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The Time That Is Lost When You Have Chronic Illness

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The world we live in today is 24/7, 365. Even healthy people don’t have enough time to do all that is demanding of their attention. Being limited in mobility and energy by pain and fatigue, however, adds another wrinkle to the cloth that not everyone can understand.

I am in my 15th year with rheumatoid arthritis as a main meal with lower back issues as a side dish. I have burned through all biologic meds to the point where I am on one that stopped working years ago but is “the best option out there until something new comes out” according to my rheumatologist. I have active disease and try to manage it with the lowest prednisone dose possible, which can vary a lot. Prednisone leads to weight gain, which leads to more pain – it is a vicious circle. I have a foot difference that makes shoes hard to find and wear, and is painful. I know I am lucky, though – I can still walk, I work full-time and I work very, very hard at maintaining the fullest life I can have, as if I were not sick. But I am sick.

Time is different for me than most people. Gone are the days when my early-rising self would spring out of bed at 5:00 in the morning and get on with things. Gone are the late, inspired nights when I’d stay up late working on a piece of artwork. Now I have to stagger down a flight of stairs one at a time after sleeping, hoping I don’t fall. It really hurts, a lot. I then take meds and wait for at least an hour for the pain to get a bit better so I can walk and begin the day. After a couple hours I can handle getting to work, where I try to pretend I am normal, but literally every step reminds me I am not. It hurts. All day long. I have extreme stiffness and pain making movement difficult. Sitting, standing, moving – all pain. Distraction is key for my survival.

I love my job more than anything else in my world. I am a public school art teacher and every day is filled with creativity, love, laughter and joy on behalf of my amazing students. It is perfect and I never want to give it up. But it hurts. So much. I’ve started to notice how hard it is for me to walk more than a few steps in my classroom – to walk up to the office, to go outside. It takes me too long. My brain says “Go!” but my legs are not able. And it hurts. It takes me longer to get from A to B and I wonder how much longer I will be able to walk. And then what will happen?

Then, after work, I arrive home as exhausted as we all do, sick or not. But my body hurts. A lot. I try to clean up my house (I’ve never been good at that, so being slow makes it much harder.) I try to do laundry. Errands. Make healthy meals. To keep up. I am alone and need to do everything myself. It takes longer. I’d like to stay up and get things done because I am always falling behind – but I just can’t, because I know if I don’t sleep enough tomorrow will be filled with even more pain and more exhaustion. Another vicious circle.

Over days and weeks the time drain has a cumulative effect. All the things that should be done snowball into overwhelm, and I feel like I am plodding along, shoveling sand at a tidal wave. And yet I know I am lucky, I can still walk. I have prednisone. I have pain medication. I have a job I love. But I have a lot of fear over when time will run out and a giant “Game Over” sign will pop up and I have to throw in the towel and give up things in my life that I love and fight so hard to hang on to now. The old me had at least three or four more hours a day to live – the sick me doesn’t. It is hard to accept that time is different now. I wonder if healthy people realize this aspect of what sick people go through – I know I never did. I am not sure what the answer is besides accepting slowness, incomplete tasks, a very messy house and long, delicious and necessary sleep. Acceptance can be a tough pill to swallow, but at least I have time to think about it as I wait for my legs to get ready for the day.

Follow this journey on Amy’s blog.

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Thinkstock photo via artisteer.

Originally published: October 31, 2017
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