Finding My New 'Normal' Amidst the Unpredictability of Illness


It has been a few years since my original diagnoses and in this time I’ve learned quite a lot about what it means to have a chronic illness. I also have a considerable amount left to discover. After landing myself in the hospital for a while for multiple pulmonary embolisms, I quickly strived to find my new normal. I needed to know what to expect from each passing day.

After months of “Oh! I feel great! This must be my new normal!” to dealing with my severe lupus issues, I’ve discovered I will most likely never have any type of “normal.” This depressed me and caused me quite a bit of anxiety for at least a year. I was afraid to make plans because I wasn’t sure what my normal would be the following week. Would I be up for an hour at the gym or would I be fighting my chronic fatigue and light sensitivity? I will never know. For example: on New Year’s Eve I was hoping to do some type of exercise every day of 2017. I was beyond excited as my normal had been moderately OK for about three months. I had the flu a few times, but no serious problems. To my surprise, I woke up on the first with an awful feeling. I went to my doctor only to realize I had multiple infections, serious concerns from my doctor and as of today, the 11th, I can barely get myself out of bed. My chronic fatigue strikes again, leaving me exhausted even after more than nine hours of sleep. This was in no way my normal New Year, but I’ve accepted it as my current normal and I’m doing my very best to be a parent, wife and blogger. I know I’m missing deadlines, and I know I’m not putting as much effort into playing with my son as I did a few weeks ago, but taking it easy is required when your normal isn’t the best.

Why does this bug me less today than it did a year ago?

1. I know rough patches happen. This is no fault of mine and I need to take care of myself if I want to be there for my son later on.

2. I know that when my medications have a chance to do their job, I will be better. Even if the side effects aren’t fun, I’ll be OK.

3. I know my normal will change again.

4. I’m doing my best.

Even when I feel like my health and life are out of control, I have to bring myself back to reality. This is my normal, and while it’s consistently inconsistent, it’s mine. Knowing this, I make plans but I acknowledge I may not be well enough to make it. I’m flexible with my normal and my family recognizes my changes and bends with them. It’s in no way perfect, but normals don’t have to be steady. Once a person or even a family recognizes that fact, it gets easier to deal with chronic illness, at least in my opinion.

If you have chronic illness, how do you deal with your ever-changing “normal?”

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