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.
Tuesday, September 15, 2015
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.
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.
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.
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.
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.
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 |
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 |
 |
| My legs up on the couch, before and after |
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