Living with an Invisible Disease

I live with Fibromyalgia. First of all, I’m one of the lucky ones. Some people can’t work and struggle with day to day activities. There are help groups set up with motivational messages and jokes, and plenty of stories of frustration and pain due to life with Fibro, one of many invisible diseases/ disabilities.
It’s called “invisible” because you can’t tell that someone is sick just by looking at them.
It’s something I was diagnosed with a few years ago, and while it’s great to put a name to all the things that are wrong with me, knowing that there’s no cure really sucks.

So what is it?
Pain. That’s the main thing. Pain all over. I have pain in my lower back as I type this. I also have a stabbing in my right shin that comes and goes. This is normal. There is always pain, it’s just in different places and at different strengths. There’s different ways that the pain feels too: stabbing, dull, prickling, and tightening. The worst sort for me is the type around my ribs. It can feel like you’ll rip cartilage if you move.
And then there’s different triggers. There’s what I call “random pain”, like what my shin is doing, which basically means there is pain for what I consider to be no reason. And then there’s “annoying pain” which is when I get pain from something I shouldn’t eg. if someone hits me on the arm, like a joking gesture, my arm will hurt for an hour or two afterwards. You know those entry gates they have at supermarkets to stop trolleys exiting out the entrance? Hate them.
And finally there’s “pain pain” which is when something is broken or seriously wrong. Deciphering when it’s this one can be difficult.

I have medication that helps like diclofenac sodium. You get it in either 50mg or 75mg tablets, and can only take up to 150mg per day. It’s kind of like voltaren, but stronger. I take it with food when I can’t handle the pain, and sometimes as a preventative measure if I know I’m about to do something that could cause pain, like being on my feet all day.
I also have amitriptyline which helps me sleep, but can leave me feeling a little groggy in the morning. But without it I’m awake all hours, so you have to weigh these things up. I have found that amitriptyline also helps me with “Brain Fog”, another problem with Fibro.

Ugh. Brain Fog. The worst.
I can forget words, names, basic stuff I should just know. For example, when I was working in Palmerston North, our offices had a pin code you had to enter to get to different parts of the building. I used to enter it about a dozen times a day.
One weekend I went to work and entered the code two or three times, went out to do a promo, came back and entered the pin another few times, and then I got a text from my family who were waiting downstairs. I went and got them and brought them up to the office… only now I suddenly had no idea what the code was.
I had a rough idea of how many digits there were, and where the numbers were located (like three at the bottom, three at the top) but it took about 20 minutes of me trying before I stumbled upon it, and then another 20 for me to work out what the code was so that I could enter it next time.
Frustrating.
Another part of the Fog causes confusion. Words gets muddled, I’ll say stupid things, or make really stupid mistakes. Think about the last time you were drunk. Yup, that’s me.

Fatigue also drives me crazy. I’m tired all of the time. I can draw energy from somewhere to get my work done, but sometimes just getting up out of a chair, or even out of bed in the morning, takes all the strength that I have. People mistake it for laziness which is also frustrating. I remember being all amped to go to the gym after work one day, I jumped in the car, pulled into their car park and then found I was completely unable to get out. Even when I eventually drove home, I sat in the car, just trying to will myself to open the door and stand up.

Many people get depressed with Fibro. And I’m sure you can understand why. There’s been plenty of times when I have questioned whether I should be working. But only on my really bad days, for the most part I feel fine (you know, except for the pain, tiredness, and that). I feel lucky that I’m not as affected by Fibro as others are, but if you see me limp into a store and then walk out fine, well… that’s Fibromyalgia.

There are many more annoying symptoms, and people with Fibro have to deal with the side effects of medication too. Not fun.
There are also, as I’ve mentioned, many more invisible diseases. We may look fine on the outside, but there’s a war waging on the inside, and sometimes we just need a little patience and understanding.

Well, Colour Me Pink, I’m a Cricket Fan

Rugby is my sport. Has been for years. I don’t miss an All Blacks game, I rarely miss a Super Rugby match, and I am forever playing virtual rugby.
Over the years I have played hockey, gone to every home game (and the odd away) for my favourite basketball team, I’ve gotten up in the middle of the night to watch the All Whites, and I’ve been glued to the TV for the Olympics and Commonwealth Games.
But then there was cricket.
While I understood that there was a lot of passion from supporters, I only ever watched matches when someone else was. It wasn’t something I would watch alone, and while I understood the rules, I didn’t get the excitement.
Until I was introduced to the Northern Knights.

I moved to Hamilton in November, and in my first week back on air there were a couple of interviews with Northern Knights players lined up. I knew enough to be able to prep for it, but I had to go and ask workmates a lot of questions so I could be confident of what I was talking about.
I have to say all of the players I met were great. All were friendly and down to earth, and each one of them made me want to know more about the game they played and loved.

I had been to only one cricket match before in my life that I can remember. It was a charity match with the Crusaders. Yes, they are a rugby team.
So my first official match was the SkyCity Northern Knights vs the Otago Volts at Seddon Park.
The Knights had beaten the Volts in Dunedin the week before. I had no idea how good the Volts were, so had assumed another win at home. While everyone else in our group made predictions on how many runs would be scored, I could only guess based on what was being said around me.
I said plenty of stupid things that night, and found myself understanding all those friends I have that don’t get rugby. I could see my favourite sport through their eyes for the first time.
The Knights didn’t win that night, but I was determined to watch more matches.

The next opportunity came in January.
The Northern Knights had had a couple of losses at the Mount, and were playing their first match at Seddon Park in 2014, this time against the Auckland Aces.
They’d played them only two days earlier in Auckland and won. I took my parents to the game, who know a lot more about cricket than I do, and who also bring chairs and snacks.
Dad explained things without even meaning to. I was starting to see the tactical side of the sport.
As mentioned, I knew the rules of cricket. But this time, I got it.
I also saw the cheeky side of cricket as the Knights made the most of the Ace’s mistakes.
(Side note: I learnt how important it is to be prepared for the weather. I was freezing. Blankets are a must.)
The Knights got the win and I was fully entertained. I loved the match. Flying flashing red wickets, high flying sixes – it was like I was no longer seeing cricket as an outsider, I had stepped through the looking glass into the world of T20.

I had to go to another match.
The Knights had a loss in Christchurch ahead of the Finals Weekend, already locked in at Seddon Park.
Technically they had the home advantage, without it actually being a home match as they’d finished third.
Friday saw the Northern Knights take on the Canterbury Wizards in the preliminary final. The team they had twice played and twice lost to. The winner would take on the Otago Volts the next night.
The losses didn’t curve my optimism for a win. They’d played the Wizards at the Mount, and in Christchurch, but this time they’d be at Seddon Park. Home.
I wore a hoodie, a big jacket, and took a blanket. It was not enough, the wind and cold was brutal. But the match was magnificent.
The Knights batted first and looked confident, setting the bar at 181 runs. 14 4s, 6 6s.
It looks like we had the win in the bag after the Wizards lost some quick wickets. But then came Brownlie, Fulton, and Hira.
In the end it came down to the final ball in the final over.
A 4 for the Wizards would tie the game, which I assumed would mean a few extra overs would need to be played.
A 6 would win it, and send the Wizards into the finals, and the Knights packing.
Scott Kuggeleijn bowled: bat and ball connected and as the red dot of the ball sailed into the air, the pink of the Knights swarmed to where it would fall. Quick to send it back to the wickets, the Knights won by 3 runs, and I was on my feet cheering.

The next day the Northern Knights took on the Otago Volts in the HRV Cup Final.
Bowling first, the Knights showed they were there to win, reducing the Volts to just 143 runs.
But as the match wore on it was looking like anyone’s game. Styris was finally caught, with the Knights needing 33 to win from 21 balls.
In came Scott Kuggeleijn.
“Well, Kuggeleijn was the hero last night with the ball, wasn’t he?” Jeff Wilson observed. “Can he be the hero tonight, with the bat?”
The commentators talked up Mitchell, who was looking ready to do damage.
But it was Kuggeleijn who hit 2 6s and 1 4, scoring 22 from 7.

Knights win.
They’re now off to the Champions League!

And as much as I was stoked for them, and extremely proud of the whole team, I realised that even if they’d lost that match, or the one before, they’d found a fan forever in me.
I am a Northern Knights supporter. I am a cricket fan.

SkyCity Northern Knights

New to Nail Art

This week I had a few days off work and time to myself. I also had a few extra nail polishes that I’d borrowed/ claimed from other family members, and I was inspired to try out some fancy nail art after meeting Jessie from Nailed It NZ earlier in the year. Check out her stuff here!

I decided to try out this particular logo on one nail:
Superman
There is a long story behind that logo, but that’s for another time 🙂

Now let me say that I have no experience with nail art prior to this attempt at Superman’s logo.
The most I have done is French tips (but not well), and black with gold glitter over the top (which only requires patience for the polish to dry).

I had my blue nail polish and I just gave it a go. I did a base coat before painting my left thumbnail blue. But when I went to actually draw the diamond which encloses the ‘S’, I stumbled.
I didn’t have any nail tools. How was I meant to draw something with a normal brush? Impossible.

So I did what any modern day person would do when faced with the unknown… I googled it. And that led me to YouTube, where people were using all sorts of fancy tools to create wonderful art. This at least gave me the idea of how to draw on my nail, but I still didn’t have the answer to “what with?”
So I improvised.

First of all I tried a hair clip. It worked! It look a while as the polish tried to dry on the hairclip, when I was trying to transfer it to the nail, but I still got there.

However when it came to using the yellow over the top of either blue or red, here was a major fail. The yellow was useless. You could hardly see it. Even the red looked bad over blue. So instead, I scratched off the area I needed and re-painted it with the base coat. THEN I layered the yellow and red.

And I’m pretty happy with the way it turned out.
Superman Nail

But here’s the thing. I’m a massive geek. Especially when it comes to superheroes.
So I had a new idea… to have one hand filled with the Justice League (DC), and the other with the Avengers (Marvel).
I drew up a rough idea of what I wanted to paint, thanks to other nail images I found online. Here are my sketches:
nail plan

The drawn plan wasn’t just so I knew what image I was doing. It was also to plan out which hero was on which nail. Firstly DC for the left hand, Marvel for the right. Then I tried to match the colours as best as possible: index is yellow, middle has blue, next is green, and finally the pinkys’ would have bolts (so not matching colours but matching images). This is also true for the middle finger. Both with stars, both with similar designs.

I painted the base colours on all of them first. When it came to adding the next layer, this is where I found some issues. Again the yellow wasn’t strong enough on its own, so I used a white pen that I had for French tips and used that underneath any yellow that was required. The pen also came in handy for stars and under Flash’s bolt.

An old earring (missing its partner) did most of the details, like lines and bolts. I regretted using the hairclip for Batman’s logo, as I think the earring would have made it a lot better, but here is the final result for all of the designs.
superhero nails

As a first timer, I think it’s pretty cool.
It was both easier and harder than I imagined and I would encourage everyone to give it a go. It doesn’t have to be superheroes! It’s amazing what can fit on a tiny nail, and it was a pretty cool project for a few slow days.

What Shall We Do With the Drunken Drivers?

A couple of days ago I got a text message from a friend asking if I’d seen his Facebook post.
No, but it didn’t take long to find which one he was talking about!

“Feeling bruised sore but VERY VERY THANKFUL!!!!” said the first post, and after that he had shared an explanation from his wife. Part of it reads, “our Prado was hit by a drunk driver as we drove through Mangaweka causing it to 360 roll, coming to a stop in front of oncoming traffic”.

After chatting via text I found out how extremely lucky they, and their three children, were to be alive. The offending driver was three times over the legal limit and on drugs. He was also driving while disqualified, something he had been jailed for twice before.

The drunk driver didn’t have a scratch on him, and thankfully the worst injury in my friend’s family was a broken leg. Their son will have to spend his thirteenth birthday in a full leg cast.

The whole situation makes me both thankful and extremely angry.

How was this man able to get behind the wheel drunk? Again, and again? And will anything of consequence happen this time?

According to our NZ law, if you “are convicted of a third or subsequent offence, you will be
disqualified from driving for more than 1 year and either fined up to $6000 or imprisoned for up to 2 years.”
Futher, “If you cause injury or death when driving carelessly while under the influence of alcohol or drugs, you will be disqualified and either fined up to $10,000 or sentenced to prison. Where a breath or blood test shows you were over the legal limit or shows evidence of the use of a controlled drug, you will be disqualified and either fined up to $20,000 or imprisoned for up to 5 years.” More here.

Already there are devices to stop you being able to drive if you are over the limit. A quick google check says we have this in New Zealand. I wonder how many people actually have them installed.

I like the idea of your licence and car working together in future, using the barcode on your driver’s licence to give the ok for a car to start. This could potentially be good for stopping those without licences, thieves without permission, and learners without supervisors.
Car companies – please start working on this.

But what can we do?
For a start, we can re-educate our family, friends, and the next generation.
When many of us get behind the wheel, we only think of our own driving, without considering that others could be affected by our choices.

I fear our drink driving issues won’t be resolved until our drinking culture is. Something that is a long way off from being healthy.

Please, please be careful on the roads. And don’t ever drink and drive.

2013 Goal: Complete

At the start of 2013, I made a New Year’s Resolution with a friend, about getting more creative.
The idea we agreed on was that every week I would write a creative story.

I felt a little rusty at the start of the year, and sometimes words flowed, other times my brain seemed to stall, but after 52 weeks, the resolution is complete.
All of the stories were written on the day they were posted, and the only editing I did after hitting the “publish” button was to correct spelling.

I’m not one to make goals like this, but I recommend it to everyone.
It doesn’t have to be a story, it doesn’t have to be creative, and it doesn’t have to be weekly. But a goal which you can tick off at the end of the year as being complete creates a pretty awesome feeling.

For those with similar resolutions for 2014, I wish you good luck.