Why it can be harmful to push past my limits with ITP
Despite the consequences, I still tend to push my body
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Life with chronic and rare illnesses is interesting, to say the least. I have to manage new and existing symptoms, visit medical providers, and stay in tune with my body. And while I know I shouldn’t push myself past my limits, I still try (but often fail) to live “normally.”
As a child, I was diagnosed with lupus and Ehlers-Danlos syndrome (EDS). These diseases affect me daily, causing a weakened immune system, joint dislocations, stress-induced skin rashes, fatigue, gastrointestinal issues, and more. But developing what I consider my first “primary disease” brought a lot of changes to my life and care routine.
In 2018, I was diagnosed with immune thrombocytopenia (ITP), a rare disease in which the immune system attacks and destroys blood platelets. If left unchecked, it can become deadly. For me, living with lupus and EDS is comparable to walking around with a blanket over my body: I’m constantly wrapped up in it, which is annoying but manageable. But living with ITP is more like walking around under a weighted blanket. The burden of the disease is heavier. The risk of complications constantly presses on me and slows me down.
The consequences of pushing past my limits
This brings me to post-exertional malaise (PEM). Before ITP, I would push myself past the point of exhaustion. I’d surpass my limits to finish a project or make it through an event, and then let my body rest and return to its baseline the following day.
But PEM makes this impossible. According to the U.S. Centers for Disease Control and Prevention, “[PEM] is the worsening of symptoms following even minor physical or mental exertion that would have been tolerated previously.” It can last for days or weeks, and some people never get back to their previous baseline. Even with time and rest, the body can’t fully recover.
Let’s say, on a normal day, you’re able to wake up, shower, make breakfast, work on your computer for two hours, and take a 10-minute walk before you need to rest. But one day, you end up working for four hours, and then friends pop up wanting to go shopping and out to lunch. You’re already tired, but you’re excited about the social interaction, so you push on.
Most people might come home sleepy and go to bed early — and that’s all they need to feel refreshed the next day.
But in my case, I’d be aching all over and feel like I had the flu by the time I got home. Exhausted, I’d hope to fall asleep right away, but wouldn’t be able to due to a migraine, restless and painful legs, and an upset stomach.
I’d wake up late the next day and take longer than usual getting out of bed. I wouldn’t have the energy to take a shower or the strength to cook anything, so I’d simply grab a banana. I’d try to start working, later than usual, but find that this is impossible, too. I’d be unable to focus, my head aching, my back hurting from sitting, and my body going downhill. I might be able to work for 45 minutes before my body screamed at me to lie down. And that 10-minute walk? Not happening.
Once I push my body beyond its limits, it can’t catch up. I frequently deal with PEM. I have good and bad days in terms of my symptoms, but ever since I developed ITP, I haven’t been able to push myself on the good days. If I do, I can expect to be down for the next few days. It’s an unfair trade-off.
Unfortunately, I continue to push myself in an effort to experience some semblance of normalcy. I have two young boys who want to have fun, and I’m slowly trying to turn our new house into a home. Plus, there are the other life responsibilities, such as work, cooking, and cleaning. So when I feel good, I push myself to complete as many tasks as I can before PEM kicks in. It’s hard, but I strive every day to learn how to navigate my “new normal” and not push myself too much.
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