Christmas Week, 2013
Okay, so we all know the physical and emotional stresses for ME sufferers brought by the holidays. This year, I’m afraid, I added heaps more by agreeing to spend Christmas week in Hawaii at our time share with our children and now year-old grandson.
To go or not to go? Travel can be stressful even for the healthy…
We have this timeshare because Steve and his sister inherited some money from their mother in 2001, and our two families decided that she would want us to use it to be together. Our niece Tracey sold Marriott time shares in Hawaii, and convinced us to buy three for Christmas week, one for the four adults, one for our two children and one for our nieces and nephew. Yes, I was ill at the time and the thought of a flight to Hawaii from New Jersey was hair-raising, but we agreed to swap the week each year to go someplace more accessible to me.
The intricacies of timeshares are mind-boggling even for those with the clearest of minds: banking and point systems and lock-offs and a myriad of other procedures that just rattle around in the hollowness of my brain fog. Clueless, I let Steve sit on the phone for hours making the arrangements. This year, being our 50th wedding anniversary, we thought it was time to make the trek to Hawaii, especially since our two sons now live in LA, and we have our newly purchased snow-bird’s home (where we plan to stay from December to the end of April) in Tucson, where I might break up the trip and rest. Tracey and her children live on Kauai and spent two days with us, but Steve’s sister and the rest of her family didn’t come.
Carol decides to go for the big trip to Hawaii. As it gets closer and the worries mount, she wonders “What was I thinking?” and her health naturally takes a hit.
I wonder if other ME-ers share my particular insanity. I’m having a decent period (maybe 60-70 on the Karnofsky Performance scale). I take a deep breath and agree to the plan, thinking my family would be disappointed, and I have this grandson growing up on the west coast to whom I am a total stranger, and I rarely have the chance to be with my sons for any time longer than a day or two, and it’s Hawaii, for heaven’s sakes, and I adore my daughter-in-law. . .and so, okay, book the trip.
As it gets closer to D-Day, however, I feel the impact of what will be required of me, and the increasing anxiety and fretfulness causes my health to plummet. And then the regret starts. Why was I so foolish? Why didn’t I just insist that this trip would be too much for me?
I rarely cancel anymore. I just breathe and take whatever comes. And sometimes, maybe with an adrenaline surge, I rise to the occasion, as with this trip. I packed slowly, slowly, a little bit each day. We drove to Tucson (because we had to bring so much stuff for the new house). Actually, I should say Steve drove to Tucson; I sat in a near-coma with my head bobbling from about 8 am until we stopped at a Hampton Inn each night (decent free breakfasts). After five days we arrived at our new Tucson home, where I nestled into a comfortable sunny corner for another five days until our flight to Hawaii.
After six hours squashed into my seat on the plane dozing on and off during Wolverine and some absurdity about a kid named Percy Jackson who is the son of Poseidon, especially crappy movies with garbled sound, I found myself back in my wheelchair in the Oahu airport, where we boarded a shuttle to our time share at the beautiful Marriott Ko Olina and our children.
Frolicking and adventuring was out, quiet times by the pool and with the family were in.
Managing my energy was tricky and, at times, depressing. I didn’t explore Oahu or plane-hop to any of the other islands; I didn’t frolic in the lagoons or the many pools with their waterfalls and slides and caves; I didn’t join the walkers and joggers along the beautiful paths around the beaches or do laps in the lap lanes or join Steve in the well-appointed exercise room. I didn’t prepare dinners for everyone with my sons’ favorite foods. I had to nap in our room every afternoon while the others gathered at their cabana under the palm trees in the sun.
But I did get down on the floor with one-year-old Ira and bounce his ball back and forth, read to him, and make sure he didn’t stick his fingers into the electric sockets. I sat across from him at dinner as an adoring grandmother and watched him giggle and feed himself cheese sandwiches (most of which fell on the floor or in the pouch of his bib) and offer me slimy pieces of banana and mango. And, as the mother of two infants who each screamed his way through a colicky first year, I marveled at Ira’s good humor and friendliness as he sat smiling in his high chair in a restaurant for almost 2 hours, and at his joy splashing in the pool in his parents’ arms.
My sons Jack and Todd and Todd’s wife Holly are funny and witty and we laughed a lot. And Ira is a funny baby. I surprise myself by laughing and feeling that laughter relieve a despondency in my very core.
I also spent some peaceful hours lounging by the quiet reflection pool with a good book.
As usual, it’s a mixed experience. So difficult with increased awareness of loss, increased anxiety, and, at times, increased physical pain. And so lovely too.
I look forward to next Christmas in Hawaii. Sorta.
Carol,
That seems like a great thing that you did. Most especially, time with your grandson. I watch my sister and my brother who each have grandchildren, and they love the time with them so much, being well known people to those little ones. No replacement for that feeling, I suspect.
Congratulations on 50 years married, and having a second home in a warmer place closer to where your son lives. All of that sounds very good.
What you did not do, your list, did not stop others from enjoying, and you enjoyed some very precious time. I hope it is the start of a good new phase in your life, and thanks for sharing the holiday story.
I was driven to the local family Christmas event, over 40 people from three generations now, and it was good to see the now relocated nieces and nephews, and the next generation, and that one day wiped me out for longer than your week did, I am suspecting. At the holidays it is all relative(s).
Sarah
Thanks, Sarah, for your congratulations and good wishes. We’ve been especially grateful for our Tucson stay this year, with the ice, snow and frigid temperatures back east, along with reports of power outages and water main breaks in our home town.
I hope you’ve recovered from your day with the relatives. Sounds like a yearly event. How great it must be to have such a big family — though I imagine the big number of people must increase the difficulty for you.
Pardon me for thinking this, but when I first read the title of this blog I immediately thought “oh poor you….for getting to go to Hawaii…oh what suffering!!”. However, as I read through the blog I could relate 100% to the isolation of our illnesses, the pain & severe fatigue, and spouses that somehow do it all, day after day, AND are still married to us!! Congrats on 50 yrs of marriage, by the way!
I was immediately jealous and snide because I’ve been to Maui and so wish I could go back, but do not have the finances as I’m now on disability and also, I cannot imagine trying to travel via plane for that long of flight. Now as it is, I can only dream of Maui and try to remember the sound of the waves coming in and going out, time after time and all the unique smells the Hawaiin islands offer. However, my memories of that time are fading as that was back in ’93, over 20 yrs ago now. I guess in a way I am so jealous of your article and/or your life, because you have a timeshare in Hawaii, and a winter house in Tucson, where does the brilliant sunshine end for you? Please do not take this personally, as I mean NOT to be jealous of your circumstances and have pity for mine (being stuck in Nebraska mid-winter). Today, of all days, I am struck with a fibro flare due to the onset of a sinus infection I got from my husband AND a neverending change in the weather. So I guess I am in that disgusting self-pity mood and when I saw the email from Health Rising in my inbox with the blog title of “Christmas in Hawaii with ME” it actually upset me!!
But in the end, if you take away the finances and circumstances, I realized we are the same with our illnesses and my jealousy turned into compassion for you for suffering amongst the beauty of the islands and being so limited on what you could do. But thankfully you were able to reserve strength to be with your family when the time was right for YOU, and only you. I know all too well what that is like and as it is now, my immediate family and I are very distant as I do not believe they fully understand my condition yet and why I’m on disability (gee, I don’t look sick and I’m not on my deathbed!), which is maddening and sad at the same time because we are wasting precious time together!
Well, thank you for writing this blog. Please do not take my comments personally, I just wanted to express my frustrations with jealousy of others and being so limited right now on what I can do physically and financially. Were you ever in this type of position where you had jealousy for others? Thanks again!
Sent from my Verizon Wireless 4G LTE smartphone
Jealousy for others??!! Are you kidding? For the past 15 years Jealousy has been a constant companion. Maybe I can sneak away for a few minutes here and there, while I’m lost in a movie or a good book or an episode of “Breaking Bad”, but she always returns. I’m jealous of my wonderful husband, who runs and swims and hikes (and who, as you say, “does it all day, every day”; I’m jealous of my friends and their exciting trips to Antartica and Russia and their biking tours and their ability to do more than just one thing a day before they have to collapse back into bed; I was jealous of every single walker and runner and swimmer and surfer in Hawaii (not that I’d ever want to surf; I just want to be actively human). So, yeah, Jealousy doesn’t just drop by now and then; she’s moved in for good, it seems. A real pain in the ass.
A huge problem. (How could it not be?)
Toni Bernhardt recommends cultivating mudita – joy for others and what they can do. It took her quite a while she said; jealousy was one of her toughest challenges, but eventually she overcame it.
Hi Nancy,
Was reading the Christmas in Hawaii Blog and just wanted to share with you my birth place. You probably guessed, yes, I was born and raised in Nebr. I have resided in Northern Ca. for 32 years. Just curious of your hometown??? I also have my Maui stories, that we could share, if you feel up to it.
My best,
Penny
We travel about once a year by trading our timeshare too. If you ever want to stay in Orlando, I will trade you!!
I function on a very low level so our vacations have really changed. We go to a beach for a week. I will go out at some point for a couple of hours to sit and maybe get in the water a little. We don’t go out to eat much, usually hubby is going out to get dinner. But he needs the vacations and it does us good to get away from it all. I think it is worth the effort and it takes me weeks to pack too!
Like you, Cheryl, I make these trips mainly for my husband. Usually afterwards, I’m glad I went (as you say, a change of scenery helps) but then there are times I can’t wait to return home where I’m comfortable and know what to expect. It’s all so complicated.
I too spent a holiday week in Hawaii with family – my husband (of nearly 44 years), a son (our host) and his wife, 2 daughters (22 mos. and 3 1/2), and her parents – 8 in all in a large house. I too must limit what I do, and still mourn that at times; I am trying to focus on the things I still can do.
I think I am less physically limited than Carol, but I paced my activity as much as possible before leaving home, and scheduled a day between flights (first flight from our home to son’s home, the second flight was to Hawaii). In Hawaii I carefully chose what activities were most special to me to do, and what ones I should send others off to do while I rested (or napped with the grandkids). I was the last one up each morning and rested/napped most afternoons, but did manage some play-in-the-pool time with the little ones (such fun, lots of laughing and giggling), a little snorkeling, a short swim with dolphins (I have always wanted to do that!), and an evening snorkel trip to be in the water with manta rays (quite an experience!). My family wonderfully understands my limits; on the day I was supposed to be the cook, my daughter-in-law did it cheerfully, encouraging me to just enjoy the little ones (which I did!).
Sks
It was a very good trip from which I returned quite tired, but happy with my choices.
There are various ‘currencies’ in today’s world — so called civilization. One of them is money or personal wealth of whatever kind.
If we have very little money, we are poor.
But another kind of currency is energy. If we have very little energy, we are poor in a different way.
So if we have very little money and also very little energy, we are twice poor. A huge problem.
And for what it’s worth, there are other currencies too — personal influence by way of friendships and family connections and where we lived and went to school.
And time. At least people who are retired have time. It doesn’t make up for no energy, or no money. But younger folk who are still trying to work, they have no time either. That makes them three times poor?
We need to do something about all of this . . .
Very well expressed.
Another great article! I so look forward to reading what you write. I can relate so well to it. I want to go to Florida in March ( I am from NY) but if I get out locally once or twice I pay a price with such PEM I really don’t think I can do it. But my family doesn’t get it at all. I have been in the worst flare ever and I’ve been sick since 1990! As for the jealousy part, I experience it so often!
I am not jealous of you Carol; it is the healthy people who don’t get it it or those that are sick but don’t get it because they can do more. I was told by one such person that I should just push myself more–that’s what she does! Also, Anon I like what you wrote in your comments!
Oh, how I can relate!! We try to go to Maui every other year, I love it there! If I have to feel sick, it might as well be in Maui 🙂 We found a very affordable place where the condo’s pool is steps from the lanai. In the mornings I’m always weak, so I can make it to the lounge chair (30 steps from back door) and lay next to the pool, dozing and getting in and out of the pool. Then I nap in the afternoon, and then back to the pool, or the beach. Usually it takes 3 – 5 days to recover from traveling, so we now save up, and go for at least 2 weeks so I can get a few days in of a real vacation. Sometimes it’s 4-5 days before I have the strength to go to the beach, even though were talking a 3 minute walk. In the ocean water my pain and stiffness disappear, the humidity feels good and all the wonderful fragrances and melodic sounds of the birds are pure medicine for me. My family is very patient with me, and when I can go out to dinner with them or do a small bit of small snorkeling we are all very grateful for the experience. My dear husband does 90% of the cooking and shopping but in exchange he gets to play in the ocean all day. Sometimes I take my wheelchair, but I hate it. Some trips I’m miserable and weak and sick, and other times I can manage. We’ve now been there 6 times in 11 years. I remember for years when I was first sick I just assumed I would never, ever go anywhere let alone Hawaii. I’m very grateful for what I can do!!!
That’s pretty much how I feel: If I can just get there, I might as well be someplace pretty (and warm in the winter), if I have to feel sick!