Are we Doing the Dubstep? One Step Forward and Two Steps Back

 

I signed off from my last blog post with such enthusiasm that I felt as though I was untouchable. A new sense of hope and optimism were here to stay! The truth about chronic illness though, is that it never really disappears. Even when it is well-controlled, the chronic illness is still there, at the base of your physical being.

Me and Zoom

Those of you who live with a chronic illness know how frustrating it can be when people try to offer ‘tips’ with regards to how you can possibly improve your health. These tips range from “are you getting enough sleep?” to “Maybe drinking more water will help”, and “Maybe changing your diet can improve things.” I know that people mean well when they give me suggestions with how to manage my epilepsy, but it can be somewhat frustrating when they do not understand the nature of the condition and how it affects me. One thing that really frustrates me, even though it comes from the goodness of people’s hearts, is when people ask me if my seizures have stopped. This is a completely valid question, because as a friend of someone with diabetes, and as a friend with other chronic conditions, I want to know that that person is safe and has everything that they need. On the other hand, it feels less pleasant when someone asks me that question simply for the peace of their own mind. It is also frustrating when it seems as though the person expects the answer to be ‘yes’ every time they ask it.

 

Beautiful Cherry Blossoms

The truth is, folks, sometimes I can’t guarantee a ‘yes’ to that question. Trust me, I would love to, but when asked simply for your own peace of mind it makes me feel even worse that something that is uncontrolled and ongoing is not in control. It makes me feel even worse about it. Also, let’s face it: I am a bit of a control freak, so having a condition that I can’t control drives me bonkers! Also, being asked why I’m still having seizures drives me up the wall! If I knew, I would tell you! If I could, I would have a brain surgeon look into my brain and magically make everything all better!

 

Anyways, one thing about epilepsy, along with many other chronic illnesses (and life in general) is that you have to constantly calculate your risk of doing certain activities. Essentially, every activity has some form of calculated risk involved. Some activities, such as sitting on the couch, are pretty low risk, whereas other activities, such as driving a car, are high risk. Lately, I have had to decide what kinds of activities I can partake in, based on whether they are low or high risk. Just yesterday (Wednesday, July 1) I was taking my dog out for a walk. Even though it was a pretty warm day, I was cautious and made sure that my dog, Zoom wasn’t too hot or uncomfortable. It was my favourite walk, and even though I felt a little tired when I woke up in the morning, I have this thing where I absolutely have to exercise every single day, even when I’m a bit tired. Some call me disciplined, others call me crazy.

 

A summer storm

I was starting to show signs of exhaustion, so I decided to cut my walk short. As I was crossing a small road (not a lot of traffic) so I could walk on the shouldered portion for pedestrians, I started to feel a little funny. All of my limbs went completely rigid, and even though I tried to break my fall, I fell face forward on to the gravel. What was worse was that there was a lady with a small child standing nearby, and I could tell that she was debating whether she should come help me. I was listening to my ipod and had giant hipster sunglasses on, so it was hard to make out any emotion on my face. Plus, my breathing was a little heavy and probably sounded a little weird to an onlooker.

 

I managed to gather myself up, but I was angry. I was angry that the onlooker just stared at me while I continued to seize. She could at least look away. Later I told my friend about that, and he told that not everyone has the instinct to help. Some people will dive in right away and try to help people when in need, while others draw back and walk away. Ultimately, I made it home safe, but the seizures continued. This part of ‘chronic’ illness is the real kicker: it never really goes away! Needless to say, my energy dropped to an all-time low and I couldn’t believe that I am still the same person who climbed to a lookout on a mountain just a few days a go. Even though I am still exhausted from the seizures, I know that the positive and optimistic person is still inside of me, and I am doing what’s best for me to get better. I am just trying to be mindful, and stay in the moment of how I’m feeling and where I’m at in my recovery. I know that my body is thanking me. It also helps knowing that people can connect are relate to my stories.

Thank you for reading my stories, and  please leave a comment because I would LOVE to hear your thoughts! xox

 

Dancing like there’s no tomorrow

Also thanks to http://www.psychologytoday.com/blog/turning-straw-gold/201208/more-what-those-chronic-pain-or-illness-don-t-want-hear-you-say on thoughts about chronic illness!

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One thought on “Are we Doing the Dubstep? One Step Forward and Two Steps Back”

  1. Sita, Thanks so much for this writing. I’ve wondered how epilepsy impacted your mental state and you write a very thorough explanation. Living in the moment is a valuable lesson not just for people facing chronic illnesses but for everyone. Love Carol

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