How To Travel With A Chronic Illness. Lyme Disease and Self-Care

sydney-opera-houseTraveling with Lyme Disease or any Chronic or Auto-immune Disorder can be a challenge for sure and sometimes down right difficult. There are some self-care tricks that I have gained along the way, the first of these being that if I don’t take care of myself the bugs win. Being the competitive person that I am I have no intention of letting these creatures win at anything.

For over twenty-two years I have said “no” to my husband. Every year the topic came up and every year I squashed it. The thought of being in a plane for twelve hours at a time sends chills down my spine and flips my stomach upside down. Yet I know in my heart of hearts that this marriage thing is a partnership and sometimes we must do the one thing that we think we can not and for me it is getting on a plane calmly and enjoying the ride for twelve long hours.

It truly has never been on my bucket list to go to a place that is called “down under” the name alone freaks me out. Then its all that water that has to be flown over, that….makes me want to throw up even as I write this. Yes, I understand it is a beautiful place. Yes, I know that I will undoubtedly love it. Yes, it will be very cool to meet family members that I have never met before. I get it but tell my stomach that, it doesn’t seem to be listening to me.

THE BUDGET

Anyway, one year ago I said “yes” and then the budgeting began. So we or shall I say “I” finally committed to this trip and now I had to make sure it would happen. As in any goal you must be able to have the end in mind. The end in this case was the available funds just laying around waiting to be spent. We first researched the time of year so we had an idea of what the flights were going to cost. We then looked at what Sydney and the surrounding areas had to offer and decided what we wanted to do during our stay that would require additional funding. One thing I hate is to go on a trip and be out of money. I have done that before and trust me, it ain’t any fun.

So with all of this information in hand we set up a monthly amount of money to transfer out of our regular account so it could not be spent…by accident of course. I wanted these funds to be unreachable or at least out of our same banking institution so that we would not get tempted. What I found was an American Express Serve card. This is a prepaid card, one that you load up and can spend anywhere that accepts American Express and also can be used at ATM machines everywhere that we have traveled.

The American Express Serve card comes with a one dollar a month fee so although my yearly fee was fifty-two dollars I still feel like this saved me at least an argument or two with my husband and that alone is at least worth the money. It also was great to see the balance rise so quickly and we knew exactly the date we could purchase the tickets. What a day that was!

THE ROUTE

Traveling with Lyme Disease comes with some restrictions so although there are places that we would have liked to stop along the way to Sydney I had to listen to the doctors and change the route. What we ended up with was a trip around the world! That was the coolest thing and it happened all by accident (or good karma). We leave from Warsaw, Poland to Dubai. A few nights rest in Dubai before heading to Sydney (the land down under). We will be with family for a month and will do a side trip up the coast to break it up before heading to Auckland, New Zealand for a week. After unwinding from family (you know how that can be and I don’t even know them) we head off to Los Angeles to travel to the San Diego area for some grand children hugs for a few weeks before heading back to Warsaw, Poland.

TRAVELING WITH LYME DISEASE

I look at traveling with Lyme Disease as though I have a constant back pack on. It is something that you get tired of and it is annoying like an itch that won’t go away. I have to pack all my supplements and tinctures. My tinctures are all organic and live so they can not go through an x-ray machine and must be wrapped in aluminum foil. Yup, you guessed it, going through security can be challenging and time consuming so we have to be at the airport earlier. Always!

With Lyme Disease comes the thickening of your blood. Which if you think about that and flying it is a perfect scenario for a blood clot. That freaks me out. So, I have to make sure that all my blood tests are up to date and that all the doctors know where I am going, how long I am flying and what other supplements, drugs or tinctures I am on. This time because of the length of the flight I will have to inject heparin (a blood thinner) into my abdomen at least two hours before each flight. And you know what that means, I have to bring needles on the plane with little bottles of the drug. I have a special signed note from the doctor about these needles and drugs however it is in Polish so I am not sure how well this will serve me once I leave Poland.

Food is another challenging department for we Lymies. Because these creatures or spirochetes as they are really called love wet, dark, moist places and you have to make sure the food you are eating is not also feeding them. So I am always thinking about what I can eat that is good for me but bad for them. Gluten free meals have to be ordered on every flight and I always make sure to bring bags of nuts, rice cakes, corn chips, special protein bars or some other munchies just in case.

Next is making sure to let everyone know that I have Lyme Disease. Some days I may be fine and others I can be flat out crying, curled up in a ball on the bed. Self-care is a must. I now know that my life revolves around four hour increments. Once I let everyone know then we can plan our day accordingly without much interruption. Its when you are embarrassed or don’t want to imposition someone by telling them about Lyme Disease that you get into trouble. Trust me…I’ve been there and it’s not pretty.

These four hour increments are the times when I can be visiting some place, hiking (not in the woods there are bugs in there), biking, swimming, dining or just chatting. If I go beyond this four hours I am walking on ice. Once my energy reservoir has been used up my body begins to shut down, my head gets foggy, my eyes begin to see double, I get dizzy and then I lose concentration and can no longer keep up with the conversation. The only thing to do is to lay down in a quiet place as noises begin to send splinters into my ears. It’s not pleasant for anyone because I never know when this will happen. It’s like a wall shows up in front of me that I can not pass and everything is dark. Not a happy time I will tell you.

After my four hours is up then it is quiet time. Generally that means me behind closed doors, wrapped up warm (bugs hate your body temperature warm), lights off, cell phone off and down for as along as it takes. Some days that can be twenty minutes other days two hours. That is the frustrating part for your spouse, friends, family or travel partners. There is a lot of sitting around and waiting.

Self-care is the only way around this. Sure I get mad that I am not able to do what I once could. Yes it is frustrating for the people around me because when this wall comes up I have no control over my being. So as we plan this trip around the world and these long flights my husband and I have had to discuss what all this look like and what I can do to make sure that everything goes as smoothly as possible.

PACKING

We actually planned this trip pretty well because everywhere we will be traveling to the temperature should be hovering right around seventy-five to eighty degrees. My words of wisdom in packing is “less is better.” Flip flops, bathing suit, cover-up, jeans, a few tops, one nice outfit; that about sums it up. If I need it, I will buy it. Other than that I don’t want to lug it around with me. Again, with Lyme Disease I have enough on my plate rather than worrying about my luggage. It’s just a choice I make. Sure I may not look as cute as some other people but I can assure you I am a lot more comfortable.

Jewelry, almost none. I pack a few different earrings, a bracelet or two, maybe another ring, a watch and there you have it. It’s not worth worrying about anything being stolen or misplaced.

Make-up, well there is a topic that although I have my make-up and skin care down to a science I make sure I take it all. Feeling like crap some days because of the Lyme Disease and then looking bad on top of it is definitely a downer so the make-up comes! Discussion ended.

That’s it in a nutshell (a rather large one I might add) how to travel the world with bugs. Tiring? Yes. Exhilarating? yes. Worth it all? yes. I don’t want to go through life saying “woulda” “shoulda” “coulda” by using Lyme Disease as an excuse for living small. Do I get scared, absolutely but that is not going to keep me locked up in the house. Traveling has taught me so much about myself. Every day is a new experience, a new food, a new word, a new way to get some place and see something. Lyme Disease forced me into movement. It forced me into not taking life for granted. It forced me to see beyond my fears.

So whatever it is for you. Whatever it is that is holding you back from being all that you can be or doing all that you want to do, look inside, look  deep inside to find what is it that is holding you back. Recognize it, thank it for doing its job, and gracefully release it. There is a whole new world out there just waiting for you to show up.

originally posted December 16, 2015 (ourlifein50pounds.blogspot.com)

Leave a Reply

Your email address will not be published. Required fields are marked *