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.


Jackie said...

I think I mentioned Meghan Telpner when we had lunch at the Ceeb - she is a fab (& totally fun) holistic nutritionist here in TO.

Part of her philosophy is healing (digestive issues especially) with food. She was diagnosed with Crohn's and cured herself without meds (you can read her story in full in her ebook:

Even as someone who doesn't suffer from serious digestive problems, I can say that reading her blog & going to her classes has made a big difference on how I eat and how I feel.

Check her out.

Naila J. said...

Thanks for the link! I'll definitely check it out. I'm pretty sure that once everything is diagnosed, I'm going to have to see a dietician, if only to learn which foods are "safe". Thankfully, my programme is full of them ;)

Koopy said...

Thanks for sharing and being open about a difficult topic in your life. Here's hoping for an entire drawer full of spoons for you in the future!

Naila J. said...

That would be lovely! I'm a huge fan of spoons :)