On this Fibromyalgia Awareness Day, I wanted to talk about how I travel and keep in spite of fibro!
Fibromyalgia is a syndrome with multiple facets. There is the pain, fatigue, sleep and cognitive problems! I have all of these. I think most of us with fibro have all to some extent. I think some people struggle with some of the facets more than others.
I am in a few Facebook groups for people with fibro and I like talking to everyone and seeing how different their experiences are and what helps them.
The one big takeaway that I have found is that everyone reacts differently and has a different experience. Even with the same symptoms we all experience it differently. Let's just take pain for instance. Some people experience the pain more as a side effect and the fatigue is worse for them and some people experience the pain worse and the fatigue is lighter.
So here it goes..my biggest and best tip upfront and right here..if you don't want to read any further then you don't have to. I would love it if you would though!!
Here goes...make sure you can adapt what makes you successful at home...on the road.
What I mean by that is have some way to recreate your space or whatever you use, that you can use when you travel.
I use a lot of otc pain creams and I bring them with me. I use a shower chair so if I can't get an accessible room, I bring one with me. If you have to travel on a plane and can't bring what you need, see if you can rent what you need in the area you want to go to. Or purchase it and have it delivered to your hotel room.
If you need extra pillows, ask the hotel for extra pillows. Make the space fit your needs!
The next thing that I do is try and schedule in "downtime". Time for rest breaks or whole days so I don't just go and go through the trip. Sometimes that means making the trip a bit longer so I can accomplish that, Instead of 5 days I make a trip 7 so I can have 2 down days where I can stay in bed, rest and not have to worry about missing anything.
Have you ever tried making a treatment plan for yourself? If not I highly recommend it. Please watch this video on how to make one. Make a travel treatment plan that can help you plan for your problems! We know they are going to happen. So plan for them!
Pack what helps you and bring it with you! So if you love the Disabled DISventures pain journal..bring it! I also bring my heating pad, plastic baggies so I can make ice packs on the road, whatever OTC creams I am using and of course snacks and foods that help me.
You can even do this going to Walt Disney World! You can order groceries to your room, request a microwave for your room, which I did on our most recent trip AND bring food into the Parks with you!
Lastly when I travel with fibro is... I give myself grace to know everything isn't going to be perfect. Even though that's what I want. You have to let what you used to know of travel or what you think the perfect travel picture looks like and let it go! Make it your own and know that at the end of the day, the memories are what is important...Even if that memory is watching movies in the hotel room. Which I have done!!
Now, if you are ready to travel make sure you contact our partner Get Away Today. We will make a small commission but its doesn't add to your cost! You can use our link or call them at 855-GET-AWAY. Make sure you tell them that Disabled DISventures sent you!
What is your favorite travel tip? Tell us in the comments! You may help someone else.
I have a condition called Turner syndrome, and I’ve just joined a group for people with the condition. I’m eager to connect with people like me and learn about their different experiences!