Lupus and Travel

I recently made a vow with myself to stop sleeping with my Ipad and cell phone on my nightstand. It all started with these scenarios that maybe you are familiar with as well:

  • you wake up to find out (always weeks later) that you responded to multiple texts *while sleeping- not that you will remember sleep-confirming to that birthday party.
  • and/or looked at your messages to fall back asleep and never acknowledge the text message again. Sorry I never responded… 
  • and/or look at your messages and become in a state of panic/anxiety because WHY DID I NEED TO CHECK MY WORK E-MAIL IN THE MIDDLE OF THE NIGHT?

It’s a sickness, an absolute addiction, and sickness that many of us suffer from… or am I alone on this one? Please tell me I’m not alone on this on.

In an effort to end example un,du, and trois above, I have relocated my drug of choice (just to be clear I’m talking about an Ipad and cell phone…) to across the room and I have made sure they are on silent. Best part about it?

  • No more sleep-texting 
  • No more reading/sleep ignoring
  • No more middle of the night technology induced anxiety

and my personal favorite part- waking up to social media alerts. I’m such a sucker for a good message and waking up to a question from a reader, known as a.r., made my whole morning:

I came across your blog when I googled something like “birthright Israel with chronic disease”, so I have to ask, were you able to do everything? Did they let you sit out if you couldn’t?

I have a type of arthritis and I’ve been putting off birthright for a while now. I’m not in remission but I’m pretty stable at the moment, and I’ve traveled quite a bit. but group trips make me nervous – i’m not “out” (no one really knows I have arthritis), and I’m worried about things like the hiking (mostly Masada), and other activities. Like you mentioned in one of your posts, the fatigue hits me too. Did you find them accommodating to you? Were you able to participate in everything?

thanks 🙂

Riddle me this:

HOW IN MY ONE YEAR OF BLOGGING HAVE I NOT MADE A POST ABOUT TRAVELING WITH A CHRONIC ILLNESS?

Answer: I’m really not sure. So, here I am to address A.R. and their question!

Dear A.R.,

Let me start off by thanking you for your thoughtful question and I hope I can help to ease some of your concerns. I’m thrilled to see that you love to travel- life can seem overwhelming when living with a chronic disease. I’m not here to sugarcoat life with a disease either- I started to write a response and I erased an entire paragraph… did I really just say “now I live my life to the fullest.” That’s half true and half untrue. I wish I did not have a disease that can feel debilitating and limiting- no laying out in the sun, no staying up to all hours, if I do too much activity, I might have a flare. blah blah blah. There is no easy way to say it, but let’s be real- that sucks. I remember when travel was a thoughtless process and I took my health for granted. Now I have to travel smart:

  • Do I have my medicine?
  • Am I able to get my medicine if I forget it?
  • Do I have insurance that will cover overseas expenses if necessary?
  • What if I get sick?

I have asked these questions to myself each time I plan for another trip as I’m sure is the reality for many living with an illness. But! I still travel. And! I now appreciate the fact that I am breathing, walking, living, and fortunate enough to experience this amazing world. Know thyself, right? Meaning, I have learned my limits while still appreciating what the world has to offer- especially Israel, a place that I too pushed off for far too long.

Israel is bikram studio level hot- for those of you that don’t speak sweat, I’m talking 105 degrees hot. And the sun is excruciatingly sunny (I couldn’t think of a better description, deal with it), no hyperbole. I would love to think of more similes to further explain the sun to heat ratio but I think you get the picture. And to do some basic math for you: 

Lupus + Sun = ughhhhhhhhh*

http://www.lupus.org/answers/entry/how-lupus-affects-skin

So I packed a ton of sun block. Like two extra bottles worth. And I crossed my fingers and hoped for the best. And on a few occasions when we sat by a pool, I sat in a shaded area. That’s the reality of my disease. We also did more physical activity on extremely limited amounts of sleep every.single.day. BUT I love being active. I can see Israel being a very challenging trip for a person that is inactive. I know it can be difficult for a person living with pain to workout, believe me, I experience lupus as though I have rheumatoid arthritis. There are times making a fist is excruciating and on most days a dull ache in my joints is the norm. I would never suggest pushing yourself past your comfort zone, but I started to run after I found out that I was no longer in remission. I am a firm believer in living to the best of my ability and since I refuse to give up deliciously scrumptious foods, it was time to become active. Better now than never. Now, if you cannot participate in all activities, that’s fine too. There are additional people on the trips to be there for those that cannot do it all- a friend with severe asthma made the decision to meet us at the top of Masada by cable car (they have those!). At the end of the hike to the top we were given the option to take the cable car to the bottom or to hike to the bottom:

IMG_1821

I chose to hike to the bottom. And my legs were shaking, and I felt invincible. But I did it because I knew that I was physically able to- it was my choice. If I had felt sick or fatigued I would have chosen to take the cable car. Having the option made me feel safer as well.

Finally, I remember the feeling of not wanting people to know that I have a chronic illness- are they going to judge me? pity me? be overly cautious with me? pay any attention to me? I didn’t want any of that, particularly those sad, pitying, you have a disease, eyes. Please, not those! That being said, not sharing your illness with others is your choice, but it’s truly important that before you go on any big trip you let the travel organization know. Initially I was furious that they made me receive approval from my rheumatologist- am I a child, Israel? I’ve been dealing with this for ten years. But I get it- Not only is it their liability if something were to happen to you, but even more important is your health, well-being, and safety, and they can’t provide that for you if they don’t know what you may or may not need. 

I want to be loud and clear: My biggest regret in life would be to stop living for a disease that could kill me. Instead I believe in living smart. Emphasis on living. Because, in the words of Socrates-

The unexamined life is not worth living

 

 

ughhhhhhhhh* – fatigue, soreness, swelling, skin rashes

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7 thoughts on “Lupus and Travel

  1. I’m the complete opposite. I hardly ever check my texts. Even when I’m awake. It drives my friends and family crazy when it takes me all day to reply to texts. I also never check work emails when I am at home. I do check personal emails of course but I’ll never reply while in bed. No one needs to know what crazy hours I keep.

    I was diagnosed with an auto immune disease at the start of the year and I haven’t traveled anywhere since diagnosis. Thanks for this post. It’s definitely something to think about next time I travel. One of the symptoms of my disease is heat intolerance. I don’t know if it is the same with Lupus, but if it’s kind of warm for everyone else, I will be feeling uncomfortably overheated and you’ll find me fanning myself or trying to find the nearest window or sitting by a fan or air con.

    Feeling lethargic can be difficult when you are traveling and I guess the best thing is to plan for days off and time out or not to pack too much into one day. Hard to do when time is limited, I know!

    I’ve been told it’s a good idea to bring a letter from your doctor if you are traveling with medication too. You never know what drugs might be restricted in certain countries.

    • I also despise text messaging….those tiny little buttons leave so much room for typos. I hate it! There are times that I’m completely off the map because I will totally ignore of phone for days if I can. BUT if it rings next to my head, I’m going to check it. Even in my sleep 😉

      I’m so happy that you read this and it can allow you to think about traveling in the future. I know having an auto immune disease can be mentally and physically crippling, but you can’t allow a disease to define you. Or it will. I’m sorry about the heat intolerance because I’m sure that’s miserable – the main reason I avoid Florida entirely. With lupus it’s a sun intolerance. Exposure to sun can lead to rashes and lesions and possibly a flare. I generally feel extremely fatigued for days and joint and muscle soreness. When I travel I take my limit into consideration. If I were you I would choose a trip that gives the joys of travel without extreme temperatures. One place I’m dying to travel to is Alaska, I hear its beautiful and the climate is moderate. When I travel I also make sure to build in on / off days like you mentioned so I don’t overexert myself.

  2. i must confess i subscribed to comments on the post I commented on and eagerly waited for your response… I never got an email about so I came back to your blog to check for myself, and saw this post 🙂

    Well, thanks!

    I would say I am fairly active, and I am a pretty experienced traveller, but the intenseness of this type of trip coupled with the heat, I’m not sure if I will be able to keep up (guess I won’t know till I’m there!)
    I applied for a December trip since I hate the heat in general, so I know it’ll be a little more bearable in the winter time.

    My interview is tomorrow – I have every intention of telling the birthright people about my illness, but i was more concerned about if I was unable to do something, they would tell me I had to, or I wouldnt be able to sit out of something that I really feel unable to do. I’m usually ok with a lack of sleep, and I try to keep up, especially when travelling since it is only a short amount of time. I just worry a lot. *especially about sharing that I have a chronic disease like arthritis, like I said, even most of my friends don’t know (including the friend i applied for birthright with). I don’t want to be judged, but more than that I don’t want people assuming I can’t do something before I am able to make that decision on my own.

    My friend went and told me she actually cried during/after Masada (on the way down), so hearing stuff like that isn’t so encouraging 🙂

    oh look at that, I wrote a story…

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