When I started my blog, I soon found out I was not the only one traveling with a Chronic Illness. But I did not find that many people actually talking about travel with chronic illness. You can read my tips for taking a road trip with Crohn’s disease and How to pack your meds when flying. I would like to use this space and share more inspiring stories from other travel bloggers who travel with chronic illness. This entry in this series is Pamela who talks about travel with Fibromyalgia.
What is Travel with Fibromyalgia like?
Pamela Jessen is a blogger who blogs about her life with chronic pain and invisible illness. For this guest post, she wrote about her experiences on a recent cruise while battling Fibromyalgia. Follow her on her blog and read her story below:
What is Fibromyalgia?
Fibromyalgia is a disease that causes chronic pain. It is not an auto-immune disease, but symptoms do resemble auto-immune disease, so this can be confusing. Fibromyalgia causes your central nervous system to send an abnormal amount and frequency of pain messages throughout your body. As if having pain is not enough, the NHS lists the following symptoms for Fibromyalgia:
- increased sensitivity to pain
- extreme tiredness (fatigue)
- muscle stiffness
- difficulty sleeping
- problems with mental processes (known as “fibro-fog”), such as problems with memory and concentration
- irritable bowel syndrome (IBS)– a digestive condition that causes stomach pain and bloating
Because these symptoms also occur with other conditions and chronic illnesses, a diagnose for Fibromyalgia is hard to give as a test for it doesn’t exist. At the moment, there is no cure for Fibromyalgia, but symptoms can be treated with medication, therapy,
Life with Fibromyalgia
Pamela: Travel is exciting and I think everyone looks forward to planning their next vacation. I certainly do, but for me, planning takes on special meaning, because I live with Fibromyalgia and Osteoarthritis and life can be very painful on a day to day basis. Travel takes on new challenges but for a recent dream cruise, it was all worth it! Let me tell you more.
Fibromyalgia is a condition where there is widespread pain throughout the muscles of the body, due to the brain and spinal cord misreading pain signals. I feel it as a deep ache throughout my body, especially in the tender points found from neck to knees. Other symptoms include unrestored sleep, brain fog, dizziness, numbness and tingling in my arms and overwhelming exhaustion. I use a cane all the time and quite often use my walker when I’m out because I need the help with balance and stability.
For more information about Fibromyalgia, symptoms and treatment options, check out the website of the NHS.
As you can see, this isn’t a disease that makes travel planning easy, but with the right tips and tricks (and the proper motivation – like cruising) it can be done and done well.
Planning to travel with Fibromyalgia
My husband Ray and I have always wanted to go on a cruise and we finally decided the East Caribbean would be perfect for us. We had thought about other types of vacations such as all-inclusive resorts, flights to various cities in Europe and the Caribbean, etc. but we wanted adventure on the high seas.
With my Fibromyalgia making it hard to walk long distances, a cruise seemed like a great way to see a lot of places without having to do a lot of walking at the same time. When we researched our various options with our Travel Agent, we thought an all-inclusive would be either too sedate or would involve too much walking to enjoy the various activities.
Being on a ship, everything was at our fingertips. The same decision ruled out travel in Europe such as travel to places like Prague or Spain. The amount of walking would have caused an extreme amount of fatigue for me which would have detracted from our enjoyment. A cruise offered the best of everything: the freedom to do as much as we wanted with offshore excursions, yet having everything available to us on board at the same time.
Cruising with Fibromyalgia
We booked a trip with Carnival and decided on a balcony room after talking with my friend who is a travel agent. She helped us arrange all the details and made sure to note that I was disabled on the paperwork, which came in handy. We live in Victoria, BC so we decided to take The Clipper Ferry to Seattle and fly from Seattle to Miami where we boarded our ship.
Once we were in Miami and going through customs, we were moved to the front of the line, because I was using my walker. This was so nice because the line up was huge and I tire easily. It all moved fairly quickly though and we were soon processed through and were moving up the ramp to the ship. Before I knew it…I was on my first cruise ship!
We were told our luggage would be in our room within an hour so we went ahead and found the buffet for lunch – a wonderful welcome for what we could expect over the next 7 days. Everything was so fresh and delicious – I knew I was going to have to be careful or I would definitely be gaining weight.
Once in our room, we were delighted with everything. Unbeknownst to me, my husband and our Travel Agent had conspired to upgrade us to a suite, so I had a jetted tub as well as a large balcony! The room was simply gorgeous! And yes, we had towel animals!
Tips and Tricks for traveling with Fibromyalgia
Whenever I travel, for business or for pleasure, it’s important to make a list of what to pack because there are certain items that help me when I am traveling with Fibromyalgia. These include my roll on Topical pain medications that help to soothe aching muscles. I also bring my “magic bag”, which is a wheat bag that I heat up in the microwave and use on the most painful spots during a flare.
Of course, I pack my ice packs, which help to soothe aching joints as well. I wasn’t sure how I would be able to heat up the magic bag at first. But then I found out that the ship was quick to accommodate me on food decks by simply asking. I would put the ice packs in our ice bucket in our suite and that kept them useable and our cabin steward made sure we always had a sufficient supply of ice for that purpose, plus he brought us a second bucket for wine.
Because I use a walker and a cane, I made sure I attached address labels to both of them, in case I somehow became separated from them. There were a lot of people using mobility devices on the cruise and I wanted to ensure I could get my own back if needed.
Things that you can do with Fibromyalgia
Each morning on the cruise, we started off with pastries and coffee on our balcony around 7 am and then went and had a bigger breakfast a bit later. Depending on when the ship docked and what the itinerary was for the day, we would often just head back to our balcony to soak in the sunshine. In Honduras, we went to a Turtle rescue center where we got to touch and handle the various turtles.
And in Belize, we went swimming with Stingrays.
The Caribbean Ocean was amazingly clear and to swim with these gentle creatures was such a thrill. We took a boat and headed out in the Caribbean Ocean to where the Stingrays live. Once there, we got into the water with them so we could play with them. There were handlers there who helped you with them – I got to kiss one and had one give me a hug. They feel like rough velvet and are so gentle.
The only thing I didn’t like was the fact the water was almost up to my chest and it was hard to maintain my balance because I’m so short, but my (very tall) husband Ray was great at holding me up and keeping me from going under.
We also spent time in the Art Gallery on board and purchased 5 beautiful pieces which now hang in our home. Ray took a day to go on a motorcycle trip in Cozumel Mexico and I stayed on the ship to enjoy a trip to the spa. That was a wonderful day and well deserved as I had been pushing myself quite a bit. So I was feeling quite a bit of body pain from my Fibromyalgia.
Get a massage
A good massage helped a lot with that and I also enjoyed a wonderful facial with tropical touches like coconut and kiwi. Each day, the spa would have specials at quite reasonable prices while we were docked, so for those of us staying on board, it was easy to get a good deal.
Every evening, we welcomed dining with our table companions and finding out what everyone had been up to. There were 5 other couples, one from Canada and the rest from the US and we enjoyed their company. Most of them were pretty active so it was fun to hear about their adventures. We were the only ones to swim with the stingrays and the others thought that was really cool and wished they had done that when we told them about it.
Shopping and Souvenirs
It’s easy to go crazy and buy a bunch of souvenirs but you have to remember that you’re bringing all of that home with you too. The last thing I want is to be carrying more items with me than I left with. Because traveling is hard enough when you have luggage and a walker and a cane.
Ray and I were careful with what we purchased as souvenirs, preferring to take photos as reminders of our time away. I bought one ring in silver and Tanzanite and then the artwork we purchased was sent to us separately after being framed, so we didn’t need to worry about transporting that. There were many items I saw that I would have liked to have bought but perhaps that just means I need to book another cruise.
Routines on board
For the most part, I didn’t experience too many problems health wise. I tried to stick to a routine during the day, eating meals at scheduled times to keep my energy up. It was also important to not overload on food so I wouldn’t feel bloated and heavy. It was hard, with all the delicious choices awaiting us but we allowed for a few indulgences each day and that made it feel like a real vacation.
Each afternoon, I laid down for a nap for a couple of hours, so I could enjoy evening activities like the formal shows or a movie at night by the pool (complete with popcorn). On the rare occasion that I did have a flareup, I treated it just like I would at home, using my Wheatbag, heated up in the microwave by the kitchen, taking my medications and just resting.
Our balcony was excellent for that, with the balmy breeze being perfectly conducive to relaxation. The staff were remarkable in attending to our needs and went out of their way to assist me when required. This was another reason why we chose to cruise as the cruise lines are so famous for their hospitality.
As you can read, traveling with Fibromyalgia isn’t always easy, but I won’t let it get in the way. I’m ready for my next trip!
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