What is it like to travel the world alone with fibromyalgia? read report

Traveling the world and discovering new cultures is a dream of many travelers. It is no different for Luana Lôpo, 31, from Bahia. She has visited 14 Brazilian states and more than 20 countries.

So far nothing more. If it wasn’t for a detail: Luana has fibromyalgia – a chronic rheumatological disease that affects muscles and causes pain throughout the body. She usually travels the world alone and shares her experiences on the blog Viagem e Cura.

fibromyalgia

Credit: Personal ArchiveLuana Lôpo, 31, from Bahia, shares what it’s like to travel the world alone with fibromyalgia

at the request of free ratchetLuana wrote what it’s like to travel the world with a chronic syndrome. Read below:

I want to demystify a little about what fibromyalgia is, as well as traveling alone with a chronic illness.

But first I’m going to tell you about my relationship with travel so you can understand a little more about me. For those who don’t know, I’ve been on the road traveling solo for over 10 years.

Luana Lôpo was diagnosed with the disease in 2016

Credit: Personal ArchiveLuana Lôpo was diagnosed with the disease in 2016

Moreover, traveling and discovering new places have been a part of my life since childhood. Did you know that I first traveled by plane when I was one year old? And that my first solo plane trip was when I was four? I fondly remember my first “airplane travel alone” adventures, hand in hand with the flight attendants of Varig and Transbrasil, visiting my godfather and his family in another state.

That’s why it’s something very important to me to be able to share a little bit of my experience with you today.

My first solo travels

Currently, I have explored and explored more than 14 states in our country, as well as 20 countries.

At the beginning of my solo wanderings, in 2012, I made a breakneck pace of travel, very common among women and men in their early twenties. For me sleeping while traveling was unacceptable, I wanted to get the best out of the place and with the greatest intensity I could.

Credit: Personal ArchiveLuana shares her experiences on the blog Viagem e Cura

I remember a trip I made to Cuiabá in 2015, I went out in the evening with some friends for a “quick getaway” because I was going to go hiking in Chapada dos Guimarães at 8 the next day, but what needed something quick his , eventually turned into a real night out, leaving the club at nearly 6pm. Since time was short, I decided I would just take a shower, pack my bag and go downstairs for breakfast.

And I still had the energy to walk all day, bathe in a waterfall (to cure hangovers). Like all young people I was an enemy of the end, I left the path and went straight to the airport to catch a flight at dawn. A detail: between the path and the waterfall, I went to a shopping center, paid a daily rate for the gym, to be able to use the bathroom of a gym (here’s a tip for travelers) and took advantage of the last empty movie session to take a nap .

How I Found Out and What Fibromyalgia Is?

My whole life changed in 2016 when I was diagnosed with fibromyalgia.

I know a lot of people have never heard of the disease, so I’m going to give a quick summary of what fibromyalgia is. Also because fibromyalgia is a chronic disease that affects about 5% of the world’s population, predominantly women, it actually acts on the central nervous system by deregulating nerve synapses. That is, you can be very close to someone who suffers from this syndrome and have no idea or even don’t know and don’t fully understand what she’s going through internally.

Credit: Personal ArchiveLuana has traveled to more than 20 countries alone

But what do I feel in practice? Chronic generalized pain, extreme fatigue (feeling of being hit by a truck and rolling downhill). I didn’t have covid but I believe the feeling of fatigue is similar as is that of dengue – I’ve had it and I confirm it.

Moreover, by acting on the central nervous system, fibromyalgia deregulates the hormonal level and also causes depression and anxiety disorders.

Tips for living with a chronic patient

One of the things I want to bring up today is that, unfortunately, fibromyalgia is a disease that carries a lot of social stigma. Because they have no visible symptoms, patients are often labeled as dull, lazy, cool and hypochondriac.

I know it’s hard to understand that we don’t experience that.

In addition, the patient with fibromyalgia creates mechanisms to live with the pain and hide it, without showing the real face of the shadow that accompanies him.

I have had to deal with bullying at work, discrimination from colleagues, acquaintances and even family members.

Many people ask me: “It is impossible for you to feel so much pain, you are living on a journey, smiling, etc…”.

I have to try to LIVE and do something that gives me pleasure, doing things that increase my dopamine and serotonin which are already so affected by the syndrome. Doing playful and enjoyable activities is part of my treatment, despite the common sense yelling from all four corners that you can’t/have this or that because you’re sick and you can do it, you don’t have any disease, you’re just a lazy person and pretended.

Credit: Personal Archive“I have to try to LIVE and do something that gives me pleasure,” says Luana

Remember, just like for fibromyalgia patients, patients with various other illnesses (mainly mental illnesses and no obvious symptoms) need these moments, this is also part of the treatment and we need to be more empathetic towards each other. After all, they often fight big battles internally that we can’t even imagine.

Myself, a fibromyalgia patient, diagnosed years ago, have a little trouble accepting this. Any sick leave from work hits me hard, because society has taught me that quitting while others are working is unthinkable. In addition, all the looks and comments make me wonder: do I have the right to travel or do other activities that give me pleasure while I am away?

I deconstructed myself for six years to fully accept that the answer should always be YES, because our health and self-love should always come first.

How to Keep Traveling Alone With Fibromyalgia?

The world has gone through a process of change during the pandemic, but for me this change started there in 2016, when I got my diagnosis. I started by taking a step back and thinking about why I wanted to travel.

Credit: Personal ArchiveMy last travels are getting slower and slower and take over the slow travel,

What did I expect from my fast travels? Would a short trip, to see “all there is to see”, change location every two or three days, still make sense to me? Does my dream of going to the Maldives have to be in an expensive resort? And it made no sense anymore. I had changed, I had to start respecting my body, it was going to dictate my travels from then on.

My last travels are getting slower and slower, adopting the slow travel, I am returning more and more to places I already knew to appreciate and really connect with.

I currently prefer to establish bases, spend more time in places, live and feel the place. Eat that unique food at a local romantic restaurant, visit a funfair, go to a typical party, sit in a cafe and watch life go by.

I have also come to respect my body. If I wake up in pain or feeling unwell, I stay calm in the hotel without feeling bad about it. It is better to respect the body and take the necessary breaks than to push it to the limit.

Tips for traveling with a chronic illness

It is very important to make a checklist of what you will need before every trip.

You should get a check-up with your doctors and make sure you are fit enough to travel.

Credit: Personal ArchiveIf you are taking certain or controlled medication, it is important to check whether this medication is allowed at the destination of your trip.

Make sure you have all the medicines you need for the treatment for the days of travel and a few more days. It is also important to bring medical prescriptions for the medications. In addition, talk to your doctor about the medications needed to set up an emergency pharmacy.

If you are taking specific or controlled medication, it is important to check whether this medication is allowed at the destination of your trip, and whether it should be taken and stored during travel.

For example, I use cannabidiol, among countless other substances. So on all my travels I take with me a medical report, my prescription and the Anvisa form that guarantees me the importation of the medication from Brazil.

Another very important thing is to always be connected and be able to receive text messages from Brazil. In case of emergency, it is necessary to contact the doctors, in addition, there are applications that work only with codes.

When should I see a doctor?

  • You who experience chronic pain for no apparent reason (more than 3 months, every day, continuously) are not alone. Seek medical advice. Which doctor to look for? A rheumatologist.
  • Anyone who sees beautiful pictures and idyllic settings here does not know the real problems. They believe that others have perfect lives and have no problems. The real thing is that everyone carries their pain, they just aren’t shared.
  • Depression and anxiety are real problems and need to be addressed. No, it’s not just you on the other side feeling this way. Sometimes it is even difficult to recognize that we need help, but it is essential to the path of improvement. Psychologists and psychiatrists are NOT crazy doctors, they are health professionals who can help you. Seek help, don’t stand alone in this battle!
  • If you always thought it was impossible to travel alone and engage in a personal battle, then I’ve come to tell you that it is possible YES!

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