Traveling with chronic pain/illness & my 20 travel essentials

Last week we went to Six Flags & Hurricane Harbor in the 100 degree heat of the TX sun.   My son specifically asked for this for his birthday so I was bound and determined to make it happen.  The whole trip was a big production.   I was exhausted and hurting severely before we even left our house, not a good sign.

 In the back of my mind I was wondering if it was a good idea, but alas my tenacity kicked in.  And I want to share my experience since I know especially during these summer months a lot of us Mama's are faced with similar situations.   
For the 4 years before this & off and on for many before, I was confined mostly to my house making it to very few things, much less family fun things.  Holidays, birthdays, outings, church, events you name it I missed out on so many things.  Many times I cried about missing out on precious family memories or not being as big of a part as my heart longed to be.  But this trip turned all that around for me. I hope that by sharing it will encourage you as well. 

First of all I made sure to stock up on medications, all of them, the heavy hitters and everything in between including my supplements & oils.  I brought.it.all. Not only can the heat make me faint, fall, vomit, and increase my pain, but it also triggers migraines. Plus I can't physically walk well because of my balance issues. Thank you EDS, CCI, & AAI!!  So I researched park accommodations & discovered that for less than what I could rent a wheelchair at the park, I could rent a power scooter from a medical supply store here in my state, and no one had to wear themselves out pushing me(I can't push myself because of my weakened upper body strength and tendinitis in my forearms)!  I was all over it. I ordered a pack of cooling towels  a case of Smart Water, and bought this sweet misting fan that literally may have saved my life.  There are several other things I brought along which I've linked below with prices and where I bought them. 

 The first day we decided to go to Hurricane Harbor since there's water and I would presumably find a shady spot and be wet so what's the big deal, right? WRONG. So WRONG.  Somehow I forgot about the collar I wear 24 hours a day not being able to get it wet. So we looked into renting a cabana but it cost more than our hotel stay, hard pass.  We ended up renting a tiny little tent like apparatus that fit 2 chairs under neath...barely. I was excited as I plopped my bag down and went to try to find a comfortable resting position. Until 30 seconds later when I realized somehow the temp in this "shading tent" was at least 10 degrees hotter than actually sitting in the sun. I turned my little misting fan on and that puppy was like a dream, for a while anyway. I was still dripping sweat down my back and glistening all over in a very non attractive way.  My face looked like I dipped it in highlighter because of all the shine! But, I was there, so that was all that mattered.  I plugged my noise cancelling headphones in, turned on my Audible book and set out to just relax. It was enough of a distraction that I was okay to stay there for a bit.

I was just praying my hubby and kids wouldn't come back or at least my daughter who is scared of most slides, as the temp would surely increase 100 more degrees.  Also, I was hoping they were having so much fun they'd forget I wasn't there enjoying the slides with them. Plus, I knew if my son saw I was uncomfortable that he wouldn't enjoy himself but it would be impossible to hide at this point.  Thankfully they stayed gone a while and I was able to keep this routine up. I was about to take a sip of my water when that was hot like I'd microwaved it for tea when they returned with arms full of icees.  No thanks, hot water for me since I have sensitivities to sugar, flavoring and corn syrup.  The brief enjoyment was not worth the price I'd pay later.  I also forgot to bring a portable cooler....nice one! This story doesn't end well so I'll save you the dramatic ending and say that unless you have breeze, cold fluids, can get in the water, have the ability to ride a power scooter or wheelchair (if you have trouble walking),can re-wet your towel every 10 min or more, or if you have orthostatic intolerance, heat intolerance, and increased pain levels with heat/activity that I don't recommend an amusement park in the dead of summer (my tenacity is sometimes can be a huge weakness!)  This all probably seems pretty obvious but I was just naive enough to try it.

 I ended up passing out in the car for 2 hours with the AC on high, slamming cold water and still holding the fan on me because my body temp would.not.go.down. The heat exhaustion was real y'all!! I was pretty discouraged considering Six Flags was our destination the next day.

The next day however, was so much better that's why I share. Firstly, the park was big enough to accommodate my scooter, and I could use all of my gadgets from the day before AND find multiple open shaded areas. That made all the difference.  When I exert myself even by standing it takes a lot out of me and increases my pain.  I think that's another reason it hit me the hardest at Hurricane Harbor because I was not only overheated but either having to move to stay cool or walking.  With the scooter I had none of that nonsense.  I was also able to keep my water cold because I could bring more inside.  It did help that the park had multiple shaded areas, misters, and places to sit too. I really didn't even need my misting fan the whole time, and it was just as hot as the day before. That really stood out to me too because it encouraged me how much those changes and accommodations made a difference. 

 I of course wasn't able to ride any rides but I was THERE.  So, that was many answered prayers and meant the world to me and my family. We got there about 11 and all of us made it to 5 when my son was the one begging to go!! 

 The worst part of the whole day was when we stopped to eat lunch. I hate being the center of attention, but I'm used to getting a couple curious stares from people just being in the collar.  Well, that was magnified 100 times when we entered or I tried to enter the packed restaurant in my big 'ol power scooter.  My husband went to clear an area for me and I'm trying to communicate with him from across the restaurant that I'm just gonna park it outside.  He was not having it though.  I was literally at the table with the people next to the door, so so awkward for all.  I am holding up the keys assuring him it would be fine and he's waving in big motions for me to just come through. People were having to move to make room for me, my kids looking on in horror from the line to order.  It probably looked like we were arguing. Y'all it was up there with one of the most embarrassing experiences I've had! Not because of the scooter, I was grateful for that, but just the squeezing it into this tiny, full restaurant.  Too much, for me anyway.  I believe we'll bring our own food next when/if we go back for fall break. That little break though was a enough to cool us off, hydrate us all and get through the rest of the day where my son got to ride all he wanted to ride.  And I got to have some fun with my daughter who isn't a huge fan of rides.  

Steven and Jeremiah on a ride

I got to take all the pics some of us Mom's like to  take when their kids are on a ride, it was grand!  And I was so excited that it was him that actually begged to leave, not me! The best part was getting to be THERE.  GETTING TO BE THERE THE WHOLE DAY!!!!  It meant the world for real to all of us.  And I know this isn't possible for everyone but it just reminded me of all the progress we've made with my condition over the past year and that anything is possible. No matter what you are facing today, there is always, always hope.  So Getting to go on this 3 hour road trip both ways, 1 1/2 days of amusement parks and all of the family fun time we were all starved for, was more than a hundred answered prayers, it was a  dream come true.  Where so many times before I felt like a failure as a wife and mom, a burden and just a big let down. I left TX feeling like a victor.  CHALLENGE WON!!!! 

 I just wanted to share that because I remember how I was always looking for any glimmer of hope from others living with these challenges and I would hope to find someone with a similar story, and I did.  I'll never forget it, reading a  woman's story many years ago about her progress with the right treatments. It set my decision to persevere and continue searching for answers in motion.  So, today I'm hoping and praying that if you are reading this, & you're in a dark  season, that awful hopeless place where you're wondering what the point of it all is since you're not able to live your life the way you'd always envisioned it, that there is hope.  Our stories may be different but please just remember there is always hope, and that no matter what circumstance or situation you are in, you are loved and needed in this world by someone, just how you are, despite any and all limitations.  I hope you know that in the deepest part of your being and that you are encouraged by being reminded of how important & loved you are!

Here is a list of the products that are my travel essentials and a few I'm adding in for next time. I did not get paid by Amazon to suggest these products, I just have used and love them, but if you use the available links to purchase I may get a small percentage. 

1. HEADPHONES: https://amzn.to/2YedSgn

2. Mini fridge (to keep my headache hat, water or meds cool).  I found this more effective than a regular cooler with ice: https://amzn.to/2SDQ8Nl

3. PEPPERMINT OIL https://www.amazon.com/gp/product/B0062C2IKA/ref=as_li_tl?ie=UTF8&camp=1789&creative=9325&creativeASIN=B0062C2IKA&linkCode=as2&tag=jennyhart-20&linkId=7d40f7025f2143447fd0f4efde255517

4. Sea Band: https://amzn.to/2Y16O7q

5. Cooling Towels: https://amzn.to/2LDp5Rz

6. Misting fan: https://amzn.to/2K2tBWw

7. Medication organizer: https://amzn.to/32HYk3T

8. Tranquility essential oil(because car rides make me anxious): https://amzn.to/2JNIflw

9. Headache hat: https://amzn.to/2K0pLx8

10. Sunglasses: https://amzn.to/30QgDSz

11,  Eye mask: https://amzn.to/2JZH1CD

12:  sweat pants: https://amzn.to/32NbcWj

13. weighted lap blanket: https://amzn.to/2LDQW4d

14. Emesis bags: https://amzn.to/30Su9oI

15. Bag hanger(use for purse and also trash): https://amzn.to/2XWqsl0

16. Orthopedic seat cushion: https://amzn.to/30YbtnL

17.  Essential oils travel diffuser: https://amzn.to/30NTsrW

18. Travel AC adapter: https://amzn.to/2Yfbce8

19. Ice/heat packs multi-sized: https://amzn.to/2Y19Ick

20.  Head relief essential oil blend: https://amzn.to/2YeJi1U

CHRONIC PAIN: what has worked to help manage my pain

MISDIAGNOSED: my 16 year medical mystery SOLVED