Living in the Moment

Living in the moment is something I often have trouble with.

Life these past five years has not gone as I planned by any means. I feel like I’m always looking to the future when “I feel better” or “feel happier” thinking life will better then. Instead of trying to enjoy this chapter in my life, I’m always looking ahead.

I started college this summer at my local community college, and it’s been hard to enjoy it. I can’t help but think about how I “should have” graduated high school and “should have” gone to a four year university right away. Those things just aren’t going to happen for me, and I know I need to get over it. I’m guilty of judging people who’ve gone to community college in the past. Always assuming they screwed around in high school and so they couldn’t go anywhere else. Now looking back I realize how prejudiced and rude that was, but I still push those stereotypes on myself.

I’m grateful that my health is in a place that let’s me be able to start college full time in the fall. I should enjoy this time I have feeling well, since I never know when I’ll flare again. Honestly I’m afraid of my next flare. As the fall school year becomes closer and closer, I’m scared I’ll flare right when classes start. I really want to go to school full time this year, and I want to be successful. Instead of enjoying feeling well, I’m often worried and thinking about all of that what-ifs.

Sometimes I just need to take a deep breath and remind myself of all the wonderful things in my life. Sure, there’s gapping holes that I’ve desperately wanted to fill for years, but I have so many amazing things in my life going on too. Even in these times when I’m feeling better I can’t help but feel the exhaustion of my past. I’m only seventeen, but living seventeen more years sounds horrendous. My life is supposed to be “just beginning,” but it already feels so long.

I want to live in the moment.  I want to enjoy the now.

It’s just a lot harder than I expected it to be.

 

Normal

Sometimes I wonder if I still know how to be a normal person. After five years of being sick my life is anything but ordinary. I am seventeen and I don’t go to school, I don’t have a job, and I don’t have a normal social life. Instead I take four hour long nap, have endless doctor visits, and spend way too much time in the ER.

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When I think of my future, I imagine myself better. I see myself having fun in college, and then getting a job I love. Finding the girl of my dreams, and having an amazing family. It’s becoming more clear that my illness may have to be a part of all that. I’m having to accept that I may not get better. While I try to achieve my dreams, in five more years I may still be dealing with the same problems I have today.

I have hope that my reality won’t always include being chronically ill, but I’m learning that I shouldn’t expect that to be true. If I do end up getting better to where I can function as a regular human being, I’m not sure I will know what to do. Do I still remember how to go to school everyday, and stay up late studying? Will I know how to have a normal social life, and get out of my house every few days? Chronic illness is so isolating, sometimes I’m not sure if I even know how to talk to other people. Between the brain fog, and spending most of my time alone, I began to feel overwhelmed when I am surrounded by others.

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Many people struggle with chronic illnesses that will never go away, so I know that I can do it;  I just don’t want to have to. Seeing people who are sick but continue to live normal lives is really inspiring to me. I’m currently not in a place where I can physically do everything a normal person can do, but I’m trying my best to get there. I am looking into getting botox for my migraines, because it’s the one thing I haven’t tried yet. Many people swear by this, so I’m hoping it’s the answer I’ve been looking for.

In the new year I’m also starting counseling. I’ve been a few times for them to do intake, and to do some testing, but I haven’t had my fist session of actual therapy yet. I don’t believe that going to counseling makes you weak, but I never wanted to be in a situation where I found it necessary. After going for the initial visits, I think it’s going to be helpful. I’m an introvert who often keeps my deepest feelings to myself. I don’t like to talk about my problems, although writing them out feels freeing. Talking to a third party who isn’t a part of my everyday life will give me the opportunity to work through some thoughts and feelings I’ve had for a long time.

When you’re chronically ill, healthy people always assume that you could be doing more, or trying harder. I have a hard time with people who have never been sick, trying to tell me how I should live my life as someone who is chronically ill. No healthy person will ever be able to understand the struggles of being in chronic pain.

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I spend most my life in a state of being cautiously optimistic. I try to believe I will get better, while protecting myself for if I don’t. Society doesn’t talk enough about chronic illness, and many people have never even pondered the struggles of being in a constant state of pain. Although I don’t blame them, it isn’t exactly an uplifting experience to think about all the suffering in the world. I’d love to hear other experiences of being chronically ill, whether you’ve improved at all or not. I think the best thing we can do is band together and support one another.

Lots of Love,

Alyssa