Travels In My Body
Hi, I’m Jess and I’m a EDS warrior!
My health is not something that I often write about and to be honest its taken me a very long time to get this written. My body and its ability to function is something I have to account for every day and sometimes that can be very difficult, upsetting and draining for me but here goes.
Let me start at the beginning.
When I was 11 years old, after a spate of ankle injuries I was diagnosed with Ehlers Danlos Syndrome (EDS) thanks to my surgeon at the time being really thorough while investigating why my body was so floppy. I Got lucky, this is a condition that is all too often left undiagnosed for a long time due to the complex spectrum of symptoms involved. Some people wait years being passed from one person to another for their various symptoms without all the jigsaw pieces being joined up. Many are often misdiagnosed for a long time which can cause serious long-term physical and mental issues.
EDS is a complex connective tissue disorder that has the potential to affect any muscle or ligament in the body, including the heart, skin and all the many sphincters you contain. It can present in the form of dislocation, chronic pain, scaring, bruising, digestive issues, chronic fatigue, and that’s just scratching the surface of symptoms. There is no cure for EDS, there is very limited knowledge amongst professionals (unless they have studied it specifically) and only in the last 5yrs has a diagnostic criteria been openly available for doctors to access.
My relationship with my body has been greatly affected by my EDS and in all honesty it has left me with very negative views of my physical being from time to time. As a spectrum disorder, everyone with EDS experience different ranges of symptoms, this is a brief breakdown of mine.
So far my EDS predominantly effects my;
Ankles - 9 different surgeries so far to repair and replace ligaments.
Knees - Hyper extend/ lock up and have painful keloid scaring from hamstring removal for last ankle ops.
Shoulders - Multiple dislocations/ subluxations resulting in nerve pain and numbness in hands.
Ribs - These like to pop out at random often when sleeping.
Wrists - Lock up, having to be forced to bend and becoming increasingly weak.
Thumbs - Dislocate at will, joints showing sign of ‘chipping’ damage.
Spine - Degenerating scoliosis and various reoccurrence of 3 prolapsed disks (s1 and below).
Neck - Clicks (c1 and 2) and muscular causing ‘floppy head’ and migraines.
Digestive system - Loose upper valve issue resorting in a Nissens Fundoplication, which now sometimes gets too tight to swallow more then water consistency, slow digestion, poor nutrient absorption, unpredictable sensitivity to many ingredients. Need rapid W/C access.
Bladder - Can be very hard to totally empty, meaning frequent bathroom trips and waking a lot through the night.
Skin - Super soft and stretchy, bruises, blisters and rips easily causing many sore spots and bad scaring. Contact allergies to certain chemicals and natural oils.
Other - Brain fog can be really tough, from forgetting appointments to forgetting things I’ve done hundreds of times. New info can overwhelming or hard to absorb too at times. My ability to thermoregulate is low, so if I get cold to my core it can be dangerous and takes a long time to warm me up, also overheating is a big issue in direct heat / sun.
So, how does living with EDS (and my associated comorbidities) effect how and where I travel and who I travel with? This can be quite complex and I’m aware that I have in the past internalise a lot of my concerns rather then be an advocate for my own well being so not to disrupt others plans. This can often put myself at risk and had huge knock on consequences in the days and weeks hat follow some adventures.
I will lead this with the fact that some days, I can walk and climb and paddle without a care in the world and on these good days I like to take full advantage on the freedom my body is allowing me. This I know can lull some into a false sense of what is possible all the time. However these “good days’ are few and far between.
Due to this I am often very picky about who I will adventure with and the kind of trips we can take. This is often influenced by their general attitude, how much they know about my issues / limitations and if I think they will react badly if plans have to change part way through. After all, there’s no point attempting a huge hike or climb with someone that I know can’t assist me back to safety if something was to go wrong.
Longer travels for me have been for the majority on my own in my younger years. This was a time when my symptoms were relatively manageable by myself with the use of braces, supports and sticks when needed. I have found it hard to communicate my needs n countries where you don’t know the language well enough to explain (and lets face in, it hard enough to explain to medics in the uk). Being stuck in Cambodia needing emergency dental work and not being able to tell the dentist “I have EDS I need much more anaesthetic” was pretty scary. I learned the hard way that it comes in handy to be prepared with a printed explanation of the basics and most risky things for you, there are some great translation services available if you’re unsure you can ask your GP.
“Don’t ever feel embarrassed to ask for help. I once waited half an hour for someone to come past and help me pick up my walking stick, a simple task for some but for me, on that day, a disheartening struggle. After I wiped my tears, we shared a laugh and some tea and I will be forever grateful. ”
For the last 10years I have been lucky enough to have a great travel partner who has proven himself more than capable of dealing with medics on my behalf but also knows when to back off and let me advocate for myself. One heroic effort involved saving me from being given potentially life threatening drugs while being admitted to hospital. It’s great to have someone along for the ride who reminds me to eat, hydrate and admit something is wrong when I look like I’m struggling. Unfortunately by the time that I look like I’m struggling I’m often already past the pain threshold that most people would be able to continue with, so it becomes a race with my adrenaline to keep me moving, warm (so important at this point) and supported back to safety. It’s so important that whoever you are with knows what you need to manage the situation at hand. Being open is key to this. So far we haven’t had to deal with anything major while away, just a few fatigue issues and reduced mobility days. Sleeping in a cold van seems to weirdly suit my body it would seem.
I carry a lot of guilt about how frustrating these slow days can be for those journeying with and I’m slowly learning to let this go with kindness and patience. Wether it’s simply having to go to bed early, cancel plans without notice or having to completely change the plans because I just can’t manage to meet others expectations. This guilt can really shake my mood and I feel that sometimes, when I get into a funky low mood it can be much trickier for someone to handle then the simple physicality’s. The worst for me is having to change something that the kids really wanted to do and let them down, mentally that’s a killer for me. To see them look sad and disappointed in me is a really heavy cross to bear. Unfortunately this does make me push myself too far somedays and then pay the price later. After all, we’d do anything to see our children smile, right?
So, what do I do to prepare for an adventure? Obviously short and long trips do require different amounts of prep.
I’m going to start with the basics of packing:
Short trip/ day out
Braces/ splints/ supports that you may need but don’t want to start the day in.
Walking aids you may need
Any meds you need and 1 day extra supply
Extra light clothing layers / thermals / more socks
Pads/ canulas / spare underwear if needed, waterproof bags (can often be miles from facilities)
High energy snacks and fruit (what ever you can tolerate)
Water / Squash /Hot drinks flask ( something sugary for the end of the day wobbles)
Small medical kit / painkillers / antihistamines / epic pens (if needed) / K- tape
Maps / route plan / GPS ability
A way to make someone aware of medical issues, like an ID bracelet or card
Money for additional transport (bus/taxi/train)
Longer trip/ weekend away;
As above but with;
Cooking equipment and food for easily tolerated high energy meals
Dry shoes
Layers of sleeping warmth (sleeping bag, several light blankets)
Lightweight pillows for sitting and sleeping
Rough written schedule / routes / contingency plan (that someone else is aware of)
Insurance details if needed
Larger medical kit with needles and dry ice packs
Big adventures
As both above but with;
Medical treatment explanations in relevant languages and relevant documents for current health and prescription needs. List of emergency contacts.
Waterproof document holder
Any personal aids you feel you may need for your trip
I know this may look like a long list, especially on top of the usual items you may pack but I have learned the hard way how it can be to get caught short without something essential while on an adventure. Something small can turn into an emergency very quickly. It helps the old anxiety levels no end if you know that you’ve done what you can to help yourself first. If you are travelling with someone else, it’s a great idea to teach them a little about your meds, like when and how to administer what signs of distress to look for etc, they will be your eyes and ears in an emergency keep them informed.
“Other good planning habits can include;
— Check in with you Dr before you leave for bloods and any vaccinations you may require.
— Pre trip food prep. Wether that is simply extra snacks or Making sure you have any supplemental or specialist foods you may require during your trip. Its always good to carry a small amount of “just incase” foods.
— Making sure your bags/ vehicle has enough storage to keep all you items separate and organised.
— Download an online medical tracker for you symptoms to try and stay on step ahead.”
I often get frustrated at the lack of control my EDS affords me but I have never let it completely stop me from achieving what I set out to do (even if I have blips along the way). Often I set myself smaller goals within the bigger picture that allow for little achievements and less feeling like I’ve failed. I know some things will naturally take me longer then they would most people, I’ve embraced this over the years and that’s been super important in how I approach travel and adventuring. I find it helpful to plan ‘short cuts’, resting places and pitstops so I can make judgement calls along routes about how is best for me to proceed. I will not be beaten, no matter how small the steps are that I have to take.
You will never underestimate what you are capable of if you embrace the balance between your health and your mental strength.