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
May 5, 2018
It's been a while so I have a ton to update, but I'm going to have to break it up into a few posts after an overall recap here. My semester just ended and my main summer job doesn't start until June 25th, so I actually have time to blog and focus on my health now! :)
Spring 2018 semester recap: stamina better than last semester (YAY), blood sugar regulation better (YAY), but nervous system still needs work (I still experience the 48-hour post-performance crash, and if I have four performances in a row without enough recovery time, my performance suffers by the time I get to the last concert). I also still struggle with memory slips in performance, and my neck and back are in rough shape (headed towards arthritis, caught it just in time, seeing a chiropractor now).
I'll write more detailed posts later about chiropractic stuff, thyroid treatment, and how my health is at the end of the month. I finished the semester Tuesday. On Thursday, I started an intense focused time of self-care....supplements, red light therapy, exercises, mental health activities, rest/sleep, focused nutrition, you name it. One of my main goals this summer is to research, improve my health, and get as strong as I can before performances pick back up this school year. One big motivation is that I had three performances that didn't go well by my standards this semester. I had lots of other successful performances, but one of these performances in particular really fell short of my standards, and it was an important one. The one thing all three performances had in common was that they occurred during a flare, two days after another major performance. I just wasn't well enough to perform consistently by the end of the semester. So the best thing I can do for my career this summer is to improve my health so I can gracefully and successfully handle the end of my next semester. I need to minimize the 48-hour crash.
Today is the 3rd day of my health reset (which means no sugar, limited caffeine, no nuts, no snacks). I feel lazy, I don't want to do anything. But I know the problem is fatigue, not laziness. It hit me right before my master's recital at the end of the semester. I couldn't stand to take a shower, I couldn't walk fast, my arms felt heavier and more drained of energy every time I moved them. Today I feel depressed and anxious. Depressed that I feel so symptomatic right now.....how in the world could I have such a successful semester working full-time, going on concert tour, performing with a symphony....then crash with systemic exertion intolerance disease the second it's over? Am I just not motivated enough to be productive now that most of the big events are over? Is it a mental problem? When I honestly ask myself these questions, though, I know that's not true. I'm excited to practice new rep this summer, to lead my kids' music camp (bach2basics.com, check us out!), and to stay on top of projects while practicing self-care at the same time. I want to start the summer off with a bang and conquer the world. I bought the coolest planner ever, and it's killing me that I don't feel physically or mentally up to using it much this week. But I just haven't given my body enough time to recover from conquering so much of the world this spring. And if it were mental and just a reaction to the semester being over, I wouldn't have crashed until after my master's recital. I think my crash right now is more severe than usual because, even though my to-do list is substantial, my calendar is freer than it has been in months, so I don't feel that sense of urgency that makes me tap into my adrenaline. And I just cut off my sugar/extra decaf coffee supply that I had been using to get through the hard days near the end of the semester, so my body has no choice but to actually crash. I keep telling myself, it's ok to crash. It's ok to still have symptoms. It's ok to still have to spend money and effort on a condition, and to treat the condition really seriously. Being in a flare doesn't take away from the progress I made, and it doesn't make me a failure. I have an ongoing, complicated condition with many contributing factors. This disease was so bad at one point, I couldn't practice at all. Just because it's better now and I push myself to pass for a normal person most of the time, doesn't mean I should settle for "almost good enough" health and not take my condition seriously.
Now I just need to figure out how much to pace myself....I took yesterday off, which was WONDERFUL, but I don't feel 100% today, yet I get stressed thinking about my to-do list piling up if I rest indefinitely until I feel great. I just started a detox. It could be a couple weeks before my energy level adjusts. I certainly can't quit life completely for two weeks. One of the most stressful things about chronic illness is the uncertainty, not knowing what the best course of action is to keep myself healthy and productive, not knowing what the consequences will be to my health or career once I follow-through on a plan. But I have to choose a plan anyway and move forward. Just keep moving this week, Lizzie. Just keep moving....with lots of regular breaks in-between.