15 Lessons That Lyme Disease Treatments Have Taught Me
My Lyme Anniversary
This past year has been one of the most difficult times of my life. I have been facing what I would call my own personal Goliath, also known as Late Stage Lyme Disease.
Thursday will mark the one year anniversary of the beginning of my Lyme treatment journey. Last March I embarked on this trek to wellness with a hopeful heart and a lot more money in my pocket than I have now.
While it is true that Lyme is a thief in more ways than one, it is also a very good teacher.
There have been so many times during the past year when I have had what you might call “A-ha moments.” These are the moments when a light bulb goes off in your head and you think to yourself…”A-ha! So that’s how it’s going to be!”
I thought it would be only fitting to mark the anniversary of my Lyme diagnosis with a small list of lessons that I have learned from Lyme disease and its treatments.
Some of these lessons may seem strange to the average person, some of them even a bit morbid. But, they are real and very much a part of my life. I have learned to appreciate the lessons in a life with Lyme.
#1. I have come to terms with my own mortality and surprisingly there is comfort in that!
I think until an individual comes face to face with a life threatening illness, it is easy to feel like that popular 1980’s song from the movie Fame. You know the one, that says “I’m gonna live forever…”
Up until my early thirties I had never experienced any real life threatening experiences with my health. I knew I would die some day, but I was pretty sure it was far off in the distant future. I was hopeful it would not happen until I was a ripe old age. I felt that I didn’t have anything too serious to worry about.
Then right around the time I turned thirty, I had a mini stroke and all of that changed. This past year after beginning Lyme treatments, I have experienced some of the worst health challenges that I have ever had to face. Lyme treatments are scary and they make you feel like you are knocking on death’s door.
At first I was frightened of feeling my own fragility.
Quite honestly, I was terrified. I think at some point we all tend to have the Scarlett O’Hara mentality of putting off and thinking about something tomorrow.
But, once I reached a point in my sickness that I could not ignore it, then I was faced with that great giant in everyone’s life called mortality. It was an eye-opening experience when I realized that my once dependable health had gone down the drain like dish water in a sink. It had been a slow sliding into sickness, but also what I would call a rapid down hill journey.
I wept and prayed and begged for healing and in the end I accepted that my body is going to eventually wear out. I now feel that there is great peace in the acceptance of this fact and the realization that my pain will not and cannot last forever.
#2. Grief is a part of healing. I miss the life that I had before I was diagnosed with Lyme disease.
There is a part of me that wishes I could turn back the clock and just “not know” about my illness. Lyme has a way of taking over your life. The treatments are extremely intense. There is no escaping the misery that so often goes hand in hand with them.
Some days I long to go back to the day before I was told I have Lyme, so that I could just savor one more moment of my half way normal life.
Although, in reality I had already been sick for many years, by the time I was diagnosed with Lyme disease. At least before I knew about my Lyme disease, I felt that I had a bigger hope of curing what was dragging me down.
I think the knowing can sometimes feel a bit like prison bars. Allow yourself time to grieve the old you and the old life. Grief is a part of the process that goes hand in hand with healing.
#3. Not all doctors believe that Lyme disease exists.
I cannot begin to tell you how many times I have either had to bite my tongue and say nothing or wish I had said nothing to a doctor. Main stream medical doctors seriously do not believe in Late Stage Lyme disease.
Therefore the Lyme patient is forced to exist in a double life. My mainstream medical doctors have not yet acknowledged my struggle to recover from Lyme. They know my struggle as Fibromyalgia, Chronic Fatigue, Raynaud’s disease, arthritis, heart block and other mainstream medical terms.
It is tough to keep one side of illness separate from the other. But, I have found there is a balance that one must find in this Lyme life. It takes time to learn the ins and outs of life with Lyme. Be kind to yourself. Believe in yourself. After all no one knows your body better than you do! Be your own best advocate.
#4. Learning to say “no” is an absolute necessity to surviving Lyme Disease.
I am terrible at saying “no” to people. There I said it! The word “no” was not typically a big part of my vocabulary before chronic illness knocked me sideways in my twenties. But, from there on out it has been a constant struggle for me to turn down invitations to go out and eat, to meet up with a friend or attend an event.
In my heart of hearts, I know that I do not have the stamina to do these things. But, I hate disappointing people. It has taken me a long time to learn to say no, especially to the ones I love most in life.
But, I have certainly learned over the past year that for the betterment of my own health I must get a backbone and say no sometimes. It is just a part of living with a chronic, debilitating illness. A little dose of “no” has never hurt anyone. Save your “yes” for the important moments.
#5. Lyme treatments are not one size fits all.
When I began my very first Lyme protocol, silly me, I thought that I would just take the protocol and be cured! What a rude awakening I was in for! Just because one protocol worked for someone else, does not mean it will work the same way for you.
Lyme is an individual experience. There are so many, many variations of symptoms and so many different co-infections that treatment has to be tailored to each individual’s needs.
After a year in treatment, I am still not off the starting block. I have seen very little, to no improvement. There have been small instances where I see glimpses of wellness. But, they never last for long and I slide right back into the sickness that has had a death grip on me for years.
If there is any one thing that I wish someone would have told me a year ago, it would have been, “Do your research!” If something doesn’t feel right, then it probably isn’t! I wish I had realized this much sooner! I could have saved myself months of misery, from being stuck on a protocol that was NOT working.
Again, be your own best advocate! You know your body better than anyone.
#6. Lyme treatments are lengthy and expensive.
When I was first diagnosed last year with Late stage Lyme disease, I did not realize the amount of time and money that I would have to invest in my own health and healing. I did not know that almost nothing in regards to treating Lyme is covered by insurance.
Quite frequently I have had to take baby steps towards healing due to financial strain. I don’t know too many people who could easily plunk down $5,000 to $20,000+ out-of-pocket to cure an infectious disease.
I have learned to be thankful for the baby steps and leave it at that!
My doctor gave me a time frame of possible healing that involved either several years or many years. It is too soon to say just how long my healing will take. So much of the healing process depends upon an individual’s unique response to treatments and the current state of their immune system.
Be prepared to invest time and money into your health and have lots and lots of patience. This is the prescription for enduring Lyme treatments.
#7. I will never take good days for granted again.
The good days for me have been very few and far between. But, when a good day rolls in and you can suddenly see the sunshine parting the clouds of your sickness, it is glorious.
Severe sickness has a way of transforming your life. What most people consider normal every day tasks, become Herculean events in the life of a person with chronic illness.
Simple things like being able to unload a dishwasher, cook dinner and fold a load of laundry become hurdles to get through. On a good day I can do these things, although much more slowly than the average person. It is surprising how special it feels when you actually feel like walking to the mailbox or cleaning up the house.
Simple tasks take on a whole new meaning. The definition of a good day for someone with Late Stage Lyme disease is what is most likely just a normal day for someone else.
#8. That seemingly innocent bottle of herbal supplement has the power to cause a herx.
When I first began Lyme treatments last March, my doctor incorporated many herbal supplements along with my antibiotics. To be honest, I was nervous about all of it. But, over the next several months I learned that herbal supplements can make you just as sick as a potent prescription medicine.
Approach every treatment with caution whether it be homeopathic or from a pharmacy.
#9. Always pay attention to what your body is telling you.
I will never forget my first experience with a herxheimer reaction. It was an absolute nightmare.
I had been taking my very first Lyme protocol for less than a week. What began as a feeling of being very unwell, ended with me in the emergency room feeling like I was dying.
Always, always pay attention to your body. Always, always trust your instincts. If you get the feeling that something isn’t quite right call your doctor and share what you are experiencing with him or her.
I would compare my first herx reaction to a train wreck. I could feel, see and hear the train coming down the track at full speed, but I chose to ignore it. This was a huge mistake on my part. I did not detox nearly enough and the bad reactions just about drove me over the edge. Which brings me to my next lesson, detoxification.
#10. Detoxification is the cornerstone of surviving Lyme treatments.
After the first several months of treatments, I realized that detoxifying was to become a new way of life for me. I have learned to always keep a bottle of water by my side. I keep dandelion tea on hand as a daily aid in detoxing my toxic body. Epsom salt baths are a weekly, sometimes daily occurrence around here.
I have also learned that a lovely little product called drainage tone, helps to keep my system running at optimal detoxifying condition.
Who knew that water and hot tea would become my lifelong best friends forever!
#11. I have learned that every person will not understand my Lyme disease.
There are those people in my life who have stuck by me through thick and thin. They are the glue that hold my life together. I would not know what to do without these lovely souls.
But, on the flip side there are those that simply just quietly stepped out of my life. Maybe sickness is just too uncomfortable for them to have to deal with. Maybe my life is just too complicated for them to handle right now. Either way, I accept the fact that not every one will understand my Lyme disease, and that is okay!
I don’t expect everyone to understand what I am going through, just like I do not understand rocket science.
#12. Sometimes you have to say goodbye to your favorite foods.
Mmmm! Coffee, my one true love. Unfortunately coffee is on the list of “do not’s” for me. I have several heart conditions that will not allow me to enjoy my drink of choice. Caffeine is an arch-enemy of mine. It has the power to make my life a misery.
Gluten, sugar and several other culprits that do not help a life that is trying to recover from massive inflammation also had to go when I began treatments.
Now, I will be the first to admit that I am human and I do have days when I just cave and have a cookie or a piece of pizza. But, those days are what get me through all of the others when I have to do without.
The old saying, “You are what you eat,” definitely holds true here. If I want to say goodbye to inflammation then I must at least temporarily say goodbye to some of my favorite foods.
#13 Rest to live and live to rest.
If you were to ask me what the absolute worst symptom of Lyme disease is, I would probably have to say it is a dead tie between pain and fatigue. But, fatigue is probably the one that has the most life changing impact.
Some days I barely have the energy to move my little finger, much less get out of bed and function like a normal human being for an entire day. The only thing that I can do is rest when this happens.
Rest is perhaps one of the most difficult prescriptions to take. Especially for me, because I have always been a go-getter. As a mother of five, busy has been a way of life for me for a very long time. Truly resting is something that is very hard for me to do, but it is very necessary!
In a life with Lyme it is virtually impossible to get a full night’s rest. Therefore, I am doubly exhausted throughout the day. I have learned that I have to set aside actual times for resting within a day.
Rest is one of the best treatments for any chronic illness. I rest to live and live to rest. This is my motto each and every day!
#14 Choose Joy!
This is perhaps the most important lesson that I have learned in this long and often exhausting journey through Chronic Lyme. Happiness is not a circumstance, it is a frame of mind. I repeat this to myself often.
Each and every day I wake up and try to think of something that makes me smile. Thinking about something joyful makes it ever so much easier to get out of bed and put one foot in front of the other.
I try to do at least one thing every day that brings me joy, whether it is just reading an uplifting book or playing a simple card game with my children. Some days it is as simple as lighting a candle or listening to French Cafe music. It is the simple things in life that actually make it the grand experience that it is!
The best medicine you can give yourself is laughter. Do something that brings a smile to your face and choose JOY! No matter what hand you have been dealt choose to play the card of joy.
#15. Find a Tribe.
When I was first diagnosed with Lyme disease, I wanted to hear about other’s experiences with this illness. I sought out personal stories online. I read and read and read, blog after blog. I also “met” some really lovely people.
Within the Chronic Illness Bloggers Network that I belong to, I have found some of the most wonderful souls. These are friends that I have never “met” in person. We simply just know each other online. But, I value their input and their experience. They bring a unique perspective to the chronic illness lifestyle that I otherwise would have never known.
I am so thankful for each one of the members of my “tribe.” If you suffer from a chronic illness, I would encourage you to reach out to others who are in the same shoes. You might just find some of the best friends you will ever have!
In Spite of Lyme I am stronger.
Although this past year has been one of the most difficult of my life, I am thankful for it. I have grown in ways I would have never dreamed possible. My Lyme disease has taught me that I have a strength and endurance far beyond the physical realm.
My heart has grown with compassion and admiration for those who have walked this road before and for those who are newly diagnosed with this awful disease. I want to be a help to others in any way I can. I want to reach out and be a helping hand, an encourager.
We all deserve to be healthy and happy, but even if the health part is lacking, happiness can happen. Lyme has taught me that. Like that well-known saying “Happiness is like a butterfly, it comes and rests quietly on your shoulder when you least expect it.” Just live and let live and that butterfly will come and pay you a visit.
Until next time, take care and be well!