Traveling with a Chronic Illness

Let me start with saying this: I am very open about my MS. I understand and respect those who keep their struggle with Multiple Sclerosis to themselves, however, I find that its therapeutic for me to share my story. I am writing about it with the hopes that I can shed some light on this disease for those newly diagnosed plus it’s a way for me to work through some of the trials and challenges I am faced with as well as recognizing and acknowledging the hidden treasures of living with MS.  So, if it’s boring to you, I apologize now but maybe read on, hopefully you will get a little something out of it, even

if it’s just a recipe you may fall in love with! But there is no recipe today – stay tuned though because I am making some Blackened Fish Tacos tomorrow and if they turn out how I intend for them to turn out, I will focus my next post on singing their praises!

I love to travel but as I am progressing in my MS, traveling doesn’t always love me.  We recently went to Disney World – an adult’s only Disney World trip!  Our friends were coming off a cruise, (we don’t get to hang out with them very often since they moved out of the province), so we decided to meet them in Orlando and do the whole Disney World thing. And the Disney World thing we did……… I was 44 years old before I ever made it to Disneyland and had never been to Disney World.  When I was young, I remember all the kids coming to school with those silly Mickey Mouse hats with their name embroidered on them and every time that happened, I would beg my parents to take us to Disneyland and they always said no.  I wanted one of those dorky hats so bad, but all I ever got was a huge lollipop one of my friends brought back for me, which my mom made me throw away because it was too much sugar. WTF, didn’t she know that I was never going to see the actual wonder of Disneyland?  Why couldn’t she just make an exception and let me eat the damn lollipop? I don’t know why, but my parents didn’t want to take us to Disneyland, their excuse was that we were too busy with our horses. As I am writing this, I realize I may still be a little bitter. Anyway, when our movie buff son was about 13, we decided to take him and a friend to Hollywood and of course, you can’t go that far without a stop at Disneyland and Universal Studios.  After that, I made 2 more trips to Disneyland with my brother and his family, but I still never got a Mickey Mouse hat with Raegan embroidered on it.  It’s ok though, I think I am now over that one! Besides, I bought some Mickey ears with a crown on them – take that Mom and Dad!

I am no world traveler, but I do love to pack my bag and head out on an adventure now and then. I love everything about it, from planning, packing, exploring, sightseeing, relaxing, to hiking, and doing things I’ve never done before. Two enemies of people with MS are stress and extreme temperatures, which is funny since these two things are usually inherent when planning a vacation, but they can lead to exacerbations (our word for a “flare up”) and are both as uncontrollable as MS itself.  Travelling used to be a lot easier before I became chronically ill, but I am learning about my limitations and with a few adjustments, I am still able to do it. One of those adjustments was to look at ways to conserve energy so we booked our flights as handicapped, meaning that I can walk short distances, but I cannot do stairs well and walking long distances is a challenge for me. For me to do that though, I had to first get over my fear of being judged as “not sick enough” to warrant a wheelchair or cart ride. That’s half the battle you know, tuning out your own internal dialogue.  Everybody has limitations, but those with chronic illnesses tend to have a few more than others and I try to keep that in mind when I am traveling. It’s ok to ask for help and I need to remember to conserve energy when I can, so I am able to see and do everything that I came on vacation to do. I was thankful for the wheelchair, especially since I am always “randomly” chosen for extra security screening and this latest trip was no different.  WTH?  I have no idea why, but I am quite sure it’s not as random as they like me to believe!

Fast forward to Disney World – although this was an adult trip, I still found myself constantly on the lookout for princesses, chasing Mickey Mouse, hunting down Donald Duck, etc.  I have to give props to our travel partners because if I saw a sign that said 10-minute wait to meet so and so, you can bet that I am going to wait the 10 minutes so I can get a picture for the grandkids, and our friends were good sports. Well, they waited with us for some of the characters (even getting in the pictures with us) and sometimes they could be found at a diner with a cold beer in one hand and a margarita in the other.  We ended up ticking all the boxes on characters that our grandchildren wanted to see pictures of.  We even got Elsa and Anna from Frozen to send a video to our oldest Granddaughters, which was a big win!  I’m sure we rose to TOP NOTCH Grandparent status with that one, actually I know we did because one of our daughters told us that her daughter was losing her sh&* over the video.  It was so much fun looking at Disney World through their eyes, even though they weren’t with us.  What I do know, is that the next time we go to Mickey’s house, we will be holding hands with at least a couple of our grandchildren!

Back to the actual issues when travelling with this stupid illness that follows me everywhere I go, even when it hasn’t got a ticket!  One day, I walked and walked and walked, I did not stop walking all darn day. You know, in my mind, I am still the gal who can go and go and go. The girl who isn’t a party pooper, the girl who doesn’t like to slow people down, the girl who never says enough is enough! So, on this day I walked, I walked a lot – way more than I should have. I overdid it. I was great throughout the day, but by dinner time I was done.  My body was on fire.  My nerves were misfiring, every nerve ending was electric, I just wanted to crawl in a hole and hide, I had never had that feeling before.  I have nerve issues regularly, but usually its confined to one area, not my entire body.  I laid in bed thinking (fretting) that there was no way I could do another day at that pace, I was worried that I would need a wheelchair tomorrow, just to make it through the front gates.  And in the back of my mind, I was wondering if I was doomed to have this as my new reality.  Was this the beginning of a relapse and if so, would I recover from it or would the damage finally be something that my body doesn’t recover from?  That is a fear of mine regularly – will I wake up tomorrow with a new level of disability that will again affect my quality of life?  I also was worried that our friends and even my husband would say that travelling with me was too much work, it wasn’t fun for them and they wouldn’t want to take another trip with me.  As I laid there burning up, feeling sorry for myself and wanting to cry, I was trying to figure out how to will my body to have enough energy to get up in the morning with a smile on my face and ready to meet the day, but I will be honest, by the time 2 am rolled around, I was finding it hard to picture it. Not knowing if your body can hold out for another day is a humbling experience, even more so when you have so much that you want to do and a brief time to do it in.  It’s frustrating because the mind tells you that you are still a bad ass rock star, but the body sometimes tells a very different story. It seems like I am my own worst enemy and I don’t exactly know how to be kinder to myself, but I am working on it.  It’s humbling to realize that others can see I need to take a break before I can see it for myself.  In addition to my nerves acting up, I got a sinus cold on our last day – what can I say, when it rains it pours!  Luckily, I came prepared for my husband to get sick with the dreaded man cold and had my essential oils and cold meds on hand for him, so I put those to work right away, because Karma is a funny thing…….it wasn’t him that got the man cold, it was me and to use someone else’s terminology, I became one of the babiest of babies about it. And yes, he did end up getting the man cold once we got home, in fact he still has it. But, I am recovering thankfully, and I will say that even though I overdid it and I got a man cold, it was worth it!  We got to spend 5 days with longtime friends that we love and don’t get to see nearly often enough, we got pictures with every Disney character that we were charged with doing and we made it home safe and sound – all in all, it was another successful vacation!

The good news is that living with a chronic illness doesn’t mean you have to abandon your travel dreams, so I have made a little list of some tips that may make your travels a little more enjoyable:

• If there’s something you absolutely don’t want to miss out on, do it first if possible. Don’t save it for the end of the trip when you might be exhausted or sick. Even if you feel invincible at the start of the trip, you’re not, so don’t pretend you are. If you be sure to get the have to’s out of the way and then move to the want to’s, you’ll be much less disappointed this way, especially if you end up spending the last couple days of your trip cooped up with exhaustion or a cold / flu.
• If you use Essential Oils (which everyone should be), always travel with your tried and true oils or roll-ons & blends. My favorite multipurpose oils are lavender, peppermint and lemon.  I add lemon vitality oil to my water for an extra boost of energy.  It is also good for constipation, fevers, overeating & stress relief.  It has been used throughout history to fight food poisoning and helps to lower blood pressure and to ease muscular aches and pains.  Use caution when using lemon oil externally though as it is photosensitive and can cause skin irritation if used on skin exposed to direct sunlight (waiting 12 hours before going into the sun is preferable).  If you have a headache or nausea, you can mix 1 drop of lavender and peppermint and rub it on your temples, forehead and behind your ears.  You can also use lavender and peppermint as a stomach ache remedy by mixing 1 drop of each and rubbing it on your stomach.  I never leave home without my MS blend which I rub along my spine for extra nerve support and my Deep Relief roll on for aching muscles or joints.
• Pack a positive attitude, humility and kindness – chronic illnesses suck, but there is always room for laughter, humility and kindness. The more you can laugh at yourself, the better off you will be.  The more you can see the silver linings, the more fun you will have. A positive attitude can help you solve most minor problems quickly and with a favorable outcome.  Tim McGraw says it best when he reminds us to be humble and kind. When you open your heart, and accept what is with humility, possibilities become available that you may not have been privy to otherwise.  If you need to take a slower pace when hiking one day, you may sit on a rock and see that momma deer with her twin babies sunning themselves in the field that you would have missed had you been hiking at max speed.  You may miss that beautiful sunset because you hurried yourself along instead of stopping to appreciate the splendor that we are graced with every day.
• Don’t wait. Don’t save that dream trip until you retire, or until you have your mortgage paid off, or until the kids are grown or until you lose 20 pounds or until you feel better. MS is unpredictable, go now.  No regrets, right?
• Listen to your body. Symptoms of MS can include fatigue, dizziness, and heat intolerance among many other things. These specific side effects can be very prevalent especially when traveling through hot and humid climates. Don’t feel guilty about taking an afternoon or a day to rest! Yes, you’re in an amazing place, but some of the best times can be spent just relaxing and taking it all in at your own pace. There’s no shame in taking some time to recharge. Then, when you’re all recharged, go out there and soak it all in!
• Book your travel with airport assistance and use it! The energy you save by not running through an airport, could mean a couple of more hours (or maybe days) of vacation enjoyment!  Bring along your mobility aids – whether it’s a cane or walking sticks, find something that is easy to travel with and use it if you need to.
• Bring along some extra days of your prescription medications. You never know when plans may have to change. Be prepared.  Also, bring a list of your medications and your dosage amounts and make sure your travel partner or someone knows where they are written down.
• If you are still working, book a couple of extra days off to recover when you get home.

When we got home, I was sicker than a dog and feeling all together crappy.  I didn’t want to go anywhere, see anyone or do anything.  My daughter had a chat with me reminding me that yes I was sick, yes I was tired, but that’s life.  Everyone gets sick, everyone gets tired and everyone has challenges in their day and in their lives, but when we allow all that negativity inside our head, we have lost the battle and it’s hard to get back into the game when that happens, yet you need to do just that. All it took was for her to put things into perspective for me to realize that I was  feeling sorry for myself and I pride myself on not being that person. It’s that quick though. When you have something chronic going on in your life, unless you are on top of your attitude, it is easy to fall into a depression about your sad state of affairs.  MS is not me, a burden or my shortcoming.  It lights a fire in me to remind me that I should seize every opportunity and make the most of every single day, which is what I strive to do.  I fail, I falter, and I screw up, but it is my intention to live my life rooted in the present and fully occupying every day the best I can.

What are your best tips to keep from slipping into the negative mindset when things seem stacked against you?  I can use all the help I can get!

Keep your eyes peeled for the Blackened Fish Taco recipe!

Until next time!

Raegan