No one can tell you what healing will feel like. But you will know when it happens.
– Me, Lyme Survivor? 4/19/2015
I often jot down thoughts in text messages to myself, post-it notes scattered around my desk, and scraps of paper stuffed in my purse. I came across this one written above yesterday. I remember the day I wrote it very clearly. I had been diagnosed with Lyme in July of last year and had been taking antibiotics for about four months. I was out of bed, dressed, even wearing makeup for the first time in months. And I had begun to notice something profound was changing in my body. There was no mistaking it. I was healing. I felt as if the Lyme was beginning to recede. My partner noticed it too. That day she looked at me and said, “Your eyes are gleaming”.
I felt so good that I posted a picture of myself unabashedly as evidence, or proof of life. Over a period of about a month I had about four really good days, the best days I have had in two years. I had hope that I could one day return to work. And I was excited by the possibility. My doctor was excited. We agreed together that I could stop taking the antibiotics and start treating with herbs alone. This decision was made because the antibiotics were making me feeling really crappy. We were pulsing them, first five days on two days off. The two days off the antibiotics I had symptom improvement. But it seemed that it got to the point where I wasn’t recovering well on the weekends from the symptoms created by the antibiotics. So then we went to four days on three days off.
When things take a turn for the worse, I always find a way to blame myself. And things did take a turn for the worse after I stopped the antibiotics. It was gradual at first and I kept trying to deny it was happening. Internally I had a dialogue going that I probably didn’t have Lyme disease anyway. This dialogue has been going on since I was diagnosed and continues to undermine my healing on a regular basis. I continued with the herbals but a part of me just didn’t feel like the herbs were strong enough to kill what was ailing me. About a month ago things got really bad again and have stayed that way.
Now when I look back at it I blame myself for stopping the antibiotics. Those few days of wellness, so precious, started up the engine of my over-achieving, pushing, impatient, angry prior version of myself. “I’m done being a sick person,” it said. “It’s time to get back into the flow, the fast lane of life”. That place I lived for most of my life until I was too sick to do so any longer. This prior version of Me.1 has a very dim view of me and my “emotional issues”. “Stop wallowing,” it says. It decided I was done with doctors, medicines, surgeries and everything else. “You’re not sick anymore if you are able to feel good on some days,” it said.
Whenever I am feeling really bad, and getting worse, my mind starts frantically searching for what is wrong and how I can fix it. Then there are the days when my mind is too scrambled to even follow logical thoughts. I feel as though I am squinting through brain fog trying to find my way, pacing our apartment from room to room and never remembering why I am there. Sometimes at night I will close my eyes and open them and not recognize my surroundings. I am filled with guilt and shame for my lack of ability to perform the simplest of tasks.
I stopped taking the antibiotics on May 7 and continued the herbal treatments. At the same time I started seeing a osteopath who was working on my body to try to re-establish movement throughout my cranial bones and spine. It felt good when she was working on me but after the visits I would have increased pain throughout my body that didn’t seem to lessen before the next visit. The good days stopped coming. For awhile I was able to stay in denial about it. I was thinking, “I’m not going to let this take me down, I’m not going to get worse just because I stopped the antibiotics”. I was trying very hard to keep my mind out of the dark places. By the 13th of May, I was feeling significantly worse all around. Pain increased, fatigue increased, brain fog, easily overwhelmed, extreme sensitivity to light and sound (had to keep the drapes closed during the day). The sound of the TV, or water rushing into the sink made me want to scream out in pain. For awhile I was red-hot angry without knowing why. The cicadas were back in my head buzzing like it was high mating season. I also noticed that my hands started shaking again, and it became difficult to do fine motor tasks. This combined with shoulder and arm weakness made it difficult to open things or lift even small things. Then I began to feel the old depression kicking in and I became lethargic and apathetic.
There was another possible answer to my declining condition other than stopping the antibiotics. When I was first diagnosed with Lyme the practitioner I saw recommended a hormone replacement called the Wiley protocol. I had used it for a few months in the last year and then stopped when I started to feel really bad and suspected the hormones. I did some research at the time and found that the science behind the Wiley protocol was severely lacking. A few months had passed, and I had forgotten why I had stopped taking them before. I started them up again because I felt like I needed some kind of hormone replacement since my periods stopped when I had my thyroidectomy. I just want to reiterate that with the cognitive problems I’ve had I completely forgot my prior concerns. So by this time, when I had been off the antibiotics for a couple of weeks, I had been using the Wiley protocol again for about 2-3 months.
In my pursuit of trying to figure out why I was feeling so awful I delved back into the Wiley protocol research and found a site dedicated to women who have taken the Wiley protocol and have gotten incredibly sick from it. The problem with the Wiley protocol is the dosing. The doses are set to mimic the hormones of a twenty year old. So as a result when you take them you have the potential of overdosing on the hormones. Unfortunately the hormones are stored in your body fat so it takes a long time to get rid of them. I stopped the hormones right away after reading about progesterone dominance on the website I found. I had every symptom listed there. I stopped the hormones and all of the symptoms started to improve right away but extremely slowly. I’ve been off of them for about two weeks now.
My mouth has been giving me problems for at least a year. The Dr. and I both thought it was thrush which we have treated with diet and medications with little improvement. My tongue always feels sore and swollen and it often looks orange and hairy. My mouth is always really dry. It really affects my desire to eat and my overall well-being. I developed a parotid cyst and when I went to have it checked out they tested me for Sjogrens, which it turns out I have. It was a blow to receive yet another diagnosis and an autoimmune one at that. And it turns out that a lot of people with Sjogrens also have other more severe autoimmune disorders like Lupus. So now I’ve been thinking I probably have Lupus because I’ve had other symptoms related to it. We are still in the process of finding that out. Another Dr. referral, more tests.
There have been other situations muddling up the picture, things that are eating away at me inside. A few weeks ago I had to go through the disability inquisition that my long-term disability company puts me through every few months. They required that I apply for Social security disability as well so I had both entity’s crawling up my ass demanding records from every doctor I’ve seen, and long arduous papers filled out, which has to be one of the most difficult things for me to do. Plus this process always brings up the old judgment thoughts I had when I began to get sick and was still working. To my colleagues, I was just someone trying to get out of work. More than one of them even commented to me about how I was being a “slacker”. Every time I have to go through this “Prove you are still disabled” process,” it brings up all those feelings again. Not to mention I have a huge resistance to the term “disabled”.
Several weeks ago I saw a TV show about people who follow presumed disabled people around and take pictures of them doing things that make them look non-disabled for insurance companies. Ever since then I have been looking over my shoulder. What if someone takes a picture of me doing something that I may not be prepared to do but that I’m doing because there is no one else to do it for me? Like carrying groceries up the stairs or sitting through one of my son’s baseball games while I writhe in agony and try to keep a straight face? It’s made me paranoid, which is also influenced by my thyroid hormones and the Lyme. I’ve gotten to the point now where I don’t want to leave the house. Not just for fear of some insurance person taking my picture but also because I feel as if I don’t want anyone to see me. Not my neighbors, not strangers in the grocery store. If I’m forced to go out for some reason I keep my head down.
Another thing that has been going on “behind the scenes” is that during the time I was feeling better and my heart was open I contacted a friend that I haven’t spoken to in about 8 years. We were once very close and she attended the birth of my son. But soon after there were problems in our relationship and we grew apart and eventually just didn’t contact each other anymore. It was a big surprise for her to hear from me and she responded very warmly. It was nice to talk to someone who has known me for so long, especially because my identity has been so deconstructed. We texted for a bit and then I felt like she was indicating in her texts that she had a lot on her plate and needed to be tending to it. She indicated that she would love to talk and catch up and that as soon as things cleared up in her life she would call me and we could talk. She’s a big emoji user so her texts were full of hearts, smiley faces and purple unicorns. Well, perhaps you can see where this is going. I never heard from her again.
During our first conversation, not far in, she had asked me, “So,……are you sober?” She and I met in 12-step community some thirty years ago. When our friendship deteriorated it was my opinion that her words and actions weren’t matching up. For instance, we were supposed to be best friends. I was going through a really difficult time in my life, and she wasn’t able to show up for me like I wanted her to, like perhaps, I had shown up for her throughout our relationship. When I tried to share my feelings with her she used her 12-step program as a demonstration of her right actions and accused me of not using 12-step principles. I think she said something like, “I’ve used the steps and taken my inventory to figure out my part in this, have you?” I wasn’t attending 12-step at the time. It seems to be a common misconception in 12-step that people who are not attending 12-step meetings couldn’t possibly be involved in self-reflection or be on some sort of spiritual path. I went to AA religiously for 10 years and then moved on to other spiritual paths. But at the time of our conflict I was still sober, and to some degree I still am as I have not had a drink in over thirty years.
But in 12 step terms I am not sober. And so this is what I told my friend. I told her I have Lyme disease, and severe chronic pain that requires me to use Vicodin and cannabis daily. She said some things about it being cool with her, that she doesn’t judge. The conversation certainly stirred up my own self judgment. To 12 -steppers, I am not sober and therefore, I am not living a legitimate life.
And in the middle of all of this, my partner and I have been attending counseling sessions. I don’t feel optimistic at this time about our ability to resolve our differences. I sometimes think that the stress that comes from my relationship would be relieved if we were to break up. I don’t know if this is just a product of my current diseased brain or the truth. One thing is certain throughout my life. I have agonized about every relationship I’ve been in and waited a long time to leave out of fear of making the wrong choice. And now when I look back, it was always the right choice to leave every single one of those relationships! But I can’t even imagine a separation and a move on top of everything else, let alone how I will support myself on my monthly disability allotment. And with that comes more negative self thought.
It seems there is no limit to the number of ways I can judge and demonstrate a lack of compassion for myself. Everyday I seem to be on the firing line of my own thoughts, dredged up from the muck of all of my perceived failures. And then to finish myself off, I invite all of the people who I suspect have a critical view of myself into my mind and make their opinion of me my own. Added to this is the belief that comes up again and again that if I am sick and continue to get worse it must be because I deserve it. Because no one around me in my life that I see on a regular basis is going through the hell that I am. This illness has left me feeling like I’m living on the sidelines of life. Everyday, I watch as the mostly well go by like people on a moving sidewalk at the airport. They are going to work, planning the future, buying things, and most important of all, they can stay standing and still function after 3:00 everyday. Many of their problems seem petty to me. I feel guilty for admitting that.
Two years ago we moved to the community we now live in because it was close to the city and had the best schools around. The apartment also has an awesome view. We live on one of the few roads in town that has apartments, and barely affordable ones at that. This has to be the wealthiest area I have ever lived in. My son is thriving in the school here, although he often asks if we can join the country club his friends go to (not right now honey). I see the extreme wealth all around me everyday and I use it as one more reason to feel separate. And I’m jealous. I’m jealous of people who are able to work, who don’t have to manage pain and illness everyday, and who don’t have to worry about being thousands of dollars in debt everyday with a fixed income that does not meet monthly expenses.
I don’t want to end this post without acknowledging that writing this has helped me tremendously. It’s only the tip of the iceberg but writing it helped me to see it from the outside and made me consider ways that it could change. It’s helped me as much as a really long talk with one of my very best friends, of whom I am lucky enough to have several.
Thank you for sharing this wickedly hard journey with me.