The Magical Land of Massages

I must admit, I've been struggling lately, and I have been walking a very fine line between functioning/not functioning. This afternoon, I had a massage. I came to the massage feeling (and I'm sure looking) like the walking dead and carrying with me a feeling that I never knew existed until I had Lyme disease--an exhaustion so gargantuan it felt like if I were to give in to it and rest, it would either swallow me whole, or I would fall into a sleep so deep I would never be able to wake myself up.

It's quite hard to relax when I feel like that but, hey, a massage is a massage and the next thing I noticed, I had let go of my fear of relaxing into the GRANDDADDY of all exhaustion. And. Nothing. Bad. Happened. Nothing swallowed me whole. I didn't fall into a terrifying slumber into which I'm actually typing this post from because I still can't wake up. Lyme exhaustion is a scary thing!

But, back to my massage: I closed my eyes, clicked my heels three times, did some deep breathing and felt myself r-e-l-a-x. I opened my eyes and found myself deep in the woods of a magical place that you can only get to through the hands of a very skilled massage therapist. It was nice there in those woods full of happy things like unicorns and hedgehogs.

Suddenly, I was pulled back to reality by a tiny, scared voice--my voice--talking. Voice, what are you doing?! You're ruining the Magical Land of Massages! But the tiny, scared voice--accompanied by one pitiful, single tear--was so sad and helpless that even I wanted to reach out and hug it. "Do you think I will be sick for the rest of my life?" I heard myself interrupting my massage to ask.

"No. But if you are, I don't think you'll be in pain for the rest of your life."

Unless someone finds a cure for chronic Lyme disease, I won't have an answer to my question, but the answer that my friend gave me in my moment of sadness was enough for me to close my eyes, click my heels three times, and return to the Magical Land of Massages.

Knot Having Much Fun

When I got sick with Lyme disease, I'm fairly certain my back and neck muscles signed some kind of bizarre contract with the Lyme spirochetes granting them full permission to build their city in my muscles. There are countless very stubborn (and quite painful!) muscle knots all along the muscles in my back and up my neck that refuse to release, much to the frustration of my massage therapist. I get massages at least once a week; I've tried visualization, heat, pretty much anything you can think of.

Two night ago, during my massage, the knots finally gave in and broke up! I was ecstatic and for once, pain-free in my back and neck! However, when I woke up the next day--yesterday--every one of those pesky knots were back and the pain was back. I guess those busybody spirochetes built their city right back up while I was sleeping. Today, the pain in my neck is ridiculous. It feels like I have whiplash. It hurts to turn my neck. I feel like a little old lady!

I have a lot more energy now, so I know the knots are not merely from being inactive. I also never had them before I got sick. I'm curious, do other Lymies have this same problem with muscle knots? Anyone have any luck with getting rid of the knots?

Massage Junkie

For several days now, my body has felt like it is coursing with poison. My limbs feel heavy and my body feels toxic. I get this feeling often. It's my body's way of letting me know that it needs more help with detoxing. I do spend a lot of time detoxing, but when I get that icky feeling, I know my body needs a little more help and it's time to schedule a massage ASAP.

(Click for photo credit)

My friend came over in the evening yesterday and gave me a massage. I cannot emphasize enough how crucial massage has been in helping my Lyme disease recovery. I truly would not be here without it. I have heard that many people with Lyme disease Herx from massages, because it releases toxins into the body. In my experience, if I get weekly massages, I do not Herx from them. If I spread it out farther than that, I do occasionally Herx, but not very often.

If I'm feeling bad, having a massage once a week really recharges my batteries. If I'm feeling great, twice a month seems to be perfect for keeping me going strong. There have been numerous times when massage has taken my pain from a ten to a zero, and for that I am forever grateful.

The physical and mental anguish of Lyme disease is a heavy--sometimes, unbearable--load for those of us with this disease, and to have something like massage that can temporarily relieve us of that burden feels like nothing short of a miracle. Massage therapy has given me my life back!

Relapse

In my previous post, I mentioned the big "r" word: relapse. It's sad to post this, but it's undeniable--many of my symptoms are back. I was functioning at around 90% for a few months, and now I'm down to around 60% and declining a little more each day.

It has been a gradual decline over the past few weeks, and I am grateful that I've had time to adjust to one or two symptoms at a time. If you've ever had to take pain medicine and you've felt the exact moment of blinding pain when your medicine wore off, you may understand what I mean. Having all of my symptoms come back at once would be simply hellish.

There are a few things that happened that I believe caused me to relapse. The first thing that happened was that I got a massage after not having one for over a month (because I had been feeling so well). Many people with Lyme Disease Herx from massages, but--maybe because I've always gotten them two or three times a month--I don't usually Herx from them.

The second thing that happened was that since I was feeling so well, I did two weeks off of antibiotics instead of my normal one week off (with my doctor's permission, of course). When I started feeling well again and functioning pretty close to my old self again, it became extremely frustrating to continue taking massive doses of medicine. Also, we were going out of town to go camping and I didn't want the hassle of antibiotics to mess up my trip. Lesson learned: A little bit of an inconvenience is much better than a relapse. My body was not ready for two weeks off.

I believe that the biggest factor causing my backslide is stress. I'm doing my best to reduce as much stress as possible, which--as everyone knows--is easier said than done. And finally, the last thing that caused my relapse is that I've let my diet slide. And by "let it slide," I mean I'm eating gluten, dairy, and sugar again. Every day I try to get back on the Lyme diet, but every day temptation gets the better of me. I keep trying, though. I truly need to go to sugar rehab!

Even though I'm relapsing, at this point I can still function. I can drive and I can still take care of my kids. But over the last few days, I've seen a bigger increase in my symptoms and a bigger decrease in my energy. I told my husband the other day to think of me as a character in a video game with an energy bar over my head. I told him I had about 2 out of 5 bars of energy left, although that number fluctuates greatly during the course of a day. It sure would make my life easier if other people could see my energy bar!

Lymie vs. Healthy Person

I spoke with my doctor on the phone yesterday and the two-weeks-on-antibiotics-and-two-weeks-off plan has been abandoned. I'm back to three weeks on and one week off.  She also put me on a once-a-week dose of Larium in addition to my other antibiotics. That means one day a week, I will take four antibiotics, instead of three! Ay dios mio!

My symptoms are indicative that my Babesia is flaring up again. My night sweats are back; my headaches, leg pain and joint pain are back; etc. Larium is the medicine that caused a stronger Herx in my body than any other medicine, but, ultimately, it is the one that gave me my life back. I was pretty exhausted today, but I was able to push through the pain and fatigue of another medicine. Work your  magic, Larium!

Living Like a Celebrity

This week was fantastic! I had full-time help all week for the first time since I got sick--not only with my two children, but also for me. Highlights from this week of being ridiculously pampered include: several massages, including my first hot stone massage (which was heavenly!); several of my favorite foods (chili!); my new sauna; being able to actually rest when I needed it and for as long as I needed it; help with the oodles of housework that has been severely neglected, etc.

On Wednesday, my infrared sauna came in the mail.  I have used it three times so far and I love it! I wasn't sure if I'd be able to tolerate it very well, since my Lyme disease makes me incredibly heat intolerant, but actually it's very relaxing.

An unexpected bonus came with my sauna: a booklet of humorously-translated directions. One of my favorite parts is,  "Action inconvenient people, old man and children must use it under adult's guardianship!" This one tugs at my heartstrings, "Heartfeltly thanks for purchase our product."


Alas, all good things must come to an end. Since paying for full-time help regularly is not an option on our budget, on Monday I return to having only part-time help. However, I am full of "heartfeltly thanks" for my week of living like a celebrity, even though I am pretty sure I am an "action inconvenient person!"