Trial And Error

Trial and Error. Two words that seem to sum up my experience in the last month pretty darn well.

I could go into a long spiel as to why it has (yet again) been so long since I have written on this blog, but I will spare you the extra details. This being said, trial and error is a large part of why this blog has taken the back seat. That, and just a lack of creative juices flowing through this overstimulated brain of mine.

Trial and error, I have learned, is an inevitable and sometimes crucial part of living with chronic physical and mental illness. Having a chronic illness is kind of like living in a shoe store. You are constantly trying different sizes to get the right fit. In order to find the best doctors with the best treatments, we must shop around. We must go to different appointments, see various doctors, get a host of tests or assessments done, and try divergent treatments. Usually, after some time is spent in this shopping spree phase, we can settle with the right doctor who orders the right tests and prescribes the right treatments.

Looking at my own personal story, it has been almost four years since I became sick. Just when I thought I was at the end of my road, something else always popped up. I have been to more doctors than I can count and taken way more medications than I can remember…and I’m still going on this journey! Hopefully it is winding down as there does not seem to be many more tests that I can forego, but now I am digressing.

Okay, I’m back – trial and error.

We need this process of trial and error. It is the only way that we will actually learn what we want and have the means to GET somewhere. Take doctors for instance. I have skipped, hopped, and jumped from doctor to doctor in search of a good fit, one who will take me seriously, and one who will not be afraid of a challenge. I finally found a wonderful primary who cares and who will fight for me. I was able to see a doctor who is very difficult to schedule appointments with, who ended up diagnosing me with something that no other doctor could.

Just last week, I went in for an MRI. The doctor who set up my MRI was a new doctor that I hadn’t been to before. I went there to get a second opinion and rule some other illnesses/problems out. I was not fond of the doctor who I saw; he basically told me that my illnesses were too rare and I probably wasn’t suffering from any of it. Instead, I was probably just deconditioned. No doubt I am deconditioned, but who will I stick with…the doctor who doesn’t believe me, or my doctor who does and will fight to figure out these last pieces of the puzzle? Who will help me along and get me the best treatment? Because let me tell you, there is more to the picture than deconditioning.

So I’m sorry, but in my eyes, it’s a no brainer.

I have experience with failed treatments. For example, I went in for my first iron infusion for low ferritin levels to gain more energy (at least that was the hope). What happened? I had a reaction. I felt worse leaving than I did going. I repeatedly cursed in my head (okay, and out loud) on that drive home, while praying I would make it home okay – which are two pretty contradicting actions. You would be surprised at how you react when your feeling that poorly. I ended up going to the Emergency Room two days in a row. Not fun.

BUT – now I know, thanks to trial and error.

Home sleep study? My breathing was normal. We did what the insurance company wanted, now we need to push for an in lab sleep study to actually be able to look at my brain waves.

Not only is this whole process trial and error, but it is almost like a game. I could go on and on with examples of trial and error with both my physical and mental health, but I won’t put you through that. I think you get my point. But if it did somehow get lost in all the ramblings, my overarching idea here is that trial and error is a part of life, and especially so in life with chronic illness. It can be a royal pain to deal with sometimes, but it is most likely the only way to get to where we want to end up.

So we keep going.

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The Real Answer to the Question “Are You Feeling Better?” When Living With Chronic Illness

“Are you feeling better?”

A question that makes me cringe. It’s an awkward and uncomfortable question that, unfortunately, is asked frequently by friends and family members of those who are chronically ill.

I personally do not get upset with the people who ask me this. After all, if one does not experience chronic illness first hand, can we really expect them to understand? However, I was asked this question by classmates of mine for the first time, and I have to say, it was one of the most uncomfortable encounters I have had with my classmates to date.

And I thought and thought about this.

Why is that question so darn awkward to answer? Why does it make me stutter over my words, not knowing what to say, almost as if I were a deer in headlights?

Because I don’t want to tell them the truth. And the truth is, no I am not feeling any better. Sure, I may not be feeling as bad as I was that day I missed class, but I am never 100%. My battery is never fully charged. But that’s just how I live. In fact, I don’t even know if I really remember what normal feels like. This is my new normal. I live with this fatigue every single day. Little things make me tired. Doing nothing makes me even more tired. Sleeping does not cure the fatigue. In fact, it makes it that much harder to get out of bed. My heart rate jumps when I stand, I get dizzy, my legs feel like spaghetti noodles. I have learned to live with it, and I continue to learn how to best manage each day. And you wouldn’t guess that I struggle like this, because I show up with (most of the time) a smile on my face. I talk and engage in conversation. I laugh. I participate. But the effort it takes to just do these things is more than you know. I push myself.

Of course, this is too much to say in brief conversation. Does anyone really want to hear the truth anyway? Even if they did, the effort it takes to verbalize all of this is too great. So, I am writing it down. I am much more cohesive with my thoughts when I write than when I speak. Words seem to escape me when I try to talk, yet another symptom of my chronic illnesses.

So, to truthfully answer everyone’s questions that come my way about if I’m feeling any better, the answer will be no. The likelihood that I will actually say this is slim to none. You can expect a big old “yes” to come out of my mouth, but in case your wondering, that’s not accurate. It’s just easier because it uses less energy, and diffuses the awkwardness from the situation. I appreciate the thoughts and intentions behind this question, as I believe they are usually good ones. I just have not figured out how to live like a healthy person in a sick body, and I don’t know if I ever will.