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!

On spoon theory

As I sit here, I'm exhausted. My body feels weak, my mind can't focus, and I'm struggling to form full sentences. In fact, it took three goes just now to type 'sentence' properly. My eyes are drooping, and right now, any horizontal surface looks great for sleeping. The best part? It's only 10:00.... in the morning.

A post on exhaustion and all the things that entails is just about all I can think about doing. I struggled to eat half my breakfast, I'm dreading summoning the energy to have a shower, and I haven't even got dressed today. Tea is going down pretty well, but caffeine doesn't even scratch the surface of this particular strain of tiredness.

In the EDS world, you'll hear a lot of talk about the 'three Ps': Pacing, Pain Management, and Physiotherapy. I'll be writing a post soon about the importance of all three, but my exhaustion this morning is directly related to neglecting the first 'P'.

I'm awful at pacing. Completely, utterly useless. It has a lot to do with my belief that I'm somehow invincible (which I'm not) or superhuman (which I'm also not).

I'm still young – 26 – and I have a habit of erroneously equating that age with energy and vitality. It's no wonder I do that, though, because when the rest of the world makes that assumption about you, you can't help but have that assumption rub off on you. Why can't I go out and drink with friends? Why shouldn't I make that 2 hour round trip on my Sunday off?

I'll tell you why: Spoon theory.

If you've not heard of spoon theory before, I'll simply point you to the original, as conceived by Christine Miserandino, who has Lupus, another invisible illness. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

As Christine so deftly writes, “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.” That is the essence of spoon theory.

I've learned shortcuts I can take to preserve my spoons as much as possible. On days when I have more spoons available to me, I spend a few hours making and freezing as many portions of food as possible. Then, on days when I can barely make the journey back from university with my eyes open, I can throw a portion of healthy, home-cooked food in the oven without chipping into tomorrow's spoons.

Another shortcut is the miracle of dry shampoo. I have long, thick hair, and washing my hair involves 10 extra minutes in the shower, followed by doing battle with the hair dryer. A quick blast of Batiste (a British dry shampoo brand, but Walgreens stocks it in the US) allows me to save a spoon for something else later that day.

But sometimes, I throw caution to the wind. I'm in my twenties, and there are days when I rebel against my limited spoons, where I turn a deliberate blind eye to pacing. Yesterday, I had the good fortune to attend an invite-only industry event for my university. I rest up the day before, got an early night, and I had everything laid out, ready for the morning. Despite my efforts to prepare, spending 6 hours on my feet, talking to industry professionals who were there to view my work, and the sensory overload that accompanied all of that left me sore, exhausted, and 100% spent. I took a cab home from the event, and immediately crawled into bed. By 8pm, I was falling asleep, nursing a weary body and aching head. Meanwhile, my colleagues were all still up and at 'em as the event turned from industry preview to launch-night party. 

All I could do was marvel at the Instagrams and Facebook posts rolling in from those I knew that were still there. It was a painful reminder of the impact my chronic illness has on not only my body, but the opportunities I'm able to enjoy. 

As Christine says, “Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.”

So here I am, 10am on a Tuesday morning. I already used most of today's spoons yesterday, but I have to somehow muster more energy for a meeting across town later today. What I do know is that having the language to understand and communicate these things has been helpful to me... it'll just take some time to iron out strategies to cope with the limited spoons I have each day.