On coping psychologically and understanding your ellipses...

I've been thinking a lot lately about the incremental changes I've made to my life since my decline began a couple of years ago. After having been severely affected by my EDS during my teen years, then emerging into adulthood with my symptoms subsiding, age has caused a second wave of EDS to come creeping my way. As an undiagnosed teen, I was scared by how my body seemed to break down and buckle at every turn, but as an adult with a matured sense of self I can tackle this new wave with a renewed perspective.

I have a HEDS/CEDS combo, and I was diagnosed in January this year after over a decade and a half searching for answers. I feel I still have youth on my side at 27, but in the last year or so I've had to really knuckle down and make some hard decisions and big changes to my lifestyle. At the time, every decision has felt like submission to EDS, but as I go along I've been making peace with those choices. 

I feel my EDS is mild in presentation, with daily subluxes, and dislocations only a few times a week. I don't rely on pain medication, not because I don't live with pain, but because I used a lot of pain meds as a teenager purely to get myself out of bed. These days I have somewhat of a psychological aversion to them. Codeine is my fallback, but to be honest I take them on really bad days once every few weeks, max. I have a huge (and growing) collection of braces and supports that I can reach for when my joints need some help, and I use those daily on an as-needed basis. Often I forget that I don't have boundless energy, and flop into a spoonless coma-like state to recharge. One day burning through spoons can equate to days spent lolling around uselessly, so pacing is definitely a skill I'm still seeking to perfect (for more on spoons, see my previous post!)

I definitely count myself as fortunate. I know what it's like to be bed bound for weeks, months, years. I know what waking up breathless in the middle of the night because my diaphragm collapsed is like. And I count my blessings every day that with a few measures, I can live my life in relative normality.

For me, dealing with EDS is as much about finding tricks and aids that help me get by on a physical plane as it is about coping on a psychological plane. One of the weird facets of my EDS blindsiding me at the age of 12 was that I knew I had to grow up exponentially quicker than my peers. It was a very conscious realisation, and it helped me understand what I was going through. A child shouldn't have to be so acutely conscious of their own childhood in that way, but I knew that what I was facing was going to require maturity far beyond my years. In this way, since the day I understood that, I've been very self aware of personal growth, and how important that is in dealing with EDS. EDS isn't something that happened to me, it IS me, but it does not define me. That's where I'm at now.

I still go camping... though a trip to the chiropractor is always required straight after. I still go on hikes... but I wear the most supportive boots and stop often, even when it's only a mile. I can still cook and clean for myself... I just need to save up some spoons first, and know that I might be useless for the rest of the day afterwards. I am a full time student that takes on extra work... and often that means foregoing a trip to the pub after class with my classmates.

Surviving and thriving with EDS is all about those ellipses. More than that, it's about embracing those ellipses. What comes after the ellipses isn't indicative of failure, it's just adaptation. Other's might not have the same ellipsis, or they might not have an ellipsis at all, but that doesn't matter. So what if yours might read "I can make it to the top of the mountain... in a wheelchair", or "I keep my house clean... with the help of a professional cleaner". We EDSers have to be many things (strong, feisty, compassionate, resilient), but most of all we have to be adaptable. I think coming to this understanding is the most valuable part of my arsenal yet.

On our connection to the Earth and ankle health

Though rather an odd combination, the two things in the title of this blog post - ankle health and our connection to the ground on which we walk - has been my preoccupation in the last few weeks. 

For one thing, I flew back to San Francisco three weeks ago, and the upheaval always gets me thinking about my connection to the land in one way or another. 

There's another thing that, in the past year or so, has also made me think about that connection. In the same way that I muse about my voice and my use of language to express myself when my jaw dislocates, I think about my relationship with the ground I walk on when something goes wrong with my ankles or my feet. 

As a child, I was always barefoot. As an adult, I maintain that my emotional wellbeing starts with connecting back with my environment, rooting back into the world on a very physical level. The root chakra has always been an important symbol for me, and I went as far as getting a very elaborate tattoo on my ankle that represents my vision of nature and beauty. Connection with Earth runs pretty deep for me.

There's another thing that, in the past year or so, has also made me think about that connection. In the same way that I muse about my voice and my use of language to express myself when my jaw dislocates, I think about my relationship with the ground I walk on when something goes wrong with my ankles or my feet. 

Let me elaborate.

In 2013 I took part in a gruelling 70 mile trek through the Jordanian desert mountains. It was an expression of movement, and a challenge I made to my body and its abilities. If I could rise to that challenge, I could do anything. It's the story I've told myself ever since my body started playing up when I was 12. 

Me, standing at the highest point on the Jordan trek

I got through the trek, but it had serious lasting effects, predominantly in my feet, although it also flared up an agonising bout of hip bursitis after scaling a mile-high mountain to reach the plateau on the second day, which I then had to push through until we reached Petra 3 days later. 

After that trek, my ankles started to regularly lock up, my toes develop excruciating pains almost every day, and I can't feel the tips of my big toes at all. On the face of it, my desire for a connection to the Earth, my challenge to myself, backfired. I have the best memories of that trek, but it left an indelible mark on my body. Another scar, another war wound. 

Thinking about those things underlines for me the importance of my ankles in my expression of movement. I could very easily have taken my body's reaction to that Jordan trek as a cautionary tale - don't spend five days hiking up enormous mountains lest you never feel your big toes again. The flip side of that thought is that I shouldn't engage in those activities, I shouldn't express myself through movement. For some, that's not possible or desirable, but for me, it's incredibly important. Denying myself that expression is a denial of part of myself.

So on to ankle health.

To ensure that I can live the way the my heart and mind desire, maintaining healthy feet and ankles are of paramount importance. I can keep moving with a dislocated shoulder, but dislocated ankles are a deal breaker. I've learned to seriously respect my ankles since that Jordan trek. They're both total divas, playing up at the first sign of trouble. While on holiday last week, for absolute no discernible reason, my right ankle developed flexor hallucis longus (FHL) tendonitis. 

At the time, I had no idea what the FHL tendon even was, and had no idea why suddenly I couldn't move my right ankle without a sharp, breathtaking pain emanating from my ankle. All I knew was that I had to nip it in the bud ASAP. It was a reminder that my body can pull the rug from underneath me whenever the whim takes it, and that we EDSers have to respect that, in the same way we must respect Mother Nature's ability to give and destroy. 

As my fellow EDSers know, if there's something that the internet doesn't know, it's probably not worth knowing. When I got back from holiday, my research for the cause of my ankle pain began. Within 15 minutes, I tracked down the cause and the current medical guidance on resolving FHL tendonitis. Turns out my instincts to rest and ice had been right, but it was good to know for sure I was doing the right thing to heal my body.

A week later, and I could once again move my ankle without the acute pain. And my first thought? To go for a walk. Up the side of Mt Sutro. Of course.

My neighbourhood to the lower right, with Sutro Tower sitting atop Mt. Sutro in the centre.

You might think that unwise (and you're probably right), but for me, it was asserting my freedom to move, my desire to express myself through motion. I have a killer pair of walking boots that support my ankles and I took breaks and stretched where I needed to, and made sure to listen to my body along the way. 

I also have a new weapon in my arsenal in protecting my ankles, particularly my oversensitive sinus tarsi and my extremely slack tendons and ligaments. 

Ultimate Performance Neoprene Ankle Support with straps

They are ankle supports that actually mimic the criss-cross kinesiology taping method that I use when my ankles are particularly painful. I took delivery of them yesterday, and I'm already loving them. Essentially they have the action of cinching in and supporting the joint where the connective tissues are unable to perform this function themselves. It means that when I'm in bed or sitting on the couch with my feet up that my ankles don't lie at the end of their excessive range, which puts serious pressure on the sinus tarsi, aggravating my ankle issues.

My legs up on the couch, before and after

Sure, the aids and tricks that I use to protect myself don't stop the bad days from happening, but if it means I have just that bit more confidence to keep living my life the way I want to, then I'll do it. I know the likelihood that EDS will continue to take away my ability to do the things I enjoy, but using things like these supports means I can slow down that process to some extent by protecting the joint.

On slowly becoming an exoskeleton

One thing about EDS is that we can never take the status quo for granted. The ability to walk on a Monday might be ripped out from under us on a Tuesday, Wednesday might be a great day for our joints, while Thursday is some kind of living hell, our joints stiffening up with a burning pain coursing through our bodies like wild fire. Last night I had the audacity to wear shoes that aren't up to my usual, sensible standards, and the result was crippling pain in my toe joints so painful I ended what had been an otherwise wonderful evening at the theatre in tears as I stood waiting for the bus home.

Last night, as I waited for the bus, cursing my shoes, I decided to write today's post on that very subject... all the aids I've found that help me get through the day. As I listed out in my mind the aids I'm about to tell you about, I realised that what I'm essentially about to tell you is how to become some sort of exoskeleton. And that sentence, dear reader, is at once terrifying and sort of awesome. 

Wikipedia tells us that an exoskeleton is "the external skeleton that supports and protects an animal's body". With kinesiology tape, ring splints, and bracing, it's easy for an EDSer to accumulate a myriad of things that support and protect our fragile tissues. Here are the things I've found so far to be the most helpful.

Ring splints


I'll kick off with these beauties, because frankly, they've revolutionised the way I write. I have always loved writing, but never had great stamina for it. Exams were the worst - I assumed that everybody dreaded exams for the same reason as me... the pain. It was only into my Masters degree that I really understood that nobody else suffered the same pain as me in these high-pressured fast-writing environments. 

I figured I'd give a ring splint a whirl, just on my right index finger, which normally bends backwards to a right angle when I press down on a pen or pencil. The effect was instant! Suddenly, my handwriting (which used to change in style every paragraph or so as I repositioned the pen to find a comfortable writing position) was consistent, free flowing, and painless. I recently had to write for an extended period without my ring splint and the pain was immediate.

I personally ordered my splint from a UK based independent trader who goes by the name Zomile. If you fall between two sizes (she uses the Oval8 sizing) I'd recommend opting for the larger size. I ended up getting mine resized at a local jewellers, which allowed me to get a truly custom fit. Honestly, her prices are so low (compared to most retailers) and the ring will last a long time, so I didn't mind spending a little extra to get it right. I'll definitely be returning to her if I need a replacement or any additional splints as time goes on. If you're not in the UK, then there are plenty of places you can look.

IMAK Smartgloves and Wrist Wraps

After spending a summer on my laptop while back in the UK, I developed significant pain in my wrists, and a now-permanent vulnerability seemingly related to the pisiform bone (the boney nodule that sticks out of the little finger side of the wrist). Unfortunately, typing on a laptop forces the wrist into a position that puts a lot of pressure through this joint, and three months of working on a laptop has doomed my wrists to a lifetime of clicking, cracking, and dislocating. 

Enter the IMAK Smart Glove. These fellas are pricey at around £20 per glove on Amazon.co.uk, while Amazon.com sells two for around $35 (prices and links correct for May 2015). These gloves have a soft foam splint for the top of the wrist, and what I can only describe as a little bean bag to support under the wrist, which has the dual effect of massaging and cushioning the pisiform bone. Again, if I ever have to type without the gloves aiding me, I find that I tire so much quicker, and I pay the price for the next few days.


The other IMAK product I use pretty regularly is the 'Wrist Wrap'. I only wear these when my wrists need a little extra support, which is usually just when I'm hanging out on the sofa watching telly. For some reason, this is when my sore wrists bother me most, and the beauty of the wrist wrap is that is not only keeps my wrists warm (they're worse for cold) but I can choose whether I want a lot of support or just a little.


Kinesiology Tape (aka 'elastic therapeutic tape')

Another life-saver! My osteopath introduced me to this stuff. He uses a brand called Tiger Tape, but there's also KT Tape, Rocktape, and various other cheaper brands popping up. My personal favourite at the moment is Rocktape, but the brands I named above are all pretty much equal in quality. Not all brands are good quality though, so exercise caution when choosing a cheaper brand, and be prepared to spend a little more. The adhesive quality (i.e., how long the tape stays put, and whether it causes irritation) and the quality of the fabric's elasticity are the important things to note. 


For best taping practice, I use either the method that my osteopath taught me, or I'll research methods online. Often, there are multiple ways you can tape a joint, and it can be a bit of trial and error to find what gives you support. Trust your instincts - if it doesn't feel right or feel like it's helping, it probably isn't. 

The things I commonly tape for are my ankles and knees, and plantar fasciitis. I have super floppy ankles and sometimes the weight of the bed covers is enough to throw them out for days or weeks at a time, so I tape them up to limit the range of movement and give them a little flexible support. It also means I can avoid bracing certain joints. While it's not a total alternative to bracing, the longer I can use kinesio tape, the longer I can avoid the muscle weakening effects of full on bracing... sounds good to me! 

Either way, it can be a great help for supporting vulnerable joints, and especially helpful in limiting hypermobile ROM. Both a prevention, and a cure. What more can you ask for? I would certainly recommend you talk to your physiotherapist before using kinesio tape, though. Best to be safe

SI Belt

This gizmo was given to me by my osteopath. He noticed early on that my hips were very unstable, causing me a myriad of issues. He knew I was about to go backpacking, so he tried me with this belt, and the effect was remarkable. Suddenly I went from feeling like I was walking through mud, to walking on air. I never knew walking was supposed to feel that free-flowing! It works by artificially providing the support that the pelvis is meant to naturally have. Again, maybe something to talk to your physio/osteopath/chiropractor/whatever about.


TMJ splint/night guard

One of my big EDS issues is a dislocating jaw and teeth grinding. My dentist, concerned about the damage to my teeth, got me fitted with a night guard. I have to admit, I'm prone to throwing it out in the night, but any time I can sleep with this in, the better. You might be wondering if you can just use a cheap sports mouth guard instead of a pricey custom-fitted night guard. This article explains the difference and why you should use each for its designated purpose.


Other aids

Along with things that I wear to help my joints out, I've also discovered a few other bits and bobs/tips and tricks to give my joints the best chance possible....


Not carrying a bag! 

I have some classes that require a LOT of supplies, including things like tools. Wheeling my school supplies has become the norm for me as a result, and though I initially felt a bit daft showing up wheeling a backpack behind me, I wouldn't have it any other way now.
 There are a load of good quality wheelie back packs out there, and they have the benefit of having straps for when you absolutely have to put your pack on your back. 

Vertical mouse

I was unsure of whether the vertical mouse would be a good fit for me, but now I wouldn't go back to a regular mouse! I made the switch because I found I was getting increasing wrist pain from the twisted forearm position a normal mouse requires. After a lot of research I found the mouse that seemed to best suit my needs, weighed up with the reviews I found, was the 'Evoluent VerticalMouse'. I have tiny hands, despite my 5'8" build, and the Evoluent website said that for my hand size I should go for the 'small' version of the mouse... they were right. It's perfect! Trust their size guide.


Wheat bags

Hot water bottles are useful, but I prefer the wheat bag for aching joints these days. For starters, it holds its heat for less long, which forces me to get up and reheat... A nice reminder to not get 'set' in position and keep the joints gently moving. More usefully, though, is the ability to wrap the wheat kernels around the joint you're treating, bean-bag style. I like to put a few drops of lavender on my wheat bag every so often, which is nice and relaxing. I'd also recommend putting a glass of water in the microwave with the wheat bag when you heat it, to keep the wheat from drying out too much. Not all wheat bags say this on the directions, but I do it anyway and it seems to do the trick.


Massage balls

Yet ANOTHER gift from my wonderful osteopath! This soothes and massages aching muscles. To get into my trapezius muscles I sandwich the ball between my shoulder and a wall and roll it around that way... instant relief!


Lastly... FOOTWEAR!

This is so important that I'm not sure why I left it til last. Good footwear is, of course, important for not just EDSers, but for everybody with feet, but it is especially important for us. I don't need to lecture you on this, you already know, but I wanted to give a shout out for the footwear that has served me the best over the years.... FitFlop. This British footwear brand has foot health at the core of its business model. By creating a sole that disperses the pressure through the whole sole of the foot, they ease the pain that comes along with the EDS propensity towards standing intolerance and joint pain through the whole foot. The soles they created also ensure that your foot is in the optimum position for supporting the whole skeleton, particularly the hips and spine.

I have pretty much exclusively worn FitFlops for my day-to-day footwear for around 5 years. I have flip flops, shoes, boots, pumps.... Pretty much the whole range. I really notice the difference when I wear non-FitFlop shoes now, and I pay the price in the days that follow. Again, FitFlops are pricey (isn't everything EDSers need in order to live a 'normal' life?!) but I can attest to the fact that if you look after them, they will last you YEARS. My longest lasting pair is 4 years old and have seen some serious wear. I dread the day they give up the ghost!


So there you have it. 

I'm sure as time goes on, this list will get longer, and I might find myself doing a follow up list down the line, but these are my top picks. I'll be doing other lists over the next few months, listing out my favourite naturopathic pain relief methods and the best nutritional supplements (and the evidence that supports them). Stay tuned!