Thursday, June 30, 2011

On the Spoon Theory

As many of you know, I have been dealing with excessively draining and frustrating gastrointestinal issues for the past few months. It has been taxing on my school/work life, my personal life and put a dent in my normally very positive and upbeat personality. It's hard to keep your energy levels up when you're constantly puking or sitting on the toilet.

As if the constant fatigue and frustration at not understanding what's going on in your body isn't enough to deal with, there's also the stress. Stress related to being sick and not knowing why, the stress (on your mind, body, soul) of being sick all the time, the stress of the fear of eating because even "safe" foods don't always stay down, the stress of deadlines getting closer and closer and not being able to work on them, the stress of potentially letting people down, the stress of disappointing friends, families and colleagues when you do let them down because you haven't been able to meet the aforementioned deadlines, the stress of life continuing around you while you're stuck in the same spot day after day, the stress of pushing people away with your continual rants at being sick, tired, frustrated, etc., the stress of being stressed and knowing that stress is just making everything worse...

There's a lot of stress involved. And despite being tired and feeling sick, you try to make it work. You try to meet those deadlines and hang out with friends without being a downer. You try not to feel bummed or like a bum all the time. You try to catch up on sleep to try to counter the fatigue but the pain, nausea, and sickness (and fear of being so sick that you need help but having no one around to help you and not being able to call for anyone before it's too late)... all this stress prevents you from recovering. At least if you could sleep well, you'd feel better, right? So far, catching up on sleep has not made much of a difference. It gives me productive half days where I can ignore the fear of impending sickness but once all my symptoms hit by mid-afternoon, I feel just as tired as if I hadn't slept at all the night before.

It's taxing. It's frustrating. But it's hard to explain to others how draining it is to be sick every day without sounding like a wimp or a whiner.

Last night, one of my Twitter friends introduced me to The Spoon Theory. Having dealt with her share of taxing chronic illness, she thought Spoon Theory might help me cope with the difficulty of understanding and explaining what was going on. She was right.

The Spoon Theory was developed by Christine Miserandino when her closest friend, who had been with her through a variety of Lupus-related situations outside the normal day-to-day activities of normal young adults, asked her what it felt like to be sick. Thinking her friend was asking about the medical definition of having Lupus, Christine confusedly went through the symptoms and health repercussions. When her friend specified that she was seeking to understand the embodied experience of chronic illness, Spoon Theory was born.

Here's a 3-paragraph extract from Christine's amazing Spoon Theory article:

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I highly suggest that you click through and read the whole article. It's a quick but well-packed piece that does the best job at accurately representing what it feels like, day-to-day, to have a chronic illness or chronic pain or even a mental health issue such as depression.

Reading about Spoon Theory late last night helped me relax. It filled me with hope for a resolution, which is what I should've been feeling after a very positive appointment with a new doctor who actually listened to me and believed what I was saying about the changes in my body and ordered a whole bunch of diagnostic tests. But getting sick that evening had once again put a damper on things. The spoons I'd gained had been lost, so to speak.

But Spoon Theory has helped me accept that this might be a reality for me. It also helped me see that it might not. Either way, Spoon Theory helped me remember something very very important: I have more spoons than most people, and for that, I am very thankful.

I have an excellent support system, friends that aren't tuning me out when I rant (again!) about feeling sick and tired and frustrated but instead are concerned about me. I hope that by sharing The Spoon Theory with them, they will better be able to understand why I feel panicked about not being able to meet my deadlines and can't always accept their very generous home-cooked dinner invitations even though I really really want to. I love you just for offering and I don't like turning you down but sometimes, the best thing I can do for me is to save a spoon so I fall asleep with little to no pain or drama.

Hopefully, all of this will be resolved soon. I know I'll feel a whole lot better when I finally know what I have. Then, I can start to count my daily spoons and deal with it.

Tuesday, June 21, 2011

On extended deadlines

Ah, deadlines! Can't live with them, can't live without them! You know me. I thrive under pressure. I love love love deadlines. They don't, however, always love me.

Sometimes, a deadline is scheduled for the most inopportune time. For example, the 2011 World Partnership Walk fundraising deadline was set to June 15, which didn't give a busy graduate student like me much time to build momentum and really reach out to my usual donors. Luckily, that deadline was extended to June 30! So you've got 9 more days to contribute to ending global poverty by donating now:

100% of your donation, as you know, goes directly to longterm sustainable international development solutions that consider the environment and gender equality while dealing with core areas like health, education, community engagement, and fostering the development of civil societies.

These programmes are not cookie-cutter solutions. Instead, the Aga Khan Development Network, along with receptive government agencies and local partners, go to the affected communities and ask them what they need the most. Then, they help them develop the right solution for that village, train them to implement it themselves, and give them the resources to succeed and then teach this skill to surrounding villages in need.

It's a smart way to make sure everyone feels empowered and committed to improving their own lives and livelihoods. Yeah, it's pretty awesome. So today, tomorrow, or some time before the end of June, please donate to the World Partnership Walk and help me reach my $2,500 fundraising goal! I'm about halfway there and would love to see that fundraising thermometer animation overflow! Last year, I raised $2,000 with your help so I know we can make it happen!

When I walked the 5K Walk in Ottawa on June 12 - despite having a bad case of stomach flu - the organisers announced that Ottawa had reached its fundraising target. And, our team, the Kingston Hope-Raisers, won one of the Top Team awards! So far in 2011, the World Partnership Walk has raised over $6 million dollars across Canada! Click here to donate now and be a part of the solution to global poverty.

Together, we can change the world, one step at a time.

Please help me raise funds for the World Partnership Walk:
Thanks so much for your continued support!

Tuesday, June 07, 2011

On #NASSM2011 (and more!)

This past week, I went to my first ever North American Society for Sport Management Conference. I also gave my first ever national/international academic presentation. It was the first time I stayed in a college dorm. And it was my first trip to London, ON.

What a week it was! I met many new people, made new friends and new contacts and learned a lot of new things about all kinds of new topics. I stressed over my presentation and cut, cut, cut it down to a quick, 17-minute talk... only 2 minutes over the recommended 15-minute "presentation" portion of the 20-minute time slot. My roommate and I had a blast in the not-so-stellar dorms at the University of Western Ontario, and one of my new friends' intense Vancouver Canucks fandom made for awesome game-watching experiences.

Apart from that? It was nice to know that NASSM 2011 was the end of my huge end-of-term academic rush. Now, I get to focus on writing my thesis proposal and three papers I've been asked to contribute to as part of my Research Assistanceship work for two different profs. I'm looking forward to more work/life balance (read "fun") and I can't wait to soak up the sun.

In other life news, I am most definitely lactose intolerant, and it's much more serious than I thought it was as even drinking "lactose-free" milk really does a number on my GI system. So I'm taking lactase pills with just about every meal (including my morning cereal) and will be switching to Almond Milk if I can deal with the sweetness levels of the unsweetened variety. There's also some other stuff going on there, so hopefully this week's doctor's appointment will help sort it all out. It's looking like pills for life though, which sucks.

On a more positive note, I am now officially one of the organizers of Limestone New Media Group in Kingston, ON. This comes after giving a presentation on Social Media and Non-Profits during the March meeting and being a guest co-host on the second ever LNMG podcast to discuss my Facebook situation and the implications of those kinds of actions. I'm looking forward to the June meetup and mingling with even more new-to-me Kingston locals!

Finally, I should probably mention that at the NASSM 2011 Student Luncheon, I was voted in as one of three student board members! This means that I will get to organize at least one initiative for NASSM 2012 in Seattle next May. Exciting!! I also hope that I'll be able to increase the amount of communications between students in and with the NASSM community, as well as improve year-long mentoring opportunities. I guess between this and my RA position as NASSS 2011 Advertising & Exhibits Manager, I've got my work cut out for me!

So... Who wants to go to a movie?