Like long COVID, chronic Lyme disease is a custom illness. There is no one size fits all illness or treatment plan, so here we go again. What I applied to my recovery from long COVID is now being put into play in regard to figuring out how to put chronic Lyme disease into remission (and keep it there) because remission is not just for cancer.
I recently learned that finding out the symptoms I’ve been living with for years, which could not be given a clear diagnosis, and which was diagnosed almost by accident, can result in grief, the same kind of grief that comes with death except the process of dying is happening to you while you are actually still alive and what you are grieving is the death/loss of your former self. This is all starting to click because I had a feeling that my move to Tennessee was going to have something to do with my death, I just didn’t know I was going to be alive while I was dying.
I’m definitely past the denial stage in David Kessler’s book “Finding Meaning: The Sixth Stage of Grief”. But I don’t seem to be following the stages in a nice orderly fashion because I think I’ve skipped the bargaining stage all together. It feels like I’m being tumbled about by an emotional stew of anger, depression, and acceptance all at once while looking forward to the meaning stage with anxious anticipation. It sort of feels like going through the bleak season of lent while anticipating the joyful resurrection of Easter morning.
What meaning can come from tragedy or loss? What good can come out of the current situation? Can loss encourage people to reach out to each other and deepen their relationships? Can it re-awaken their spirituality?
I’m not alone in my grief, at least two of my subscribers are going through the grief process, and as some of you may know, the community that I live in was struck by several tornados and multiple rounds of severe weather this past week which resulted in 5 deaths, the loss of 100 structures, and damage to many more homes, so grief is in the air around here.
This isn’t the first-time tornado weather-related tragedy has struck close to my Tennessee home, but I have noticed that it has left people more on edge and frazzled this time which I think is most likely related to the stresses we have all been living under. I also think it’s probably not helpful that the weather-related storm warning/reporting is now coming with increased frequency (multiple times per day) that begins nearly a week before the storm is ever even predicted to arrive. This can cause our bodies to go into fight or flight mode way before the danger actually arrives and to linger for longer after the danger has passed us by.
I’ve learned it’s pretty common for chronic Lyme symptoms to plateau, get worse, get better or cycle between these 3 phases which is like being on a roller coaster minus the exhilarating fun and excitement. Unfortunately, stress (physical, emotional, and/or chemical) can contribute to the onset of disease as well as hinder healing.
Stress can have profound effects on immune and organ system functioning and responses. Finding Anchors in the Face of Stress
There are things we can do to address our stress, but what do you do when the things you usually do to unwind are not working because the inflammation in your body is freaking out of your brain and is starting to cause symptoms that resemble something like PTSD even though you have not been traumatized in big T trauma kind of ways?
…..it turns out many people with Lyme disease write of PTSD-like symptoms. Also, psychologists are discussing how long-term stress, including serious illness, can lead to PTSD, or at least a similar limbic system disorder…..
….sufferers of chronic illness can develop stress disorders, whatever you want to call them. Chronic illness is traumatic. We often feel powerless and afraid of what the future holds……
We warriors need tools to rewire our limbic systems. We need help calming our amygdalae down. Rest and repair on a deep, autonomic level is critical to wellness. Our bodies heal in this state, down to the cellular level.
Luckily our brains are plastic (able to be re-shaped), and we can take steps to help them reorganize. Beyond traditional therapy, there are other options to heal PTSD patterns in the brain.
In my last newsletter, I mentioned that I was preparing to add something new to my treatment tool belt so that I can continue to progress in my healing and put chronic Lyme disease into remission for a very long time. I’m looking forward to your continued support of my work here as I move forward with helping my brain heal which will help the rest of me heal and get better, not bitter.
It’s almost tick season so, I thought I would include some Random and Educational, Chronic Lyme, Not So Fun Facts.
Lyme symptoms wax and wane, there are good and bad days.
Chronic Lyme disease imitates hundreds of different illnesses and can take decades to diagnose.
Blood tests for Lyme disease are as high as 60% inaccurate.
Most doctors are not trained in the identification or treatment of chronic Lyme disease.
20% of those who are treated with antibiotics for acute Lyme infections will not have their infections resolved.
Ticks can transmit more than one kind of bacteria and there are often other microbial co-infections present.
Many of the people who go on to display symptoms of chronic Lyme disease did not have symptoms of an acute Lyme disease infection shortly after their tick bite.
In warmer climates, it’s always tick season.
The most common cause of death in Lyme disease is suicide.
Long COVID has a lot in common with chronic Lyme disease. This newsletter began with an appeal for us, the chronically ill, to become our own primary care providers, see About - Leaving Death in the Dust. Have you learned how to listen to what your body is teaching you? Has chronic illness changed your life in any positive ways? Are you calling most of the shots when it comes to what your body needs to heal?
Expecting a doctor to call all the shots to take you over the finish line will usually end in failure. Most doctors are not effectively trained to treat Lyme disease, and unfortunately, many more don’t even believe chronic Lyme Disease exists. Becoming your own health advocate and even physician tends to work better for every patient. Nobody knows your symptoms and body better than you, so it’s much better for your treatment success if you’re actively involved and calling many of the shots.
The 7 Major Blocks to Healing Chronic Lyme Disease - Gregg Kirk
I am thankful to be living in a community where I have seen a lot of good come out of tragedy and loss after disasters, but joy is often hard to come by in the midst of grief and loss. For those who are consumed by the bitterness that often accompanies loss, joy can be quite elusive. Please don’t give up or lose hope.
Get better, not bitter…………
If we had hoped to live forever, we have prospered, because we know the soul is eternal. But if we had hoped to evade death, we will never know prosperity…….
Jesus came to console. Which is to consolidate. Make solid. Make whole. He gathers a remnant of the broken hearted and knits them together by the threads of heaven….
It may be that God allows those who can feel joy to be broken but not destroyed. A broken vessel pours forth without embargo. Joy was not made to be contained. The best of beings are broken that they may leak light ceaselessly wherever they go. And the only way it would seem to let the light of another into the recesses of one’s self is to become broken that little beams could make beautiful things.
Severe storm warnings abound, from the Pacific Northwest to the Southeast. Bang bang bang goes their weather drum, wanting to bang my chaos drum too. But I’m lost in the sweet satisfying smell of lavender from my youth. She whispers in my ear, “The past is always present, but you don’t have to live there.” As I take this epiphany in my hand, I see myself leaving those lavender fields behind. I turn and give her a wave, telling her goodbye. I look forward and I see, a wise, little grey Fox staring back at me. I stare deeper into its eyes and accept the invitation to move into this new season of life.
Best Wishes,
My name is Stephanie, I can do hard things, and “Leaving Death in the Dust” was created in sickness and in hope for healthy healing.
******Remember to make prayer a priority.
This publication was created to encourage the chronically ill to become more actively involved in their own health care. I’m glad you’re here, and I hope that you have found our newsletters to be helpful.
