My Battle with Chronic Fatigue
Every day is a fight
In March 2009, I realized that I wasn't becoming refreshed after rest. I kept waiting for that weekend where I would just relax and then feel better... but feeling better never came.
It is currently Nov 2010, and I am worse than I was in March '09, but around the same as I as in Nov '09. Having a stabilized chronic condition is a mixed blessing, I'm not getting any worse, but is there any hope for getting better? In this lens, I plan to share my experiences and struggles with accepting that I suffer from chronic fatigue. I hope that sharing my experiences will serve two purposes: 1) To help others who may be in the same situation and 2) To help me continue to fight and accept my condition.
This is a personal lens. Every photo in this lens has some personal significance, something that is positive, happy and uplifting (Such as the image of my friends' sleepy puppy, Pita).
The most common response:
"Oh yeah, I'm tired all the time, too."
Spoon Theory - But you don't look sick!
This is the story of how the author describes living with a chronic condition, Lupus, to a friend. The spoon theory illustrated can be applied to any chronic condition, whether there is pain or not. My mom shared this with me, and I feel that it applies:
- Spoon Theory
"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take
I love holidays, and decorating my home with a theme.
Do others understand me?
A huge component of the struggle
When I try to explain my disability to someone, I frequently hear in reply, "I'm tired all the time, too." I think the spoon theory story is a wonderful description of how it feels, but I figured that I would take a crack at it myself:
Think about a really hard day at your job, and how exhausted you feel when you get home. This is how I feel in the morning after I wake up. Sometimes I have so much trouble thinking that I am incapable of making a decision.
Communication can be a struggle. When I am completely drained, I feel as though it is apparent to everyone around me. But my symptoms don't have much of an external manifestation. Because fatigue is something that everyone feels, and often with some frequency, it is hard for someone to comprehend what it means to have chronic fatigue syndrome.
The healthy have the luxury of a life without choices, a gift most people take for granted.
Knitting and blogging about knitting elevate my spirit.
I may be okay today, but if I do this then I won't be tomorrow
The hardest thing for me to learn was to not overexert myself on days were I was feeling good. If there is a concert I want to go to on Sat afternoon, then I won't go to a bar on Friday night even if I'm having a "low" fatigue day.
I am getting better at shutting off my brain. If I can let myself exist, go with the flow, and not think about how tired I am, I last much longer. This does sound strange, but I look "normal". Decision making is difficult, as is multitasking. I am learning to relinquish control.
For example, at New Years 2010 we had a 3 day retreat in a cabin, with many friends who were visiting. I only stayed up late for new Year's eve itself, and the rest of the time went to bed early. I seemed to fair okay during the weekend. As soon as I got home, I went to bed and slept through the night, even though it was only 4pm. I was so drained that I was unable to do anything for days. But the people who see me don't see the consequences.
Take it one day at a time, but try to budget for tomorrow.
Snorkeling on the last trip where I was tired for reasons I could understand.
What do you do...
...when every test result is negative? Yes, it's great that you don't have anything bad.... but then what is making me sick?
You can call me Dr.
As of Feb 7, 2011!
I am thankful for the support that I have received from my friends and family. I have also been fortunate to receive support from the program administration and adviser in my PhD program. These amazing people found a way for me to finish my degree instead of going on a medical leave of absence. I am so grateful that I did not have to put my greatest academic goal on hold because of chronic fatigue.
On Monday February 7, 2011, I defended my dissertation. I am proud to say that I am now Dr. ChemKnits!
Walking along the Charles River with my fiance.
I am a fighter
My doctors have been unbelievably supportive through this whole process. I joke with them that my treatment is to live a frivolous, active lifestyle; avoiding stress and anxiety which can make fatigue worse. I try to do some kind of physical activity each day, even if it is just 10 min of aerobics in my apartment. I am not going to stop living my life because I am sick.
The greatest compliment I've received from my doctors is that they are impressed by how hard I am fighting this. It is nice to be reassured that you are doing the right things to have a happy, "healthy" life.
Chronic Fatigue Syndrome is not life threatening
I am not in any physical pain
I have loving, supportive friends and family
I have a fantastic doctor who has never questioned me
I'm not alone
this is not only my struggle
Like any medical struggle, the people around me are affected by my decrease in health. My fiance has been by my side through this whole process. He chose to move in with me after I was already sick. He holds my hand when I cry. He does silly little things to make me smile, laugh and let go of the frustration. He has NEVER questioned whether this is real. And when I am upset about what I cannot do, he reminds me that he isn't going anywhere. I don't tell him enough how grateful I am to have his love and support. Less and less do I think about what I have lost due to fatigue, and more about the wonderful things that are about to happen in our future.
Knowing that someone has chosen to be a part of this battle makes me feel stronger, and drive to fight harder. Every day his presence reminds me that I am not alone.
because the end of the story isn't written
11.5.2010: Thank you for taking the time to read my story. I want to add that I am a very happy, enthusiastic person, and that I have many things in my life that make me happy. Each month that goes by, I am getting better at accepting chronic fatigue as part of my life, and am therefore feeling less frustrated.
11:9:2010: I appreciate all of kind words you've left for me on this lens. My doctors are re-running some blood tests we ran last December... there is a chance we can expand on our hypothesis that I have a lingering viral infection, but a negative result to this test won't negate our hypothesis.