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
Real Life During a Flare
June 4, 2016
I've been experiencing a flare (a significant exacerbation of symptoms) for about ten weeks now. Usually, I only like to talk about CFS/SEID in terms of practical solutions I'm pursuing to significantly regain my health. But I don't have any solutions today. I just need to talk through what I've been experiencing. I'm working on coping with illness and disappointment by expressing my emotions in a healthy way, and I also want to paint an accurate picture of some of the less glamorous struggles with CFS, to help healthy readers understand and to help sick readers feel less alone.
Hands-down, the worst part of CFS is what it does to your mind. On one hand, you have conventional doctors telling you that all your lab tests are normal and you must just be depressed. Of course, you know something is actually very wrong physically, but CFS does affect the nervous system and brain chemistry just like it affects the digestive system, circulatory system, endocrine system, etc. The mental fatigue of CFS is at least as debilitating as the physical fatigue. Plus, people with CFS are often depressed as a result of their illness (add altered brain chemistry to being horribly sick and in pain all the time and see if you don't get depressed!), but the depression did not cause their illness. It's secondary, just one symptom.
Sometimes during a flare that's just dragging on and on, though, it gets to the point where I think, surely I must just be depressed. And somehow, the way I feel mentally must be my fault. Maybe I'm just not trying hard enough and I need to push myself to get out of the house, take on a fun activity or project, try harder to live life. Last week, these thoughts started running through my head. I would sleep through my alarm and wake up around lunchtime, dazed and confused and lacking any desire to do anything but lie in bed mindlessly watching Netflix re-runs or take a nap after already sleeping in half the day. "Surely, my illness can't be this bad; it shouldn't be making me so dazed and mentally drained; I'm just depressed and shouldn't let myself take yet another day off!" Then, I made myself take a shower and drive to Barnes and Noble to "reclaim my physical energy by nurturing my mental health." HA! It was wonderful for my mental health, but disastrous for my physical health. When I got home, I was utterly exhausted and unable to do anything but lie in bed dazed the entire evening. Another day, I decided that I was in a mental funk and should spend some extra time taking a shower and putting make-up on. Again, great for my mental health.....but I spent literally all the energy I had for the day getting ready for the day. I went to the mall later with my boyfriend, and he ended up having to carry me to the car just because I had decided to spend my energy standing for half an hour in the morning taking a shower and blow-drying my hair.
The tricky thing about CFS is that it IS imperative to nurture your mental health, but sometimes CFS just causes you to feel like you're in a fog, not quite awake, not able to really use your brain to think. You can't just "snap out of it," and you have to be careful not to exacerbate physical symptoms trying to "get out of the house" before your body is ready, since the physical symptoms often trigger the mental symptoms. In hind-sight, I probably should have set a smaller goal last week of driving to Starbucks for 1/2-hr instead of walking around Barnes and Noble and spending over an hour there. And often, I need to content myself with staying at home watching lighthearted TV and writing in my gratitude journal and call it a day. Today I woke up and recognized the warning signs that I need to stay home in "hibernation." I was giving myself pep talks aloud, like, "OK, I'm confused, out of it, exhausted, and can't make a to-do list or focus. So just focus on getting dressed, Lizzie. You can do it." When your brain honestly can't handle any more than that.....you need a day off, you do not need to push yourself anymore.
So I'm playing hookey today....again. I miss being able to drive/run errands everyday. I miss being able to do chores. I DESPERATELY miss my intense piano practice sessions. I don't want to feel exhausted both physically and mentally, confused and dazed, like I'm existing in a dream. My family is going to see a movie tonight. My first thought was, "That's what I need for my mood! That will snap me out of this funk!" I want to go so badly! I want to have fun and enjoy spending time with my awesome family. And I want to feel like myself again. But I know I'm not ready for it. My body's too tired. My brain's too tired. So I acknowledge my disappointment, but I don't dwell on it. CFS isn't fun, but it's life right now, so I accept it and roll with it. CFS may influence my energy and mood, but to some extent I can still control my response to my circumstances and be careful not to feed into depression.
I drank a solid two cups of coffee before writing this. Now, it's starting to wear off. Hopefully, this blog post makes sense.....a foggy brain on caffeine doesn't produce the most ideal conditions for writing. Looking around my room, my eyes are tired. The world looks cloudy and my vision is blurry. I'll probably lie here the rest of the day, semi-napping, listening to Psych re-runs or relaxing podcasts the rest of the day. That's OK; it's just a bad day, and maybe tomorrow will be better.