Tag: illness

Chronic illness is unpredictable, which can often time lead to frustration. Making it work is one of the things that has helped me adjust to living with chronic illness.

No one can doubt that living with a chronic illness is a full-time job. Having a full-time job on top of chronic illness is pretty much two-full time jobs, except you don’t get weekends off or vacation days. Understanding how to cope with this can be hard and will be hard. For me, I spend a lot of my time when I’m not at work resting. I am learning to listen more to my body and try to understand my symptoms. For example, let’s say it’s a day when my heart rate is not wanting to come down. I do have days where my resting heart rate hovers around 115 bpm, with my standing being much higher. It’s not easy and it takes a toll on my body. On these days I will first attempt upping my fluid intake. If that doesn’t help, I will monitor my blood pressure to see if that’s an issue and will up my salt intake. If neither of that helps, I know it’s time to take the day to rest. Remaining supine during these times is the only thing I can do. I have to accept that.

I think that along with making it work comes acceptance. Acceptance is totally not easy. Accepting where your body is at now versus where it used to be can be hard. I know it’s incredibly hard for me at times to look back at what I was able to do before, but even then my symptoms were often there, just not as severe. I can’t do too much physical activity, I can’t eat certain things, and I tend to get very tired very easily. I am the first one to leave a party, if I even make it to that party to begin with. Gone are the days where I could stand during the standing portions of a church service (half the time I can’t even make it to church). It’ll never be easy, but it’s something I must accept to live a happy life.

Learning to work with the illness instead of against is all we can do. It’s chronic, it’s not like it’s going to go away, so finding ways to make it work is essential to living a happy life with chronic illness. Working with friends, family, and my employer have really helped me feel as though I have more control over my illness, even though my symptoms are very unpredictable.

I’m at the point in life where many of my peers are getting their first house, getting married, getting engaged, and having kids. In regards to my personal experience, I’m at the point in my life where, at times, walking up my driveway without assistance of my mom seems like insurmountable task. I cannot imagine moving out at this time or anytime in the near future. Sometimes I tend to compare my experiences to the experiences of those around me and often time feel like a failure.

I am working on trying to not compare where I am at in life to others around me. It automatically sets me up for a bad time when I do that. Instead, I am now working toward celebrating little victories. For me, little victories include getting through a work day without almost passing out, trying to make it to social activities the best I can (but remembering that it’s ok to leave early if I’m not well), making it to church, trying to shower every day (even if it requires sitting…if not, dry shampoo is always an option), remembering to bring my midodrine with me when leaving the house, remembering to wear my compression socks, and simply getting out of bed. These things probably sound like the simplest of tasks to most, but for me, they usually require a lot of energy and can bring on some negative symptoms. Plus, if you know anything about dysautonomia, brain fog is a symptom that tends to stick around, so remembering the little things can be a big deal.

Even those most people in their mid-20s are experiencing things I may never get to experience, I know I have plenty of blessings. I am not a failure and I am not worthless. I just have different goals and different experiences. My experiences are just as valuable and so are anyone’s with a chronic illness.