Growing up with chronic pain

A brief glimpse of what it’s like.

Some days I wake up and I stare at my ceiling, feeling the things that I feel, the discomfort traveling around in my body, I feel defeated. I focus on the things that make me happy and try to guide myself away from the harsh reality that my life seems to be sometimes. I reach over and I take the cap off of my medication bottle and I take a pill, sometimes two, and I try not to think about how long I’ve been doing this for.

I started taking 15o mg of Pregabalin twice a day when I was 15 years old, (I’m now 24). It’s a central nervous system depressant, so it decreases the number of pain alerts being sent to your brain. A few months later my pain specialist upped my dose to 300 mg twice a day, I stayed on this dose for 2–3 years before realizing I was on an extremely high dose, I was notified by my family doctor. He was the only doctor who had ever expressed concern. After years of being medicated I made the decision last winter that I wanted to deal with my symptoms without taking this drug, I decided to taper down my dose. I attempted to go off Pregabalin but was unable to fully say goodbye. It took this experience to realize how dependent I am on this drug, mentally and physically. A year later in March of 2016 I decided to taper down one last time until I had nothing to take anymore. I’m currently still in the process which I can’t say has been easy, but I am feeling hopeful that I’ll reach my goal.

I often spend a lot of time questioning what it is that is happening to me, I wonder why this is such a huge part of my life, why I feel this pain in 13 different ways. There are no answers, which confuses everybody and mainly myself. I have the obvious days where I feel really hopeless, where I can’t feel any real part of myself. I can’t seem to grasp the essence of me because I am hurting so badly. I get so emotionally wrapped up in this chronic situation that I can’t seem to come out of it level headed. I feel scared.

On a good day, I successfully conquer any hesitation or pain that I feel. I go out, I feel happy, I feel inspired and focused. I get things done, I cook, I play some music, I think about my future. I don’t think about my pain level, I don’t feel my pain. These days are the ones that I hold onto, and they are precious to me. I have learned after all of these years that being grateful is something that will never leave me. I feel lucky for almost every good day that I have. Sometimes I even feel lucky for the the bad ones.

It’s hard being up and being down. It’s hard for you to grasp your own life, but also hard for others to comprehend you. I know that someday I won’t feel upset with my body, I’ll be accepting of the fact that it goes through trauma and I’ll eventually learn how to relieve it. Turning 24 a few months ago, it’s nice to be at a place in my life where I am ready to be accepted. I no longer need to try and impress anyone, I don’t need to do things when I physically can’t do them. I don’t need to feel bad about backing out of a plan. I may not be able to relate to some of the things that some people my age worry and stress about because I’ve got my own array of things that come before that, along with the small and meaningless things too. I still change in and out of black outfits 18 times before going out. I love cats and chocolate and I love spending time in my bed. I stress about boys and girls and parents and love. Sometimes though, I don’t have time or energy to stress about the little things, I am more focused on trying to exist and function while being in a lot of discomfort, while being completely enriched with pain.

It would be completely wrong of me not to shed some importance on the people in my life that have been there for me through a lot of things, whether it be health related, or the challenges of life itself. My circumstances are not easily understood but I luckily have a small handful of friends in my life who have always been there to listen to me, and to comfort me. I don’t go around looking for sympathy, and it’s important that I can get this point across, I don’t necessarily want to talk about it often anyway. Having people who I know will listen at any time of the day is a huge relief.

When I do let somebody in, romantically or intimately, it’s a very complex psychological process, and it doesn’t happen all that often. First off, I am letting them into a special little place, the essence of myself that I keep pretty hidden, that I don’t display for just anyone. I am a pretty private person and I spend lots of time on my own, and letting someone into my life is exciting and also vulnerable for me. Second off, the more time I spend with this person, the more they start to see that I very well do live with an unusual circumstance, which is pain. They start to see that I didn’t explain how much it effects my life. I deal with many different symptoms that I don’t talk about, but eventually it all kind of unravels and what I go through is out in the open.

This sounds pretty simple and straight forward but it is really the opposite for me. This is the point in time where my mind starts to run way too fast, and I start to think and worry profusely. Why me? Why do you want to stick around with someone who can barely do things sometimes? How much of myself should I keep to myself, how much can I share with you? Do I lie to you when I am in pain to make myself seem more capable of something normal? Do you actually mean the things you are saying, or do you just feel bad for me? Can we intertwine our lives in such a way where none of this matters?

These thoughts exist, every time. Self doubt, I live with it, and it comes and goes so fast, but when it comes it can be overwhelming and it will make me question a lot of things. It can create situations that aren’t actually happening at all.

All of this said, sometimes things have this organic and special way of working out. I can put these things beside myself, behind myself, and really trust my feelings. I am worth it, and if there’s someone who’s special and patient enough, they will know that too. There’s no right way to deal with any sort of chronic illness, especially when it comes to love and being a partner to someone else. Everyone deals with something, and it’s important to live your life knowing that about people, that they’ve got something that they hide away in the back of their mind too.

So, I live with chronic pain. I’ve realized that trying to pretend it isn’t there hurts me so much more than actually facing it. The key, which is the hardest task of all, is to live with balance. Whether that means living vicariously through articles you read online about shared experiences, whether it means falling in love, or staying away from love, writing music, going to a yoga class, working hard at school, whatever brings you to a place where you have some sort of balance that exists in your everyday life.

Sometimes I feel like my life is a huge contradiction. I feel one way, then feel the other way, I say I am doing much better, when really I am not. As much as things seem impossible though, they are very much possible. Studying, travelling, and simply living. We can live the way that we want with time and patience. I might not be able to do the things that I want to do all of the time. This is OK, and in exchange I am getting closer to fully being finished with a drug that I’ve relied on for 10 years. Most importantly, I feel support from every direction and there isn’t a more gratifying feeling than that.

- Jessie