Mysterious Illness — Listening to My Body

Mysterious Illness — Listening to My Body

This post is a bit out of the norm for me. I’ve been struggling with blogging lately. Not that my creative well has run dry. I’m full of blog post ideas, new series, exciting creative outlets…but sitting down to focus on any of those has been impossible. When my mind gets wrapped around something, it takes time for me to navigate through its twists and turns until I resume “normal” living again. Recently, I’ve been going through one of those such things and I think I just need to spill my guts, if you will, before I move forward.

All my life I have struggled with sickness. My immune system has never seemed to work properly. My body has certain quirks, like a low white blood cell count, a higher body temp, higher resting heart rate, etc. For years, I have had a constant sore throat (and no, taking out my tonsils and adenoids didn’t help much), everyday nausea, a hint of a headache most days, and I can’t seem to go out into the community without picking up something.

Certain things helped, like finding out I was dairy intolerant and gluten-sensitive. But for the most part doctors say they see nothing wrong on paper and it must just “be me.” This has made life frustrating, but you push through and accept your norm.

This past year, something changed.

Starting back in January, I came down with a severe case of nausea that lasted a week. Beyond that, it would reappear every now and then, and I just figured it was my IBS flaring up. So, I talked to the doctor about connecting with a gastroenterologist again to  see if anything in my digestive system had progressed to IBD or Crohn’s.

But then, at the end of March, I started struggling with shortness of breath and running a low grade fever that basically hasn’t let up since. I continue to struggle with nausea, headaches, and dizziness, and have also been hit with joint aches and stiffness.

I’ve dealt with chronic fatigue and brain fog since my brain injury in 2008, but the fatigue I feel now is a whole new level. I feel like there are weights on my head, my arms, my legs. This past weekend I could barely walk down a few steps, barely raise my arms. I can’t stand for long without having to lean against something, and today I almost collapsed while cleaning the bathtub. My short-term memory has been even worse lately, leading to several conversations with therapists in which they ask if I’ve “done the homework” for the week and I don’t even remember discussing said homework, or I can’t remember something a friend said only minutes earlier.

So far, the doctors have no idea. For a while we thought it might be a mold issue, as I recently discovered a vast quantity hiding behind furniture in my room. However, my symptoms still progress. I’ve been tested for mono, Lyme, and autoimmune disorders, all negative. I’ve been cleared by a pulmonologist. My lab work, besides my ever-low WBC count, is normal.

Self-diagnosing can be dangerous and I don’t recommend it. But I’m a classic WebMD symptom checker fanatic. (I convinced myself only a couple of weeks ago that lymphoma was a very real possibility, but the cat-scan showed healthy lymph nodes.) My best guess has been that I have a tick-borne illness. While a few tick-borne diseases, such as Lyme, tested negative in my lab work, these diseases don’t always come back positive on the first or even second test, and there are many more types of tick-borne illnesses I haven’t been tested for. Lyme is extremely prevalent where I live, I have multiple symptoms of it, and everyone in the area who hears my symptoms has urged me to continue to pursue testing for it.

I know my body well. I know what causes my illnesses, I know what fatigues me, I know when an actual sickness hits and when it’s just my anxiety wreaking havoc on my physical health.

I don’t know anything about this.

I see a new doctor next week. I am barely functioning. Most of the past month has been spent in bed or on the couch. Recently, I’ve been able to learn how to work through some of my symptoms and get to my weekly therapy sessions. The other day I forced myself to go see a movie (and ended up having to hold to my mom’s arm to walk down the theater stairs afterwards). I can’t be out for more than an hour (sometimes less) without crashing. The other day I dressed and brushed my teeth, intending to run one quick errand, and those two simple, everyday tasks kept me from even making it out the door.

I know this is commonly said…but I don’t write this looking for pity. I write this because, in the state I’m in, I have been watching videos and reading blog posts from others who are struggling with similar symptoms, whether it be chronic fatigue, Lyme disease, etc., and it has given me strength. I write about this because I need to clear my head, sort out my thoughts, and maybe help someone else who is struggling feel a little less alone.

I’ll be posting updates on my health as I need to and as I learn more. I strongly believe in gut feelings, and my gut feeling is this is something more than my usual sicknesses.

I may get through this and realize I was wrong. This may all come to nothing, and within a short time I’ll be back to my “normal” self. But I’m not going to let that mentality overtake me so that I don’t follow through with doctors or ignore my bodily intuition. My body is currently telling me something is wrong. I feel it physically and mentally. I’ll be honest, this is scary, but I trust there is a purpose for it.

Have you ever dealt with a mysterious or chronic illness? What keeps you going? Let me know in the comments!

6 Comments

  1. Deborah Dimmitt
    April 30, 2019 / 8:17 pm

    Oh Sarah! I wish I’d written sooner! I was noticing that you’d been quiet for longer than your recent baseline. Bless you for sharing, and thank you for letting us know how to pray for you and your family and healthcare providers. I will also keep my antennae up as I go through my days as a registered nurse, always seeking knowledge to share…love you xxoo

    • Sarah
      Author
      May 1, 2019 / 7:34 am

      Thank you for your prayers! xo

  2. Melissa Beachun
    May 1, 2019 / 1:23 pm

    Sarah,

    My heart goes out to you! I know a couple friends who are struggling with tick borne illnesses and it is so hard. I’m wondering if that could be a possibility as you mentioned. Regardless, I pray you get answers and feel better soon!

    • Sarah
      Author
      May 1, 2019 / 1:34 pm

      Thank you so much for your prayers! It’s pretty insane how common tick borne illnesses are becoming.

  3. Cherie Leavitt
    May 2, 2019 / 1:26 pm

    Sarah….you don’t know me but I used to live across the street from the church in West Stewartstown. After moving to Maine,I came down with a mysterious illness that defied diagnosis…..until I went to a doctor who specialized in Lymes. I was on 6 antibiotics over 4 years and today I am one of the few who got cured! So hang in there the Lord will intervene. I’m praying for you! And, I will bring you up in prayer meeting at church.

    • Sarah
      Author
      May 4, 2019 / 4:44 pm

      Hi Cherie! Yes, I don’t think we’ve ever met but I do know your name! Thanks so much for reading. I’ve heard the recovery can take a very long time, so I’m happy to hear you were finally cured of Lyme Disease! Thank you so much for your prayers.

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