On any given day, my pain is at a 6 on a scale of 1-10. Some days it’s way worse, some days it’s maybe even a little better. I am so used to being in so much pain, that I have this disconnect with my body sometimes that healthy people without chronic illness might not understand, but people with chronic illness will.
Last October, I almost died. Not because of any one of the multitudes of chronic conditions I’ve been dealing with throughout my life, but because of pneumonia.
I am so used to feeling so poorly that I literally did not know I had bilateral pneumonia in all 5 lobes of my lungs until I was literally dying. I ended up spending 10 days in the hospital, on high flow oxygen, with a 102-degree fever and completely bed bound.
Why is there this disconnect between patients with chronic illness and when they actually get a “normal person sickness?”
We spend so long, sometimes our whole lives, putting on a smile and making do with the cards we have been dealt. We know our illnesses in and out, and symptoms that would send a normal person to the ER in an ambulance is just another day in our life. But when you are so used to feeling so poorly, it’s hard to discern the difference between bacterial and viral infections and “just a bad day.”
We deal with so much on a daily basis with our chronic illness that we forget that we are still human. We still get colds, we still get the flu, and yes, we still get pneumonia.
Some of us are immunosuppressed, so we need to be extra cautious of getting sick. Complications arise, even with seemingly benign infections, in the chronically ill, just like in babies and older adults.
So really, what we need to do, is make sure we do our best to not get “normal person sick.” It can even be life threatening to us, even though it wouldn’t be to someone else. After that, we need to look for symptoms that are below our baselines. Bad days that turn into bad weeks. Extra high pain. Symptoms that are beyond our own “normal,” of which we all know our own baselines.
For each of us, it will be a different baseline. It will be a different plan with our respective doctors. What sends me to the ER is not what sends you to the ER. But we all have the same goal: Living the best possible life despite our disabilities.
We may be warriors, but we are human too, and we do get normal human illnesses. We are not invincible, as much as we try to project that to the world. We have our weak moments and our bad days, and that’s okay. We have our colds and our flues and our infections, but what I have now learned is to tune into my body and reconnect with what is normal and abnormal for me.
It takes a long time to tune into your body, and some of us actually end up tuning out because it’s too much to tune in to and too overwhelming and too painful. I’m still working on this whole ‘mind-body connection’ and tuning in to my body, but this time I caught the pneumonia while it was still in its beginning stages. This time, I will listen to my body, and I will make sure that ‘almost dying’ thing does not happen again. But still, today, as I write this, I struggle to know if the pneumonia is getting worse, if I have the flu or if I’m just having a bad day.