I think we often ignore that when it comes to "ourselves" or our "being" we are more than just a physical body. We have more than just our body to take care of, our life is about more than food and sleep. Are we healthy or are we sick?
The absence of disease is not the presence of health.
Just because we are not feeling sick does not mean we are treating ourselves like we are meant to be treated. I know I have been going through this lately and have tried to ignore it. I have been talking to my mom about some of whats been going on in my world and the things that have been weighing me down. I have allowed a lot to accumulate, even though it was not on purpose and I thought I was making more progress than I was. I have been ignoring my spirit a lot, probably because it has been broken so many times in the past it is easy to push it away. People from the past still stick with me and it bothers me, its not just one person or one comment. Its a few things that haunt me, for whatever reason. I have prayed plenty on the subject but I am at the point where I need to be putting in more than just prayers, I need to find a therapist.
We as a society look past our soul and spirit so much, we dont take care of them very well. Its easy to see why, if we dont have a safe place, we dont eat or drink-we die very quickly. Our spirits are more resilient than our body, it lasts through more abuse. But it cant last forever on abuse. I try my hardest to keep my relationship with God as it should be, but I make some mistakes that I prefer I didnt. I get angry and upset. My spirit has been damaged. I know it can be repaired, I just need to move it up my priority list.
Talking to my mom today made me really think about how much we forget to take care of ourselves, our whole being.
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:
Ally Hilfiger -Living the Lyme Life feat. Bella Hadid
Just Completed my Second Week at the Clinic for the Year
I spent the week with the doctor, this is the second trip this year.
It went extremely well, my test results as a whole have stayed consistent and I haven't gotten any worse from the last time I visited the clinic. I have been feeling great, going to the gym 4-5x a week, i've been sleeping well, had decent energy, and for the most part feeling normal. He is happy with the progress I have made since my visit in March, once again he said there is no lyme or pathogen's in my system causing me issues, its just a matter of cleaning up the damage that the lyme has left.
Since this time last year, I have gained around 20lbs, which is a big deal for me. I still need to gain more but it is not something I need to worry too much on. This week the doctor did spend some time focusing on my gut so that in theory I can start eating more sooner rather than later. He is not too discouraged by how much I eat, but he does want my appetite to be more consistent (because some days I couldn't care less if I ate or not).
He did work on my gut, brain, lungs, liver and heart this week and that was it. I am taking probably half of the amount of supplements as to what I normally would be taking-which is fantastic. No parasites either, which was a problem forever. Parasite treatment was the worst too!
I am pretty excited, I won't need to see him again until March next year. If it wasn't for my school schedule limiting when I can and cannot go I probably wouldn't go back to the clinic for a year. My March visit next year will probably be the only visit to the clinic next year, which would be the best yet. This year and last, I visited the clinic two per year. Back when I first started going I went 3x the first year, I think 4x the second because I ended up getting very sick (or it may have been the third year...I would have to look back at my notes). In total I have been going for 5 and a half years, which is daunting to think about. Niether my parents, my doctor, or myself thought it would take this long to get my body back to normal. I still struggle with issues here and there, sometimes I do still feel depressed or defeated, I still just get totally worn out sometimes, and I do have to push myself hard to keep my motivation. But. I am doing well. When I have a bad day, I know it will be short lived. Instead of a bad month its just a bad day. I like being able to live my life without really having to think "oh yea, I have lyme disease"
I have made great progress over the last year, I am feeling much better and feeling more normal. I have to say I have one of the best doctors in the world!
I probably will post less on my blog only because I do not have as much to share, but I am not leaving by any stretch. Years ago when I spent so much time reading lyme blogs I found that some would just end, without any idea as to what happened to the writer. Some others would end when the writer started doing better. I want to continue to catalog and share what happens with my life, because Lyme has been a part of my life for so long it has shaped my future.
Because of Lyme I chose to pursue a career in alternative medicine, I will be applying to grad schools in the next month or two. I plan on becoming a chiropractor, I am also considering pursuing a Masters in psychology so that I could be a counselor in addition. In December of this year, I will finally finish my undergraduate degree in psychology. I am super excited for this!
Years ago, in one of my more emotional posts on what lyme can do to ones mental state, I talked about how I felt like it hurt me more to dream about the future because I was not healthy or capable enough to do the things I needed and wanted. I feel like now, I can dream all I want and my body wont be what holds me back. I know psychologically I will struggle a little bit more than others when it comes to some things, but because I know that and I have had some great resources, I will now be able to cope more so than in the past. Brain fog and forgetfulness still happens, it may even be a "normal" amount-truthfully I don't know. My doctor told me that most likely what will happen is that I will start remembering more from here on out, but the things I have forgotten over the years may or may not come back. SO five years from now I will remember this point forward, but some things from five years ago now I may never get back. Which is ok, because I still am making progress.
I have some other "health" goals I need to push for myself that all of us, chronic or not, need to be working on. I have mentioned before about how much my psychology teachers have pushed us to manage our stress, because that will be the prevention we need to keep away from all sorts of ailments. I need to work some more on my spirituality, I have gotten so bad at reading books of any kind because it is hard for me to sit down and read-especially if it is something I want to read to remember. I need to get back into doing some reading and studying, outside of school.
I pray often but I would not say I have been pushing my relationship with God very much as I should be.
I want to continue being able to share with others with lyme or chronic illness that there is hope, ignore what the doctors or naysayers say and push your own pathway towards healing. I have no idea if I will ever have a lyme flair again, I may not or I may have a lot more ahead. Who knows. But what will count is how I handle it mentally, physically and emotionally.
It took everything from me “What is happening to me?” I wondered, as I stood in the shower. I was cold, quite dizzy and generally didn’t feel good. After a day at work, the hot shower warmed me up nicely. I drove to my church, where I was scheduled to spend the evening. I didn’t feel like eating anything, so I just got some tea. As the evening progressed, I felt worse and worse, and got so cold that I was shaking and shivering....with a coat on. Finally, I had enough and went outside to my car, turned the heater on high and cried myself to sleep. Eventually a friend came out and found me, and drove me home. This was the first time anything like that had happened to me, and I really didn’t know what to think of it. Over the next few months, I began to get more and more tired, until the point that I am now continually exhausted, and sometimes can only collapse in bed. I have agonizing pain, and have developed an intermittent stu-stutter, along with other cognitive difficulties. Conversations in groups have become increasingly difficult, and any productive school work at times seems nearly impossible. I have started falling regularly, and I am at times unable to control my balance well. Though I never had many friendships before, the ones I did have seemed to die as I have become unable to do the things I used to do. But none of these are as bad as the ever present, crushing depression. I wake up every day, cussing that I woke up and that it is once again time to try to get up and move. I feel like I have been hit by a freight train. A few years after I first got sick, I was diagnosed with Master’s (essentially lyme) disease. That at least explains what has been going on. But knowing hasn’t made things easier in general. When I, in passing conversation, mention to someone that I have Lyme disease, the general response is “okay.” There’s no concern on their face, no understanding in their mind, and no care in their soul. People, in general, just don’t care. However there are a few people that care about me, and for those I am incredibly grateful; it means more to me than they know. This disease has taken everything from me. It took all of my energy. It took my ability to even have enjoyment. It took my emotions. It took my memory and my capability to think clearly. It even took my ability to have moving prayer time or serious devotions. It took me....and left me for dead, as a skeleton of my former self. A self that my friends, family and acquaintances don’t know, a self that I don’t know; a self that almost no-one knows. It took my youthful inspiration and replaced it with a wish for the sweet release of death every single day. Even with the impressive amount that the bacteria has been able to accomplish, it hasn’t taken God from me, or me from Him. Nothing can separate those in Christ from his love for us. And I know that, and I firmly believe that. Nothing has escaped His attention, and I know that this immense suffering is for my good. It is helping me become the man God wants me to be; it may feel most of the time like a dagger in my heart, but I know that when I get better, if I get better, I’m going to be unstoppable. I’m going to be infinitely more compassionate towards those with depression, mental and physical disabilities, the hurting, the outcast, the unwanted and the untouchables of society. I’ll have a much greater understanding of what these people go through, and perhaps be able to help them. And for that I’m thankful. -E I asked E to write a post about his story for me to share on my blog, and I am impressed at how well he captured what he is going through. His brain fog and focus issues are a fair bit worse than mine (or so I think), and mine are fairly severe. For him to write this much and do such a coherent and clear job at writing, im super proud. One of the things he asked me after we began talking was "how do you describe what lyme has done to you" I responded back with " I feel like I was murdered, then I never left my body." Its fairly safe to say we both feel very dark now, which I for sure never felt like before lyme. Its hard to fight the crushing depression that has come on with lyme, the lyme takes over the body and the depression on top of it helps take over the brain and its thoughts. Together the two of us have more support to encourage the other through the dark times, which are more often than either of us would like to admit to anyone else. Im sure that this will not be the last post from my friend that you will see posted on this blog, as he progresses with his treatment and his life and symptoms change im sure Ill be able to convince him to write a little more to share! He started zithromax today, so I have a feeling he's not going to be feeling to great over the next few days.
Look at that you guys, we've reached post number 100!! During Lyme Disease Awareness month too!
This is exciting. I am thrilled to say I feel much better today than I did when I typed out post number 1 back in October 15'.
Today I am building up my body. My muscles and back are beginning to hold and work correctly, I have more energy, some nights I sleep hard and wake refreshed, and my spirit is healing.
One of the things you are never told about being chronically ill is your body and spirit are never in line. One day your spirit could be in a great place, calm and confident. But your body is in shambles.
Going to bed one night thinking everything is great, tomorrow will be awesome. Then tomorrow comes and you awaken to the feeling of negativity, pain, fatigue, and a grand total of zero motivation.
But time goes on. Gods plan works out. I have learned an invaluable amount of information during my many years of illness. I wouldn't trade it for anything.
Did you see that coming?
I've been sick for years, but wouldn't have it any other way. Huh.
The end of my illness is getting closer, not tomorrow but in the upcoming time it is. Physically and mentally I am stronger and gaining a little more every week. Ups and downs occur but have become less extreme.
I will be going back to Hansa, I hope it will be my last requires visit. Even if it's not, I'm okay. If I go for a 4th time it is not the end of the world. I am healing. I will be 100% and better than before one day-without the need of further supplements.
That's one thing I am looking forward to, no more pills or liquids to take. I have a few boxes of empty bottles that I've saved just to see how many bottles I would go through to reach the last one.
I have taken something almost every day for 5ish years...it would be nice to have no need for that.
My healing results in the last few months is astounding, I pray everyone will one day be able to have access to healthcare that is available at the Hansa Center.
