Tips for travelling with lupus

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As exciting as travelling to new places can be, for me it’s terrifying.   As I will continue to discuss in further posts food, sleep, and stress all matter.  They are all things that accompany travel and are coincidentally the same things that will bring on a lupus flare.  Does that mean it’s better to just stay home? No, of course not. But it will take some planning to stay ahead of the game and be prepared.  I fought this for a long time, because I refused to believe that I was sick.  I wasn’t going to let it change my life.  This disease was going to simply fall in to my regular life and not change anything.  Jokes on me, apparently the disease is stronger than I am in some ways.  I had to make changes to the way I do things.  It’s not as difficult as I thought it would be and it saves me, and therefore my travel companions, so much grief.  Here are just a few things I do when I travel.  I hope they help you.

 

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Food.

I cannot eat airport food and definitely not fast food.  Planning ahead makes my trip so much better. I make fruit leather and banana donuts for my sweets.  I cut up fresh fruit, and veggies that travel well.  I cook chicken breast or thighs and I will even take deli meat if I have to.  I try not to use deli meat as a go to but in a pinch it will work fine.  Water, water and more water.   If flying buy a couple of litres after you get through security.  I don’t tend to buy water in bottles, the thought of the plastic leaching in to my water freaks me out, but for a flight every once in a while it’s not too tragic.  Some places have water stations so I always bring my favourite container just in case.

Sunglasses.

The direct sun gives me migraines and strangely even without the migraine it makes me angry.  I mean really intolerable to be with.  My Dr tells me it’s photosensitivity.  It’s really one of my favourite symptoms.  I mean who doesn’t hate sunshine and all things bright and happy.  UGH.  I love the sun.  So sunglasses are a must.  I have a pair in my purse and my luggage in case a pair gets lost.  I always have them in the car.  I love the sun so much but it bothers my lupus.  I guess the bright side (see what I did there?) is that you cannot go cheap when it comes to photosensitivity from lupus and sunglasses.  “I am sorry husband no, the Dollarama will not work, but those Ray Bans are perfect”.

Sunscreen.

It’s a must.  What’s not a must?  Chemicals.  I use natural sunscreens.  Our skin is the largest organ we have.  If you slather yourself in harsh chemicals you absorb them in to your blood stream at a phenomenally fast rate and it’s one more thing you have to filter out of your system.  That’s just more work for our poor bodies already struggling with lupus.  There is no need to make it work that much harder.

Magnesium.

I travel with Natural Calm magnesium individual packages.  I am neither a Doctor nor a nutritionist, or anything of the like, I am simply stating what works for me.  Natural Calm is a natural anti-stress drink.  After I am seated on the plane, train or automobile and comfy, I ask for hot water and enjoy a package right away to remain as stress free as possible.  I recommend not asking your husband for the hot water as soon as you are settled in and off on your road trip.  It didn’t go over well.  I bring the hot water in my little thermos and toss a package in as soon as we are on the road.  Trust me, he appreciates the calming mood change.

Essential oils.

I love my oils.  I am a doTERRA fan(atic) myself.  I only say fanatic because if you saw my ginormous oil purse I am sure you would think the same thing.  I always bring peppermint, wild orange, breath and serenity with me on the plane.  Put one drop in each hand and mix them by rubbing your hands together and then simply breath them in.  It’s amazing.  I find it incredibly soothing.  You can also place a small drop of (edible grade only please) peppermint on the roof of your mouth. That can help stave off nausea and motion sickness which for me is a problem because of my lupus.  I find it also keeps me calm.  I always bring a small travel diffuser and use it my hotel room at night. aroma-906137_1920

Eye pillow.

When I get the chance to lay down I have a lavender filled eye pillow that I take everywhere with me. I like the gentle weight on my eyes.  It’s soothing and the lavender is calming

Large wrap/cape.

I don’t like being cold but as everyone knows you don’t always have all the room in the world to be taking a sweater on and off.  And my joints can hurt making it even harder.  So I bring my big wrap/cape.  It goes over my shoulders and I can also wrap it around my head to cut out noise.  That can make me feel as though there are fewer people around me.  Occasionally I prefer a quieter space and that isn’t always physically possible but there is no reason that I can’t create the illusion

Meditation.

Any device with guided meditations or calming music works really well for plane or train travel.  I like to pull my wrap over my head and listen to a meditation, breath in my oils, and drink my tea.  All of it calms me right down and helps me focus on relaxing and getting into vacation mode.  It recharges me as usually by the time it’s vacation time, we are often depleted of energy.  So these tips can help whether you leave the house or not.  I know it sounds a little earthy crunchy, tree huggery, and out there, but try it.  I assure you, you won’t believe the difference it makes for your travels or just relaxation time.

Audio books.

My eyes are affected by my lupus in that they get really tired which brings on a migraine.  Reading stresses my eyes especially when I am already hyper sensitive or over stimulated by travelling.  Audio books help me pass the time and allow me to close my eyes and just enjoy the ride.

draw-2103019_1920Colouring.

If your eyes are okay and you want to do something to keep you busy but not stress yourself out, colour.  You would be amazed at how good it feels to get back to your childhood and just colour.  The time passes and you have barely noticed anything around you like crying babies, coughing neighbours, or the feet of the person behind you tapping at your behind.  You can buy adult colouring books (and that includes real adult ones with swear words and everything) or you print pages off line for free.  You could even try Zentangling.  It’s professional doodling.  If you were good at it in that boring meeting, trust me you will become addicted.

Warm comfortable socks.

Slipping out of your shoes after being on your feet in the airport for hours feels great.  But bare feet on the floor of a plane does not.  I love slipping into my “reading socks” they are advertised as.  I bring the comforts of home with me everywhere I can.

Earplugs.

While they don’t block out all noise, they sure do dampen the ambient sounds.  Sometimes we can suffer with irregular sleep patterns because of Lupus so I can need sleep when others are awake.  Planes are no different. Half the plane is asleep, half is wide awake.  The ear plugs help me forget that anyone is there

Medication(s)

I try my best to not take pain medication because it contributes to leaky gut.  Leaky gut is what some believe causes auto immune disease in the fist place.  (More about that big link in another post soon).  While travelling, with that kind of stress on your body, why put yourself through more than you have to?  Bring some pain relief and maybe some anti-nausea medication.  Again, the oils really help me but occasionally I need a little more.

Tea

I bring along my favourite teas. The small comforts of home help anywhere they can.

Kalaya (MUST HAVE!)

This natural pain reliever is a real gem.  I use it on my neck when I travel.  It helps to relieve tension almost instantly.  It’s a natural form of RUB-A535 (another chemical nightmare that I personally wouldn’t touch to my skin).

Heating pad.

If you have the room in your suitcase a heating pad if a great idea incase you do have a flair while away.  It doesn’t take up much room and you will be so thankful to have it if you need it.  If you must, take 2 suitcases.  Then you have room for more fabulous clothes and your must have heating pad.  It’s a win win for everyone.

Room type.

I try to reserve rooms that have a kitchen.  Going back to the importance of food, I do not function well after eating out.  Food has a huge effect on me, especially if there are hidden ingredients that cause a flair.  At least with a kitchen some of my meals can be spot on.  I can at least prepare snacks for the day.  Breakfast can be started off well if I have some control over the ingredients.  If I am really lucky I can make a lunch for myself as well.  The more control I can have over what goes into my body the better for all.

Lacrosse ball.

Look it up, it’s a thing.  For both the sport and sore muscles.  When my muscles tense or knot up from travel I roll on the ball.  Sitting up against a wall (or lay on the floor if you can handle that much pressure) put the ball under you.  Roll back and forth over the tight areas.  Instant relief!  You will feel the fresh blood rush in to that area right away and the pain lifts so quickly.

FUNNY TRAVEL STORY

There is a take away to this little anecdote.

I worry about many things before I travel and one of those worries are bugs?  I HATE bugs. A mild phobia turned into all out irrational terror for me after I became ill.  It seems like all my previous anxieties became compounded with lupus and remember stress (of any kind) can bring on a flare.

On a recent trip to Hawaii we decided to try an AirBnB home.  It was wonderful.  At first. It backed on to what appeared to be a jungle.  There were the most beautiful birds and the snails were the size of my fist (and not a bug, snails are not bugs).  The sounds coming from this glorious place were so enchanting and peaceful.  I was very excited to stay here for a week.

 

My daughter and I hurriedly unpacked and went to put on our bathing suits on to head to the pool.  As I was in the bathroom my daughter shouts, “Mom, Mom, don’t come out!”  As you can imagine I immediately began to panic. “Whats wrong?”, I asked. “Mom, it’s a HUGE spider but it’s ok.  Dad got rid of it”.

Phew, ok.  Being Canadian and from the Province of Ontario, our huge spiders are not terribly huge.  We have daddy-long-leg spiders and they are as big as I have seen.  Thank goodness that’s what I had pictured in my head.  Tragedy averted, we headed to the pool for the afternoon.  Later in the evening I was sitting on the sofa folding laundry and out of the corner of my eye I see this HUGE black spot on the ceiling.  There it was.  The spider.

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This was no daddy-long-legs, this was a small animal!   His body was the size of a Canadian tooney (an American half dollar coin).  And the legs, they spanned 6 inches.  I kid you not. Turns out my husband didn’t get rid of the spider he just chased it behind a bookcase so I didn’t see it!   It took awhile but I finally calmed down and went to take a shower.  When went to the bathroom and threw on the light there was a cockroach staring at me the size of a mouse!

That was it, there was no way I was staying there.  With lupus, comes anxiety.  I already didn’t like bugs before Lupus, after Lupus it became all encompassing terror.  I don’t know the medical reason why but I know that it has been something I have battled since the onset of all my other symptoms.  At this point my anxiety went in to overdrive.  I was standing on the bed at 12am crying like a 3 year old that couldn’t catch their breath.  By 2am and with no signs of me calming down my husband (not very happily) packed up our clothes.  I woke up my daughter who apparently shares none of my bug anxiety for the soundness of her sleep and put her in the car.  In the middle of the dark of night, in a strange foreign place, we travelled the island looking for a hotel for the night.

The point of me sharing this embarassing story is just to let you know that there can be strange symptoms with Lupus.   If you have weird anxieties or unusual fears that are new, or maybe old and now worse, just work with them and do your reasearch.  Not only about the anxieties of course but about where you are travelling to.  Will you be triggered in the travelling or once there?  How about where you stay?  Will it be too crowded, or not enough people and too remote?  Do a little more research than we did and take every single symptom you have seriously in that it can and might impact your trip.  If you need to stay in larger hotels where they look after the farm animals for you and don’t leave it up to your husband who thinks the book shelf is good enough.  Note to all husbands, IT’S NOT!  That one incident, that night, cost us a fortune.  We had to forfeit the week we paid for at the house, and then pay for a hotel for a week.  And it cost me greatly personally.  The stress, guilt and shame brought on a flare up and I couldn’t walk, or even stand for two days.  There I was in a place I love more than anywhere I’ve travelled before, my beloved Hawaii, and I had to stay bed ridden for two days watching TV with the blinds drawn as my husband and daughter played at the beach.  Lesson learned.  I am no longer the adventurous take me backpacking in the wild type of person.  I was before I got sick and in my mind I still am. But at least for now in this new reality I will most likely end up in the middle of the bed bawling without being able to catch my breath if I step too far into the adventure without caution.  Sometimes it just isn’t worth fighting the new me for she can be strong. So for now I will stay with resorts I know and trust in a room with a little kitchenette.

To this day my husband still doesn’t really understand what happened in Hawaii and why my anxiety was so high.  And that’s okay he doesn’t have to.  He respects me, he supports me.  High maitenance?  Perhaps.  Dave and I have had many discussions about that as well but that’s another post for another day.

 

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