Life, reality and fairy dust

I get a fair amount of emails and messages from people wondering what my secret is, where I buy my fairy dust. They want to know how I manage to be bright and cheery when things in my life are on the stormy side.

Ha!

You want to know how I always stay so positive?

I don’t.

You guys, there is a reason I haven’t written a new post in almost a month now, and it’s not because I’ve been off gallivanting. It’s because I’ve been in a bad mood for pretty much three weeks straight. It’s because I’ve had nothing to write beyond “I’m really bummed out and everything sucks” and I know I can keep it real here, but I like to think I’ve set a higher standard on this page than a seven word post.

I’ve just been frustrated lately. Discouraged. Defeated. And did I mention frustrated?

It started when I found out that I’m looking at a 12 to 16 month wait for a follow up appointment that was supposed to happen last fall, plus another referral that was supposed to be put through in December never actually went through. Next I learned my extended health won’t cover something because I have Ehlers-Danlos Syndrome and not arthritis. After that the government deducted from my disability payment for no clear reason. Then my car died beyond repair. There is also the issue of my most expensive medication no longer being covered and even after four hours on the phone and six retellings of the whole situation, it’s still up in the air.

Plus of course there are some new symptoms, some worsening of other symptoms and some more baffled looks from my doctors.

And I’m really struggling lately not to feel angry and let down by the healthcare system here. I hate when I feel like this because I really do believe in the idea of universal healthcare, but it’s hard when people in other countries, and actually even in other provinces across this country, don’t seem to have to fight as much and wait as long as you do. It’s even harder when they have access to services and treatments that are unavailable to you altogether.

Life has just been a little too much lately and I haven’t had the energy for anything extra so I’ve kind of been hiding out.

It’s called turtle time. At least it is now. Patent pending.

And there’s my negative story for you.

Here’s where it starts to turn around.

Before I continue, you should probably know that I have this random interest in random holidays. It’s not uncommon for me to text someone along the lines of, “Happy Day After New Year’s Day (observed – New Zealand)!” or, “FYI it’s Showa Day in Japan today.” I love learning what all these different days are about and how they came to be.

A while back I was texting with my bestie about upcoming Earth Day, except that Earth Day was auto-corrected to warty day. Kind of gross, sure, but we thought this was hilarious and so then of course we said we will have to recognize warty day, too. When Holly asked me when it should be I randomly yet officially picked May 5. I later realized this was already Cinco de Mayo (duh) and less obviously also Children’s Day in Japan, but official is official.

By the way guys, we know we’re really weird. Just go with it.

Yesterday morning, I texted Holly to wish her a Happy Warty Day, which of course is not a significant day at all except for the fact that it made us laugh. I asked her what her plans were and if we could celebrate. Thursday is often her only day off all week, and the only reason she never works on Thursday is because she volunteers overnight at the crisis line, so when she told me she also had an appointment yesterday afternoon but could pop over after, I almost said no.

All of my “don’t be a hassle on anyone” chronic illness instincts told me to just say never mind, but my “I’m having a tough time” human instincts told me that I really just needed my best friend to make things better. Remembering that my focus on the word branch this year includes reaching out even when I feel like hiding, I said yes.

IMG_4860So Holly drove over to my house, and since we both adore baby geese, we popped Julio (my wheelchair) into her 1998 minivan (just to give you an idea of how cool we really are), and we drove to a nearby park to see the goslings. The scenery, weather and company were perfect. Plus the goslings were fluffy, clumsy and adorable. It was the most wonderful Warty Day there ever was. It was also the only Warty Day there ever was, but still.

I don’t have a magic answer for how to stay positive, but this story is the closest thing I have to some fairy dust for you right now.

I am most certainly not full of sunshine all the time, not even close. Honestly, I don’t even think that’s healthy, let alone possible. It’s not real, and forcing it gets in the way of genuinely living it. I think you have to feel it all, the good and the bad, and I think that hope is found in spite of the bad, not by pretending it doesn’t exist.

IMG_4858The bad exists. I know because I live through it and so do you. Everyone does. We have no say in that. But I think maybe we’re able to live through it because of what we live for, and that we have some say in.

I live for random made up holidays that come into being because of texting typos, no matter how dermatologically unappealing their names are. I live for gushing over baby geese. I live for hanging out with Holly and Julio, and I live for delighting over the realization that even though I didn’t plan it, their names sound superb together.

I live for all sorts of tiny little things, and when I need to, I let these tiny little things become everything.

It’s not a perfect plan, but it’s all I’ve got for now. There is no perfect plan. There’s just life. Life and reality. And tiny little things that turn into bits of fairy dust.

It’s not perfect, but I’m hoping it’s enough anyway.

IMG_4883

 

 

13 thoughts on “Life, reality and fairy dust

  1. Pingback: What would you do if…? Continued trial | From guestwriters

  2. Please be reassured Mrs Hippygeek that you and Catherine are not the only ones who name their chairs. A lot of my friends do. Some of their chairs have been named Kermit and Ethel. My chair is no official name but it has been referred to as “the Green Machine” because of its gorgeous shade of rich, bright, cheerful, fresh grass green.
    As for fairy dust, often the littlest things make the biggest difference to one’s quality of life. Sometimes what seems minor to one person is VERY important to others. I don’t expect others to understand why some seemingly little things are important in my life, but I do expect others to respect and accept these needs. Wishing you and everyone plenty of fairy dust every day (and afterwards, the little fairies to come along with the vaccuum to clean it all up – I hate housework because I am allergic to regular dust – ready for a fresh batch of fun fairy dust the morning after!)
    Keep smiling and bless best friends xx

    • Yes! I name my cars, too! I used to think naming inanimate objects was weird, but then some coworkers turned friends thought I was the weird one for not naming them, so they changed my mind. I think when these chairs or other mobility aids and medical devices are so ingrained in our lives they are more than just nameless objects, but rather inanimate friends 🙂

  3. I needed this! So often I get the same too: “you’re so positive!”, dealing with multiple crappy conditions. I am quick to remind people that maybe they should come over to my house and hear me have multiple little hissy fits at my inability to tolerate my J feeds or the other conditions that fail to behave. But it’s easy to let the hissy fits take over and I’m so incredibly grateful for so many little things, that also include the fact that yes, in New Zealand we have a national holiday on 2 January.(I thought every country was the same?) Go NZ 🙂

    • You bring up such a good point – how we appear to others is not an accurate reflection of how we are within the four walls of our house. And haha no! We don’t have a day after new year’s day here!

  4. I needed this! It’s been rough over here lately too, but oh the little things! They are the absolute best!! At the moment I am living for puppy cuddles and meeting a friend’s baby boy tomorrow! 💙

  5. Its okay to have bad days, and weeks for a while. It is often in the darkest of our times that we are reminded of the little small pockets of happiness. I admire your strength and your resilience for pulling through. What I know is, you are brave, braver than you think. Keep writing, I have been reading your posts for a while. Even if you’ve nothing to write, or a good idea, pose some questions about how people live or work in different health cares of the world, or simply how they celebrate their ‘warty’ days. I loved how you coined a phrase for different days randomly. Sounds like a perfect thing to pull off! Kudos!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s