When There’s No End in Sight

I have been wanting to update here, but have been unsure what to say. I ended my last post with hope for more good days. Unfortunately, they didn’t come. December has been a tough month for me, Lyme-wise. At month 15 of living with Lyme, sometimes it’s hard to be upbeat. I don’t want this blog/space to feel like a complain-a-thon, especially knowing that so very many people are in worse health, and harder situations than I am. But at the same time, I do need to acknowledge that what I am dealing with is difficult, and sometimes it is hard to be hopeful.

I have been off Lyme-killing antibiotics for a little over a month now. I decided with my doctor to eliminate most of my supplements as well. I had experienced a lot of improvement, and we felt confident that the several drugs I had been on for various lengths of time should have done what they were meant to do. So we decided that I would go forward with just vitamins (fish oil, vitamins C & D) and probiotics to see how I did.

Before I was totally drug-free, I had to do a course of an antifungal to take care of the candida/yeast build up that is inevitable after taking the amount of antibiotics that I did over the past several months.

It was the end of November. My Best Month Yet was over. I wasn’t feeling well, but hoped it may just be a result of the high dose of antifungal I was on. I finished the antifungal, and continued to feel poorly. As days passed, I felt worse and worse.

During my Best Month Yet, I was so pleased to report to my doctor that I was not experiencing any droop face (Bell’s palsy) at all, and my nerve pain/neuropathy was virtually gone. In December, it came back with a vengeance. Over the last couple of weeks, I had drooping face nearly all day, every day. The neuropathy in my right limbs was getting worse with each day, spreading into the entire right side of my body, and becoming unbearable. It felt like the whole right side of my body was buzzing or vibrating, all day and all night. It took three pillows to prop me into a position that was somewhat conducive to sleeping each night.

My wife asked me if this could be caused by discontinuing one of my supplements – good thinking, babe! I contacted my doctor. I had been on Inositol, central nervous system support sometimes prescribed for diabetic neuropathy, from February-November. My doctor agreed I should resume taking it, and also recommended a couple of other supplements, that I’ll add in this week.

Since restarting the Inositol on Monday, I am experiencing some relief, thank goodness. My energy and cognitive function are still not great. And I do still have pain, but it’s bearable.

I’m not sure exactly what my next steps are, will be, or should be. I’ll see my doctor again after the holidays. In the mean time, I am left to make sense of this stage of my illness. I’m really sick and tired of being sick and tired. For 15 months now, I’ve been running after this dangling carrot of Getting Better, and I’m tired. I want so badly to Be Better, but I can’t picture how I’ll get there, and it feels a bit like being in suspended animation waiting to get there.

I keep thinking that perhaps I need to let go of this idea of capital B Better in order to really understand how to live with this disease. I have been hesitant to write those words here for fear of them being misinterpreted as giving up. I am not talking about giving up. I’m talking about finding peace with being ill, and figuring out how to keep living my life as best I can while coping with this illness, whether I’m having a good day, or my symptoms are flaring like mad. Continuing to fight, but not focusing on the finish line, as I don’t know if a finish line even exists. It’s a mental shift that I’m trying to figure out how to make.

Over the past 15 months, I have been fighting to keep my life up and running while my body has been trying to stop me in my tracks. I’ve had to find ways to care for myself, my family, and my home, over and over. In each Good Stretch, I would frantically try to Do All The Things and catch up on life, and make the most of my energy. In each Bad Stretch, I’d mourn the loss of feeling good all over again, and have to rediscover how to keeping moving with my ever-evolving symptoms, how to adjust my bare-minimum to the particular level of fatigue, pain, and/or cognitive trouble that I was experiencing that day/hour/minute/week. I have survived this roller coaster, in large part, on the hope that it would end. But it HAS NOT ENDED, and I need a new approach.

I am ill. I have Lyme Disease. Call it Late Stage Lyme Disease. Call it Neurological Lyme Disease. Call it Chronic Lyme Disease. Call it Pain in the Ass Lyme Disease. The bottom line is, I am sick. Even on good days, I am sick. I don’t know when or how I will/can ever be Not Sick again. But that is only one part of me.

I am a mother, and a wife. I am a writer, a singer, a ukulele player, a coloring book color-er, a knitter, a friend, a sister, a daughter, and so many other things. Somehow, I need to figure out how to be all of these things while sick, with or without the promise of ever getting better.

And that is something I am still working on.