpose will have shown through all that.

I’m told it’s actually quite hard to fail this first grading so I’m not too concerned about passing. But I’m not in this thing to tick off the belts and walk away – I’m facing this damn surgery to deal with this stupid, stupid chronic illness, so I’m there to learn, train and fight with everything I have while I still can. Who knows how long I’ll be as physically capable and free as I am now, so every training session, every late-night practice after my kids are asleep, every grading session – I’ll be going through every one of them as if it’s my last.

It’s school holidays here now, so we have a two week break from training – there’s no way I can wait that long to hear how it went, so I’m off to drop the grading instructor an email. Fingers crossed!

All going well, I can’t wait to start learning my first full pattern – Chon-Ji Tul.

Grading day!

Last time I went through one of these I was 4 feet tall, had a pack of WWF cards in my back pocket, and spent my downtime playing an Atari.

Time is a funny thing.

That’s me standing on the left there, in my first ever Karate grading back in the 1980s.

Fast forward over 20 years and it’s time to do it all again – only one day to go until I hit my first Taekwondo grading!

I reckon I was feeling less nervous in that photo than I will be tomorrow night…