Over the past week I have spent some time reflecting on my trip and how it was affected by my fibromyalgia. This was the first big trip I have been on since my diagnosis of fibromyalgia, AND the first trip I have been on without my husband by my side. I've been contemplating whether or not I should share some of these thoughts on this space with you guys, and have been praying over it for the past several days.
My hope is that it will be beneficial for some of you who struggle with chronic pain to know that you aren't alone in what you are walking through, AND to give you hope that you can travel just like a normal person- you just have to be aware of what's going on with your body!
When I left David in Alabama and drove up to Nashville, TN. to catch my flight to Portland I cried for the first thirty minutes of my drive. My emotions were all over the place. I was feeling so excited and blessed to be able to travel out to Portland to spend time with my sweet friend for her wedding, but I was also scared and nervous to be embarking on such a epic adventure without my advocate by my side.
You see, David is my voice of reason. Sometimes it drives me crazy, but I am beginning to learn to listen to his reason and his "level-headedness" always respecting what he has to say. During busy weeks at home, David is the person who always brings me back to earth. He reminds me to rest, he tells me to not overcommit myself or to not take that hike when I have already spent the majority of the day cleaning the house. He reminds me that I am no longer able to do what I could once do, and keeps me in check with my realities. Even when I have crazy ideas like going for a run around our neighborhood (I mean, what was I thinking?!) he sits me down and reminds me that I am capable doing
so much, but that my body does not operate like it once did.
At home I now have a routine that works for me.. measuring my days in energy spent instead of hours used. I map out my day by measuring how much energy I will spend during certain parts of the day and making sure I leave myself enough time to recover from the energy spent before the next task.
You can understand my apprehension as I approached this trip. We decided to check one of my bags so that I didn't have to carry too much through the airport. David knew that it would be hard on my body before I even reached my destination. And he would continually text me to make sure I was taking care of myself.
After my first day in Portland, I knew something to had to change. I was with friends who lived their life like any normal 27 year old would.. morning work outs, walking to dinner, running errands during the day and staying up until midnight. And even though my friends had walked with me through the complications of the past several years, they hadn't seen me in action (or lack of action). I am not one for confrontation or one to speak up for myself.. and I knew I had to.
It was a hard journey for me emotionally. I struggled with the realization that I could no longer participate in life like I used to, that I could no longer keep up with my healthy friends. That my bed time needed to be earlier and that I would miss out on those late night talks. It is hard for me to say no.
But as the days went by my energy kept fading, my pain increased and my body stopped working. Instead of participating in the day I would find myself counting down the hours until I could rest or get away and take a much needed nap. I knew by not being vocal about my limitations I was not only doing myself a disservice, but I was not being completely present in the lives of my friends.
One morning I woke up and could not make it down the stars without walking on my hands and knees. My legs were in so much pain they literally could not carry my weight. This is when I knew I needed to be vocal about my limitations (even it if was embarrassing to me) because I needed to be able to function as normally as I could for the remaining week and a half while I was away from home.
After setting clear boundaries for myself things got a lot better. I took a day to recover, spending a lot of time resting and off my feet. I booked an appointment with an acupuncturist and took a hot epsom salt bath. I tried to do everything I could to make sure my body could rest and recover like it needed.
If only I would have allowed myself to recognize my limitations FIRST thing on the trip, then I wouldn't have gotten into such bad shape!
And once I was totally honest with myself and with my dear friends about my limitations, things became a lot easier. They began to fill David's role in my life for the next two weeks, making sure I was resting, asking me if I was ok, checking menus to make sure food was okay for me to eat. They looked out for me and never did they once think that I was trying to skip out on fun with them or made me feel like I was a burden to them.
This trip was the first time I had truly been around "normal" people since my diagnosis, and could could really see the limitations my health put on my body. Slowly, I was able to accept those changes and come to peace with the way things are now. I began to be extremely thankful that my body was well enough to actually travel across the country and spend time with friends.
Those limitations may mean that the days are slower, and the nights end sooner.. but slower days makes time together that much more enjoyable. Instead of staying super-busy we were able to slow down, have meaningful conversations and enjoy one another's company over cups of coffee and episodes of Parks and Recreation.
Instead of feeling a burden on those around me, I felt embraced and loved and protected by the people that love me the most. I felt completely appreciated for who I am and what I am walking through, never judged or cast aside. Plans were made considering my allergies and my need for rest, and I was moved to tears by the generosity and kindness of friends and strangers.
Yes, traveling with chronic pain, fatigue and allergies may look different than traveling for a normal person, but it can be done. It makes traveling that much more adventurous and creative. It allows for time to sit and enjoy the culture and the people you are with. It makes for a greater understanding of how your own body operates and allows for opportunities to be vocal and take care of yourself. Hikes may be shorter, and the days may be harder, but it is totally worth it.
I am so thankful for where I am today. It may look different than where I was 5 years ago, but how can we grow if we always stay the same? How can I be challenged if I don't have roadblocks in my path?
