Since starting this travel blog a few years back I’ve talked about the amazing experiences I’ve had, such as visiting the Philippines, exploring the real Cuba and experiencing Maori culture up close. But one thing I’ve never talked about – until now – is what it’s like to travel with an invisible illness.
The majority of you who enjoy reading Ladies what travel probably didn’t have a clue that I have health issues, mainly because I’ve never been a fan of openly talking about my condition. But the more I’ve travelled I’ve learnt the importance of sharing this information with my fellow travellers and am slowly discovering that it doesn’t have to be my secret burden.
So hi, I’m Keri and I have an invisible illness! For almost half my life I’ve been living with post-thrombotic syndrome and APS – an autoimmune disease that gives me ‘sticky blood’. At the grand old age of 22 I ended up hospitalised with a pretty impressive blood clot that blocked my body’s main vein and also left extensive clotting down both my legs. Unfortunately I wasn’t fully diagnosed until a month after I began to have symptoms and so irreconcilable damage was done to my body.
Recovering from a life-changing event
It took several weeks before I was even able to put weight on my legs again, and I then spent the following years pushing myself to discover my new limits. At the start the best I could muster was a few steps, but being a stubborn cow (and having a wonderful family and group of friends) I pushed myself to walk across the room, down the garden, to the end of the road etc – you get the gist.
Living with post-thrombotic syndrome
My body will never recover from the trauma of my blood clot fully, and this is called post-thrombotic syndrome. However, to look at me now I appear fine. I no longer use a wheelchair, and try when possible not to rely on my walking stick, but even though I might appear to be pottering along the street like any normal person, my legs are actually sore and painful, often swollen and I’ll have a raging backache. I also suffer from fatigue which means I have to choose when and what I do very carefully and heat aggravates my condition, so whenever I’m somewhere hot and sunny my symptoms always flare up.
Now I’m not after a pity party, I’m just trying to give you an idea of what’s going on beyond my façade of normality. I’ve always been quite embarrassed of my condition and my limitations, and also worried I’m a burden to my fellow travellers so often keep schtum and try to keep up. Bad move Keri. This would leave me extra sore, frustrated, or coming up with stupid excuses to explain why I couldn’t take part in activities and days out. But – and it may have taken me 16 years to get to this point – I’m finally learning that the reality is that it’s me that makes my condition a big deal, and my friends and fellow travellers really don’t have a problem with taking extra rest stops or planning trips around what I can and can’t do. All I ever needed was to be upfront with them!
Determined to see the world
Back when I first had the clot I remember doctors telling me that it might not be safe to fly again, and the idea that I might never get to see the world left me in tears. I’d always loved travelling, but being told I might not be able to do this anymore made me even more determined to see the world.
The first flight I took post-clot was a 2-hour trip to Barcelona, and I was scared shitless. Taking on board all the tips I’d discovered about healthy air travel I got through the trip fine and started slowly stepping up the lengths of my flights; 5 hours to NYC, then 8 to Florida. Next was a leap to 11 hours for my first trip to Asia and then, for the 10th anniversary of my clot I visited New Zealand – a goal me and my mum had set ourselves one day when I was lying on that hospital bed.
Travelling with an invisible illness
Travelling with an invisible illness isn’t always easy, but with research and planning I’ve learnt (almost) anything is possible.
Firstly I need to check my destinations. Hills and stairs are the hardest things for me to deal with and so we have to try and make sure we pick somewhere to stay where A – it’s pretty flat, B – the hotel is not on a hill or C – the public transport is good, or taxis are cheap.
The hell of booking flights when you have a medical condition
The flights themselves are the things I dread most, but I remind myself they’re a means to an end. Flying can get pretty painful as the air pressure makes my legs swell and get very sore, and I often get a lot of bruising, but its something I can deal with if it allows me to travel!
These days I can cope with short flights ok, but for long-haul flights I have to request a bulkhead aisle seat, as the most important thing is to raise my legs and be able to move about. This helps the blood flow and eases the pain and swelling.
These seats have been a nightmare to book over the years, and I still am sick to the pit of my stomach that I won’t get the seat until I’ve checked in and got onto the plane. I’ve been in tears at LAX because one airline refused to move me from the centre of a row on a night time flight (I also have to get up every hour and walk around, so I ended up with a lot of irate passengers being woken so I could move), I’ve ended up awkwardly trying to raise my legs over three seats with fitted arms while Justin curled up on the floor infront of me trying to sleep and I’ve been shouted at by air stewardesses when, having been refused a bulkhead seat, I tried to raise my legs against a wall at the back of the plane!
Finding suitable accommodation
Another aspect of travelling with my condition is picking a suitable hotel. A bath or pool helps ease my legs after a busy day, so that goes on the checklist, then we have to make sure it’s got the comforts and amenities to keep us occupied and happy on my rest days (our trips always involve one day out and about followed by a rest day at the hotel to let my legs recover), check it has lifts and book a room that’s near to the restaurant/entrance/bar etc so I don’t exert myself unnecessarily when getting around the hotel.
Planning is key!
Once the travel and accommodation is sorted, Justin and I (he’s an absolute star and always does a lot of the research on our travels) start looking into what there is to see. Once we know what we’d like to do we start working out what’s possible and scheduling out a plan.
For example, for city breaks we work out where all the things we want to see are and make sure we break down our plans to specific areas so travelling is kept to a minimum.
Wherever we’re going we always find out how far apart attractions are, how easy they are to get to, how much walking is involved in the activity and if there are places I can sit and rest etc. We’re also clued up on where all the nice cafes are before we arrive, as we use theses as stop off points for me to rest whenever we’re having to walk anywhere, as the longer I’m on my feet the more sore I get.
All this planning takes time, but I can tell you it’s worth it when it allows me to experience all the amazing things I have.
Travel goals and pushing my limits
In the early days I wondered if I’d ever make it to New Zealand, but I did. I found a way to go up Mount Fuji (I discovered there was a bus up to base camp, I couldn’t go any further, but I can still say I stood on the mountain!), I’ve been able to try snorkelling, and I’ve even attempted to climb a pyramid. To be fair that was the worst idea ever as it left me bed-bound for two days and we had to get an early flight home, but hey, lesson learnt.
And still to this day I’m giving myself new travel goals. Although the altitude will play a toll on my body doctors have told me I should be able to safely visit Machu Pichhu, and having discovered that there are ‘hikes’ to visit Rwandan Gorillas that 70 year olds are capable of I’m determined to do that myself!
There are still days now when I feel sorry for myself and focus on the things I’m no longer able to do, but then I remember what I’ve managed to achieve even with my condition. My travels may involve more thought and planning than the average Joe’s but I won’t ever let my condition stop me from seeing the world!
Do you have any travel challenges of your own to deal with? Perhaps you yourself live with a chronic illness? I’d love to hear your thoughts on this post – please share them in the comments below!