Showing posts with label zebra. Show all posts
Showing posts with label zebra. Show all posts

Wednesday, September 2, 2015

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.

Friday, January 23, 2015

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