Today I wanted to talk about my experience with chronic illness. I was diagnosed at 15 years old with Chronic Fatigue Syndrome, after years of blood tests, hospital visits and repeatedly being told that I was lazy. It was a really physically and emotionally draining time and getting a diagnosis gave me some clarity. At the time, my attendance at school had dropped to 50% and even when I was at school, I would fall asleep on my desk to block out migraines. I still have symptoms today and I don’t think it will ever go away. So how do I manage to travel the world now?
What is Chronic Fatigue Syndome?
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E) is a complex illness. The main symptom is overwhelming fatigue, which isn’t improved by rest. It exists on a spectrum where more severe cases are bed bound or in wheelchairs. I am extremely lucky that I only experience mild symptoms. Other than fatigue, CFS can bring muscle/joint pain, flu-like symptoms and trouble concentrating or “brain fog”.
For me, my CFS means that I feel generally unwell all the time. There is always an underlying pain. I often feel dizzy if I stand for a long time, I get nauseous most mornings and I suffer from regular headaches, as well as migraines. It is rare that I have a day where I struggle to get out of bed at all, but it does happen. I can handle bad pain days, but fatigue cannot be pushed through. The energy just isn’t there, physically or mentally. That brings the mental symptoms, like brain fog.
How do you manage your symptoms?
A huge part of my illness comes down to pacing myself. If I make plans for a specific day, I won’t do anything strenuous the day before. It is an unpredictable illness. Even when I make plans and take rest days in preparation, I can still struggle. The fatigue part is the hardest to overcome for me. My body feels heavy and getting through the day can feel like trying to swim in a suit of armour.
I used to take painkillers often. Alternating ibuprofen and paracetamol didn’t do much help, but it partially numbed the pain temporarily. I eventually began taking codeine if I had to do anything physically demanding, but I found my mental symptoms got worse. On bad days, it was making a choice between being in pain and pushing through or being present physically, but not necessarily mentally.
I am often known by friends as someone who misplaces things or as someone who is generally ditzy. That is my CFS. My brain fog causes me to forget simple words or mix them up and also forget where things are kept in my own house. I do really silly things like opening the freezer while looking for a knife or not seeing things that are directly in front of me. It happens for me worse in the evenings as the day has taken its toll on my body, so preparing my dinner is like the most disorganized cooking show you have ever seen.
How does CFS affect my daily life?
All of this makes full-time work really challenging. I was a Pre-School teacher for years. I managed my symptoms by taking a lot of painkillers and forcing myself through it until I burned out. I would not recommend that. I thought I would be fine, but looking after 2 year-olds is a physically demanding job. Living constantly on painkillers isn’t a long-term solution and it all catches up with you in the end.
I would lie to my work about having stomach bugs or temperatures because I was embarrassed to admit that I was taking a day off for my CFS. Even then, I would use my rest day on my laptop completing work from bed. I felt like I never really got any rest for the whole 2 years. That had a massive impact on my mental health and I was eventually signed off for depression and anxiety.
How do you manage to travel then?
Traveling full time was the first time I felt like I had control over my life. I was living and working in hostels, which is a much less physically demanding job. It also helped that going to work meant simply going downstairs to the bar/reception desk. It was a casual job where I could save my money by living (and sometimes eating) for free. I stayed in Phnom Penh for a month, mostly visiting vegan restaurants and chilling. I used the highlights of that month to write a 3-day itinerary, but realistically I wouldn’t have able to do that much in such a short time period.
When I say traveling full time, I am referring to the fact that I lived away from home. I wasn’t always on the move. I wouldn’t have been able to cope with that. Even before I started to work, the travel was slow and chilled out. Lots of afternoon naps and beach days meant that I could reserve my energy. My biggest achievement is still climbing Mount Batur, even though it wiped me out for days. We were doing a country per month for the most part, but I started staying 2 or 3 months when I was working. I was strategically planning around the activities I wanted to do. Of course, I still had times where my chronic fatigue was bad and ruined plans. My 4 days in Pai doing absolutely nothing, because I struggled to get out of bed come to mind.
When money started running low, I was worried about overexerting myself. It took some trial and error to figure out what jobs suited me. Party hostels are fun, but self-medicating with alcohol is not a good idea. I have never suffered from alcohol intolerance, which is common with CFS, but I can confirm that alcohol is not good for anyone with a chronic illness. My drunk self didn’t care and is honestly really wild. I was in a cycle of sleeping all day, working the bar and then partying all night. It was at a time where my mental health was awful and I just needed a constant distraction. It is mostly good memories looking back at it now, but my poor liver wouldn’t say the same.
Eventually, I found a balance. In Vietnam, I realised that you could get stronger painkillers over the counter. I was managing my symptoms, doing fun things and I had stopped drinking every day. I was going to be teaching English there and I was preparing to move to Danang. Until I went to see some friends in Thailand and the Vietnamese border shut. I coped with that bad news by getting horrendously drunk but in my defence I had also found out that I had to go home due to coronavirus and I had to go out with a bang.
So how am I now?
Today I am suffering from fatigue. I am finishing this blog post from bed. In general, I feel no better or worse than normal. I can manage my symptoms with pacing and medication. My illness isn’t going to magically go away as much as I would love it to. I am moving back to Prague (where I lived at the start of my travels) and I have been looking into work. It is going to be trial and error to find the right job for me, but I am excited to get out of the UK and see some positive change in my life. I will probably do a little life update post in a month.
I don’t like to talk about my chronic fatigue syndrome, because I know mine isn’t as bad as other people and that I am incredibly lucky. I am conditioned into downplaying my symptoms to seem like I am not complaining or asking for sympathy. Even to the people close to me, I will say “I’m fine it’s just my chronic fatigue”. More awareness definitely needs to be brought to CFS and other invisible illnesses, so that people living with it can get the support they need. Do you suffer from any invisible illnesses? What do you do to manage your symptoms? Let me know.