Friday, April 8, 2011

There's No Place Like Home!


Home is a good place to be.

There is a lot packed into that little statement for me. I have always enjoyed being "home". Especially when I was working, it just seemed that there was never enough time to just "be home". In fact, I used to always say that if I were independently wealthy and did not have to work I would be just fine finding plenty of things to do at home. The creative side of me had a never ending list of (which I love doing), yard work, remodeling, baking, painting, writing, reading, running... the list goes on. Never enough hours in the day.

Becoming chronically ill has had an enormous impact on my "being home". For one, many of the things on my list of possibilities are, well, no longer possible. Two, other than getting out for doctor's appointments, hospitalizations and occasionally visiting family, I am pretty much stuck at home most days. Hour after hour, day after day, week after week, month after month, year after year. And this winter seemed especially long. So when we made the decision to visit family in Florida, I could hardly get my bag packed quick enough.

And then reality sets in, and one quickly realizes the mixed blessing of going on vacation. Travel, for anyone with a serious health condition, presents a number of difficulties and potential problems. The simple act of packing alone becomes a major endeavor. What would have taken me an afternoon to accomplish now takes me days. And the question of "what if" becomes more serious than just preparing for a rainy day. Two days of my packing were consumed with documenting all of my doctors, their names and addresses and emergency numbers. I then needed to come up with a complete list of all medications (including brand names and dosages - of which there are thirty-three different ones), signed release forms and a copy of my living will. Between the medical paperwork, reservation confirmation papers, airline tickets and car rental information - we almost needed to pack a two drawer filing cabinet just to go! Add to the mix my difficulty keeping track of things and general state of "fog" and this part of the preparation becomes quite stressful.

Once the paperwork was taken care of, I then needed to organize my actual medications. Not only did I need to plan out each days hourly "cocktail", I needed to plan for emergency situations. Pain medications, muscle relaxants, anti-nausea medications, Epinephrine injections, inhalers, emergency steroid injection packs, pancreas and GI medications, laxatives and antibiotics...just to name a few. These are all the medications that I do not take on a daily basis, but are needed when things act up or I have an allergic reaction. Which could happen when I eat something or get too much sun. I carried my luggage on the plane to avoid the ridiculous baggage fees. I wonder what the TSA people thought as my bag passed by for their viewing pleasure!

Eventually I got to the issue of clothing. Trying to pack for hot weather, yet making sure to not expose too much skin presented a few challenges. I did find a nice cotton long sleeve blouse that I had stored away years ago that became my daily cover-up. Most days I have difficulty keeping warm, so this worked out perfect. And at night, I just covered up in blankets and towels.

Probably most difficult of all are the actual days of travel. There were a couple of times this go around that I simply felt like traveling was not an option for me any more. I forget how much time I spend sitting or laying down while at home. If you think about it, once you make your way into the airport you are in a constant state of motion. Because I deal with extreme fatigue issues, simple tasks like pulling a suitcase or going through the TSA check point (lifting things on to the belt, taking off all your "stuff", gathering things all back up again) or walking half a mile to a gate are completely overwhelming. Once I reach that point of exhaustion, my ability to think clearly becomes significantly reduced. Keeping track of my ticket, driver's license, cell phone and everything else that needed to be emptied into a container became a task that left me right on the edge of panic. If these were the days when my children were younger, I truly believe that traveling in this way would not be a possibility for me. Thankfully, Dave and the kids were always one step ahead of me and there to help whenever I needed it. Often times offering before I even asked. I am so fortunate to have such a compassionate family. Where thinking of others is something that comes natural. Kids, I am so very proud of you!

Pure exhaustion.
And then there is the task of actually getting ON the airplane. When my butt finally hit the seat I felt like I had just completed mile 20 of Grandma's Marathon! Unfortunately, the welcomed relief that comes with finally sitting down and sitting still is soon interrupted by the pain and stiffness of rheumatoid arthritis. If there is one thing airplanes these days are NOT conducive to, it's moving. At all. Between the fact that the seats are now only six millimeters apart from each other and every flight is overbooked - and the fact that everyone brings their luggage on the plane to avoid the enormous baggage fees - there is absolutely no room to even wiggle your toes. The whole flight I was thinking, "Maybe I should take another baby aspirin, just to make sure I don't end up with a blood clot!"

By the time we made our connecting flights, landed in Tampa, picked up our rental car and found our way to the resort, I was, as my husband says, "On the brink of the edge!" Never has a hotel bed felt so good! From that point on, things became much easier. The resort that we stayed at was more like an apartment than a hotel room. So within a few hours Dave had gone to the grocery store and completely filled our cupboards and refrigerator with all sorts of good things to eat. We purposefully do not make "plans" while we are in Florida. Especially this time, since the priority was to spend time with Dave's sister Linda who is preparing for a stem cell transplant. This makes it much easier for me to listen to my body and rest when I need to. Our room was situated very close to the beach, so that made it easy for me to enjoy the ocean when I felt up to it. Most mornings I would walk down to the beach before the sun came up to drink my morning coffee. What a pleasure those moments were for me. Sitting there, sifting the sand through my hands, contemplating my place in this amazing world of ours. These moments were very inspirational for me and I am excited to write about some of them in the days ahead.

One of the things that made this vacation a success for me was my ability to let go of expectations. Last year when we brought the kids down to Florida I really struggled with being depressed. I think that somewhere in the back of my mind I had this unrealistic expectation that I would miraculously feel better once we arrived. It kind of reminded me of the first Christmas that I did not receive any toys as a kid. All excited and then somewhat let down by the reality of it all. Being grown up isn't as much fun as I thought it was. Well, being on vacation when you are sick is still "being sick". What I needed to do, and what I was successful at doing this time was letting go of what I had experienced in the past as well as letting go of what I expected the vacation to be. It really was a gift to me this year. I think I am finally reaching a certain level of consciousness. I am able to purposefully decide what kind of relationship I am having with the present moment. Do I want the present moment to be my friend or my enemy? The present moment is inseparable from life, so by being conscious in it, I allow myself to make the call as to what kind of relationship I want to have with it. The minute I make the decision to be friendly to the present moment - aware and thankful - my life changes. One little decision changes my entire reality.

J. Krishnamuriti was a great Indian philosopher and spiritual teacher. He spoke all over the world for more than 50 years attempting to convey through words this concept that is really "beyond words". At one of his talks towards the end of his life he surprised his audience by asking them if they wanted to know is secret to life. It is said that everyone became very excited and alert to finally  know this master's key to understanding. "This is my secret," he said. "I don't mind what happens." I'm sure that there are many people that did not understand this - maybe even more confused than they were before. And quite possibly you are thinking the same thing. But to me, this statement is SO profound. When I don't mind what happens, that means I am in total alignment with what "is". To be in a relationship with what "is" means to be in a relationship of inner nonresistance with what happens. It means to not label anything as good or bad, but to let it be. Of course, it does not mean I no longer take action to bring about change in my life. Quite the contrary. When the basis of my action is in alignment with the present moment, then my actions become empowered by the intelligence of reality - of Life itself. And making decisions based on reality are always much better for you than making decisions based on illusion.

"I don't mind what happens."
And you know what - it worked. Every day was a gift. I was much less stressed (stress is the leading cause of flare ups) and able to listen to what my body needed, based on the present moment. Not getting tangled up in what I thought I should be doing, or what my kids needed me to be doing, or what I felt my family expected from me. I listened to the moment and based my actions on what that moment was telling me. And fortunately, I have a family that supports that!

The kids resting in the shade with me.
Being able to rest while on vacation made the impending doom of traveling home much more tolerable. It was still as exhausting as getting there, but I am fairly confident that my ability to take care of myself is what kept me from getting sick along the way. I am still recovering - in fact, it's day three since I returned home - 4:30 in the afternoon on Friday - and I am still in my pajamas! And very thankful to be here. Funny how that is. Before going on vacation I was really beginning to wonder if maybe I had become depressed. Like maybe I should talk to my doctor about it. But things look so much different now. It helps that it's 60 degrees outside, my window is open and I can hear the birds singing. The inside of this house seems to have lost it's winter ambiance and adorned itself with the reflections and smells of Spring. I guess you can say that being away made me appreciate what I have. And according to this very moment in time...

I have everything I need.

I dedicate this post to my wonderful husband, who, by his unfailing love, endless patience and hard work made this vacation possible for me...and for all our kids. Thank you honey, for taking such good care of us.
I love you.

My husband, David.


Lyda said...

I love that you wrote this - mainly for the fact that nobody ever talks about this! It also reminds me that I need to update the card my husband keeps in his wallet that has all my medical information!

Theresa said...

I know! You don't think about it until you end up in the ER and need the information! And even then, you have to make sure they really understand what medications mix with what. Thank goodness for WONDERFUL HUSBANDS!!!

Anonymous said...

My dear, Theresa, I am so proud of you. I remember a conversation between you and Joel and me in the parking lot about a year and a half ago. I got the impression that you were looking out at this future way of seeing, and being in life, and you knew that you should move forward to that space. Tho' the hesitation to do so was palpable. I think that the series of events since that day provided that extra impetus to make the huge strides you have made since then. With all you have moved through, it would have been "easy" to choose a different response (you know what those quotes around "easy" mean, too :-). Congratulations for taking the significant risks to choose another way to move through each day. I already see your children changing too. They have adapted to your new way of being, and have been given the example of courage to create their own new way of being. Breathing, and sharing in a new way with you, Jeana.

Theresa said...

Jeana - that moment, that conversation has been ingrained into my memory forever. I can not tell you how many times I have thought back on that moment, or used it as an example of tough love and the lessons my friends have taught me. I've told it to my children, my husband, my friends, to people I have met that are struggling on a painful journey of their own. So many times that day has returned to me!
I did not realize what was happening during those difficult days. All I knew was that there had to be a better way. Little did I know that my friends were laying the foundation that I would need so that I would "know" the truth when I was finally awakened to it. I can not tell you how many times I read something or experience something and I think to myself, "I would not be able to comprehend this concept if it were not for what my friends have taught me". It's like I had my own little personal team of Yoda's! And now, your wisdom resonates within all that I do.
I am so very blessed by the people in my life. To know that you are part of me in this very moment, to think of growing old with you, to ponder all the moments to the greatest gift of all.
I love you so, so much.

Anonymous said...

Theresa, I enjoy your writtings they give me a good "pick me up". I also went to Florida for vacation with my family and found that it felt nice once there to "relax" and take in lifes pleasures. I am home now on day four and hurting real bad...frustrated wondering why am I feeling so rough after I had such a wonderful week...until I read your post. Thank you from one Lupus/Sjogrens suffer to another you inspire me to continue.
Becky Keefer ♥

Theresa said...

Like I said on facebook... we "rested" in Florida. I think we have a tendency to do too much once we are home. Giving ourselves permission is the first step. SO...I'll help you today. I hereby, under the authority vested in me by the Lupus Sufferers of the World, authorize you complete and unabashed REST! Free from all regret and worry, to be used in any given moment for the health and well-being of said receive-ee!

Have a wonderful day!! ;-)

Jennifer said...

We're gearing up for a cross-country trip with two kids and AS. Haha.

I have to admit some worry about the traveling and the time there as well, and yet I am looking forward to it and want to go into it with a new perspective than I had last time I traveled.

I'm getting better at letting things just be and not trying to control everything. I'm getting better at understanding how much my judgment on a situation (this is going to a hard day, etc...) influences that situation.

I really do appreciate you writing about this.