Living with chronic illness
Do you have a chronic illness, maybe more than one? The kind that impacts your daily life (never mind your travel plans) in ways you never imagined? I do. I’m not going to pretend that it’s easy or fun, because that would be a lie. And that would be unfair to everyone else out there in the Spoonie* community who are struggling every single day to cope with daily life AND convince the people they encounter that their struggle is real. Because it is.
Noun; a person with a disability and/or chronic illness(es) which usually involves experiencing chronic fatigue on an ongoing basis. I’m not just talking about being tired, tiredness and fatigue are not the same thing. If you’re tired, you just need to get enough sleep and then your tiredness is cured. Chronic fatigue on the other hand, is relentless, it is unforgiving and you never, ever wake feeling rested and refreshed, no matter how much sleep you’ve had.
The Spoon Theory was developed by Christine Miserandino in 2003. It’s a metaphor which is used to simplify and illustrate the limited energy (physical and/or emotional) a Spoonie has, compared to a healthy person. A spoon represents a unit of energy. Us spoonies have a limited number of spoons to get through each day and so we have to ration those spoons carefully.
Sometimes I have to do things which I know will deplete me of spoons and as a result, I’ll have even less spoons for the days that follow. Some of those things are worth it though and for me, that includes travelling and adventuring around the world.
You may have read elsewhere (on my LinkedIn or Medium blog), or maybe I’ve told you in person (or you’ve figured out from the title of this blog post 😉), I have fibromyalgia, which was diagnosed in 2013. In the UK, fibromyalgia is not very well known although Lady Gaga’s announcement in September 2017, has put the spotlight on fibromyalgia in mainstream media.
— Lady Gaga (@ladygaga) September 12, 2017
So what is fibromyalgia?
Fibromyalgia is a chronic musculoskeletal pain and fatigue disorder with a wide range of symptoms. Widespread pain (in all four quadrants of the body), chronic fatigue and brain fog (cognitive dysfunction) are primary symptoms. Patient experiences with volume and severity of symptoms, vary hugely (the images above only illustrate some of the key symptoms). A lot of fibromyalgia patients also experience:
- Numbness and tingling
- Increased sensitivities to touch, sound, light, chemicals, pollution, food, temperature and weather
- Anxiety and depression
- Irritable Bowel Syndrome (IBS)
Fibromyalgia predominantly affects women, although men can and do get it too. It’s also difficult to diagnose because many symptoms can be put down to other things.
For a long time, I kept my invisible illness hidden from most people. I don’t like labels or people making assumptions about my capabilities. Following over 3 months planned sick leave in 2016, I decided to blog about my fibromyalgia on Medium in January 2017 you can read that here: Using my kryptonite to help others.
My experiences of travelling with fibromyalgia
I want to share my experiences of travelling with fibromyalgia. Because it IS possible. When I got diagnosed back in 2013, I wasn’t going to let that get in the way of my love of adventure travel and spending time in nature. Fibromyalgia has been developing since I was a teenager but I think I had my first real flare up in January 2011, following New Year in Las Vegas. I was in and out of work for a month before I recovered from that. And that wasn’t just a Vegas hangover. I don’t know whether I got a virus or ate some dodgy food, but I had a terrible upset stomach, cramping pain and weakness for a couple of days, before I flew home. Back home, I started with insomnia. It was like my body clock wouldn’t switch back to GMT. Night became day, day became night. I barely had the energy to walk. My legs felt like lead and my brain felt foggy with fatigue. I got sleeping tablets from my GP and I was drinking energy shots on a morning, to try and wake me up. Neither worked. I just had to rest and wait it out.
Camping and hiking in Canada
Later that year, I was on a camping trip with Trek America in Western Canada. Again, I knew something wasn’t right. I was already dealing with carpal tunnel syndrome and constantly wearing a splint, and now I didn’t have the energy to hike, like I had before. It was my birthday and we went hiking for the morning, around Mount Edith Cavell, near Jasper. I had to turn around and go back to the van, after a short walk near the van. It kinda sucked, but I got to explore at my own pace and take photos. When the group returned, we drove off and came across a little black bear at the side of the road. In case you don’t know 😉…I LOVE bears! 🐻 ❤️ This was the best birthday present ever – My Birthday Bear. ❤️❤️
That day always acts as a reminder that, no matter how unwell I feel at times, it is always better for me to travel anyway. Because I can still have amazing experiences with fibromyalgia.
When you have a chronic illness which shows up every single day, it makes travel a lot more difficult. But, difficult does not mean impossible.
Nothing is impossible, the word itself says, ‘I’m possible!’ – Audrey Hepburn
That isn’t to say anyone should ignore medical advice, I certainly am not advocating that. But with careful planning, pacing, adapting how we travel, what we pack and equipping ourselves with tools to maintain a positive mindset, we do not have to settle for the ‘travel is not an option’ mentality that some of my fellow fibromyalgia friends (and myself) have experienced.
Travelling with fibromyalgia since 2011
Since New Year in Vegas in 2011 and despite my illness, my long haul travel has included a variety of group and independent travel experiences:
- A 2.5 weeks round-trip from Seattle into Western Canada
- A month-long trip from Boston to LA through the Southern States
- A 2 week Christmas and New Year road trip from Vegas
- A month-long trip to Alaska, Canada and the Arctic
Two of those trips included camping. I’ve also travelled around the UK and to various places in Europe since then, including:
All of those trips were challenging for me. I experience some degree of pain and other physical symptoms on a daily basis. My chronic fatigue can mean by evening, I’ve run out of spoons to climb the stairs. And when the weekend arrives, the sofa can feel more appealing than leaving the house. But the way I see it, when I’m not working, I can either be stuck at home, or I can carefully plan a trip, explore the world and really feel alive. Besides, the weather isn’t that great in the UK and a good dose of Vitamin D and time in nature, can help ease some of my symptoms.
Chronic illness can take some of the living out of life, but it doesn’t have to feel like that all the time.
It’s important to acknowledge that fibromyalgia is a spectrum disorder, so if you also live with fibromyalgia, don’t ever feel the need to compare yourself to another person with fibromyalgia. Heck, don’t even compare your flare-up self, to your good-day self! We’re all on a different journey. Some people need to make use of a wheelchair too. It can be super-frustrating to go from being able to walk for miles one day (if you are able to walk) and another day, just walking around the house, can feel like a bigger challenge. On those days when excruciating pain can leave you curled up and fatigue leaves you with little energy to move, it can feel like travel dreams are just that, out-of-reach, if-only fantasies.
It doesn’t have to be like that.
I’m going to start sharing more about my experiences of travelling with fibromyalgia, chronic pain and fatigue, and the strategies and tools I use to make it achievable for me.
Do you travel with fibromyalgia?
Let me know in the comments, below.