I Want To Share
What helped me through my journey. In the lyme community as a whole, there is a collective feeling of being trapped. Lyme patients, in my opinion, often do not get their health back 100%. I know I was discouraged along the way by fellow lyme patients. Why? To cope? I do not know. Treatment is expensive no matter what route one takes. Some people cannot get better because they cannot afford the stockpile of meds. I remember being told "you may get better, but lyme will always be there causing problems at least a little bit. You cannot get over it."
I hated being told that, I was told that by someone whose opinion I did value. This person is the one who clued me off as to what lyme was, before them I had never heard of lyme disease (what a time in my life to remember!). They taught me a lot, they pushed me in the direction of reading and research. She told me about Cure Unknown by Pamela Weintraub, I *think* that was the first, if not at least one of the first books I ever opened that covered the topic of what is called Lyme Disease. I jumped in and read further, I read more books, I read some books more than once. I became a young adult who was now informed and well developed in their opinion on tick borne illnesses. Somewhere on here I have written specifically on what books I have read and what I thought about them, truth is, if you are not researching on your own to understand how lyme and its treatment works, you could be setting yourself up for failure. Being a nerd saved me, or so I think!
The mentality that I hope I have shared on my blog over the years, I hope, has conveyed positivity and perseverance. Anyone can chose to quit trying and stop searching for the next answer. Anyone can give up their hope. Anyone can lose their faith in God, that everything happens for a reason.
It takes a stronger person to take on the fighter mentality of I cannot quit. At some point, during the sucking and the suffering and the absolute terror that chronic disease had caused me I realized-I will only ever have one human body. One. I may not can choose what events happen, such as contracting an illness or injury. But I can and should actively make choices, mindful thought-out choices, on how I am going to treat my body. I choose what I put into it. I choose what I put it through. I make choices on what time I wake up and what time I go to sleep. All of these things can make or break a treatment protocol of any kind.
If you want to continuously have pain, continuously have fatigue, just skip out on sleeping. Even if you are an insomniac-get in bed. Turn the lights off. Put on relaxing music or a video to listen to (not watch. no screen!). Weeks/months/years down the road when the neurological burden is reduced, normalized sleep will return. On a sleepless night this whole no tv or light thing is stupid boring. Yes. But training our brains for the correct sleeping pattern is beneficial because one day, our body will listen.
Diet. Everyones favorite four letter word. I followed the 80/20 rule for the most part. Some times I had to be more strict, other times I broke loose. 80% good, healthy, anti-inflammatory foods. 20% less than ideal dietary choices. Remember, results aren't instant. Waiting to feel results could take more than an extended amount of time.
Finally I would like to add-patience. Pray. Hold on tight. Some people get better, some people don't, its just the nature of the beast-but I believe with proper treatment everyone can make progress.
Its easy to take a pill or few a couple times a day, it's easy because it does not take a significant amount of thought space to plan out taking the pills as compared to planning healthy meals, planning to be in bed, planning to exercise (then come up with what exercise to do). The more thought space something takes, the less time we really want to dedicate to it, as chronic illness patients, sometimes we have no thought space to spend. It is hard and we all fail somewhere along the way. What counts is the process of making a choices on how to react to our failure. Choosing is the operative word here.
Writing
I write to share my experience because it can be hard to find hope in the world. I believe that we live in a fallen world that is only degrading further. I do not believe that a magic pill is going to pop up to cure chronic lyme disease. I would love to be wrong, it could happen. But do not wait on someone else to solve the problem.
I have drawn much of my hope from other lyme sufferers and I believe that it is my duty to share my experience for those who are still trapped in the dark ball of feeling like death incarnate. Yolanda Hadid is probably one of my favorite Lyme advocates. Her book, Believe Me, is the greatest illustration of what a person with chronic Lyme struggles with. She details that money was not her answer, she had much more financial resources than 99% of people with chronic disease and she still suffered for over a decade. Her mentality is something that, in my opinion, is unmatched by the average person suffering with a disease. She was not the victim, she did not quit, she did not give up. Perseverance kept her going, her children kept her going, she found the things she needed to make her life what she wanted despite severe physical suffering. That is so hard, it doesn't happen overnight, it takes failure and people as a whole tend to fear failure. Keep going and you will never truly fail.
I believe that one day I will write a book or do something more involved and formal than write a blogger blog, to out reach to those who are trapped in the cycle of chronic disease. I also believe that today, in August of 2020, I am not at that point in my life. I know that I have more goals I want to reach before I can look back and say-not only did I beat Lyme+autoimmune disease but I achieved what Lyme tried to take from me.
Part of what motivates and drives me is knowing that I still have so many goals I want to achieve. Lyme sure did hit a big pause button on what I wanted to do with my life. I was not an athlete of any kind in school, I was one of the smartest until I could no longer think at all, I certainly was no writer. I want to grow my knowledge in psychology and work on being motivational for those who want to give away their hope, I do not think that there can ever be enough motivation. I want to build my body up, I want to feel physically strong, I have never really felt that (and if I ever did, I can't remember that time anymore).
I feel that these are solid goals to work towards now that I do not chronically suffer from disease.
I want to share these two videos with you all. I re-watched them this evening for the first time in ages. I was anything but disappointed!
Yolanda Hadid at the Lyme LRA Gala:
