This is a pretty frivolous post. It’s also pointless, silly, and a little dorky. But I’m going with it, because it’s also a happy post. And happy is always a good thing to be.
This, my friends, is Rasta Joe.
Yes, he really is a Rastafarian Monkey. While he may not be real, he does speak to me—in the same way a cute kitten or a funny joke does, at least. He makes me smile.
You see, I went to the local Show a few weeks back with my mother, cousin, Aunt, and Uncle. Being a bit country, we don’t do the show like most town folk would. We start at the cattle, checking out the new breeds, admiring the bulk of the beef stock, and the udders (yep, seriously) of the milkers. Then we check out the machinery, the show jumping, woodchop, and sheep-and-pig pavilion. My must-see is the working dog trials, and mum’s is the fashion parade, so they were scheduled into the day as essentials. By lunch, it’s time for a gawk at the prize bakers and crafters, a quick trip to get show bags, and then some food before home.
Mum doesn’t like flashing lights, and I’m not a fan of heights, so the rides of sideshow alley don’t usually tempt us, but Chica was keen for a couple of games of chance, so we wandered through the buzz and cat-calling. I had a go at the laughing clowns and failed miserably. That was where I’d planned to stop my spending, especially with each game costing five bucks! But then, at the very last tent, sitting among a stack of giant, plush soccer balls, I spied a gigantic Rastafarian gorilla. I had to make it mine.
Balloon darts. Easy! A little known fact for you: I’m strangely adept at darts. I step up to the mark, pay my ten dollars for five shots, and let rip. Thirty-four points! The big fella is worth three hundred. But, the carnie informs me, his little brother is only fifty, and she’ll give me two free darts if I play again. I spot the little Rasta monkey and fall in love. Another ten dollars, up to the line I go. This time I come away with forty-eight points. Combining my scores, I’ve cleared the fifty easily, and she tries to tempt me with a more fabulous prize—perhaps a pink frog, or a rather bulbous giraffe? Not a chance, lady! I sacrifice my extra points and reach for the dopey-eyed fella who has won my heart.
He came home with me, and now greets me every morning with his half-baked stare. Love him? How could I not?
Tonight, I thought I might share with you how Heidielka came to be named. It’s not a normal name, and it’s not really my name, if you hadn’t already guessed. I’m Heidi, but Heidielka, well she’s me as well, just a friendlier version.
I like nicknames, but I’m not really a fan of those based around a person’s name, especially if it involved shortening it. For the most part, we all have reasonably easy, short names already. Of course, there are some poor children blessed with a hyphenated, alphabet-vomit of letters to deal with, making every form an epic battle of penmanship. But for the majority of us, it doesn’t get much worse than Ann/Anne or Allan/Allen. So why bother trying to improve on something already pretty good? And for goodness sake, why do it with people you barely know, when a nickname is often a representation of closeness?
With a name like Heidi, you’d think there wouldn’t be too much you can do with it. Wrong. Most of the familiar terms I’ve heard aren’t too bad—Heids, Heidi-Ho, Heidalina—but there are definitely some that are just not cool. I have a serious aversion to people calling me ‘Hide’, mainly because I’m not a verb. And the Flanders’ Hidely Ho thing has been done to death. Seriously, just…no.
My favourite nickname of all, though, was given to me by Wabi, sometime back in high school. Heidielka was born, I think, simply from her love of German, but maybe she can shed some more light on that for me? She’s the only person to have ever called me it, something I never realised until naming this Blog, but it is by far my favourite nickname. In fact, it’s my favourite form of my name. Strong, yet sweet, it sounds almost like a spiced biscuit, or maybe a little German doll.
I’ve run the gamut of blogs—livejournal, blogger, and many others I can’t quite remember—and each had its own unique name. So when it came to conjuring a witty and intelligent name for my new writing space, I spent a while trying to figure out what I was wanting it to be about. I realised what I was after was me, but with a bit extra, and that pretty much exactly what Heidielka is, right? It fit perfectly.
So there you have it. I’m not sure you were wondering, but in case you were, that’s how Heidielka came to be called, well, Heidielka. All thanks to Wabi and her clever word-nerdage.
How do you feel about nicknames? Any favourites, or pet-hates?
Sooo…It turns out getting back into daily blogging isn’t as easy as I thought. I should have realised that.
You see, I’ve spent the last few weeks trying very hard to use my computer less. It’s been successful to some extent. I’ve had runs of up to three days when I haven’t touched my laptop at all…buuuut these have usually been on days when I’m already overrun with tasks and too exhausted to even consider digital communication by the time I have a free minute. So maybe I cheated a little. BUT, the it has been good to reduce my usage, and not rely on the internet to keep me company when I couldn’t sleep.
Down side: less reliance, means much easier to skip blogging.
I’ll find a happy medium, I’m sure. In the mean time, here’s a song from a Glaswegian band called Admiral Fallow. I heard it on an episode of The Big C (watch out for a future blog-rave on said show). Anyways, the lyrics instantly had me hooked. Not to mention I have a soft spot for beautiful Scottish voices.
Watch. Listen. Love.
So yesterday’s post was a bit of a downer…
Coming off two days stuck in bed, barely able to move and too exhausted to stay awake more than a half-hour at a time, I was feeling pretty sorry for myself. I have days like that.
I have days when my wrists are so weak I can’t lift anything heavier than a box of tissues.
I have days when swimming even two laps of the pool leaves me breathless (I used to do two kilometres, no worries).
I have days when even showering feels like an epic journey.
I have days when talking seems like a skill I’m yet to fully grasp.
On these days, the world seems an impossibility, and the mere act of being awake becomes an achievement. I get frustrated, and angry, and upset with my useless body. And I cry a lot. And yell a bit. And fret at what tomorrow will bring.
But those days, as hard as they are, make days like today—when I could move and exist at about eighty percent—such an joy. On days like today I get to revel in my body’s ability to do things I used to take for granted. Things like chopping things really fast, holding a friend’s sweet, big-eyed baby boy, and dancing.
Because life would be so utterly horrid if I could never dance again—even if my skills lack the finesse of this guy:
So here’s the thing: I disappeared for a long time. I never meant it to happen. I just kind of stopped writing one day. I honestly don’t know what made me stop but, after thinking about it, I know why I stopped. The what and the why are two very different things, believe it or not. The what is the part of me that made me stop—I can’t decide if it was my head or my heart. Maybe it was both. The why, on the other hand, is obvious, and exceedingly frustrating: I have Myalgic Encephomyelitis (ME).
The less fancy (and less scary) name for ME is probably one you’ll have heard of—Chronic Fatigue Syndrome (CFS). The names are pretty much interchangeable, but they both boil down to the same thing, which is essentially a condition affecting the immune and central nervous systems. There’s no definitive cause, no specific diagnosis method or treatment, and no way of knowing when/if it is curable. This is all super awesome if, like me, you’re a hyper-control freak who craves neat endings and obvious solutions.
The other brilliant thing, and the reason it can be so hard to diagnose, is that there are fifty recognised symptoms of CFS, all of which may appear with a number of other illnesses, and none of which appear in unique pattern amongst CFS sufferers. Way to be vague and unhelpful, body! Added to this is the fact that symptoms can show up all at once or appear slowly over time, they can range from slightly irritating to completely incapacitating, and the degree to which each affects you can be dependant simply on the weather, the time of day, or even the previous day’s activities.
I don’t want to go on too much about CFS, a lot of it is just lists of symptoms and depressing statistics on the likelihood of having other irritating side-conditions (like Fibromyalgia, Irritable Bowel Syndrome, and Depression). The reason I’m sharing this, is because I’ve discovered CFS is the reason I disappeared.
I’ve been really not well for over four years now. I’ve spent thousands of dollars on doctors, specialists, medications, and scans. I’ve wasted hours in waiting rooms, and driving to appointments. And I’ve spent so many nights crying myself to sleep because it all just felt so hopeless. Then, last year, I thought I’d found the answer. I had gall stones, so I had my gall bladder removed. I figured that was that, and I’d start to feel better. In fact, I remember being so relieved I laughed when the doctor told me, because finally I had some semblance of an answer.
But I didn’t get better. I was still tired and sore all the time. I woke up feeling like I’d run a marathon, and my heart would race simply bending down to lace my shoes. So I kept going back to the doctor, I kept looking for an answer. Then, last month, suddenly I had one. And not just any one, but one that made sense.
I’ve spent these past few years telling myself, and friends and family, that all I wanted was an answer that fit, something that made sense. I’ve said over and over that once I had an answer I’d be ok, because I could start fixing things. And I’m still saying that…But I’m not buying it. Because with CFS all you get is an answer.
I wanted an answer so I could get better, so I could start fixing the problem. I wanted to do what I do with a skirt hem that’s loose, or a dodgy shelf—find the problem, create the solution. But here’s the thing: with CFS there isn’t a solution. There are things I can do to make it easier, methods of treating various symptoms so that they’re not as severe. There are things called ‘pacing plans’ and advice on vitamins and exercise. But essentially, there’s no guaranteed way to ensure I get back to one hundred percent, there’s simply possibility. And this scares me, probably more than not having an answer.
I’ve spent the last month going out with friends and smiling, and saying I’m doing ok, that things will get better now. I’ve been looking for work, and talking about future plans. And then I’ve gone to bed and lay there terrified that I’m not actually capable of holding down a full time job, and that my future plans involve living with my parents and working at the corner store. And I’ve ignored Heidielka because it was one less place I had to pretend to be ok.
But I’m sick of pretending. And, more than anything, I miss writing. There’ll be posts from time to time about CFS, and I’ve found some really interesting things on biogenetics and viruses that I’ll probably drone on about at some point. But for the most part Heidielka will still be crammed with fashion loves, cool music, and wonderful artworks.
So I’m back. Did you miss me?