Hello! Thanks for checking out my website and blog.
As a coach, I not only have my own experiences with Chronic Lyme Disease, but I hear many stories from others. My goal here is to share stories and tips that will offer hope, provide some tools and help you get through your days as you work toward health. I’m new to this whole blog thing, so bare with me as I get in the groove!! I’m going to start here by posting an article that I wrote last Fall for The Monadnock Ledger-Transcript in Peterborough, NH. This is the unedited version! I’m starting with this so that you know where I’m coming from. It’s an overview of my story and how it lead me to coaching others….
Why did I decide to start coaching people with Chronic Lyme Disease?
It all started back in 2005, or wait, 2004, but possibly 2002 when I had vertigo? Hmmm. It is confusing. What I know for sure is that, in 2004 I had some sort of virus. A low-grade fever on and off for weeks; headaches, insomnia, the usual ‘I’m sick with some weird virus’ sort of thing. It didn’t stop me cold but I did go to see my doctor who told me that it was a virus and I was getting older, so it might take me longer than the standard 10 days to feel better. I was 43, and fit, and had a great diet, and tons of energy, until this ‘virus’. It did finally seem to clear, but then I had crippling pain in my right hip, then my left, then my knees were hurting on and off. I chalked all of this up to the fact that I had been a runner for 20 years. I went to my chiropractor many times, then to another chiropractor, then to a physical therapist, then to a rolfer. I was desperate as the pain was getting scary. I was worried it would effect my ability to climb mountains and ski with my kids, run, perform with my band, that it would slow me down! Also, during the months after the mysterious virus, I started having crazy insomnia, as in, I. Could. Not. Sleep. This led to exhaustion and anxiety. I had been through some big life shifts just a year or so earlier, so it seemed reasonable that this could all be stress related. As the months passed, even though I kept working and climbing and running and singing, I felt worse and worse. I remember feeling as if I was coming down with the flu over and over and over again. I took all sorts of herbs and essential oils to ward off whatever was chasing me, but on October 9, 2005, I crashed. I woke at 4:00 in the morning and thought, Oh My God, I am so sick! I had a big wedding that evening where I was singing. I couldn’t miss it and let everyone down, so I went, but as the evening wore on, my voice and breath slipped away as I fell into terrible illness. I didn’t know how I would make it home. As I drove through flooding rains, I remember thinking, ‘I am sicker than I have ever been in my life’. I knew, deep down, that something was terribly wrong, that I was in serious trouble. I crawled into bed when I got home, and there I would stay, most of the time, for the next 4 years, and honestly, much of the time for 9.
Over the next few weeks, of course I tried to get up and go! After three weeks being extremely sick, I got up and went for a run. I had convinced myself that this had always worked in the past when I wasn’t feeling well, so maybe this was my answer now (of course, in the 3 weeks my muscles had atrophied..it’s crazy how fast this happens, and I had lost 12 pounds off my already thin frame). I was simply not going to accept the fact that I was done-for so easily. I would beat this out of me with a long run, a burst of feel-good hormones and blood pumping through my veins, clearing everything out. Well, that just about ended me. I couldn’t sit upright for more than 5-10 minutes on most days. I could barely lift my feet off the ground. I’d shuffle into the kitchen to prepare a simple dinner for my two sons and myself. My boys had to get used to coming into my room to do homework or visit with me. We’d read a little bit, all snuggled together. The songs that I had always sung to them had to stop though, as I didn’t have the breath to sing. After talking quietly for 10 minutes, I was out of air. The fatigue was crushing. It felt as if my body was shutting down, that it simply could not keep up with the demands of staying alive. And yet, it was also determined. I was determined! It took 1.5 years after my collapse, and seemingly every specialist known to man (some world famous), before my local doctor ordered a Lyme test from Igenix, a Lyme literate lab in California and I found out that I had Lyme Disease. Of course, I had been very sick for a long time, so it had dug in deep and there were co-infections and other viruses and bacterial infections at play. (Of significant note is that I did get a standard Lyme test done at the beginning of my illness, but it showed nothing and was eliminated from the list of possible reasons I was so sick. (testing is still completely unreliable) Also, back in2004, there was not that much Lyme Disease in this area and few doctors had come across it as a completely debilitating, chronic disease). Following the diagnosis, I went on, for years, trying one ‘protocol’ after another. In a nutshell, I treated with many different herbal protocols, and with numerous antibiotics, on and off over the years. I used Homeopathy, Ayurveda, Traditional Chinese Medicine, Acupuncture, Massage, many different types of body work and energy work. I worked with nutritionists, chiropractors, physical therapists, hypnotists and shaman. I used RIFE (radiofrequency therapy), IR Sauna therapy, ionic detox therapy, and on and on. I meditated and prayed. A lot.
During my first couple of years my experience on my ‘bad’ days was one of rising in the morning (after a night of waking up 5-10+ times) and moving slowly about for 10minutes at a time, as I could not stay upright for more than that. On my good days, I’d have 1-3 hours where I could shuffle slowly and silently around the house, quietly tending to the basics and arranging rides and such for my boys. Then, by 11:00 a.m., I was done for the day. I felt, every day, as bad as if I had the worst flu imaginable, but with a different symptom picture. An interesting point is that, in the first few years my painful joints had stopped hurting for the most part (although they returned later on). The bugs had moved to another system in my body and now I simply felt worse than I ever had in my life, with crushing, completely debilitating fatigue. Crazy weird symptoms would come and go. I felt neurologically ‘frayed’. I would lie in bed with crushing chest pain and every inch of my nervous system trembling violently. Some days, it was as if my brain was at the bottom of the ocean, unable to clear. I felt as if I was just holding on, ready to break completely at any moment. I could not drive for more than a mile or two. I could not go into stores where the sounds and movement and lights and colors everywhere suddenly made me feel like I was in a war zone, where I wanted to dive into a ditch and cover my head. I could not look at a TV or at a computer screen for any length of time. I would print up articles (wearing sunglasses to search for them). I could read for very short periods off paper. It was in this way that I searched and searched for understanding and solutions. I became my own guinea pig, trying all sorts of protocols and products that had shown some success with some people. I was willing to try just about anything that offered any hope at all. It would take a book to write of all the details of my 10+ years with chronic Lyme Disease and Co-infections. It would take a book to talk about the effects on my life (financial stress, friends slipping away, new people coming in closer to help me, doctors suggesting that I might want to try antidepressants and a plan to get ‘active’ again, healers giving their time and love for little money, people suggesting in various ways that it was my ‘fault’ because I had been doing too much, people looking at me wondering how I could possibly still be sick!). It changed the way I view all of it, all of existence. It rewired my very being.
It’s true, becoming chronically ill changes everything. It shakes it all up.
There is grief. Just as with any loss, when you lose your health, you grieve. You grieve for the loss of our health and for each and every thing that you are unable to do. It breaks your heart. It shatters any sense of self-assurance you might have had. Suddenly you become very need-full. You have to learn to ask for help. A lot. You question who you are and what value you could possibly have in such a state! You have to work hard to let go of any of the ideas that you have had in terms of what you do, being who you are. It is a most scary process. As you go from doctor to doctor, trying this and then that, seemingly making no progress, you wonder what you did wrong for such a thing to have knocked you off your feet. You go to the ‘edge’ with despair weighing you down. Hopefully, you begin to realize that there are still things to be grateful for. And, hopefully, you start to see that there are bigger things at play, that maybe something good and possibly even beautiful might come out of something so terribly difficult. There is an old quote, “If you don’t have your health, you don’t have anything”. Well, this is just not true. If you don’t have your health, you still have love and compassion and gratitude. You are still you. You still have life. You can still be kind and caring or grumpy and angry! Just because you have a physical ailment does not mean that you have nothing!
As the days, months and years passed, I went through many phases. For the first couple of years every treatment protocol I started was going to be the ‘ONE’, the silver bullet, blasting through by body and putting everything back in order so that I could go ‘back‘ to my life. In the early years, every practitioner that I saw was sure that they knew what I needed. But as time went on, my view changed (as did that of my Lyme literate doctors). Of course I still hoped for the next thing to be the one that worked, but I also started realizing that it was all playing a part in supporting and helping my body. I started to think about working with the bugs instead of against them (of course I still wanted them out of my body!). I was never going ‘back’. I was living in the best way that I could, in the present, hoping, of course, for my health to return. Lyme and all the co-infections and sensitivities that gather to bring you into a chronic state of dis-ease is not a simple thing. There is no one drug or herb or mantra that will bring your health back into order. Each body is unique, so it is important to just keep trying. The combination that works for one person, can have no effect on another. If you catch Lyme Disease shortly after the tick bite, and treat with antibiotics, you will most likely recover quickly, but if it becomes chronic, it’s a whole different story. Every part of you needs support. I learned so many ways to support my body, mind and soul through the ancient healing modalities such as Ayurveda and Traditional Chinese Medicine. (I made up things that worked for me as well). I turned to Chi Gong and meditation and restorative yoga. I used positive affirmations. I wrote in a journal, even started writing poetry, just pouring out my pain and fear and hopes. I cried a lot! I used everything I could to support my body, but also my spirit, and let me tell you, they both still felt like they weren’t going to make it at times! Also, having someone who truly believes you and is deeply compassionate to talk with is imperative. I feel so blessed to have found these people, or maybe they found me.
Over time, I had parts of days and occasional stretches of days when I felt a little better, and started taking walks when my morning energy was present. I started to be able to read books and watch movies at home. It was constantly up and down, so that I might be a bit better for a few days and then hardly able to move for a stretch. It was very difficult to see any progress, but after 4 years, I started working for a couple of hours, two times a week at a fairly quiet place. It was hard on many days, but being out in the flow of humanity felt like a miracle after being isolated for so long. I ran into people now and then who were surprised to see me because they thought that I had moved away. An important note to make about healing is that it is not a steady uphill climb. It’s up 2 steps, down 1, up 3 and down 3, up 4 and down 2. Also, change is always happening, even when we can’t see or feel it. This was important for me to remind myself of. I continued to have stretches where I could barely move and had to call in sick. I continued to feel despair, right alongside gratitude. I went to the edge over and over. But, over time, my health improved. My restorative powers grew. I now, almost 11 years later, find that I feel good on the majority of days. I’d say that I’m fragile in a way that I never was and have to be very mindful of what I do and how I spend my precious, somewhat limited at this point, energy. I still slip back a bit now and then, but overall I live a very full life and feel so grateful for every moment spent without pain and free of feeling terribly sick. I feel so grateful for life. And, I feel so grateful that I can now help others not only survive, but also thrive as they navigate their way through Chronic Lyme Disease.
I’d like to make a few points, the first being, always listen to your body. Every kind of practitioner has limits. We are all people! If something feels ‘off’ and the doctor says that nothing is wrong, go to someone else to get help. We each have our own deep intuition and we should listen to it and trust it. I did not listen to mine, and made assumptions, and let an entire year of struggling go by without seeking answers. Second, Chronic Lyme Disease happens, not only to the person who is sick, but to the people who love and care about them. They need support too. And, lastly, Lyme Disease, along with the co-infections that often accompany it, shows up in numerous ways in different people. I told my story, but there are countless ways that one can be effected. If you don’t have achy joints, but you have strange heart issues, it could still be Lyme! It is known as the “great imitator” as it can manifest in so many different ways in different bodies and appear as many diseases. If you would like to read about Lyme Disease prevention and treatment, a great site to start with is:ILADS (the International Lyme and Associated Diseases Society) .
I am a certified Personal Empowerment Coach, specializing in working with people with Chronic Lyme Disease and associated illnesses. Please contact me by email at: info@survivethrivecoaching.com