How I found my new career, take two

I used to be a really good hula hooper. Seriously, I would win hula hoop contests. Still, I never envisioned making a career out of it. Instead, when I was in grade one I wanted to be a teacher.

IMG_2415

When I was in grade two I wanted to be an author, and then I honestly don’t know ‘what I wanted to be when I grew up’ for the rest of elementary school, but eventually I made up my mind. I wanted to go into occupational therapy (OT).

It turns out, though, that I’m a bit of a career chameleon because as you know last fall I decided my true calling in life was to be a lady in waiting. And as great as I look as a lady in waiting…

Lady in waiting

…I’m now adding another new career to the list. Since my lady in waiting dress was very expensive (don’t even get me started on how much that tiara set me back!), I’m still going to do that gig part time, but I’m also adding in another part time job as a…drumroll please….

Hoop jumper! Professional hoop jumper that is, because amateur status just does not pay enough, and as I mentioned, that tiara really set me back. Plus professional status comes with health benefits.

So anyway, earlier this year I was doing the whole #oneword thing except that I was picking a new word each month instead of picking one for the whole year. After picking the word advocate for March, I decided it should be my main focus for the rest of the year. And in case you don’t know what it means to be an advocate I will save you from looking up the definition by telling you that an advocate is synonymous with a hoop jumper.

Alright, now in my post Have Wheels Will Travel I mentioned that I was jumping through a lot of hoops in trying to get my own wheelchair, but that it was a story for another day. Well, ladies and gentleman, that ‘another day’ has arrived. It’s really not a very exciting story, though, so here is a (very) simplified version.

The story starts with me waiting on hold for an hour (speaker phone and Tetris for the win), and then learning that in order to have a wheelchair covered under my health benefits I would be mailed special forms that needed to be filled out by my doctor and an OT. That conversation happened on May 27.

The story ends with me having an incredibly lovely and positive visit from an OT. That happened on July 20.

And what happened during those two months in between? Well, I made a lot of phone calls, weaved my way through a lot of automated phone menus and was sent on many wild goose telephone chases. I was told “I don’t know, try calling this number” at least a half dozen times, and whenever I finally thought I was getting somewhere, I would then be forgotten about for a week (or three). Basically, I have spent the last two months working very hard in both my job as a lady in waiting and my job as a hoop jumper. In fact, it’s during the last two months that I’ve moved up in the world of hoop jumping from an amateur to a professional.

The important thing is that earlier this week I had a really great appointment with an OT and a mobility and seating consultant who I will refer to as ‘my wheelchair guy’ from here on out. Unlike many of the people I encountered on my wild goose telephone chases, they both knew exactly what needed to be done and how to do it. The assessment is done, the paperwork is done, and as far as they know my wheelchair will be covered (I told you professional hoop jumping came with health benefits!). Now all I have to do is…you guessed it…wait. Best guess is about a three month wait.

Good thing my lady in waiting skills are top notch.

And after this whole process, my hoop jumping skills are pretty top notch as well. Hoop jumping is harder than it looks. It can be very confusing at times…

IMG_2340IMG_2300IMG_2290

…but it’s really rewarding when you find your way through!

IMG_2080IMG_2320IMG_2330

There is really fine line, especially when navigating a public healthcare system, between being an advocate for yourself and being an annoying and impatient patient. I’m still working on finding that balance and I almost always end up being overly patient, but I’m learning. I’m learning that it’s okay to ask for what I need. I’m learning that if I don’t follow-up then I may fall through the cracks. I’m learning that if I’m not persistent I’m the one that loses out and so I owe it to myself to keep at it. Health care workers have hundreds and thousands of patients’ health to worry about as part of their jobs but my job is just to worry about my own health. I’m learning that I don’t need to feel guilty that part of doing my own job is needing other people to do theirs.

Not all hoops are worth jumping through. You have to decide if whatever jumping through hoops will cost you, whether it be actual money or just time and energy, is worth the savings it will bring. I have to tell you, though, that if it comes down to wondering whether or not you yourself are worth jumping through hoops for, you are.

Trust me. After all, I am a pro.

IMG_2040

Oh and one more pro tip for you – if you have a feeding tube, hula hoop at your own risk!

You’re doing a good job

I’ve written a few pieces for The Mighty lately, a website aimed towards people touched by illness and disability, however a lot of their stories are great reads for any audience. This piece went up yesterday and while I wrote it with readers of The Mighty in mind, I’m sharing it here, too, because everyone could use a little encouragement from time to time! So here it is…

My doctor sat at his desk facing his computer as he read through my chart and got updated on the various specialists I’d seen and the tests I’d had done since my last appointment with him.

He turned around and said, “So pretty much you’ve become a professional patient.”

It’s true. I’ve seen several new specialists lately and am waiting to see a few more. This is a good thing, because it means that after years of trying to politely convince my doctors that there are other things going on, I’m finally getting somewhere. I don’t yet know exactly where that somewhere is, but I’m happy to be on my way all the same and I’m thankful for the understanding and committed doctors who are helping me get there.

But it’s still hard. I’m tired of waiting months for appointments to come up. I’m tired of playing trial and error with new medications. I’m tired of day in and day out just not feeling well. I expressed this frustration to my doctor although I knew there was nothing he could do about it. What he said, however, actually did help.

He said, “I know. But you’re doing a good job and I think you’re handling everything really well.”

It was the perfect thing to say. There was no pressure that I put on a brave face. There was no expectation that I be upbeat and optimistic all the time. There was no dismissal with false hope or empty consolation.

Instead, there was awareness of the “chronic” part of chronic illness. There was permission to be realistic. There was understanding that I was weary and there was validation that even though sometimes it seemed as if I was stuck in one place, weighted down by my illness, I was actually still moving forward.

And because of all that I also felt encouraged. I was doing a good job. I could keep doing that.

It was exactly what I needed to hear and I can’t help but think that maybe you need to hear it, too.

Thumbs up for doing a good job!

So I want to tell you that you’re doing a good job.

Maybe, like me, you are facing a chronic illness or disability. When you feel like you’re running around in circles searching for a diagnosis, you are advocating for yourself. When you struggle through difficult treatments and procedures, you are giving yourself a chance at a better future. And when you find yourself facing a feeding tube, a wheelchair or any other medical device, you are working within your limitations to be as well as possible and live a life as full as possible. You’re doing a good job.

Maybe you love for and care for someone with a chronic illness or disability. When you are breaking down the walls of your comfort zone in order to learn to care for your loved one, you are working to accept your new normal. When you are putting in hours of planning and preparation to help your loved one carry on with life as normally as possible, you are proving that a challenging life can still be a meaningful one. When you set aside your exhaustion, pain and fear to help your loved one through those feelings of their own, you are teaching them how to be resilient. You’re doing a good job.

We’ve all got something. It doesn’t even have to be illness or disability. We all have things in our lives that are hard.

Sometimes we get defeated. Sometimes we are angry at our circumstances and feel sorry for ourselves. Sometimes we compare ourselves to others and get jealous of those who appear to have it easier. And that’s all okay, because other times our spirits triumph. Other times we choose to laugh instead of cry and choose to be grateful for what we do have instead of bitter about what we’ve lost.  Other times we reach out and take everything we’ve learned through our struggles to help someone else face their own.

We don’t have it all together all the time. We’re not supposed to. But we do what we can. We do our best.

So don’t be afraid to give yourself some credit and acknowledge your own strength. Don’t be afraid to give yourself the affirmation that you need. Whether you are thriving or simply just surviving, you are doing your best.

And you are doing a good job.

Seriously, you've got this!

Let’s be more like babies

Yesterday afternoon I had an appointment with my TPN team at St. Paul’s Hospital and it just so happens that my cousins and their new baby live only a few blocks away from the hospital which means that before my appointment my mom and I were able to stop by for some baby cuddles (and smiles!) which was very fun.

This might sound strange but I found myself really relating to baby Nora. I’ve joked for years that having gastroparesis makes me like a baby in many ways…I don’t do well with solid food, my symptoms are best controlled when I stick to a routine, and everything is worse when I’m tired. Then there are all the similarities between having a feeding tube and being a baby…formula, feeding schedules, liquid medications. Plus just yesterday my dietitian suggested I take Vitamin D drops, the kind that babies take.

Anyway, when we showed up Nora was awake and alert. She smiled a little bit and was really engaged for a short while before she fell into a deep sleep. My mom and cousin started talking about how much energy it takes to grow as quickly as babies do and also how much energy Nora used up being so interactive and engaged for even just a short while. No wonder she was tired.

And then that’s when I had a bit of an ‘ah-ha’ moment.

Simply having a chronic illness and battling with your body all day long leaves you short on energy to begin with. Because of that, I think I notice more clearly and feel more deeply just how much energy day to day life requires. But you don’t have to have a chronic illness to get tired from interacting with other people, concentrating for long periods of time, and keeping on top of everything you have going on. I think we underestimate just how much energy keeping up with life requires.

Since being sick I have a whole new understanding of what tired feels like and try as I might to ignore the fatigue, I don’t have long before my body protests, my symptoms pop up out of nowhere and I have no option but to rest. I don’t have the choice of just pushing through anymore, but I can clearly remember doing so on a regular basis.

I remember back before I was so sick I was always ‘busy.’ When people would ask me how things were going, I would say busy. Busy but good. Busy and tired. And I mean I truly was busy and in involved in a lot of things but it was almost as if being busy and tired was a sign of success. Being tired was a good thing because it meant I was working hard. I would come home from a full day of classes and an evening teaching dance, acknowledge that I was tired and then spend several more hours that night studying anyway. I felt like I had to. Being tired didn’t seem like a good reason to take a break; being tired was more like a constant way of being.

Think about it. I bet you can think of multiple times in just the last week where you were tired yet you ignored it. Maybe, like me, you got irritated with your body for not keeping up. Or maybe you thought you didn’t have enough time to be tired.

But here’s the thing: being tired is not synonymous with being weak. It can be inconvenient and annoying, believe me! I get incredibly frustrated that I don’t have the stamina or energy to do all the things I want to do, but I’m not a lesser person because of that. Being tired is not a character flaw. It’s just a sign that your body is doing the best that it can but that right now it needs a break.

And there is no shame in taking that break. When babies are tired they fall asleep. As far as I know they don’t shame themselves for not being able to keep their eyes open or hold their heads up. Now, I know we’re not babies and that as adults the expectations are different…for example, babies are allowed to fall asleep anywhere whereas for adults it’s not okay to fall asleep in the middle of a meeting at work. Or behind the wheel. It’s also generally not socially acceptable to fall asleep mid-conversation or in the arms of someone you don’t know. And if you’re doubling your weight within a matter of months you should probably get that checked out.

Still, I think we can take a cue from babies. I think we can let ourselves rest more easily.

Of course there are times you have to push through and of course there are times when being tired is worth it. I’m not promoting laziness but I am proposing balance. Being alive is awesome. Learning new things, meeting new people and seeing new places? These are awesome things! But being alive can also be tiring whether you are two months old or fifty years old. That’s just the way it is.

So you know what else is awesome? Letting yourself take a break when you’re tired. If you don’t know how to do this take a look at Nora expertly demonstrating how to take a break.

Nora cuddles

Now doesn’t that look like fun?

Your turn. Because you know what else is awesome? You are. And awesome people deserve a break.