Holy cow! I’m on my honeymoon.
Holy cow! I got married.
Anyone who has had chronic Lyme Disease understands that these two things seem out of reach after the days and months and years of being bed-ridden, anxious, depressed, severely ill, in extreme pain, constantly canceling plans, reluctant to make commitments because the body is forever failing.
I can’t credit the coil machine for giving me a wonderful man who fell in love with me, with whom I too fell in love. But I can say that as I’ve gotten healthier, I’ve had the opportunity to take advantage of this growing love.
This is my first and only blog post for August. I thought I would be able to keep blogging, even as we counted down the days to the wedding and tried to get everything done before people arrived. But I couldn’t. I did my share of wedding preparation, part of which was to rest so I wouldn’t be to exhausted the day of the wedding. Joe did a lot more than I did, a lot more running around, a lot more of the physical preparation. I did the sedentary work (like designing the program and making phone calls). And I had a fair number of naps or hours of bedrest when I couldn’t do another thing–including sleep!
My plan for coiling was to make sure I was having the fewest symptoms possible. I coiled enough to keep the symptoms from creeping up. But I coiled no more than I had to because I didn’t want to deal with any big herxes that would land me on my back for multiple days. I consumed lots of antioxidants and regularly drank kombucha. I used the sauna 4 days a week or so, to minimize back/kidney pain and reduce my toxin load. I did yoga a few times before the wedding to calm down my upper body from all the tension of using a computer. I decided I would be making no progress on killing any of my infections, but that the progress in the rest of my life was a more than adequate trade off.
In the days leading up to the wedding, my friends and family arrived and I delegated much of the preparation to them. And once I asked someone to do something, I let it go. I knew that stress would make my symptoms flare just as badly as overtaxing my energy would. So I let people love me and show it with some amazing feats of artistry, food preparation and so much more.
I decided in advance that I wouldn’t have a wedding cake that I was unable to eat. Joe and I decided on cupcakes. That way there would be several flavors, one of which we could share (and he could have his favorite flavor, too). Miraculously, my sister came up with a recipe with no food allergens in it (try baking with no flour, corn starch, potato flour, eggs, butter or anything else that makes a cake a cake). I call it the lemon coconut miracle. Then we rented a cupcake stand. When it showed up, I had no energy or creativity left to think about it. Four of my friends (all of whom I consider sisters, one of whom was related by blood) took over and turned it into a masterpiece.
On the actual wedding day, I rested at the hotel with my family. My mother and sister helped me get ready. My father sat on a couch “supervising.” And my brother-in-law played with my nephew. It was a relaxing time with a few moments to catch a quick nap and have a small snack.
We planned out the wedding as an afternoon event, in part because I fade at about 5 pm. It was a joyous occasion. I got to dance a little. I spent time at a photobooth with many of the guests. I had a grand old time and gave myself a chance to sit as much as I needed to.
With the help of Joe, my groom, we planned it out to be respectful of my needs (as well as his) so that my illness was a footnote to the event, and not a predominant theme.
It was a major boost to my spirit to have set it up so well, with our family and friends gathered in celebration around us. And it was very different from my previous experience of my family and friends gathering around me to care for me during dire, desperate circumstances.
I managed to hold it together for a few days before and a few days after the wedding. Then I collapsed for a few days. We were both so hyped up that we wanted to do lots of things to wrap up the loose ends. But alas, although we did a few things (well I did a few things and Joe did a lot), I wasn’t very effective in doing much more than collapsing for many hours each day.
Traveling to Hawaii has different challenges. First, I want to do everything and I really need to sit still to overcome the exhaustion of the wedding and the flight. So I’ve slept more than 10 hours a day since we arrived. In addition, I’ve had a fair amount of sitting on the beach or on the lanai of the condo we rented.
Second, there is food. I brought and purchased enough of the foods I can eat without a reaction to cover all but 1 meal a day. I have breakfast, lunch and snacks. Then I do my best at dinner. The food is absolutely scrumptious. Incredible. And I end up with a big belly and loose stools in return. I’m a little worried about consuming mercury, but it is unavoidable if I want to eat any local fish. The best thing I could figure out is to take diatomaceous earth daily to keep it coming back out of my system. I may end up having a slightly larger problem when I get back, but I’ll figure it out then.
Despite the challenges, this has been a wonderful trip so far. We have no photos yet to prove it because we’ve been going to the beaches, but we’re seeing such wonderful things. There is a beach right outside the window, so anytime we’re at the condo, we can hear the waves crashing against the shore. On the other side of the condo, I was looking in a tidepool and saw three moorish idols feeding in the shallow water. So beautiful!
Yesterday morning, we went to Po’ipu Beach to go swimming. It was my first immersion in an ocean since August 2005. The water initially felt chilly, but it was 78 deg F, and it didn’t make my joints freeze up. That alone was incredible. I paddled around in the calm waters and floated on my back for about 15 minutes. I remembered reading about earthing, about getting in balance with the energy of the planet. I’m not sure if I did that, but I felt different by the time I came out.
After swimming, we walked around a little, visiting a green sea turtle, known locally as honu, which was sitting on the beach surrounded by a rope to indicate how close humans could stand. It was a large and beautiful creature, just lying around absorbing the heat of the sun. It was a lesson to us busy humans that resting is a natural use of time.
My swim required a nap of a more than an hour to recuperate. My nap was surrounded by the sound of the ocean, a pleasant breeze and a complete sense of relaxation.
Later in the day, Joe went surfing while I sat on a beach chair under a tree. I watched a storm cloud pass us over the sea. I observed sand crabs on the shore going in and out of their holes in response to the waves crashing on the shore. I rested and delighted in the environment.
What does this have to do with coiling and Lyme Disease?
I spent many long years concerned almost exclusively with the condition of my body, my failing health and my desperation to get my life back. Lyme Disease is an explanation for many of the limitations I’ve faced over the past 5 years. I wasn’t sure I would ever get beyond the illness and it’s complete overwhelming of my life. I wasn’t sure I would be able to get up and go anywhere again. I wasn’t sure I would gain any of my former independence back. I wasn’t sure I would be well enough to hold up my end of a relationship. I could see a dead-end in front of me and I was looking for a way to make a U-turn.
Slowly, slowly, I’ve found my way towards healing my body and my damaged psyche. I held out hope that I could get my life back on track and actively sought out ways to make it happen whenever I had a little extra energy or attention.
I’m not completely “out of the woods” but I’ve found my path. I still have significant limitations and struggles, but I can enjoy my life on modified terms. Not just enjoy my life, but thrive in the magnificence of the world around me.
I’m also more resolved to completely overcome Lyme Disease so that the limitations decrease and I can have the life I want.