I'm Not Tired: International CFS/SEID/ME Awareness Day
May 12, 2015
Tomorrow, my sister Michelle and I will embark on a ten-week health overhaul, a candida/digestive health program from www.thewholejourney.com. It add...
April 25, 2015
From this point, I am adding more structure to this blog. On Saturdays, I'll give a general update on Michelle's and my progress with our illnesses a...
Creative Time Management Series
June 7, 2015
Origin Story part 1, and other depressing stuff :P
December 3, 2017
I haven't blogged yet about my first year of illness, because I hate to dwell on anything sad or traumatic, and it's been such a fun, exciting semester at school, I haven't felt like stopping and reliving anything depressing. I had the same problem growing up....I would forget or suppress traumatic memories when I was abused. I've always shied away from confronting stuff like this. But that's not the healthiest approach.
Why do I finally feel like writing now? This week has been LOUSY physically, and I am so depressed right now I can't sleep. Most days this week have been way too busy and stressful, after surviving on half a night of sleep and nothing other than fruit, chocolate, and protein bars. As a result, I collapsed from low blood pressure 5 times this week (which is 4-5 more times than usual, NOT cool). And apparently I hit my head one of those times. I'm fine, so that's cool, but I didn't realize I had hit my head until the day after. Not immediately realizing that I'd hurt myself: again, NOT cool. My mood is messed up too, and it's been all I can do to try to keep one foot in front of the other, think clearly (or rather, be ok with realizing I'm not thinking clearly, and take anything requiring mental effort off my schedule if possible), and not bite anyone's head off in the process. Writing sounded therapeutic, so here I am. And I figured if I'm already in that depressed place where my body reminds me that a bad flare of this stupid health condition is still possible, it's as good a time as any to start blogging about how I got sick. I've also given myself a deadline (New Year's) to blog about this subject before I reformat my blog, so I've gotta get started (I'm SO excited about my 2018 plans for the blog, but I'll write more on that closer to Near Year).
Ok, no more putting off the inevitable. Here is my Origin Story.....I'm kind of a super hero nerd, and calling this an origin story makes it sound more like fun to me than a therapy assignment :)
I'm not actually going to write about my "first year of illness" (last year of undergrad) yet. That was the year I reached the tipping point into a severe chronic illness, but my health had been on the wrong track for years:
I grew up super healthy until I was a teenager. Physically, that is. Mentally, I was a wreck. I didn't know at the time that mental and physical health are often connected and feed into one another. But I remember constantly being paranoid, and I had a million phobias, including extreme social anxiety. I was also an overachieving perfectionist (still am....but now I'm a bit more reasonable), always concerned I would not be good enough at whatever I did. I realize now that most of these attitudes were products of the abusive environment I grew up in. At the time, though, I blamed myself for every single shortcoming or fear I had, thinking everything was my fault. I didn't realize it at the time, but I was conditioned to stay in a constant state of fight or flight, which would ultimately put stress on my adrenals and digestive system, leading to immune system, hormone, and food sensitivity problems later on.
When I was twelve, my family moved away from the D.C. area to Virginia Beach. I had to leave all my friends. I saw them one week and was gone the next, no warning, no chance to say goodbye. Around the same time, my grandmother was diagnosed with cancer and died within a month. During all that stress, I was exposed to strep throat for the first time. I caught it seven times that year. It got to the point where, on the first day after completing a course of antibiotics, I would wake up with strep again. I went to an ENT (I was a serious hypochondriac at the time so I went kicking and screaming....more on hypochondria later), and he told me he'd take my tonsils out if I got strep one more time that year. I never caught it again (whew!). But during that year, I still got sick every other week. Not weird CFS stuff, but things like mild fevers that would last just a day or so (that actually is a CFS symptom, just not one of the really weird ones). My whole family caught everything going around that year, but I was still getting sick twice as often as anyone else.
After that first year in Southern Va, I guess my immune system got its act together and adjusted to the new surroundings, since I stopped getting sick all the time. But for the first time, I started developing seasonal allergies/sinus issues. Each year in high school, it would get worse. I had several run-ins with sinus infections, and a couple bouts of bronchitis and pneumonia by the time I graduated. When I think back to when my health problems started, even though I didn't reach my breaking point till college, I really never fully regained my health after that first year in Virginia Beach. I think the stressors and constant antibiotic use hurt the lining of my digestive system and threw off the balance of my gut microbiome, which would both lead to a weaker immune system, hence, allergies/sinus issues. During my teenage years, I also struggled with body image, emotional eating (triggered right after we moved and my grandmother died), and cravings for high-carb foods. These issues certainly didn't help my stress, digestive system, or immune system.
I actually did experience a couple CFS symptoms in high school, but I thought they were isolated incidents, and I had no idea what what was actually happening. I always had a ton of adrenaline around the first day of school (due to the combo of extreme social anxiety with an intense love/excitement for absolutely every school subject). My first day of 10th grade, I had an awesome day at school, but once I got home, intense paralysis hit. I crashed so hard, my mom had to carry me upstairs and put me in a chair since I couldn't walk up the stairs, my muscles were so stiff and my cells were totally drained for hours. It surprised and scared me, but it only happened once, until my last year of college, so I forgot about it. Now, it's a familiar symptom: cells are drained of energy after overexertion/excitement, leading to a paralyzing fatigue.
11th grade, I got my first taste of walking the fine line between supporting my health and supporting my career, because my body made me. Early on in the semester, I was working really hard at fitting in enough piano practice and getting great grades, but my health started to suffer. I would feel so worn out I would get nauseous. It happened twice in one week at one point, and I had to leave school early one day because I was too tired/nauseous to sit in class. I learned from the experience, though, and I prioritized self-care and sleep the rest of the year. But I lost too much of my intense drive, for fear of overdoing it. I played it safe, and it resulted in a flat year professionally for me. I think I played it safe because I was scared. I recognized that I didn't have quite as much energy as anyone else, that I wasn't quite normal, and I was very uncomfortable with the idea of being weak (I had been taught by my abuser that being weak or dependent on anyone made me worthless, and I had bought into it, so I was terrified of not measuring up or being as strong or stronger than anyone else). If I dwelt on it too much, I would get upset that I didn't have quite as much energy to play the piano as I wanted, or that I had to get good sleep more consistently than the average person in order to function reasonably well.
12th grade, I learned from the previous year, and I struck more of a balance, the key being focus. When on the piano, I would focus intensely and summon my drive for excellence. But I also had a firm self-care routine in place that allowed me to maintain my health. With the exception of my worsening sinuses, I had a good year, both professionally and health-wise.
There. That was the easiest part of the story. Next: college before CFS, then college and life after CFS. Then I'm done, woohoo!