Four years into the odyssey
(Drawn in August 2006, when I first had suspicions about CFS).
Sunday, June 20 marked my fourth year of this dark, painful, strange, and enlightening experience with chronic illness. I went surfing with my then roommates, and about twenty minutes into the set something within me started repeating, over and over, "get out of the water, get out of the water". As soon as I made it to shore I collapsed in a state of exhaustion that I had never felt before. This wasn't a result of the set, I had been a serious athlete, working out vigorously six days a week in addition to holding two part time jobs and finishing up my bachelors degree during summer session, 2006. The next day I woke up unable to move. I spent the next 5 days just waiting for the illness to go away, but it only got worse. The doctor tested me for strep and mono, the likely perpetrators, but both came back negative. Over the course of the next nine months I went through four courses of antibiotics and steroids. At one point I could not talk or even swallow, my throat was so horribly swollen. An ENT scheduled me for a tonsillectomy for the moment I finished summer school, but I couldn't afford to stay in Irvine while I was sick.
This is a drawing I made after a disturbing dream I had shortly after I got sick. This dream intrigued me more than frightened me, and I see now how much of a predictor it was for the next few years. This man is not just crucified, he is threaded with metal wire, and the huge steel rib cage holds him up by his own skin. This represents so much the helplessness and the pain I was to feel over the next few years.
I moved back home for the surgery, but a new series of doctors yo-yo'd me for another 6 months before getting approval for the surgery.
The surgery revealed completely wrecked tonsils, degenerating with infection. I expected to get better after this, even starting up my exercise routine again. I got up to 23 miles on the bike and had a complete and total relapse only two months after my surgery. I have since then seen 16 or more doctors, 12 of whom were specialists in hematology, rheumatology, infectious disease, and neuro-immunology. I gave up vial after vial of blood, testing regularly for Lupus, MS, HIV, ALS, Mono, and Lyme disease. All came up negative, except for annoying and irregular traces of Mono.
I intended to write this blog feeling like I had come a long way since that horrible first year. I just graduated with my MFA in Animation from UCLA and am hopeful and inspired on my quest for a creative and satisfying career. However, when I went back to my calendar to find the exact date of the start of all this, I broke down in uncontrollable sobbing, suddenly mourning the life I once had and all the lost days I spent in bed, or on the floor, unable to move. Mourning and feeling compassion for the self who had the courage to fight to see doctor after doctor, even after they turned me away with nothing more than a shrug. Empathizing for the girl who questioned her own sanity after friends and family continually failed to understand or show compassion for the great suffering she had endured and continues to. It felt good to release these feelings that I seldom let myself experience, and now I feel ready to move forward and offer advice I have to share with other patients of CFIDS/ME and Fibromyalgia.
1. Don't waste your time with or on Energy Suckers. These are people who never are content with who you are or what you do. Cut these people out of your life, ASAP. I have zero tolerance for drama or BS now. It has made my life a lot easier.
2. Don't waste your energy feeling embarrassed by your cognitive dysfunction or physical limitations. You used to be able to keep up with intellectual conversation and sports games. Instead of wasting your energy beating yourself up for not being able to keep up, practice compassion for those who do not understand, and find a way to be content in the moment, whether you're able to show off or show up or not.
3. If you're not getting any better, you have to stop everything, and just take care of yourself. I had to quit my jobs and move back in with my parents for a year. I was able to take care of myself, but also subsequently became my mother's care taker (she had recently suffered a massive stroke). This taught me compassion and patience, but I was also in so much denial about myself because my mom had such visible disabilities and nobody could find anything wrong with me. I think this first year was crucial to my healing, and I spent a lot of energy worrying about other people. Once I moved to LA to start grad school, I felt so much better being able to wake up with no one to take care of but myself. After another year, I started to see improvement.
4. Listen to your body. Doctors can't tell you what is wrong with you, so you have to start to listen to your intuition coupled with the knowledge you can gain from reading medical journals and other publications regarding CFS/ME Neuro-immune dysfunctions. I became intolerant of alcohol a little over two years into the illness and realized my body really was trying to and able to communicate with me and my mind about what I could do to help myself. Six months ago I started being able to tolerate vitamins again, and have since then noticed improvement.
5. Learn peace of mind. This is not the same as admitting a psychological foundation for the illness. Cognitive behavioral therapy would help any Joe off the street improve his life. If you have the resources available to you, use them. A healthy does of skeptical spirituality can do you good too. When I'm having a particularly hard day, I tell myself to put it all in the Universe's hands (or God's hands, or Fate's hands, or what have you). If nothing else, this just takes the pressure off of myself for a little bit and I just allow myself to BE.
6. Stop looking for approval/understanding from your friends and family. Only those who have been through something horrible can understand or truly empathize with what you're going through. Accept right now that this is your struggle (for better and for worse, mostly for better because then you know it's just your thing and there is freedom in that), and find that when someone does express compassion, that it is truly a wonderful blessing.
Above all, find joy. Elizabeth Gilbert wrote in Eat Pray Love, "You were given life; it is your duty (and also your entitlement as a human being) to find something beautiful within life, no matter how slight." Stop fighting. Give in, and you will find so much more room in your life for joy.
Bless you all.