This has not been the best year of my life, or so I tend to think these days. This year, I was diagnosed with chronic Lyme disease and several other tick borne diseases.
I've been sickish and progressively sicker for at least 5 years and took a neurological dive this past summer into the fall. Lyme disease, contrary to popular misperception, can develop into an entrenched chronic immune suppressive infection unless quickly treated with the proper antibiotics for at least 28 days to 6 weeks. It is a neurological infection just like its "cousin," syphilis. It can make you insane, and that's about how I have been feeling the past few months. Neuroborreliosis, aka Borrelia burgdorferi (Bb)/Lyme disease can be an underlying cause of ALS, Parkinson's, MS, lupus, CFS, fibromyalgia, Alzheimer's, senility. Add in the fact that ticks often carry a plethora of diseases that they obtain from their vector host (the white footed mouse), we often see what some are calling Lyme complex, which means a lot of pathogens having a party in an immune compromised host.
I am infectedwith Bb, two forms of babesia (the American malaria), and hemobartonella. I know folks who also have CMV, Epstein Barr, HHV-6, and other viruses running loose as well. I have fibromyalgia, chronic fatigue (which translates to chronic pain and incapacitating fatigue), chills, tremors, joint problems, and various neurological symptoms. My head buzzes and spins, most times a low hum of firey fuzz. I can't think or talk straight at times. Lights hurt my eyes and noise my ears. Sometimes I can't remember what I am talking about or what I did a few minutes ago. I can feel unstable, emotional, anxious, depressed. I can slur words and get a "buzz out" kind of dizzy feeling that makes me feel as if I am losing consciousness.
My digestive tract is on strike. I lost 30 pounds almost overnight. My body aches, and I can be ragged out tired for a day or so; I recover and I have energy again; then, I am hit once again. I tremor and shake. Old childhood fears have resurfaced. (How do you ask your daughter to stand in the crack of the door of the public bathroom that you persist must not be shut tight because you are terrified of being locked in?). When I take medications that kill the Bb in my brain, I experience strong herxheimer reactions (die off where the toxins from the bugs explode into the body and cause symptoms to increase) which can drop me into a deep depression almost overnight, or cause my Lyme induced anxiety to surface big time. I can't drive for over 30 minutes without experiencing severe hypersomnia. My body goes into tremors when I vacuum the house, sometimes one room will do me in. Last time I did the whole house, the tremors lasted 3 days. I can't get alot done at once. I have to slowly pace myself. I am unreliable. You cannot depend on me.
In the midst of my struggles with Lyme complex, I am a homeschooling mother with two children who are depending on me, one who is undergoing treatment for infection with Bb that we think we caught before "late stage" chronic (often children with Lyme infection do not manifest chronic infection until puberty). They depend on me to take them to fun and interesting places with their friends. They depend on me to make sure they are not left out of social gatherings as much as possible. They depend of me to forget my worries and live in the present with them as much as possible. They depend on me to be a strong, sure, safe presence for them. They have missed outings. They see a mom almost constantly in pain, sometimes too involved in getting well to pay attention to them. They have seen me crawl into a ball and weep for hours. I have failed them. I am not the image of the mom that I want to be for my children.
I recently posted my lamentations and concerns to my local Lyme disease support group e-list. What I heard in response was uplifting and has given me a light to place at the end of my tunnel. Several people talked about how their children have become more compassionate and stronger because of their illness. These children received gifts in the garbage and are grander, fuller people because of it. Moms talked of days in bed playing boardgames with their children,watching movies together, talking with each other. They talked of how their children adapted and how they all found blessings in the curse, so to speak. Down time became its on special time.
So, I too have made a conscious effort to seek the blessing. I still feel tremendous guilt and anger at my situation (and myself) at times, especially when the bugs are acting up in my head. But I am trying to look past that and to look at what my children are gaining from this instead of what they are losing. I'm trying to let go and believe in the process of healing.
Learning happens in all kinds of thrilling and everyday and even nasty looking situations. Each event in our lives is an opportunity to grow and learn, and how we chose to frame that is important.
What are my children learning?
Today my children are learning compassion. They are learning how mom is a human being and that human beings are imperfect and survive that, and they are learning that they can survive my imperfections. We can even laugh about them sometimes or at least put them into perspective.. oh.. its the Lyme again...
They are learning to help out because it is just plain helpful to do so and because they have to at times to get what they want or need when they want or need it. They are learning to do things on their own like cook, clean, and generally take more responsibility for themselves.
They are learning that they will survive if they miss a few events with their friends. Their friends will not forget them or find new friends to take their place. Bumps in the road of life do not have to define reality. They are bumps and we move on, and friends are friends.
Today my children are learning about the human body, the human psyche, and Spirit. They are learning how all are interconnected and how one effects the other.
They are learning about biology! How could they not? We talk about these things and look information up on the Internet, check out books at the library just like we do with any other interest. We have been delving into quantum physics as well, and getting a kick out of our U- Tube searches on string theory and genes. Here are a few of our favorites:
General search on string theory:
Series called Ghost in the Genes:
They are learning about nutraceuticals, herbs, and supplements and why we might need them and what foods to eat to avoid the supplements.. that was my youngest who demanded I look *that* (magnesium) up on the Internet.. then I bought a lovely illustrated book about foods and their nutritional values.
They are learning about healthy foods and how unhealthy eating habits can make one more prone to imbalances in the body. They are learning to eat better because they see the value in it and because we learned that we all are gluten intolerant. Talk about adding insult to injury. On the other hand, we are learning to enjoy foods we would have probably not touched before.
Today my children are going on with their lives despite my oft designated spot lump form on the sofa and despite my preoccupation with my situation. They are learning to ignore me when they need to and to laugh and play despite "where I am" physically or emotionally, although they will check in with me. They often refuse to buy into my fear of ticks (and believe me, this is a problem for many of us with tick borne illnesses since treatment can take so long.. years, and some can never come off of antibiotics). They are learning that I do not and should not define their reality. That's a huge lesson, and they are learning it with patience and with frustration. That's life. They are beautiful children.
They are learning that life is not perfect and that we sometimes have to shift gears, change habits, and change perspectives. We sometimes have to adjust our expectations and perceptions and go with the flow, and sometimes, it's mom who needs most of the perception adjusting.
It is not easy for any of us right now. But they will survive, and so will I. It's a process and learning happens. It's all a part of life.
To repeat myself (because I need to hear it more than you):
Learning happens in all kinds of thrilling and everyday and even nasty looking situations. Each event in our lives is an opportunity to grow and learn, and how we chose to frame that is so important.
In this season, when the human spirit especially longs for and looks to give and receive thanks giving, faith, hope, love, and peace, while you are slowing down to acknowledge the good things in your life and give them their Proper Due, I share these quotes for me and for those who need to hear them as well.
If you can't find it, you're trying too hard. - Eric Pearl
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity.... It turns problems into gifts, failures into success, the unexpected into perfect timing, and mistakes into important events. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow. - Melodie Beattie Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace and gratitude. - Denis Waitley
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity.... It turns problems into gifts, failures into success, the unexpected into perfect timing, and mistakes into important events. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow. - Melodie Beattie
Happiness cannot be traveled to, owned, earned, worn or consumed. Happiness is the spiritual experience of living every minute with love, grace and gratitude. - Denis Waitley
Robin is a homeschooling mom of two and a natural living enthusiast currently in the school of hard knocks taking graduate courses in Lyme disease.