Moonbeams’s post was simmering nicely in the back of my brain yesterday while I was having lunch with my sis and my niece. My niece loves to dig through my purse – she has been doing it since she was a toddler and for the life of me I can not imagine why. My purse must be so boring compared to her Mom, the glamour Queen’s! I keep a notepad in my purse to help combat fibrofog. So often I have a great idea, so great in fact that I can’t imagine I would ever forget it, but if I don’t write it down, WHOOSH, it is gone. Well my niece came across something I had written down and then proceeded to never look at again, so of course I had completely forgotten about it. What she found was a list of three acts of kindness that happened to me during our trip to Hawaii. I had written them down with the intention of blogging about them. They were such simple gestures, but gestures that at the time really affected me.

The first item on my notepad was “girl who wiped sand off me.” It was after snorkeling one day. I had to quit early because I was starting to flare-up, so I just sat on the beach and watched my husband tooling around in the ocean. When he had his fill we got up to leave and I went up to the outdoor showers to rinse the sand off my legs. My flare had intensified sitting in the sun and I was having trouble reaching the backs of my calves to wipe the sand away. That is when the sweetest teenaged girl rinsing off next to me just reached over and started wiping my legs off for me. She looked up at me and smiled and said “there you go,” and then walked away. I was so touched. I mean I am a thirty-something-year-old with the appearance of a healthy person. I have no idea if she realized the level of my pain and reached out to help me, or if she is just simply that sweet, but she will never know how much she helped me in that moment. I know I thanked her, but I could not have expressed how much she really helped me.

The second thing I had written down was “passenger who helped me with my jacket.” This is something I have seen happen before in crowded spaces, like on airplanes – one passenger trying to remove their jacket while contorting their body so as not bump or punch anyone in the process. It is nice to see someone reach out a hand and help. It is especially nice for someone who suffers from chronic pain to be helped in those situations. When the passenger across the isle reached out to help me I wanted to hug her. Traveling is so painful with Fibromyalgia, and again because I look “healthy,” she was reaching out to me as she would anyone else, with a simple gesture of kindness.

The final thing I had on my list was the “shuttle driver who made sure our car would start.” My husband and I had an adventure and a half getting home from that vacation. When we arrived in San Diego in the wee hours of the morning we were picked up by the friendliest shuttle driver and dropped off at our car. He had no idea of what we had been through, but he sat and waited to make sure our car would start before he gave us the “thumbs-up” and drove away. Such a simple thing really, but so thoughtful, because truly, after everything else that had occurred, we were half expecting a dead battery.

I am so happy my niece found this list and reminded me of why I made it a point to write these down. I see kindness everyday; people holding doors for each other, bending over to help someone pick up their dropped change, giving another driver the right-of-way. What we don’t know though is the lasting impact a simple gesture of kindness can have. Even though I had not thought about these incidents in the weeks since I wrote them down, in the moment they happened, I was extremely grateful to each one of them, on a level none of them could have realized. I hope you all experience at least one unexpected act of kindness this holiday season.

Living with Fibromyalgia means you constantly have to make choices, choices that can be the difference between a good day and a flare-up. Some days I have to choose between cooking dinner and doing a load of laundry. These are relatively easy choices. I check the status of Rob’s underwear drawer, and if I can see the bottom, laundry it is! It is true. Everyday is a balancing act, trying to measure the most I can get done against doing too much and exacerbating my pain. Self-maintenance and moderation are crucial to my daily success. But sometimes the choices are clear and easy and I still chose to do the risky thing.

Saturday night we went to a Halloween party. I love Halloween! A chance to express myself in a way I cannot get away with everyday. I was feeling like a punk rocker this year. So at the party encircled by death, a donkey, and a Sarah Palin zombie I had to make the choice – do I drink or not? Alcohol is a toxin and can lead to dehydration. I know alcohol is not good for me, which is why I seldom drink. But sometimes I just want to do the risky thing and deal with the consequences. I am able to make the risky choice because over the years I have learned how to minimize the consequences.

Several years ago we went to Michigan for a good friends wedding. I know, not another wedding story, but this is important, because it was on this trip that I was really forced to listen to my body. I had not yet made the connection between the things I put into my body and the effect it had on my Fibromyalgia. I had to learn the hard way to listen to what my body was trying to tell me. On this trip it spoke very loudly!

Cathy is another of my best friends from high school. Her wedding was an event. The three or four days leading up to the ceremony were constant celebration – showers and parties and dinners and more parties – just non-stop festivities. And then the wedding itself was a grand occasion. It was a wonderful time and I let myself enjoy every minute of it. But of course it was not without consequence.

The day we left to fly home I felt awful. Five days of gross consumption and celebration were taking hold. We had a short flight from Saginaw to Cleveland and with each passing moment on that plane my pain intensified. By the time we got off in Cleveland to make our connecting flight I was in one of the worst full-blown flare-ups I have had to this day. I could barely walk. The gates were not close and the airport was packed. I could not stand upright the pain was so extreme, and each step I took sent waves of fire up and down my backside. My head felt like it would burst.

The airport was buzzing with intense and impatient people. I could feel them flying up behind me, and I could hear their grunts and sighs of disapproval at the speed I was moving. Overwhelmed with the pain and the pressure, I almost broke down. I was miserable and desperately wanted out of the chaos. I remember I asked Rob if we could just go get a hotel somewhere in Cleveland and then fly home the next day. I couldn’t bear the thought of getting on another plane in the pain I was in and I just wanted out of that damn airport. But we got on the plane and I spent the next four hours in a misery I will never forget.

The pain was so unbearable I could not sit back in my seat. I sat on the very front edge to have as little contact against my body as possible. I was weak and unstable but I could not lift my arms up to help support me, so instead I pressed my forehead against the seat in front of me for balance. And I remained like that for the long, miserable, four-hour flight home. I could not talk, or turn my head, or even acknowledge Rob. We waited until everyone behind us got off the plane and then I painfully stood and made my way to the exit. I have never been so glad to be home.

I don’t remember how long my recovery from that flare-up took, but I will never forget that flight home. I imagine that flare-up lasted quite awhile because most of mine did back then, and the reason they did is because I was just in the beginning stages of learning how to listen to my body and understand that what I ate or drank or did directly impacted my Fibromyalgia. I am years ahead of where I was then and that is why I allow myself to make the occasional risky decision. I know better now how to go into it and how to handle it after to avoid, or at the very least minimize, the potential flare-up.

So this Halloween I took a risk and decided to drink. I knew my body was well hydrated because it is the most important thing I do for myself each and every day. I had also eaten a healthy dinner before going to the party so I was not tempted to eat the chips and dip, and cheese and crackers, and pizza, and candy etc. Taking the risk to drink was made less risky by the good choices I made beforehand.

Sunday I woke up feeling exactly as I knew I would – tired and dehydrated, the early signs of a flare-up. First thing I did was to get up and make myself an Emergen-C energy drink. This is a very important tool in my maintenance. Here is a description of the product from their website:

Feeling good is better than feeling bad. And it was upon this brilliant concept that Emergen-C was founded.

Emergen-C gives you 1,000 milligrams of Vitamin C for the immune system. It gives you a full complement of energetic B vitamins. It gives you 32 minerals and electrolytes. It gives you a health and energy boost. It just gives and gives and gives.

I can’t tell you how many mornings I feel just plain awful and I drink an Emergen-C to feel better. Emergen-C is one of the things I have learned to rely on in my quest to manage my Fibromyalgia. It is a great natural aide and if you have never tried it you can request a free sample on their website (and no, I am not in any way affiliated with them).

Like I said before it is a balancing act. I have not given up everything I enjoy that is detrimental for me. I just prepare better and enjoy in moderation. Listen to your body and learn. If you know Saturday is going to be a busy and taxing day for you, plan to take it easy on Friday and/or Sunday. Learning to say no to some commitments enables you to enjoy the times you say yes even more. These are just general examples and may not apply directly to you, but it is important to think about self-maintenance and moderation. They are two very key components to living well with Fibromyalgia.

I had a great time at the party Saturday. Sunday I re-hydrated and relaxed. I did not clean the floors or the bathroom like I had planned, but it was a good trade off. I allowed myself the risk and did not feel guilty about the consequences.

At the end of my post about our trip to Hawaii, I promised to post on how the universe has a way of making sure that for every “great” moment, there is an equal if not greater “oh no, I can’t believe that happened” moment.  I already mentioned that our laptop died somewhere over the Pacific, well in addition to that we had several other “oh no” moments to keep us laughing (which kept us from crying).

I will try to make this short, because who really wants to hear a bunch of complaints about a trip to Hawaii – really!  My husband suggested I name the post “Planes, Pains & Automobiles.”

To start with some inept travel agent (me) booked our departure flight for 6:15 a.m.!  If I ever was a morning person, Fibromyalgia has not so gracefully relieved me of that attribute.  Somehow both my husband’s and my alarm failed to go off that morning (yes we have dueling alarm clocks) and we literally woke up with enough time to brush our teeth and go.  Have you ever been on a 6+-hour flight with no shower to refresh you?  Not so fun.  Then the lovely people at United Airlines separated us, so the one person who could understand how funky I felt was not by my side.  I would have felt bad for the gentleman sitting next to me if he wasn’t so damn scary.  I did feel bad for his poor son, and for Rob who sat ahead of me next to a convulsive lady who read 10 newspapers and kept her butterfly elbows in Rob’s face the entire flight.

Upon arrival in Kona we find out that Hertz is literally sold out of rental cars, and even though we have a reservation, we will have to wait until the next day to pick up our car.  Okay, we can live with that.  A cab takes us to our condo, which is in walking distance to tons of great restaurants and shops.  We have a lovely evening and return the next day for our car – an adequate economy car, complete with air-conditioning, power steering, and COCKROACHES!  I didn’t know I could still move that fast.  Rob “handles” the problem and we are off (but there is really never just one is there?).

So we decided to go snorkeling because this is decidedly the most relaxing and enjoyable thing in the world!  The thing we have most been looking forward to outside the wedding.  We go to one of the most popular spots our first time out.  It is great!  The second I put my face in the water I am overwhelmed with the variety and beauty of the fish around us.  I even make a friend in a little puffer fish that circles me continuously, and I SWEAR, leads me to my first sea turtle sighting!  Things are great until Rob realizes his wedding band is missing.  He has snorkeled with it dozens of times and has a great technique to keep it on, but not this time.  We search the sandy bottom where we entered, but if it is there, it is impossible to find. 

This is the kind of thing that normally has me in knots, but somehow we are okay with it.  It feels right.  We were married in Hawaii almost 5 years to the day, and now we have given back – an offering to the island if you will.  It is such a beautiful and spiritual place and we are okay with giving back a small token of our love.  So things are looking up, and Rob goes out one more time by himself.  I watch him from the beach and it looks like he is having a great time.  When he finally decides to come in he is holding his flipper in front of his stomach.  I don’t think much of it, until he gets in front of me and shows me a gash from his left nipple, across his stomach and down to his waistband, and then I see the scrapes on his hands and knees.  He tries to tell me a sea turtle attached him, but it turns out he swam into a shallow area and a wave pushed him into the coral.  That’s gratitude for you.  What? Do you want my ring too?

Back on dry land the rest of the trip was great.  Our last night we drive 40 miles north to where most of the wedding party is staying and we have a great Thai dinner.  The final hurrah!  As we are driving back along the dark, dark road to our condo, something sleek and quick and black darts in front of our car.  “Did you see that?  Was that a cat?”  Sure enough, a cute little black kitty cat crossed our path.  Neither of us comments on the implications.

We fly out the next morning, and again United decides we do not need to sit together.  This time I am stuck next to a passenger who takes up her seat and some of mine.  She can not put the arm rest down, and being on the isle I am stuck either hanging part way into it and being bashed repeatedly by passengers and drink carts, or I can sit scrunched with my head and neck in a weird angle.  Neither works for someone with Fibromyalgia, or anyone for that matter.  I am miserable for over 5 hours, but too stubborn to say anything and really uncomfortable with the idea of embarrassing her. 

So that flight finally ends and we have just a short flight from L.A. to San Diego.  Yeah, we are so close, but no!  As we approach the gate to our second flight I hear the announcement, “Due to inclement weather, flight 56 to San Diego has been canceled.”  Inclement weather?  In San Diego?  Damn that black cat!

After hours of haggling (apparently United is not to be blamed for the weather) they finally agree to bus us the two hours to the San Diego airport.  Our driver is about as happy with the situation as we are.  He takes to the L.A. freeways at super sonic speeds, and Rob cheers him on.  We are making great time, but then…  Then we hit the thickest fog bank I have ever seen.  No joke.  You can barely see 5 feet in front of the bus.  Superman who was once driving at warp speed has found his kryptonite.  Cars fly pass us at 30 mph while he inches on, terrified.  He spastically flashes his lights between high and low beams, like he is sending out an SOS.  At one point I literally think he is going to just put it in park and break down crying.  And we passengers just sit there.  No one says a word.  He continues driving like that for the next 70 miles.  At one point I hear Rob suppressing a giggle.

We finally arrive at the San Diego airport at 1:30 a.m.  It is another 40 minutes drive to our house – in the fog.  The drive gives us a chance to laugh about everything that has happen.  We finally bring up the black cat and the thoughts we had that neither of us wanted to say out loud.  Turns out it doesn’t matter whether you say it out loud or not.  I vow not to let our pet sitter know we made it home until we are actually in the door of the house, even if it means I am texting her at 2:30 in the morning. 

So we made it home, safe and sound – minus a laptop, a wedding band, and a few layers of skin.  But all in all I handled things pretty well – at least that is what I thought.  And then the hives hit me.  From my eyelids to my toes, stress always finds a way of coming out.  Even when you try really hard to laugh it off!

[youtube=http://www.youtube.com/watch?v=xJSey8HRUhU]

Of course there were a few options to pay for online access – coffee shops, hotel lobby, etc.  But that would have meant that instead of snorkeling with sea turtles and dolphins (and a puffer fish that I think might actually have been in love with me); instead of a beautiful sunset cruise with friends and family of the Bride and Groom; instead of quality time spent in paradise with my husband, I would have been planted indoors on hard wooden chairs trying to come up with something clever to say.

I think it worked out the way it was meant to.

We had a great time.  The wedding was the most romantic and seriously beautiful I have ever been to.  Kim was a stunning bride.

Maybe I was caught up in the Spirit of the Hawaiian Islands, but the people who attended the wedding were all some of the most genuine and interesting people I have met.

I even felt relatively good while I was there which was great, because traveling with Fibromyalgia is sometimes a crap-shoot.  Besides one minor flare-up that lasted only a few hours, I was able to snorkel, walk around the historical town we stayed in, and even dance with little reservation at the wedding reception.  I mean come on.  Who can resist getting a little groove on to Brick House?

Fun – huh!

So all in all it was a great trip, but the universe has a way of making sure that for every “great” moment, there is an equal if not greater “oh no, I can’t believe that happened” moment.  I am saving those moments for another post.  For now I’ll just say they involved a black cat, a sacrificial offering to the island, and some fog!