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Shannon Niedzinski: Chronic Fatigue

Thursday, August 12, 2012: “The thought of getting out of bed is torture. And a shower- no way! That is way too much work. There is so much pressure in my head it feels like it is going to burst. I try not to move too much because if I get overly fatigued the pain sets in.”

This excerpt was from a journal I started soon after I got sick, documenting my journey with chronic fatigue. Just a year before that I was involved in cross-fit four days a week and happily raising 2 preschoolers with my husband in Birmingham, MI. Everything changed when I was diagnosed with mono the previous year. My husband got mono at the same time. But, unlike him, I never recovered. I remained constantly fatigued; everyday felt like I had the flu. We had to hire full time help to care for the kids and I had to take at least 2 naps a day just to survive.

I went from doctor to doctor, trying to find out what was wrong with me. I was told everything from, “it is all in your head,” to “you are no spring chicken.” (I was 34 at the time.) I finally found a doctor who diagnosed me with prolonged Epstein Barr, otherwise known to some as chronic fatigue. I spent the first year and a half after my diagnosis on very strong medication prescribed by that doctor. That type of medication may work for some, but it wreaked havoc on my body and I wound up in the hospital after I had a toxic reaction to it. Because of the horrible side effects, I lost 30 pounds (I was already slender) and my gut was in bad shape.

A few people had suggested IV nutrition to me as a way of healing my gut. I was eventually referred to the Waller Wellness Center by another holistic doctor. My original intention was just to get the IV therapy, but I was so impressed by the knowledge and care of Mary (NP) and Pamela (PA) on my first visit I decided to transfer all my care there. They were able to give detailed explanations as to why my immune and other body systems weren’t functioning properly and they were confident I would get well.

I have been getting 2 IV’s a week for 4 months now and am on 17 supplements. They are all tailored to what several specific tests showed my body is lacking. I have been following the GAPS diet, which takes a lot of work including cooking fresh vegetables and meat and not eating anything processed.

It has been a big investment of time and financial resources throughout this journey. At times along the way I have been discouraged or didn’t know if I would really get better.  My biggest cheerleaders have been the nurses at The Center- Naomi, Alice and Robyn.  There have been many days I’ve come in crying because I was so tired I’d have to miss one of my kids’ field trips or I’d have a migraine that lasted days and Naomi would remind me of the progress that she’d seen already. I was constantly reminded that it would take time but I would get well if I didn’t give up.

I didn’t give up and I am starting to get well! It is a slow and steady progression. I didn’t get sick overnight and I don’t expect to get well overnight either.  I only nap once a day now. I have worked up to taking 10 minute walks outdoors. I pick my kids up from school every day and we eat dinner together. A year ago my kids asked if I knew how to ride a bike. Were they serious? I had done a triathlon just a few years back! But now all they could remember was me being sick. What they don’t know is that last weekend I had my bike tires pumped up with air. They were pretty flat after 3 years of nonuse. I’m looking forward to the next sunny weekend when I can surprise my whole family by asking them to join me for a bike ride!

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