One of the hardest things for me to accept during a CFS flare-up is the fact that doing the littlest things can where me out and set me back. Even a few months ago, when I was not feeling well, I was walking with my dogs, doing yoga, and riding my stationary bike for 30 minutes. I was in denial that I was having an episode and wanted to believe that more exercise would make my mind more alert, help me sleep, and give me energy. Big mistake!!
The truth is that this flare-up has been going on for years but I misread the signs. I was having terrible intestinal problems that started in Alaska. A doctor in Fairbanks told me that the problem was my gallbladder and it had to be removed. I did feel better for a while but never fully recovered. The symptoms got worse when we moved to Texas though I was having occasional episodes, even having to pull off the road in the Canadian Rockies to be sick on the side of the road. Fortunately, there was no traffic to witness my weak moment and no bears came out of the woods to scare me.
After we were settled in Texas, I finally found a doctor who took some tests and referred me to a gastroenterologist in Waco. The next year included every gastro test imaginable and when they could no longer definitively find a cause, I was referred to another specialist in Dallas. My next referral included yet more tests, procedures, and no more clear answers. One anesthesiologist commented on my strong lungs and heart before she put me in the twilight zone and my last conscious thought was, “why do I feel so crappy?” That was also one of my first clear thoughts when I woke up later that morning.
In a year, I had been put on three different diets – low-fat, high fiber, low fiber, low carb…. – but nothing seemed to help. I had spent over $6000 in medical expenses (and I have health insurance!!) yet there was still no diagnosis. The good news was that I don’t have Crohn’s Disease, cancer, pancreatitis (which the first specialist suspected) or any other potentially life threatening illness. My digestion is slow and I have learned to adjust which has helped in that I no longer vomit but the diarrhea persisted. I should have been relieved but was aggravated and frustrated.
Then came my ‘aha’ moment. My mother mentioned learning about the Vega nerve which starts in your neck and travels through the gallbladder, stomach, and heart. As soon as she mentioned a nerve, I realized that my problem may in fact be related to CFS and/or fibromyalgia. I decided to go try the route that had been so successful in the past – acupuncture. I was frustrated with western medicine and decided to explore other options.
I am so fortunate to have found my acupuncturist – Kristen Horner – in Waco. She is professional, obviously has a good understanding of fibromyalgia and CFS, and does a very good job of explaining the complexities of Chinese medicine. Not that I have a good understanding of it but her descriptions actually make sense to me. As important to me as the acupuncture treatment are Kristen’s listening skills as I explain my continued health challenges and frustrations each week. I complain about what I am not able to do, and she offers helpful suggestions that seem doable and provide me with a sense of accomplishment. She suggested I try a hands-on craft and I decided to give knitting a try. I have already given away a scarf and baby blanket and am making two more baby blankets for my step grand-twins first birthday. My acupuncturist even suggested I consider starting a blog. I wanted to write a book but her suggestions seemed more doable. It feels good to get some of the thoughts that ruminate, especially at night, and is less daunting than writing a book that would likely never get published.
Concentration is very difficult right now. I am not able to read much and working on my M.Ed. is not feasible right now. Exercise is going to have to wait until I am healthier.
Instead of pushing myself to walk the dogs, clean the house, do laundry, take a walk, try to finish my M.Ed. in school counseling, and getting frustrated if I don’t do these things and too sick and tired if I do too many of these things, am learning to take things real easy. I have a dvd on Qi Gong and Kristen suggested I try a few movements for just a few minutes which is doable and even enough right now. When I feel the need to write something, I add to this blog which satisfies my need for some king of mental stimulation. Knitting allows me to sit, not think too much, yet have a sense of accomplishment.
Progress is slow but I am still confident that acupuncture and the prescribed herbs will again get me on the road to good health. I am fortunate to have a husband who constantly urges me to take it easy (I rarely listen) and doesn’t care about dirt and dog hair. I am lucky to have an acupuncturist who is knowledgeable in chinese medicine but who seems to understand what I am going through and provides me with realistic alternatives that allow me to cope during this difficult time.
In the meantime, I will work hard to take easy.