The Light and the Green
The Light and the Green (Photo credit: Wikipedia)

Yesterday I began fantasizing about suicide again. Back and forth my mind argued the pros and cons. The two biggest cons are that I have an 11-year-old and that I am afraid of committing the act. I’ve always thought of pills as the best option. I have a full bottle of Soma and I imagined Googling to find out how much Soma you would need to off yourself. I could also throw in 10 or so Lortab and a couple of bottles of Nucynta I have lying around. I think it would probably do the trick, but there is no way to be sure. I don’t want to wake up and face the consequences of the action.

And then there is my son. My Ex partner could raise him. He loves her a lot. I’ve always been more of the provider parent and I can’t do that anymore anyway. If only I didn’t have him I could just slip away. I know how selfish this sounds and that the pain for him would be unbearable. So I feel stuck in this parallel universe where suffering is the flavor of each day.

I watch as people around me get up and do simple things. They go to work, take vacations, clean their houses, and are able to stand up long enough to do things like cook dinner or go grocery shopping. They seem to be able to think clearly and pay their bills, keep track of things,. They shower, put on make up, and get dressed. From the outside their lives do not appear to be drenched in failure.

I imagine myself as just my skin, with no innards, washing up on a beach and occasionally being picked up by the waves. The sound of the waves carrying me in and out is comforting. If only to be free of this body.

I’ve been sick for four years now. My meticulous mind wanted to search through my medical records and find the exact date that I first approached a doctor with what was then an unrelenting pain in my left shoulder-blade. The pain began to spread and triggered migraines that felt like an ice pick had been driven into the left side of my skull. There was also fatigue, severe constipation, lack of appetite. I began living on caffeine, sugar and Hydrocodone, which kept me upright and able to show up to my job for a while. Eventually that became too hard.

I had two cervical steroid epidurals for the pain which helped with the migraines. I had my thyroid removed which had grown to the size of a golf ball. And then things began to get worse. I started cycling through periods where I would begin to feel a little better and I would feel hopeful. These periods lasted two to four weeks at best and were always followed by severe crashes into sickness that were worse each time.

New symptoms began appearing. A high-pitched buzzing in my ears accompanied by the sounds of electric shock as if there was an electric current in my brain. Extreme sensitivity to noise that made the television sound like a cacophony of high-pitched yelling. My teeth began erupting with decay and I had to have one of them removed because I couldn’t keep up with the cost of replacing them. The pain began spreading further into the left side of my body, my left hip, my left ribs, all the way down into my left ankle and down my left arm. Sitting upright, standing upright, and enduring things like grocery shopping or cooking began to feel like running marathons. Each day became an arduous task to get through attending to the most basic obligations of parenting. Wake up, take kid to school, return to bed, pick kid up, feed kid. Attend meetings with kids teachers where it always felt like I was being judged for his difficulties with attention and focus in school. There were always the pointed questions about his passion for video games and his diet.

I was no longer able to do simple things I used to enjoy, like singing, writing, shopping. I began to pull away from all sources of support including my therapist because I was tired of hearing the same story coming out of my mouth. I didn’t want to talk about it anymore. It didn’t help anyway. It just seemed to reinforce my helplessness.

My losses parade themselves in front of me daily with the same hidden message indicting me as the culprit in this putrid fairytale. They include the deaths of people who loved me, but also the death of my former self. The striver, the achiever, the provider. The tenacious resilient one. The force to be reckoned with. I was once a rebel, and at my best, a helper.

Recently the possibility of Lyme disease began presenting itself. The current diagnoses on the table include Hashimoto’s (even though I have never shown the antibodies) and cervical spondylosis and stenosis causing abrasions in the nerves at C5 and C6. There is also the total thyroidectomy one year ago and the subsequent inability to find the right dosage of medicine to keep me somewhere between hyper and hypo. When my thyroid was removed I stopped having periods so there is that to consider also.

Other unusual things have popped up in my body as well. I developed bumps on my hands that look like warts. And my body is covered in Petechiae (those little red spots that show up as we age).  Shortly after my thyroid was removed I developed thrush (a yeast infection in your mouth) which has improved slightly but still persists. Candida is suspected because of this so I was prescribed Diflucan and cleaned up my diet (no sugar, no gluten). I started juicing also and rapidly got worse. I started having extreme weakness and worse problems with memory and focus. I noticed that when I write by hand I misspell words frequently and often mix up words when I am speaking. My mother died of Alzheimer’s last year and I often wonder if that is where this is going. I had to stop the Diflucan because of how sick it made me. I read up on candida die off symptoms and it seemed likely I was having them. Its been almost two weeks now since I cleaned up my diet and started juicing and I was really hoping it would help. I was incontinent yesterday for the first time in my life but I’m hoping it is due the diet and juicing. More and more effort is expended with little outcome. However my lack of appetite has made eating this way more feasible. The only thing I really miss is honey in my tea in the morning. It was one of my few pleasures.

A few weeks ago I went to a Lyme literate clinic and paid the $500 for the visit and the $200 for the Lyme test from Igenex. I was bitten by a tick approximately 5 years ago (no rash). My practitioner told me she suspects Bartonella, which I was also given an herbal challenge test for. Still waiting on results for these things. She also gave me a slip with a bunch of other tests that I am waiting to have done once my insurance kicks in through the state. A few months ago I was let go from my job because I was out on medical leave for a year. I also purchased some mold plates and set them up in my home according to directions. I’ve seen black mold in the storage area of the apartment I live in. A few days later I checked the plates and they were covered in black and white mold spores. I couldn’t summon the energy needed to send them in to the lab and they are still sitting in my closet. This has me worried. If the mold is making me sick, what can I do? Move? No. No energy. No finances. Few rentals in this area where I have committed to keeping my son in the same school. The feeling is the same again. No escape.

I worry about my son because he doesn’t seem “well” either. He’s always tired, more tired than normal for an 11-year-old. He complains of vague pains in his body. He has ADHD, one of the worst cases his teacher says she has ever seen. He loses handfuls of hair in the bath tub. He craves sugar like a fiend and when I limit it he constantly barrages me about how I’m trying to control him.

There are lots of people worse off than me. I try to remind myself of this. I can still walk, even if I don’t want to. My pain is constant but not excruciating. I have a supportive partner and memories of what it felt like to be loved by others who are no longer in the picture. I can still write, even though it is uncomfortable to do so. I don’t have a terminal illness that I know of, although I often wish for one. On days when I feel slightly better I worry that I am dying because I suddenly remember there are some things worth living for. Those days are few and far between. Each time I think I am hitting the bottom of this “thing”, I am thrown back up against the wall by another crashing wave leaving me broken and battered.

Recently I read Amy Tan’s recount of her diagnosis with Lyme. I found it very validating because I saw so many of my symptoms in her story. It made me feel hopeful for about 24 hours. But I have been fooled before. Two surgeries, two cervical steroid injections, each with the hope of returning to my former self. I dreamed of finally finding out what was causing my multiple symptoms. Now I barely allow myself such hope. Each time I end up feeling like such a fool for thinking that any one thing is ever going to make me feel better. If the Lyme test is negative, it will be invalidating. But even if it is positive, the road to health is rocky, uphill, and uncertain. I’m also scheduled to revisit the Neurologist soon to describe my newest symptoms. At this time, there is no end in sight. No tales of redemption. No basking in the Lyme light.

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2 thoughts on “Lyme Light

  1. Thanks for this post. My aunt was just diagnosed after feeling bad for years. Finally, an answer! Definitely sharing this with her.
    Enjoyed your take on Lyme vs. “Under the Skin” movie as I am also a chronic illness survivor and can relate to that analogy.
    Looking forward to your perspective as I still have so much to learn about Lyme. Keep Spooning!

    Like

  2. Have you read Brian Rosner’s new book: Freedom from Lyme disease? It is so good! Please write more entries. Your writing is so good and helpful to other people who have lyme or loved ones with lyme.

    Like

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