Wednesday, December 23, 2015


When you spend as much time alone as I do and when you're in as much pain as I am, you tend to encourage yourself in whatever way makes sense at the time. For example, I'll say to myself "Okay, if I get off the couch and shower, then for the rest of the day I can drink tea and watch tv." It's all about convincing yourself to do the things you need to do and get just enough exercise, in order to rest later. If you do too much, you'll be in more pain, if you don't do anything, you won't be getting the movement you need. It's just a lot of convincing, at least for me it is.

The other day I was in the bathtub and I was feeling really good (emotionally). I had just got some really great feedback on my previous blog post, and I was so happy about it. As I was finishing up, I said to myself out loud, "I'm a freakin' badass," and as I stood up to get out of the tub I go, "Ohhhh gosh." and wince in pain. And then I laughed. For about ten minutes.

I tell you this because in some ways this perfectly describes my life with chronic illness. And a lot of times people tend to say to me, "You look like you're feeling better!" just because I laugh or make a joke. Which is really annoying. It's like, do people really expect that because I have a condition and live with chronic pain, that I should be grumpy about it forever? If I lived my life refusing to accept my illness and constantly living in a state of anger about it, my life would be horrible and a million times more painful. Emotional stress and anguish just exasperates my symptoms. The thing is, the bath tub thing, that is how my life is.

Some days I wake up after getting a good eleven hour sleep, and I finally feel okay for once. I don't wake up with a headache, so I'm off to a good start. I have a coffee or two, I start to get ready. Then out of nowhere the pain starts. And, it's annoying, but it gets to a point where it's so expected that it's just humorous to me. I don't even know if that makes sense to anyone else. But it's kind of like, of course, on the day that I feel okay because I had a good sleep for once, and I'm feeling positive and happy, the pain still joins me. And sometimes the pain is severe, and I need to admit defeat and go relax on the couch or in bed. But other times, the pain is present, but I just want to enjoy the day and do what I was planning to do. Those are the times when I say, "I'm a freakin bad ass." Because really, I am. 

I'm a badass because I'm constantly in pain. I'm a badass because my legs hurt after standing for 5 minutes straight. I'm a badass because I wake up with a headache almost every day. I'm a badass because writing this blog post hurts my hands and my right arm is beginning to feel weak and shake. I'm a badass because these things happen to me like clockwork and I still go on. I still continue. There is nothing weak about that. 

I'm learning to own my illness. Illness often tends to control our lives. But, if you own your illness and you accept it, it can't own you. If you learn how to cope and how to manage your illness, you can keep that bit of control. I've learned to plan  things out according to how my body will respond. I know if I do laundry and clean my room today, that I'm not going to have the energy to go out groccery shopping tonight. And if I do both, I need to plan to relax the rest of the night, and sleep in the next day. I know that if I need to wake up at 8am, I need to go to bed at 10 to feel rested; so I'll have to take a sleeping pill in order to get to sleep and wake up at the right time. These are the things that you learn to control when you know how your body reacts because of illness and pain.

Like I said, I'm learning to OWN my illness. I used to feel embarassed that I couldn't keep up with my friends, I couldn't do the same things at the gym that they do, that my body reacted differently after having a drink at the bar, I got exhausted after something that is so seemingly easy for them. I used to be ashamed and embarassed that I couldn't do it with as much ease, and it caused me to push myself. Pushing myself to a point of more pain, and more exhaustion; which caused anxiety, stress, and a feeling of weakness, which just makes things worse. I have learned that there is nothing to feel ashamed about because I am fighting a battle every single day, every moment. Every moment, I feel pain. I don't have a moment of normal ever anymore. And because of that and how it affects me, I need to own my illness and take care of myself. 

I'm still learning how much to push, and how much to sit back and try to relax. Some days the little things take enormous effort. Some days the little things feel okay at the time, and I pay for it later. Some days taking a walk makes me feel happy and good that I'm able to stretch my legs and get some fresh air. Some days taking a walk, I cry half way through because my legs burn and I want to collapse right then and there. My pain is predictable but also unpredictable. I learn to predict which things will cause me pain, but it's not always easy to know how bad the pain will feel or when another symptom will show up out of the blue. These things, I am still learning.

But the one thing I know for sure is that I am not ashamed of my illness because every day I have a million little victories that I fight for. It's taught me not to take the little things or the big things for granted. It's also showed me who truly cares for me and accepts me for who I am. I've lost a lot of friends over the last few years, and I have moments when I miss them and the fun we had, but mostly I'm thankful that the people that don't care enough to walk through this journey with me have been weeded out. My illness has taught me how important it is not to cast judgements on others. If I were judged on how people see me sometimes from the outside; I'm sure they would assume I'm lazy and unmotivated. But what they don't know is my story. I've learned to not judge people from what I see of their life, because I don't know their story.

Your story is important. Don't be afraid to share it. You never know who it might help or whose life it might change. Don't underestimate the power of sharing your story.

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