In my personal opinion, frustration is the worst emotion. Frustration has the ability to ruin an entire day or week. It makes you feel defeated and powerless. Overall, it's awful and terrible and deserves all the negative adjectives.
Unfortunately, life with an unpredictable disease means that I get frustrated A LOT. The three reasons I get most frustrated include:
1. My abilities suddenly change.
Friedreich's Ataxia is a progressive disease meaning that it only gets worse over time. My body is in a constant state of decline and my abilities constantly change. This means that sometimes I wake up and can't do something that I could do yesterday. Sometimes it just means that I am having a bad day and the change is only temporary. Sometimes I lose an ability and never get it back.
For example, a few weeks ago I randomly had so much trouble transferring out of the shower back into my chair. So much that I had to get my roommate to come help me (this is when learning to ask for help is so important, but we can talk about that later lol). Transferring out of the shower is a transfer that I do EVERY DAY, so I had no idea why I was struggling. This led to so much frustration and I was sobbing while sending my physical therapist at home pictures of my shower making sure I wasn't missing anything. Was it a mental block? Was it a physical thing? Was my ability to make that transfer gone? Was I just having a bad day? Questions like these swirled through my head. We came to the conclusion that I was doing nothing wrong. There was nothing different about this day compared to the day before. So why couldn't I do it?
This is the nature of having FA, things change constantly with no warning. You can see where it would lead to a lot of frustration.
P.S.: For those wondering, I have since figured out the shower transfer. I added some new grip tape to the shower and boom...problem solved.
2. My body just decides to shut down.
Bad days happen. But I rarely ever see them coming. Sometimes I wake up and my body literally does not function. I struggle with transfers, deal with a constant state of exhaustion (even more than usual), and can't do anything that requires any sort of mental or physical resilience. Unfortunately, I can't lay in bed all day and rest like I would at home. I have had to figure out how to function on these days now that I am in college and living alone. I am not going to lie, it has been so hard.
Bad days are so frustrating because I never know when it is going to happen. Like I said, sometimes I have to force myself to function through them. Other times, I can't. I have to cancel plans, skip classes, wait to do homework, and can't keep up with my friends. Everything gets put on hold.
3. I have an unpredictable pain day.
These are the worst. I sometimes know when I am going to be in pain. Maybe I had a challenging day in PT or slept in a weird position or didn't drink enough water. With those, I can pinpoint exactly what is causing my pain. However, sometimes there is no cause. I just am in pain. For no reason. Yay.
These periods of pain can last for just a few hours or for days at a time. Sometimes it is mild and sometimes it makes me nauseous and shut down. It all just depends on what my body is feeling. Like bad days, these unpredictable pain days are so frustrating because they throw a wrench in my life. I have to stop everything to take care of my body.
You might be thinking, "Kate. You just complained for that entire blog post. What's the takeaway here?" And to that I say: Yes, yes I did complain for that entire blog post, but the takeaway is coming my friends.
If you are one of my friends with a disability, I just want to remind you that sometimes your body reacts in a way that is out of your control. And that sucks. It's not fair and it makes no sense. It is so frustrating, and as we already talked about, frustration is THE WORST.
But it's totally okay to be frustrated. You have a right to be.
So throw something. Scream into a pillow. Rant to a friend. Yell at the wall. Do whatever you need to do to let out your frustration and take the time to take care of your body. But don't give up. Keep fighting.