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
August 23, 2017
It's been a fantastic summer. I took a summer job that involved taking care of two kids for a full day four days a week. So I spent my summer swimming for hours on end, driving all over town, playing laser tag, playing kickball, playing countless board games, going to a trampoline park, going to the arcade, going to the movies, etc etc etc. I didn't miss a single day of work due to SEID this summer.....even though I was working strenuous 8-hr days with literally no break. And it got me in shape! Not only did I win physical victories at my job, but I planned a big wedding and learned aerials for a 4-minute long swing dance with my husband. Years ago, when I was sick and single, I thought if I ever got married, it might have to be a small, quiet ceremony with as little stimuli as possible so I could last through it. Shoot, even when my sister got married last year, I was terrified that I would get a low blood pressure episode and faint while standing up there as a bridesmaid. That wasn't even a remote concern this summer for my wedding. I was healthier and more toned than I would have thought possible even a year ago. All this after being unable to exercise for 3.5 years once I came down with SEID. Miraculous! However, my health still has its limits. I usually crash and do next to nothing after work. And I have been in a tired funk the past few days (although that could be partially due to my wedding happening a few days ago). Admittedly, some nightshades and sugar and moderate amounts of caffeine have crept into my diet during my active summer. And my doctor had started me on weekly red light therapy to improve my thyroid function, but I had to postpone it once my job started since it directly conflicted with my work schedule. So starting the day after Labor Day (the first week after my summer job ends), I plan to do a Whole 30 for 2 weeks (ok, a Whole 14 then) and also start the habit of saving any fruit for after lunch to decrease my reliance on sugar. And I can start my treatment back up. And actually take sane breaks during my workdays and have more control over my schedule. And get on the piano more (practice was non-existent June and July). I can't WAIT for the school year to start!
So that's how things are currently, physically.
I'm working on something else with my counselor for my mental health: a throwback to when I first got sick. I am starting to try to be able to talk about my traumatic first year or so of illness. Why am I doing this when things are going so well right now? I'd love to just forget about that year and focus on my wonderful new life now. But sometimes something, even a little thing. will trigger a sudden memory or feeling from that year and stop me in my tracks. It will make me feel physically sick and produce a knee-jerk reaction in my brain that says "run away, you can't talk or think about this." And if I read an article about SEID or happen across someone else's story that reminds me of anything negative I experienced early on in my illness, I can go from being happy to being an emotional, depressed mess within minutes. So it's time to dig up lousy memories from the worst year of my life. Won't this be fun. But as hard as it was, that year was an important part of my life and growth as a person. So I gotta face it, accept it, and be able to articulate how it felt, rather than pretend that it didn't happen.
I started my attempt at describing these events at my last counseling session. I thought I was telling my counselor everything, but she kept interrupting me to tell me to describe my symptoms and feelings in detail. I was frustrated because I thought I was sharing in detail. But after my session, a bunch of feelings associated with these events came back that I had forgotten about, and I got it. I'm used to protecting myself from many of my deepest feelings (shock, grief, months of severe depression, internal dialogues I had, etc) that I experienced that year. I don't know how to articulate a lot of it. But deep down I want to. So I'm going to start blogging about my first year of illness. Part of me has always been afraid to share that experience with others....what if it sounds too negative, or like I just want attention, or too unbelievable? Those were some of my biggest concerns that first year, as well. On one hand, I wanted to share with those closest to me the extent of how I felt, but on the other hand, I was convinced that, because my symptoms felt so extreme, if I let myself share everything I was feeling, all my friends would think I was a downer, attention-grabbing, or just making stuff up. My fear of rejection didn't help. I was afraid all my friends would give up on me and leave. But my self-esteem and circumstances are different now, and I'm not forcing anyone to read my blog against their will, so I feel comfortable writing whatever I am working on, without worrying if all my friends/readers will find it interesting.