I have been in the depths of Chronic Fatigue Syndrome for the past four months (and can now see that it started to make its appearance in April when my thryroid started malfunctioning). In July and August, I was sleeping up to 19 hours per day. I could feel that my adrenals were completely depleted and I thought my life was over. I didn’t want to live in that condition. I couldn’t even respond to e-mails. I would see that someone had written me, and felt the normal feeling of needing to respond, yet my body and brain were paralyzed. It felt as though I was reaching out my hand, but couldn’t make contact. Or that I was opening my mouth, but couldn’t speak. I was so tired that I could not say the word “hello” to someone passing by me. I could barely make it to the grocery store. Living with this disease is like having a shade attached to the top of your head which is always drawn down to your ankles. My head constantly hurt and the few hours that I was awake, I lived in a haze, unable to do anything but watch TV. By September, I realized that I was suffering from Chronic Fatigue Syndrome, in which no amount of sleep replenishes you, and any energy expended further depletes you. I was very fortunate to have a fellow long distance hiker write to me about her experience with the disease. She wrote me one of the best e-mails I have ever received. She told me about the epiphanies she received during this time, gave me the name of the best book written on the subject, suggested I be open to my own miracles happening, and urged me to not attempt to do any exercise (even walking or stretching) for a full six months, among many other things. She also told me that I will never be cured of this illness, although it is possible to put in into remission.
By the middle of the month, I learned that there is a strong link between Leaky Gut (holes in the intestines) and Chronic Fatigue Syndrome! This was precisely what had happened to me! Food leaks through these holes and travels into the bloodstream. These toxins illicit an immune response and create inflammation throughout the body. This inflammation then starts to shut the other organs of the body down. My thyroid and adrenal glands had already been clearly affected. The liver and kidney, and other organs are also at high risk. This systemic inflammation also primes the body for a host of other autoimmune diseases, as well as cancer. Prior to my discovery, both my primary care physician and endocrinologist refused to test me properly for thyroid or adrenal function. I was at my wit’s end, being actively turned away from help. didn’t know what I was supposed to do. But this discovery gave me understanding of what was happening in my body, and steps to start taking to address the root cause. Through serious and very diligent dietary work, I learned that it was possible for some healing to occur within a time frame of 9 months to two years (with the ever present possibility of it returning- especially when not being extremely attentive to what one is eating). I knew that I needed to incorporate kimchi, kefir, and bone broth into my diet on a daily basis, and eliminate all sugar, dairy, and gluten.
I started to eat the kimchi and make smoothies with kefir on a nearly daily basis beginning sometime in September, and by the end of the month, I started incorporating bone broth into my diet. After this last introduction, my intestines became very painful again- a response that surprised me. I decided to take a day off and then only drink 8 ounces per day. The pain began to subside as time went on.
After discovering a wonderful website by a nutritionist named Jessica Flanigan, I realized that I was not going to have a chance at healing unless I eliminated ALL foods that cause an inflammatory response. Because I now have an autoimmune disease on top of Leaky Gut, I needed to eliminate even more foods: Coffee, sugar, all grains, all dairy (including yogurt), eggs, nuts (including almond milk), seeds, all beans (including miso and soy), alcohol, tomatoes, peppers, chili, etc, etc. I read that 95% is not doing the diet. And I got very sad. The initial elimination period lasts from 2-3 months, after which you are allowed to add back in a single item every five days and see how your body reacts. Most people with an autoimmune disorder have to stay on a highly restricted diet for the rest of their lives. Those who suffer from Leaky Gut are in the same situation. The lack of good bacteria and the intestinal holes this produces cause an array of food allergies in the body. I also have been learning that not all those who follow strict diet and supplement plans heal (even after years). There is clearly another piece to these illnesses that represents a more spiritual aspect. This is a topic that I am very fascinated by and will be writing a lot about in the coming months.
I took a weekend to gather my strength and began my very restricted diet on October 19th. Prior to this start, I would often tell myself that I do not even want to live if I can’t have coffee or chocolate. I felt like those were the two things in my life that gave me the most pleasure and I couldn’t see how it was possible to be alive without them. I also thought about my 2 week attempts at no carb diets 10 years ago and how impossible it became to do that sequential times. I didn’t FEEL good. Every body is different and requires different foods. I started to reason with myself that I needed sugar and coffee and that without those things, I wouldn’t have enough energy. But then I thought… My energy can’t get any lower than it is now, and since I can’t move or even stay awake for many hours, I really don’t have anything to worry about. I just had to come to terms with no longer receiving any pleasure from food. It was now purely functional.
And so, Monday morning, I had my first cup of tea, and made my first cold smoothie on a very cold morning (another reason I thought I couldn’t do this…). This is now my only choice for breakfast. I had a raging headache that afternoon and evening, but i got through it (NSAIDS are also off the list). I have now successfully completed day 12. I have learned that when presented with a life or death situation, it is easier to do something very hard and restrictive than when you are merely trying to lose some extra pounds.
I also FINALLY started meditating one week ago. Every night, I have sat for 15-25 minutes! The funniest thing is, after all of that resistance of getting off the couch and moving to the floor, I quickly discovered that I LOVE being in that protective space where nothing can touch me! The ego mind will do everything it can to keep you from doing those things that are best for you! And lastly, I have officially started my study of “A Course in Miracles”!
This path to healing is likely going to be a long one. Most people stay in the acute phase for at least a year. Others spend 8 years, or 20 years, or even a lifetime in it. The famous Buddhist nun, meditator, author, and speaker Pema Chodron has had it for the last 20 years. Currently, I am sleeping an average of 14 hours per day (after 12 hours of sleep, I get up, stay awake for about 4-5 hours, take a 2 hour nap, then stay up for another 4-5 hours- mostly sitting still, watching TV or listening to podcasts). On harder days, I sleep at least 16 hours. My body still has no ability to recover, which is one of the hardest things about this illness (Goodbye hiking!!). When I do more than sit all day, I have to sleep at least 14 (sometimes 16) hours overnight. My body feels like a cement block and most of the time, I can not even open my eyes. In the last 4 months, I have not been able to sleep less than 12 hours per night. I have only had to give my talk 5 times in the last 3 months, but I couldn’t have done any more than that. My brain started to become impaired and I was losing my memory. And each talk would wipe me out for up to a week afterwards. Another hard aspect of this illness is its invisibility. People who see me on a rare occasion don’t see me as a sick person. They have no idea what my daily experience is like. If I were on crutches or in a cast, some people might extend more sympathy, but no one knows what I am and have been going through. They also can’t comprehend what the experience is like having never gone through it before. I did meet one woman who came to my talk this Tuesday who told me she had suffered from it. She said those were the worst months of her life. She had a constant, very painful headache for 4 months, felt that she was a burden on her family, and wanted to end her life. This is an extremely difficult prolonged experience. No one asks for a chronic illness. It robs you of your life. But I am excited to dive into a deep period of learning and healing and see what arises if I manage to break through to the other side!
I look forward to sharing my experience with you!
Thank you for following.
And thank you for your patience!