Category Archives: Living with Illness

Looking Out for Yourself– How to Respond Actively to Rejection

Dreams

Rejection is hard. I feel like I’ve been rejected by the world- the world that gave me a debilitating disease and refuses to let me heal. I feel like I’ve been rejected by the doctors who are supposed to help me, but still give me no answers. I feel like I’ve been rejected by friends and loved ones, who try to understand, but eventually push me aside and pass judgement. Everywhere I turn, I find a dead end. There is no resolution. There is no healing.

Still, I have to keep looking out for myself. No one is going to line my path with a red carpet or feed me healing with a silver spoon. Sometimes, answers are buried deep in the fathomless soil of Earth’s challenges. But the answers are there. Somewhere, there is peace and resolution.

It’s easy to tell ourselves that rejection happens to us- to give ourselves excuses to sulk and wait for things to get better. We have just as much power to make things happen in response to the rejection. Fight for yourself. Love yourself. The world obviously isn’t looking out for you, so you have to look out for you. You were placed in this life with endless opportunities for success, and all the resources to find them. How dare you waste those opportunities. How dare you settle for a small life, full of pain. There are answers to your questions, and an end to your pain. Keep your heart close to them, and create your own peace along the way. That is the only way to live.

So Much Pain– Feeling Trapped by Illness

It’s gotten so hard- thinking, breathing, moving. Everything is in some strange suspended capsule of illness. I can’t leave, even for a moment, to return to clearer thoughts or more energy. I have no good days anymore, and I don’t expect them. I just exist in my secluded state of non-life, remembering when I felt more human. I obsessively research symptoms and try new drugs because the only thing that keeps me going is the thought of something better than my current state. There are no small rewards in in the present. Smiles are forced. Movements are robotic. I can’t see color anymore- there are only silhouettes of happiness or satisfaction.
I miss my strong self. There was a time when I could appreciate happiness in others, and respect my compromised position. I had more patience, grace, and an open heart. It’s been too long since I’ve had any sort of release from my illness. I feel too caged, too sad, with no windows for clear sight or enlightenment to help me cope with my situation. Even when I try to be strong and ambitious, I’m shot down, again and again. I’m faced with countless lives more full than my own. I’m constantly faced with the things I cannot do- the abilities inside me that cannot be accessed. Everything is unfair. There is so much pain and so few answers. I need there to be more. I need a fairy tale, a god, a hero, a miracle. Nothing tangible or likely is enough anymore. I need out.

Keep Moving

I’m making progress. I’ve had more energy lately. I’ve been up and around a lot more and I’ve felt better about myself and how I’ve been spending my time. The problem with an illness as vague and uncharted as chronic fatigue is that it often feels like I’m taking one step forward and two steps back. I alleviate some symptoms and then develop new ones. I get advice from a new doctor that convolutes other medical guidelines by which I’ve been living.

One thing that I’ve found important among all the confusion is persistent and continuous movement. I have to keep moving in some direction– growing in one way or another. Regardless of the obstacles or distractions, there’s always either a solution or a getaway. There’s a way to find peace amid the chaos. This time, my outlet was a beautiful hike to Diamond Fork Hot Springs.

Hikes are a great manifestation of my movement theory. No matter what else is happening in your life, a hike is relaxing and rejuvenating, it gives you break from routine and stress. You set the pace, and you still achieve and accomplish goals that you set– exercise, building strength, reaching the peak, appreciating nature. My hike reminded me that my body was strong and functional, even considering its deficiencies. Not only that, but my mind was clear and calm, free of stress and self-judgment.

My choice of movement didn’t stop the pain, or solve my problems completely, but it refreshed me, helped me strengthen myself in other ways so that I could come back to the struggle feeling confident and able. Without some sort of growth, passion, achievement in one direction or another, I couldn’t deal with the constant, crippling pain and emotional woes of chronic illness. With movement there is hope and healing.

When you get stuck

Wasting Time

When you get the flu, you rest for a week. You lay in bed, drink sprite and eat soup, watch a lot of TV, and in a few days, it’s back to the daily grind. There’s an understanding that the nausea and weakness is temporary. You’ll only be a “sick” person for a little while, and after the affliction is gone, you can go back to being yourself– eating, drinking, working, etc. This is the general public’s knowledge of illness. It’s a temporary hindrance to your way of life. When the illness is chronic, this kind of thinking gets tricky.

I can’t put my life aside for the time it takes to heal. I would be eating chicken soup and watching Netflix for years. Our conceptions of illness as crippling combined with the association of “rest” with “laziness” present a huge conflict in my attempts to live actively while fighting illness. It makes me feel like I’m wasting days waiting until I’m a full, healthy person again. I’m not “wasting” until I’ve considered it “wasted,” in the meantime, I’m fighting, actively and intentionally fighting.

If you wait for the stars to be aligned before we start moving toward our goals, you’re going to spend a lot of time feeling hopeless and bored. The universe will never send you an invitation to your life. We pity ourselves and submit to helplessness much too often. I am in a compromised physical state, but that doesn’t make me submissive or stagnant. The people I admire most are those who succeed even with opposition. The problem is, when we encounter opposition, we generally perceive it as an instant termination of our success. We don’t see it as an opportunity to succeed with elevated persistence and growth. There will be times in our lives when our circumstances are less than desirable. Bad things happen. You are the one who makes the decision– wait for the struggle to subside, or fight it and live.

Strong Person

Setting Small Goals

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I woke up this morning and everything seemed impossible, hopeless, sad. I’ve been sick the past two days, wanting to go out with friends, wishing I were outside, waiting for everything to be different than the way it is now. I miss having the energy to wake up and go for a run, being able to order a latte without upsetting my stomach, feeling alert, valuable, active.

I have very little energy. I’m hungry all the time, but my stomach problems have gotten so bad I’ve given up eating. I drink sugar-free vegan protein shakes instead. Yum. I’m bored and lonely, and I’m alone with my pain too much. Today, all of the bad in my life seems a lot more prominent than the good. All of the negative thoughts keep rushing to my head. I thought, there has to be something I can do to make this better. I can’t just sit here and hate myself and my situation anymore. There’s only so much crying we can do before we realize it doesn’t change the situation that’s making us cry. So I got up. I felt dizzy and depressed and nauseated, but I could still stand. Then, I went for a walk. The walk was short, and I still felt sick, but it felt good to be outside–see other people, hear the wind. I saw some kids I knew from the camp I work with. They were excited to see me, and said they missed me when I was sick. That made me feel A LOT better– it let me know I was making a difference, I meant something to the kids I spend time with at work. Even while sick and very restricted, I can still find ways to be helpful and valuable. Then I went home again, drank some water and a protein shake. That helped me feel a little stronger. None of these things cured me. They just helped, a little. When we set small goals, they’re a lot more easily attained than large ones, and they bring us a lot closer to our ultimate goals than anger and tears will. I didn’t climb Mount Rainier, I went for a walk. But maybe for my current state, the walk was a metaphorical Mount Rainier.

There are so many things I wish I could do if I had the physical resources. I want to play volleyball all the time. I get so envious when I see the nets at Liberty Park. I would to start Tae Kwon Do again. I was a black belt entering high school. I want to learn how to mountain bike. I want to learn how to ride a horse. I can’t do those things right now. It sucks, but I know that already. I can’t control that part of my life, and there are so many things that I can still do that aren’t sitting on the couch being sad and lonely. Even if I’m bedridden, I can set small goals– read, write, draw, do small amounts of exercise. I can talk to people. I can get up for short amounts of time. I still have awesome roommates, a great GPA at the University of Utah. None of us lose all of the good things in our lives when we have bad days. We just have to break past whatever negativity is looming over us, and get back a little closer to the good, even if we don’t quite make it back into the good. Climbing a small mountain is much more rewarding than sitting still.

A Day in the Life

Today was a pretty standard sick day for me. The term “standard”, here, means “my body turns on me and I have no idea what it’s going to allow me to do or how much energy I’ll be able to expend for the next 24 hours.” It’s predictable in its unpredictability. Here’s a better idea of what that looks like.

8:30 AM: Wake up, feel dizzy, tired, but mostly functional.

10:00 AM: Get coffee with boyfriend. He walks inside to retrieve coffee because I’m feeling too weak and dizzy to pry myself from the seat in his Jeep.

11:00 AM: Sit inside, bid boyfriend farewell, dizziness subsides a little so I shower and decide to go for a walk…the walk lasts about five minutes because the sun causes more weakness and I have a headache.

12:00 PM: Feel low-energy and light-headed. I’m scared to upset my volatile stomach, so I eat a couple apple slices, and again resolve to leave the house.

2:00 PM: Didn’t leave the house. I’m starting to develop the usual stomach pain. Ruh-roh…

2:30 PM: Lunch makes stomach angry and I’m lying in the fetal position on my couch, cringing.

4:00 PM: Still on the couch. My head is spinning and all of my limbs feel heavy and sore.

5:00 PM: Decide I’m feeling a little better– start small house chores. Plan to head to friend’s birthday party later.

7:00 PM: Feel dizzy and nauseated. My sharp stomach pain is back. My body has vetoed the birthday party. I’m betting the rest of my night will involve on my couch, in bearable but unpleasant pain, accompanied by Netflix and books, and the occasional wish that I could leave the couch and make my way to the party.

Throughout a healthy week, I’ll have about two days that look like this. Throughout a sick week, there will be about four. The rest of the week, I work, spend time with friends, exercise, etc. On good days, I still have restrictions– I generally have to take more time between activities to sit and rest, I watch my diet, I keep track of my expenditure to avoid a subsequent bad day.

It’s been like this (fluctuating) for about three years now. I’m an extremely active, high energy, 4.0 student, track-running, volleyball-playing, instrument-learning, everything-always opportunist and perfectionist turned couch potato. I’ve seen, and continue to see countless doctors, none of whom can pinpoint the onset of my ailment. However, there’s a consensus that it involves adrenal fatigue, muscle pain, and digestive distress.

I sleep more, eat less, and take more medications than I used to. I have to interact with the world in different ways, but I still have a functioning body and mind that allow me opportunity and experience. On bad days, like this, I read, write, and think about the ways other people live. I’m more of an observer, now, than a doer, but that’s okay. I’m learning to be productive and valuable with the hand I’ve been dealt. On good days, most people can hardly tell I’m sick. Sometimes I can hardly tell I’m sick. “bad days” would’ve sounded crazy to me before I had one. There are millions of people around you living with illnesses you’ll never have to experience or understand. Mine is relatively mild compared to leukemia or para/quadriplegia. I’ll never understand the pain or suffering they go through. I write about my illness because I’m learning how to cultivate and assimilate myself using my handicap as a guide, rather than an ailment. I need to acknowledge the restrictions my illness places on me, and learn to work with them. I’ll never accept it, but I’ll always learn from it. I ask that you learn from it also. I’m not asking for pity, just compassion and awareness. People rarely consider situations unlike our own. Many of my “friends” have no idea I spend days bedridden, in pain. Chronic Fatigue and Fibromyalgia are both growing, but mostly new medical concepts. Those who suffer from these illnesses need patience and tolerance. I seek to build foundations for such movement through my own experiences and attempts at growth.