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How to be

Monday, January 20, 2014

When I first became disabled by Lyme Disease in 2007, I didn’t know how to be sick. Believe it or not, being sick and disabled requires a different skill set than being well and having a full-time job. The first year or so, I had to learn how to be sick in a way that allowed me to get on from day to day.

In the more recent past, maybe the last year or so, as my health has improved enough to have days with energy and with low levels of pain or short periods of pain, I’ve been learning how to be well again. I haven’t quite reached the point where I’m figuring out how to hold a full-time job again, but I am slowly learning to be well.

Unfortunately, I’ve forgotten how to be sick. I find that I am sick some days, and as I try more Lyme triggers, I expect to be sick for many days, even weeks, in a row. So I’m thinking about the difference between being sick and being well and how to be myself on each kind of day.

How to Be Sick

When I was first really sick, I didn’t know how to slow down. I moved in slow motion, but I had a long list of things I wanted to do every day. In the evening I felt guilty and disappointed in myself for how little I accomplished. It took months for me to try reading for pleasure or watching a video. In the beginning, I thought about work all the time and assumed I’d be back to work in a month or so, even as month after month passed by.

Eventually I started watching Star Trek: Deep Space Nine. It turned out to be a good distraction, helped me to lie still, and offered a heroine I could pretend to be in the form of Jadzia Dax. I still felt guilty after every episode, and when I watched 2 in a row, I berated myself.

At some point, one of my doctors, back before I knew it was Lyme and needed serious antibiotics (or something to combat the infections), told me what I really needed was a lot of rest. She was adamant that I find a way to stay in bed, not to fight my body to try to sit up and do what I thought I “should” be doing. Somehow that gave me permission to relax a little, believing that relaxing was my active contribution to helping my body heal. I also learned to read with abandon, devouring all 7 Harry Potter novels in a matter of weeks, actually just in time for the last one to be published.

Over the years, I’ve read a ton, watched more movies than I ever expected to, taken more naps than I can count, and slowed down a lot. When I can remember these things, it is a lot easier to be sick.

So, when I am sick, the first thing to do is take stock. What are my symptoms? Is there anything I can do to make them less intense, e.g., drink lemon water, detox extra, get my husband to massage my head and neck? Then I do them, either immediately or over the course of the day. Second, I convince myself to rest. Usually it helps to have an easy but engaging book to read. Then I lie down. And rest. And read. And nap. The only required activities for the day are eating and coiling. Everything else has to wait until tomorrow.

If I don’t follow this plan on a day when I am quite ill, I end up frustrated, angry at myself, and down about the world. If I follow the plan, I am able to accept a temporary setback and allow my body to regenerate to start the next day refreshed.

I am once again having trouble watching videos, but at least I have had the good sense to read and nap on some of the recent bad days.

How to Be Well

Learning to be well again is a different story. For so long, I’ve worried about using up all my energy for the day in the first hour or two. It was a legitimate concern because I often had only an hour or two of energy in me for the day. Over the past year or so, things have been changing. I have good days that last half or a whole day. It has been a struggle not to hold myself back from making a list of things I want to do and doing them because I’m worried that I might overexert myself.

So, I have learned to be well in a different way. If I seem well in the morning after doing my usual morning routine, I make priorities for the day. There is always more I’d like to do than what I can do, but often I can do more than I expect. Other times, I discover I’m much slower than I believe, and a few things take a very long time. Which brings me back to the priorities. Some days I prioritize exercise because I can tell I have energy to burn and bones to rebuild. I’ll go for a walk or run, soon I may add yoga classes back into the list. Some days I prioritize blogging, responding to email and other correspondence, returning phone calls, paying bills, etc. Some days I prioritize housework, catching up on laundry and dishes or dealing with a project that has been on hold for several months (like cleaning out my drawers for clothes to give away). Some days I prioritize going out, either for local errands, to the beach or out to eat. On these days, I might do something else as well, but I start with the things that I most want or need to do, then I move on to the next thing I want or need to do. I often have a bigger list than I can accomplish, but I do my best to decide what’s important, then stop when I run out of energy.

The trick is to save time to coil. As long as I coil among my other activities, I feel like I had a good day. When I do nothing on one of my good days, I have a hard time because I need the stimulation to keep me going. For so long I had to lie still or sit still. Now I need to move when I can.

Finally, even on good days, I run out of energy. When I get overwhelmed or tired, I lie down for a few minutes, maybe take a nap or if I’m not sleepy, read or knit. That allows me to slow down and get through the day.

I find it hard to switch back and forth between sick days and well days. It’s difficult to wake up each morning with no expectations carried over from the day before. I’m learning now to live in the moment and take each day as it comes.

Other Updates

Over the past week, I’ve continued to battle Lyme and the other tick borne infections, make decisions, and worked on the other chronic problems.

We stayed in the far cabin, enjoying snow with diamond dust sparkling in the moonlight.

We stayed in the far cabin, enjoying snow with diamond dust that sparkled in the moonlight.

My birthday was on Saturday. I turned 39 years old. I had a crisis on Thursday about my age and the number of years I’ve been battling Lyme. That day, my husband took me up to the Sierras to spend a night in a cabin. By the time we got there, I had cried and napped, and was able to relax and enjoy the little bit of snow that has fallen this year, as well as plenty of good food. We continued our trip, spending Friday near Lake Tahoe, then drove to Oakland, to stay with a friend. I had my first taste of Burmese cuisine on Friday night, then enjoyed dim sum with 5 people I love on Saturday morning. Sunday we went for bike rides (after which my energy crashed and my back hurt for the rest of the day). Today we went for a nice long walk, then I worked in the home office, catching up on things going as far back as Christmas cards(!). I decided that 39 is A-OK with me. I’ve learned so much in my first 4 decades on the planet. I feel brave, trying to truly heal using a coil machine and boldly triggering the infections. I still have plans and desires and dreams, some of which I’m already pursuing, and some more to start soon enough.

I stopped coiling on Thursday morning because my function generator died. I was able to get my hands on another one. However, the broken machine did a number on me. I was so depressed and frustrated that it made all the aging distress get amplified by a factor of 500. It was horrible. I still haven’t coiled, even though I have all the parts. I decided that I would take another set of Lyme and co-infection tests to see what I can learn about both the infections and my immune response. The blood draw is today. In preparation for the blood draw, I’m doing another egg exposure in the hopes that my immune system will be in an active mode. I’ll write about what the egg does in the next post. I also had plenty of wheat today. I’ve got my fingers crossed that I’ll get interesting results.

Since the last egg exposure, the Babesia is very awake. I’m back to daily nightsweats. After not coiling these past few days, I had to change my night shirt twice last night. Then I’ve had lots of tingling in my arms and legs, plus crazy dreams and long periods of wakefulness at night as the Bartonella reproduces without restraint. I’m looking forward to getting back to my routine. I’m also pondering how to coil smarter. I have three infections to coil for (Lyme, Babesia and Bartonella), each of which has responded best to coiling multiple hours a day. It isn’t really possible to do all of the full protocols every day. So I’m pondering the most effective parts of each coiling plan to develop something tenable to get me through until I’m done with at least Babesia. As I figure it out, I’ll post the protocols.

Finally, my period came on Friday. It was only 30 days since the beginning of the previous cycle. I had mild PMS, mostly cramps (but they might have been from Bartonella) earlier in the week, and a freak out on Thursday. The day I got my period, I had very urgent bowels with cramping, but no diarrhea, dry heaving but no vomiting, and pretty bad fatigue. I think my body has found a new balance without Vitex. My weight hasn’t changed yet, if anything, it still seems to be increasing. Yikes! I’m not sure quite what to do, if anything. In 2008, everything I did made me lose weight, but helped with the other aspects of the treatment program. Now, everything I do to trigger Lyme makes me gain weight. I’ll think about what I should be doing next and maybe try something new.

Disclaimer

2 comments

  1. Thank you for your posts. I found your blog in the fall of 2012 and it helped me figure out which infection was trying to kill me at that time and was winning. Thank you. I’ve been following you ever since. Your posts help me get through the rough days. I find I am almost paralleling with you completely most times you post. Much Love and Light ❤️Jessica


    • Thank you, Jessica, for your appreciation. I hope that you continue to heal and that we both find ourselves on the other side of Lyme before too long.
      All the best,
      Rose



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