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 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. 

On GI problems

Seeing as we're fully acquainted now, with my first post detailing the good (lovely soft skin) the bad (dislocating jaw) and the ugly (ahem – gastrointestinal issues), I thought I'd dive right in and talk about the shit us EDSers have to deal (pun fully intended, and they're not stopping any time soon!) with in the toilet department. Once we've got this out of the way we can all breathe a sigh of relief! Prepare yourselves, and stay tuned for the giveaway at the end of the post!

Put simply, we have a bum deal (see?) when it comes to issues of the gut. All the symptoms of Irritable Bowel Syndrome (IBS) are present and correct, but it doesn't stop there. We're talking issues along the length of the GI tract, from input to output, as it were. Let's start from the top:

G.E.R.D aka, Gastroesophageal Reflux Disease

For as long as I can remember, I've had what I could only ever describe as a 'burny throat' feeling. It's intermittent, and I've never pinned down the trigger. It seems to be random, so far as I can tell, and a bout of it can last anywhere between a few hours and a few days. In essence, it feels like I have a toxic fireball stuck in my throat, and no amount of swallowing, drinking, or eating will help the discomfort pass.

Finally, at the appointment I had with Professor Grahame at the St John St Elizabeth Hospital in London (the appointment that saw my diagnosis of EDS finally made official, which I'll tell you about in an upcoming post!), I was able to describe the burny throat feeling to him. He instantly said “Yes – that's Gastroesophageal Reflux Disease – perfectly common with EDS”.

Essentially in EDSers it's caused by laxity in the oesophageal sphincter, meaning the strong acidity in the stomach isn't kept in its place. So now you know!

Early Satiety

This is, I assume, because of the GI dysmotility issue (see below) that we have, and it appears to be par for the course. Like most EDS issues, I had no idea it was a symptom until I started researching the seemingly never ending list of crap (there I go again) that we put up with in our daily lives. It's always the small things that surprise me the most, and usually things I thought were completely normal. Let me tell you, finding out that half your body functions are far from completely normal is a trip.

Anyway – early satiety, or feeling full after eating very little, is a symptom, it turns out. My mum, my sister and I have all been this way our entire lives, much to the disdain of my father who seemingly has the opposite issue. Family meals usually involved the three of us eating half of what was on our plates, while my father happily polished our plates off for us after wolfing his own down.

Gastrointestinal (GI) Dysmotility and IBS

GI Dysmotility, for EDSers at least, is a clear cut case of faulty collagen, as collagen is instrumental in the biomechanical properties of the GI tract. Our intestines simply don't move the production line along as they should. This can also lead to bloating, which is unfortunate. Nobody likes feeling bloated, but it really is the least of our problems! Then there's the irregularities of our bowel movements (we're well and truly in too-much-information territory here... sorry guys) which is closely linked to the IBS symptoms we present with, including inconsistencies in 'output', swinging like a pendulum between constipation and diarrhoea, and intolerance of food groups - in my case dairy. Which sucks, because I love cheese.

The GI problems are also linked to dysautonomia, which I'll talk about in another dedicated post. There is a lot to say on the subject of EDS and FGID (Functional Gastrointestinal Disorders), and I'll happily let the pros tell you all about it here.

I've never taken prescription medication for my IBS symptoms. This is in part due to my personal brand of stubbornness... some kind of attempt to be super human and rely only on home remedies and lifestyle changes to combat most ailments. I didn't even get myself antibiotics for the strep throat I suffered before Christmas, a decision that came back to haunt me when the bacteria ended up hitting my chest pretty hard on New Year's Day. Miserably, I sloped off to the doctor, who sounded my chest, slapped me on the wrist for not going in earlier, and packed me off to the pharmacy with a prescription for Clarithromycin.

Those antibiotics led me to a discovery, though. After my round of Clarithromycin was over, I started a round of probiotics. My tummy-woes were bad enough without the antibiotics killing off all the good bacteria in my stomach!

But more than simply replacing the good-gut-flora lost after taking the antibiotics, the probiotics seemed to help with everything, particularly the bloating and . The IBS symptoms appeared to subside, with the probiotics even helping with the ill-effect of eating dairy cheese (my dietary nemesis).

In the past week, I've been trying a new brand of probiotics called Microbiome Plus+ GI. I've tried all manner of probiotics, including BioKult, Biotic Balance, and straight-up Acidophilus.

I'm a week in, and so far I'm fairly impressed. When they arrived, I was a little alarmed at the size of the one-month-supply package. There are four boxes, each containing a week's supply, and each of those boxes is larger than the entire one-month supply box of my previous probiotics. Part of the reason for this is that the dose is twice-daily, and it's not just a probiotic you're taking - they also give you a prebiotic caplet to take at the same time. Each box contains two blister packs, one for AM and one for PM.

The amount of good bacteria in Microbiome Plus is lower than some other brands I've tried, at 3.5 billion cfu of Lactobacillus Reuteri. For comparison, the last brand I used (Biotic Balance) has 5.8 billion cfu of Lactobacillus Acidophilus, 5.8 billion cfu of Lactobacillus Rhamnosus, 5.8 billion cfu of Bifidobacterium Longum, and 2.6 billion cfu of Saccharomyces Boulardii. Whether that brand is simply overkill, or if Microbiome Plus is not quite up to the mark, I'm not sure - it's a different strain in Microbiome, and I'm not up on my bacteria knowledge enough to know what the different strains represent!

What I do know is that Microbiome is up to the challenge of eliminating the post-meal (especially post-dairy) bloat, which has caused severe pain in the past. It doesn't seem quite so robust in terms of regulating output, but that's only when comparing it to the previous super-charged probiotic. On Microbiome, I'm still leaps ahead of where my body would be if I were on no probiotics at all.

Another pro is that unlike some probiotics, you don't need to keep it refrigerated, which is good for travelling. I decided to label each day's tablets, just to keep track of the twice daily dose, which has to be taken with a meal. The size of the tablets doesn't bother me, but I know we're all different when it comes to that - my Mum would probably try and chop the prebiotic tablet in half!

I have three one-month supplies of Microbiome's probiotic to give away this week. If you want to give these probiotics a go, email jessie.estella@gmail.com and tell me the three awful puns I dropped in to this post. This one's for US-based readers only, I'm afraid, as the coupon-codes I've been given are valid only for contiguous US amazon.com accounts.

What is EDS?

If a tree falls in a forest, does it make a sound?

I've decided to write all this down... to keep all my thoughts in one place, here, so that other people – people like me - might someday find it. Maybe this will be a useful journal for others, maybe I can impart some knowledge, or maybe this journal will fall on deaf ears in the abyss of the internet, like the tree in the empty forest. So here goes:

Hi! My name is Jessie, and I have Ehlers-Danlos Syndrome: Hypermobility type. EDS3 or EDS-HM or HEDS for short. Yeah, it's a mouthful.

I must have read a million blog posts that start that way now, because like most people with EDS, I'm on a constant quest to consume all the knowledge I can about it. It's so misunderstood by the medical profession that Professor Rodney Grahame remarked to me that EDS patients are often better experts than the medical practitioners they encounter. There's a big online community of EDSers out there, and for good reason: we make up a surprisingly large proportion of society, with 1 in 5000 affected by this particular heritable connective tissue disorder (HCTD or HDCT).

We are also such an active online community because we are so engaged with our own self-help and health care. With the medical community allowing it to go unrecognised and under-medicalised, telling EDSers that we're hypochondriacs, imagining our condition, or making it up, we end up turning to one another to seek advice. We take charge of our invisible illness, because we've so often been failed by the 'professionals'.

I say 'we' with such broad brushstrokes because in every single personal story I've ever read, I've yet to find one that tells of a smooth, bumpless road towards a swift diagnosis. On the contrary, it's a long, arduous, exhausting mess... not even a road at all. It's a dense forest in the wilderness with no way-finders. You stumble, blind, trying to find your way out of that forest, never able to see the wood for the trees.Sound familiar? If you've got an invisible illness, you'll know the exasperation well.
So what is EDS? If you're here reading this, you'll probably know the answer to that already, and there are many lists of EDS symptoms out there on the internet (don't read the Wikipedia one – it's incomplete and a bit of a let down).

The most important thing I can tell you in terms of defining EDS is that it occurs due to a genetic mutation in the connective tissues. I've heard it said that our 'blueprint' for collagen is faulty, which is why there is no cure for EDS, and no supplement that can help EDSers... no matter what building blocks we provide our bodies with, we will never be able to make collagen the same way that the majority of the population can. Normal, healthy collagen is robust, strong. In EDSers, the collagen is fragile, and vulnerable. Think of us as an old, overstretched rubber band at the back of your desk drawer, while the rest of the population are fresh out of the box.

Instead of giving you a complete diagnostic list (HMSA, EDNF, and EDS Awareness have great resources for that information) I'll list the symptoms of EDS-HM that I experience. Each EDSer is different, and presents in different levels of severity for a number of different reasons, so take this list for what it is: a laundry list of my personal experience of EDS.

Musculoskeletal

• Hypermobility of joints in most joints of my body

• Subluxations in ankles, wrists, shoulders, knees, cervical spine, SI/hips and jaw (regularly)

• Dislocations in jaw, knee, ankle, shoulder (less regularly)

• Disc degeneration in my spine from the age of 15

• Crepitus (chronic spontaneous cracking of the joints)

• Arthralgia (joint pain)

• Myalgia (muscle pain) and myofascial pain

• Susceptibility to bursitis

Skin

• Poor wound healing

• Spontaneous bleeding

• Easy bruising

• Hyper extensibility

• Velvety, doughy texture

• Translucent, can see veins all over my body

• Lots of stretch marks (including in places people don't usually get stretch marks!)

• Atrophic scarring

Gastrointestinal

• GERD

• IBS

• GI dysmotility

• Early satiety

Dysautonomia

• Postural Orthostatic Tachycardia Syndrome (PoTS)

• Inability to regulate body temperature

• One sided sweating

• Raynaud's Phenomenon

• Blepharitis (dry eyes)

• Brain fog

This list might not be exhaustive, mostly because of that pesky last symptom: Brain fog!Some of my skin symptoms suggest overlap with Classical EDS (formerly types I and II), and there is a genetic test for this that I can't afford to have done. The outcome of that test is purely academic, as the 'treatment' remains the same.

Jessie x