I have traveled numerous times in the last two years…packing, navigating airports and security check points have become like second nature to me..I even think the TSA workers at our local airport are recognizing me when I walk through…so WHY is it that as I prepare for another trip this Sunday that I am having a crazy amount of anxiety? I seriously do not have room for this anxiety in my carry-on…the zipper will be busting at the seams as it is!
So I will tell you where all of this nervous energy is coming from, it will be the FIRST time that I’m traveling with out my husband! No, not just because he’s my best friend and I will miss him terribly ( which I will, and I’m teary eyed already) but because he is also my assistive device. While lupus effects each of us differently, Im sure most of us can relate to the days where walking is difficult, let alone, walking up a flight of stairs or on some days..just two stairs can look like Mt. Everest. Sure I own a cane, I caved and purchased one before we married and admittedly used it only three times because of the stares I received as I popped it out of my brief case to make the long hike through a parking lot into the office I was there to visit…I felt those eyes saying ” girl, whats wrong with you, you look fine, see now you are inside and you don’t need that cane to stand, there’s nothing wrong with you” So the cane ( and its pretty ugly ) has been sitting in my closet for over a year now. Shall I bring it out of retirement.
This upcoming trip will be spent with my two teenage sons and some extended family members. My boys are very understanding and supportive of my disease , but I have protected them from what the full effects of it have been on me. They have seen me grimace in pain some, heard me ask for help getting out of the bleachers with no rail provided, known days where I have spent my time on the couch… but they have not ever had to be my care takers. That is my anxiety! I do not want my teenage boys to have the burden of making sure mom is keeping up with everyone. You see, my husband protects me in ways I can’t even describe, he anticipates my needs sometimes before I even see them myself . If there is a set of stairs ( even that imaginary Mount Everest ) he is always right next to me grabbing my hand and keeping his arm stiff to allow my weight to be carried by his while nobody else could even tell that I was struggling …he protects my dignity by never once making me ask for help or to say I can’t do something. I guess you could say I am spoiled in more ways than one!
So today as I was going over my normal to-do list before a long trip, I decided to take this anxiety and get it figured out. I didn’t know just a whole lot about handicap permits ect, as I just received mine two months ago and have only used it a hand full of times, so it was very important for me to call and ask these questions ahead of time. Here are some things I learned that might be able to help you.
- Pack your assistive device- canes, walkers, crutches, wheelchair…whatever you use, take it and leave your shame at home!
- Take your handicap parking placard with you to place in your rental car and also to show (if needed) at tourist sites for easier access points in to lines. There is often a separate line for handicap so we won’t have to be in the heat as long, and yes that matters. That heat is what wears us out and when we will need more help than usual.
- When checking in at your hotel you can request a room either on the ground floor or closest to the elevator…every tourist has some amount of fatigue after exploring their destination for a day…but we lupus warriors have a level of fatigue we can’t describe and often I have worried that my legs just wouldn’t get me back to my room.
- Call ahead to your hotel and ask about a first aid office and/or local ER or walk-in clinic that would be available if you needed it.
I will say again, leave your shame and your pride at home! Ask for help if you need it and if possible, find someone in your group that you can ask to help watch out for you. This is one of those occasions where the whole ” invisible illness” makes it hard to ask for help, use handicap permit, etc..people judge, people stare…but guess what , those people won’t be helping you carry your luggage or holding your hand up those stairs! And with all of that information I was able to take most of that anxiety and unpack it. Probably not my most interesting or informative blog so thanks for hanging in there and reading all the way through..if it helps one other person it was worth it!
As always, wishing you plenty of spoons,
Meredith, The traveling lupus warrior
Let me take a few minutes to introduce myself to you. I am a 34 year old woman who was diagnosed with Systemic Lupus and Antiphospholipid syndrome after waking up one morning in September of 2014 with total numbness down my right side, extreme fatigue and confusion. Like most patients with invisible illness/autoimmune disease, my quest for a diagnosis was not quick or easy. I went through several different symptom stages, flares, doctors who couldn't figure it out, doctors who wrote me off as being stressed, and even family members who tried to chalk it up to stress. Frustrating is the word that comes to mind, or shall I say, frustrating is just the tip of the iceberg of emotions . I am a nurse, mother of three fabulous children, and the wife of an amazing man who is my rock, my sanity, my comedian, and my cheerleader. Every day is a struggle, a choice , and a gift. I will be completely honest with everyone and say that I have gone through various stages of emotions since that morning, often repeating stages, and I want my fellow lupus warriors to know that its okay to cycle through emotions. I decided to start a blog when I became vocal about my illness to friends, co-workers, and on social media...several people reached out to me and suggested a blog and told me how much it was helping them to hear from me. So the big question was..what on earth could I blog about concerning lupus that there wasn't already an article out there? The smaller question was , do I want to focus my energy on the negative mundane lupus topics such as flares, medications, pain, effects of chronic illness on your family? No, I don't want to focus on all of those things, I want to help, I want to get back in the swing of life enjoying everything and every second regardless of my disease, and I want to help you do the same.
My husband and I love to travel and we do it often. This past December we went to The Bahamas and stayed at The Ocean Club, I went on and on to him about how fabulous the hair dryer was because it was so light that I could actually tolerate holding my arms up long enough and yet it dried my hair quickly and without frizz ( ladies, don't we all agree that hotel toiletries and accommodations are a big deal?!) When we were getting ready on our last night there, my husband said you should keep up with all of the different hair dryers we have when we travel and write about it...hmmmm good idea! So how does my hair dryer finding lead me to lupus friendly travels you ask, because we all want to enjoy our travels and we all want good hair and good skin and the ability to do the activities planned for our trip...but it effects the lupus patient so differently than others. So join me in our travels and in all of the things and places that we find who make for Lupus Friendly Travels! Lets get packing...