MY LIFE: 5 things I deal with every day regarding chronic illness

By Jiri Hodan [Public domain], via Wikimedia Commons

By Jiri Hodan [Public domain], via Wikimedia Commons

There are universal truths when you battle a chronic illness, and I’m no different. Not everyone reading this blog is a chronic illness warrior – some are part of a warrior’s support system or even a person looking for information on chronic illness for a variety of reasons. It’s because of this that I decided to write a post about everyday things chronic illness warriors need to understand and deal with.

  1. Sleep is different for me. Other people who don’t battle a chronic illness can yawn and decide it’s bedtime, then go to bed and fall asleep quickly, sleeping through the night. They wake up refreshed and are able to hop out of bed to begin their day. Then there’s my situation. I typically wait until it’s almost guaranteed I can at least fall asleep, but even then I can only count on sleeping four or five hours without waking up.
    Sometimes I can go back to sleep, sometimes I can’t. Because of this, I can’t count on a certain number of hours of sleep every night. I can’t count on my sleep being refreshing. All in all, I can’t count on anything. For instance, last night I slept three hours and thirty-seven minutes. It’s really hard to be productive on so little sleep, I assure you, especially when this happens day after day.
  2. I’ll wake up in pain, but I never know what kind. Most of us with chronic illnesses deal with pain most every day. We all realize that’s a part of our illness. What’s harder to come to terms with is that every day is a surprise, and not in a good way. I can’t ready myself physically or mentally for what will happen, and the pain is like a never-ending rain cloud over my head. Every morning, I wake up and my brain registers where the pain is and what kind. Then I need to decide how to deal with that day’s problems.
  3. My body has betrayed me and continues to do so. It’s incredibly difficult to know your own body is making you miserable and there’s little you can do about it. People without chronic illness/pain can’t even begin to comprehend what this feels like. I’ve done nothing to deserve this. And I can’t go to the doctor or take a pill to get rid of it. Instead, I battle my own body every day and come out on the losing end, which can be incredibly depressing.
  4. Everything I do is based on my illness and how I’m feeling. I can’t make plans or promises because there’s a good chance I won’t be able to fulfill them. Sometimes I have to make plans and hope I feel well enough to follow through on them. I feel undependable and wish things were different. It’s difficult to accept. The idea that I constantly let other people down (even if they tell me they understand), niggles at me day and night.
  5. I can’t realize my dreams. I’m an author. I had an established name before everything started to go wrong. But I’ve hardly released anything in the past two years and readers are forgetting me. My royalties are decreasing every month. To add insult to injury, my medical and other costs associated with my illness increase every month. It’s a vicious, never-ending cycle.

I want to note one thing: I didn’t write this to garner sympathy. My aim was to help people realize the particular challenges chronic illness warriors face. I know it’s impossible for healthy people to understand, but hopefully dealing with chronic illness warriors, combined with this kind of information, will help them help us.

Are there things you deal with every day as a chronic illness warrior that I haven’t mentioned? Tell me in the comments below!