The Truth About Chronic Illness

Field placement issues, vacation, Christmas…

It has been one thing after another in the month of December, and I feel as though I have barely had time breathe. There is so much I could talk about in this post. Everything I want to touch on will have to be split up into about 3 or 4 posts. Right now, I want to talk about the single aspect that threads all of these events together: chronic illness.

Chronic illness causes more issues in my life. It is the single cause for my field placement being taken out from under me, for making the trip across country 10 times more difficult than I anticipated, and for causing an extreme amount of tiredness on Christmas leading me to sleep away about 2 or 3 hours in the afternoon.

Right before Christmas, I took a trip with my boyfriend out west to see where he grew up and to visit with family. I did not anticipate the struggles I faced while I was there. Of course, I knew that some things may be challenging, but I was in for a rude awakening; the busy 4 day trip was a big wake up call that my illnesses affect me more than I even realize. At home, I am so used to my own routine. Because my field placement has not started yet, I spend most of my days doing school work, working from home, and going to appointments here and there. I have not had to physically push or exert myself for the past 6 months after my last field placement ended. This trip, though a lot of fun, was very difficult and tested my body more than once. I have not flown on a plane in at least a couple of years. Flying is exhausting, I learned. Thank goodness for wheelchairs, otherwise I would not be able to make it through the airport. A different climate takes it’s toll on one’s body as well. My first full day on the trip, I started feeling very weak, shaky, and dizzy/lightheaded. In fact, I met a close friend of mine and for the first 10 minutes of our time together, I seriously was wondering if I was going to end up on the floor of the Starbucks – I felt that bad. Almost any time I rode in the car, I lied in the back seat with a pillow and blanket. Any free moment I had, I crashed in bed. There were a few moments where I felt a meltdown coming. Conversations started out good, but 30 minutes into it I would begin to zone out. I realized on this trip that maybe I am not as okay as I originally thought. My head always fills with doubts about my illnesses (thank you, OCD). Due to the nature of OCD, no matter how bad I feel, the thoughts will always come. Sure enough, the doubts crept up as soon as I returned home (despite the overwhelming exhaustion). However, maybe I needed this trip to show me that I am not invincible, that I do have to take it slow, that my illnesses are very much real and wreak havoc on my life even when it is not obvious. Being thrown into a different environment and an alternate climate really took a toll on my physical health. Ever since getting home, I have slept away almost every afternoon. I had a bad pre-syncope episode on Christmas Eve. Despite it all though, I would not take that trip back for anything. I am realizing more than ever that with my conditions, it is a give and take. It is one step forward and two steps back. I can do the things I want to do with modifications. I may pay for the activities I do or trips I take. But what fun would life be if I didn’t do those things? If I didn’t risk my medical conditions flaring for a good time every so often?

So that is where I am at right now. I went to bed at 8:30 last night due to complete exhaustion. But I have tools to help me. I have family and friend support. I had a wonderful Christmas and I am so blessed to have others looking out for my health.

If you are struggling this holiday season, no matter what it is, know that you are not alone. We can make it through. “I get by with a little help from my friends.”

 

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.

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.

 

When You Are Too Sick To Be Well, But Too Well To Be Sick

Some people may not consider me sick. Heck, half the time I don’t consider myself to be sick. Sure, I have all of these diagnoses; too many to count with mental and physical illness combined. But sometimes, that is just not enough. Often times, I feel like I am stuck in this limbo between being sick, and being normal.

Too sick to be well, but too well to be sick.

When I was first diagnosed, I was much worse off than I am now. My world came crashing down with my first and only hospital admission where I stayed for a week. Due to severe dehydration and Dysautonomia combined, I was really struggling. I struggled to walk, struggled just to make it 5 steps to my bathroom. I was shaking, dizzy, weak. When I was discharged, I was not much better than when I was admitted (minus being rehydrated). It was difficult getting around. I used a walker and a wheel chair much of the time. I spent the majority of my time in bed, sleeping or just laying there with heating pads. But then something happened. Slowly, I started regaining my strength. Maybe it was because I said to myself: “enough is enough!” I started pushing my body just a little harder. I signed up for classes, I slowly incorporated more activity into my life, I brought my puppy home who has been the biggest blessing. There was no treatment that kick started this improvement. It was slow and gradual, and for the life of me I can’t pinpoint how it happened. But isn’t that a defining feature of chronic illness? Disease symptoms that wax and wane in intensity throughout someone’s life?

I am not cured. I am not in perfect or peak health condition as I used to be. I still struggle after showers with tachycardia and low blood pressure. I still struggle to stand for more than 5-10 minutes at a time. I still have difficulty walking around the mall or grocery store, and often need my walker for these tasks. I still feel as though I could easily fall asleep during the day. I still get tired and fatigued. But at the same time, I am in school part time. I am a grad student. I go to my internship for 15 hours a week. I work part time from home teaching children English. I do all of these things, more than what many people can do with chronic illness. And sometimes, I feel as though I don’t belong in the spoonie community. That I am too far along, ahead of the game. I don’t go to doctors multiple times a week every week. I don’t have access to IV fluids. I don’t have many hospital admissions. I don’t have much testing left. I am in the stage where, yeah, we know what’s wrong, but I just have to keep doing what I’m doing.

“Keep plugging along.

Keep taking your medication.

Conserve your energy.

See you in three months.”

Sometimes, I don’t have all that much to talk about or update my spoonie friends on (particularly on IG) because I’m stagnant. Sure, I go to physical therapy and work on my dietary changes, but life really isn’t all that exciting right about now. Which, don’t get me wrong, is good. I am lucky that I am not worse! But sometimes, I feel like I have to work extra hard just to keep up with my counterparts and fellow classmates. I am constantly going, running, trying to keep up with people who do not have chronic illnesses. And it is so hard. It is a tough situation to be in. Because the truth is, I cannot do all that other people my age without chronic illness can do. I am still sick. I still am dealing with symptoms. But I’m not in the hospital. I’m not on my death bed. Heck, I’m not even in bed at all some days (minus the days I am free of obligations, lol). So honestly, I don’t know where I belong. I don’t know where I fit in. I don’t know where I should focus my energy, on my life with chronic illness, or my life without chronic illness. In so many ways, I am still dependent on other people in several areas of my life. I see my classmates living alone, supporting themselves, and I feel guilt over not being able to do so. I kick myself for being so far behind, because if I am well enough to do what other people my age are doing, why am I not there yet? Why do I feel as though I am running to keep up?

I know why.

Because I am sick. But not sick enough. I am well. But not well enough.

I am in limbo, bouncing around between being sick and being well, not sure of where I fit in.

But I know I am not the only one in this situation. And that is what I need to continue to remind myself. That, and giving myself grace.

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