Sunday 16 August 2015

Hey! If the universe really is infinite in all directions, then I am the center of the known universe, and so are you!


Hello from Vancouver!
SPOILER ALERT: this is all about me.  Me Me Me Me Me Me!! My favourite topic. Heh. Yep, and even better? It's up front and personal.
Velopalooza 2015 Pop Up Performance ride - the bellydancing stop
To you, my 100 cherished readers, tolerant, open minded, patient and gorgeous supporters: Thank you for being you, and for being here for me. Thank you for your personal messages, and for your consistent readership, and for your kindness and generosity. Um and to whomever keeps sending me those lovely, lacy little ditties? Thank you enormously! It's just that I'd need to see a certain type of physician on Harley St in London before I could ever hope to fill those particular cups, much as wish to. And to all of you: My God,  I've really missed you. I fell apart for a bit there. (Get it? Fell apart? connective tissue issues? Heh heh. I'll always appreciate my sense of humour even if nobody else does!) Above all, your sweet steady little stream of clicks and likes and shares helps enormously. Thank you. You rock. So.... (she says in her best Jewish grandmother tone of voice) "How have you been? Have you done anything amazing with your summer?"


I spent a fair bit of time at the races during the early part of the season.


I raced and I trained and I trained and I raced.

My happy place. This is way better than drugs. And that's me, third from the left.
                     I racked up enough points that I definitely qualify to register in cat 3 next year.

                                                                    Oh, and this:

Woooo hoooooo! 2nd overall on the Vets ride!!

I was pretty chuffed with my progress this year, and believe it or not, I was doing everything I could to minimize my risks on the bike. Seriously. I even left races and rides if it got a little sketchy or if I was feeling off in any way. I missed a lot of great miles with the Vets that I would have fought hard to stay in for last year, just cause I knew the consequences of a mistake at those speeds. Saved myself grief a few times, for sure. I was really happy to be doing what I love, and I was thrilled to be writing about bikes and cycling for work, too. Sounds perfect, right?  In theory.

I almost didn't care that nobody actually likes me.


Why can't you post spokeNscene on Reddit, for example? Hmmm? You can find my legs on websites all over the place, but I wrote to a couple of them and nobody even bothered to answer back. So lots of folks like my legs, but you won't find a lot of people talking about spokeNscene, nor asking about the bicycle enhanced lifestyle that made those legs happen. People are so strange. But then so are the Gods we so happliy worship.  Those damned deities have a bold sense of humour, that's for sure! Over the years, I've heard their laughter again and again, and I can most definitely hear it now. It is ironic. As strong and powerful as its muscles are, this body of mine is even more vulnerable and weak on the inside.

It's my fault. I neglected the bouncing for decades and now that mistake has come home to roost. Never mind. I never knew... and it's ok anyway. I can fix it, and maybe quickly if I do it right. I gave up alcohol. Well. Almost entirely. For years I consoled myself that though I can't have coffee or chocolate I can still drink a glass of wine with dinner. Very funny. My impact-free lifestyle has made me much, much more susceptible to fracturing than most people. Bikes have been my wheelchairs for many many years, and suddenly (or so it seems) I am ridiculously fragile. That No Impact EDS lifestyle is having a huge impact on my overall health.  Yes, I have broken again, this time a collarbone and a rib. And at the same time, my immune system is weakened, almost non existant. It's that I'm ... well... falling apart. (Cue shingles and months of antibiotic use to fight a series of infections. Yuck.) The Gods are laughing cause as much as I am fired up and ready to advocate for cycling safety and infrastructure expansion, my body instead has me laid up and waiting on healing.


You're thinking that I am a klutz, a spaz, and just generally, ridiculously uncoordinated, and you're absolutely right. But it's so much more than that. My body has gone into full meltdown.

And I object!! This is not Who I Am! I'm mutarded, for sure, but I'm strong! Healthy! Fit!! I never catch a cold, nor the flu, I haven't called in sick in many, many years, even though I am and always have been vulnerable to all of the little things that most folks don't bat an eye at. At 16, a staph ulcer erupted and left a purple heart scar on my left hip. Staph is in soil and doesn't affect most people, but I have had those flesh eating, skin melting infections a few times. Very strange. I catch  baby diseases like hand foot and mouth. I have an anaphalactic reaction to chocolate or drink coffee, and that's just Not. Fair. I mean, come on!


Connective tissue is central to healthy organs and the vascular system, too. It's not all musculoskeletal, though it's easy to see how that system's health and wellness is dependent upon strong connective tissue. This article about Caroline Smith will tell you a little bit about what it's like to live with EDS, and how thoroughly it can affect every aspect of a person's life. Everyone with EDS has neck issues. Many of us require fusion of the vertebrae protecting the spinal column. I have herniated discs in many places along the spine and will most definitely require stabilization surgery of some sort sooner or later.


It's an invisible disability, but it is every bit as taxing as it would be if I were back in a wheelchair. I look very healthy, so you would never in a million years label me disabled if you met me off the street. Well, not unless you see me in a sling


or something,


or a neck brace or ski poles or some other form of body support. I am like half baked china. I crumble and break.


The internet has seen my arse all banged up a few times but nobody would ever, ever look at me and assume that I am disabled. Someone accused me of not understanding how serious a business bike racing really is. He meant it. I wondered if he could possibly understand how very well I understand the risks, and I tried not to laugh at the irony. He could never possibly understand how even a slight mishap can quickly become very painful for me.

Gratuitous ass shot. Daddy always said you have to play to your assets.
This photograph speaks volumes. It illustrates the principle that what doesn't kill you makes you stronger. I love that. It builds character. I am plenty strong, thank you kindly, and a colourful character, too. I train hard. I work hard. Seriously. I am committed. Dedicated. Passionate. I believe in pushing the red line as hard and often as possible, and I listen to and rest this vessel. I have to. I didn't have an x-ray taken for that particularly painful bump, (I've had 40 CT scans!) but I'm willing to bet that tailbone cracked. We weren't going fast at the time, but that doesn't matter. I have known a lot of pain this year. Too much pain. It has taken a great toll on my health and wellness. I do what I can to combat it naturally. (Naturally!) But now I am feeling unfit, and twenty pounds overweight, and so this is a good time to invite you, my peeps, along on a journey of healing, of purifying and cleansing, of shedding old toxic habits and renewing the body's ability to shine, to thrive.

Meditation gives you another perspective, whatever your situation.

I like to meditate, in stillness and in movement too. Every conscious breath counts, right? Wherever, whenever, whatever you're doing, it's probably a good moment to be conscious and aware. It's always a good time to be alert. Rare is that moment of pure, conscious awareness. It's good practise to meditate in a queue or waiting for an appointment, or at least it is for me, because those are the moments when I am most inclined to give in to ego, and become frustrated and out of sorts. It's surprising how quickly those moments add up; what a boon to have spent them in a moment's peace instead of that more self important state of stress and anxiety. If only I had the sage's sense of inner tranquility by nature, so that I wouldnl't have to wage an eternal battle with my big, fat ego. It's an ironic battle, that: the crusade for inner peace.

It's always appropriate to breathe deep into your belly, to relax and seek clarity. Always, and never is it more needed than when you feel you don't possibly have even one moment to spare for anything else. Time is the one thing we can't commoditize (is that a word?) perhaps because it actually is pricesless. Nobody likes to wait, right? That's what makes a long commute so soul destroying! (unless, say you're doing something you absolutely love to do as you're commuting. An avid reader might just adore the long train ride in to the city from Coquitlam, and this mutard loves a good ride first thing in the morning, any and every season of the year.) I don't actually suffer time thieves well, but anger actually suppresses the immune systems. Bikes rock because all of that daily travel time is also a moving meditation time, personal improvement time. I admire those people who handle their life's challenges with out that battle to get to calm acceptance. Adore one of em. You know, the kind of folks who quietly get on with doing what needs to be done, without swearing, or anything. Meditation helps with all of that lymph robbing anger


Certain people think that since I am fit, I am just putting it on. "EDS can't possibly be all that bad if she can ride like that, can it?" I actually overheard a family conversation in which this was the prevaling wisdom. That assumption is patently ridiculous, and never more so than when the Para Pan Am Games are happening.  Worse still are the people who think that I should stop riding, that it is too dangerous.  Sigh.

Any time you want to talk to me about the real danger on our roads, oh please yes. Let's. In the mean time, trust me, exercise is good for me and I do actually know what I am doing, Bikes are my mobility, doing away with them entirely is unthinkable, at least until someone can fix this mutarded genetic code. Bikes are so much more than active transportation and simple mobility. They are medicine. The enormous good they do for me is good for you, too. Don't knock it till you've lived it.

I wonder if people remember Olga the Magnificent and the things we learned about aging through her.  Fitness is the very cornerstone of my health and wellness. Ehlers is progressive and degenerative, and I have to do everything I can to battle the ravages of age.

It's how I fight back.


I battle unstable joints with stabilizing muscles. A wheelchair is already quietly waiting in the shadows. Well,  actually it's hiding in my bikes. but those bikes are also poerful medicine. Riding a bike stimulates the produciton of the happy chemicals you get from a good workout, And, they trigger the same chemicals as many of the prescription medications I am so often prescribed, too. I haven't yet suffered many of the worst aspects of the disease, (namely the episodes which involve internal bleeding and trigger the horrible seizures which are my mum's contribution to my interesting genetic combination.) because I learned to listen to my body's signals. I stay as fit as possible because I learned long ago that the fitter I am the better I feel. Serotonin, Dopamine, Endorphins, all of the brain's happy chemicals tend to flee the brain cursed with chronic and extreme pain. Riding long and hard is the best prescription for re-balancing the happy juice. I groove on that happy juice. Always have.

The honest to goodness truth is that I can't tell the difference between the high I feel from the combination of serotonin, dopamine, endorphins, and -hopefully daily!- oxytocin (wink wink nudge nudge:) that I get from a red-line workout, and that state of euphoria that makes oxyxontin such a dangerous street drug. They are one and the same reaction in my brain. I often experience extreme pain. I always have and likely always will. That is why I am so well aquainted with the various types of pain relief as offered by the western medical institutions, as well as by the naturopathic and homeopathic, Traditional Chinese Medicine, ayurvedic, herbal, and I even shamanic disciplines.

Dope
I actually see a pain specialist these days,  He and his team were very happy with and quite vocal about how well practiced I am at all of the various aspects of pain control. I am surprised that it isn't more common for chronic pain sufferers to learn these coping techniques. It's a survivalist thing. I have to keep it up. It happened organically. I have lived with EDS for a fair few decades now and have learned a lot along the way. I had to. Like I said, I have made a few misakes along the, for sure. But I learned fromm them.  I listen and pay attention to what my body tells me, because my life is on the line, and becaise the consequences are so incredibly painful. I remember the lessons. Fortunately the body doesn't remember pain, but there is a lot to gain in retaining the tricks to handling it. Pain speaks for itself, right??

Sometimes people ask if I am a doctor. I love that. Nope, I am the opposite.

I love doctors, though. and they usually quite enjoy me. Not sure exactly why, but I hear it all the time. My doctor actually thanked me one day he said cause it's always interesting when I come to visit. Never a dull day, he said and he sees a LOT of me. (This is the MD who practices a form of ND and truly heals me.) Perhaps it's because I am that strange and unusual rare condition they studied in med school, come to life. The geneticists who diagnosed me were delighted with my competitive cycling lifestyle, insisting that it is the best way I might have managed to delay the degenerative damage this damned condition has scheduled for my joints, discs, valves and assorted connective tissues.

I have very limited mobility off of a bike because of the damage EDS has already done to my spine, and my hips, but on a bike I can go forever, or so it seems. EDS is a ruthless task master, Just when I figured I had worked out the best balance of life, well, just then twenty five or thirty years of an impact-free lifestyle came home to roost, and suddenly I am too brittle deep down inside, and very fragile. Another challenge, another adaptation. Now I bounce every day, to build my bone density and repair my immune system. It's an important aspect of babble's health K.I.S,S,  (that's Keep It Simple, Stupid). Do you remember? I mentioned it last year... I have neglected the second aspect for far too long, but as a checklist the KISS list stands: Move, Bounce, Breathe, Purify, Love a lot, Laugh, and Sleep.



The only problem with the KISS list is that it doesn't address how to address the repercussions of NOT living well for a while. It isn't just the bouncing. I have been taking prescription medications of some sort almost continually since my big crash in June 2014. My body is not happy. Stressed and overweight and burdened with toxic substances. What a combination. I have a way to go before I feel as if I am on top of my game again, but at least I know how to get there from here. And every step of the way is an honour, a blessing. Every day above ground is a good day. Even a hotter than hades, hell-fire-infused, smoke-infested summers' day above ground is much better than the inevitable-for-everyone-eventually, six feet under alternative, right?

Living well is all I'm trying to share via spokeNscene. Sure, it's personal sometimes, but it's also inclusive.  If you don't like it, then join the club and just click away. You'll be in great company. Promise I won't take it personally, but I do think you're crazy, you're playing on the wrong side of history. It's good this way of living, good for you and good for your community, too. And again, I've already made almost all of the mistakes it's possible to make, and have learned by them. Ha! I know more than a person really should about altogether too many vices, but I also know the way to an honest to goodness great way of living. There is a huge difference between knowing and doing though. My life actually depends upon taking the best steps forward from here, so you know which path I am on. Please do follow along with me. Give it a go. It's fun. I promise. C'mon... you know you wanna.

big big babs, hitting the trail
Oh dear, this is a looooooong and rambling post. I beg your pardon for babbling onanonanon like that. I will create a few youtube clips in the next little while, so you can see how the mission is progressing, and so I can pass along my most favourite foods, and other various and assorted ways to create healthy habits. You can't imagine what a challenge it was to post that video, BTW. I am vain. I am pretty close to rock bottom right now, all big and fat and hurting and unwell, and out of shape, but the journey of a thousand miles begins with a single step, and nothing is going to get any better without some earnest effort, so here we go. I would love it if I didn't need to be lighter than I am now, but if I don't drop a few pounds, I am going to hurt even more than I do now. It's not that I am into that model thin, anorexic look, it's just that even five extra pounds adds a great deal of unnecessary stress to my poor joints. I really do fare better when I am as light as possible, without burning off any of that stabilizing muscle.


So... think about joining me on an adventure, will you? Let's see if we can't seek peak performance on the bike path to world peace. I will be back soon with a few of my favourite foods. Till then, keep spinning, and stay tuned. I'll leave you with a video of the whale we saw here in Kits a couple of nights ago, and with any luck,  we'll meet again soon.


63 comments:

  1. Babs - your perseverance is admirable

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    1. Thank you kindly. Truthfully, I'd have given up long, long ago except that I can't. :-/

      Big kiss. X

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    2. Glad to have you back in the blogging business. We may be few but we miss you - as evidenced by all the replies. The modern (so-social) internet can also be an isolating place.Sta bene.

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  2. vsk said ...

    Dang!! I missed first!!

    Lots a deep stuff, I have to re-read. I had a pin in my left knee. At least I still have the range to ride a bike.

    Yes!! We Care !!!!!

    vsk

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    1. Podium kisses anyway, and thanks for your support. :) XX

      I am absolutely no good at fasting, but I have heard from a couple of sources now that intermittant fasting is quite good for a person, especially for if they are trying to lose a few pounds. Someone actually got all upset with me for saying that I really do need to lose weight, and more than just a couple of pounds but it's sadly altogether too true. Apparently people do better at achieving a weight loss goal like that when they involve other people in their efforts, and especially when they go into it with friends. This is a heads up, that I am going to enlist your support in this mission. You don't have to join me on the journey, per se, but I do need your continued presence here, your acknowledgement of my commitment. I am probably going to continue to whine and complain about how bad it hurts and how much I am suffering, at least for a little while, but then it is going to get better. The momentum is going to kick in and I am going to be feeling like a whole new woman come Halloween. Chances are that you'll have tried a few new things on for size, too, and you'll be feeling happy, too.

      And then we'll celebrate.

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    2. Lol! And then I will finally learn to proofread before I click "Publish."

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    3. What happened to require that pin? Was it wear and tear?, accident?, or injury?... my jellyfish sized memory bank is tingling...I don't think we ever actually discussed the pin before. Or did we.??

      FB blurs the line makes it easy to know about someone quite intimately even though you have never actually physically met.

      Hahaha!! Oh dear. Not that I am suggesting that we had any sort of intimate relations on FB or anything. Heh heh. Heh heh. Heh.d
      Sigh. I'll just quit now, mkay?, before I do any real damage.

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    4. Yays for Babbles !

      Last September I managed down to 216 for a few minutes! hahaha
      There is a picture of me on a white Carlton with a friend of mine who is always bulb tan looking and in annoyingly good shape. Anyway I am wearnig my Brooklyn Velodrome Vintage Wheelmen tan jersey. I had a man baby bump! hahaha That was at like 245. Managed to 216 last Sept, I thought I could keep the weight off with upper body snow removal activities. But no. 245-248 again last January. only recently with the hot weather, I have able to bump to 235 and am at like 238 today. My body tolerates the commute and I need a good 40 miler on the weekends to make a good difference. Plus I am stressed at the sedentary work during the week so munch munch munch. Strategic Fast has its benefits tis true. You end up with more room inside to get rid of the junk hanging out. Then look at that, the shoelaces are easier to reach and I can get tools out of the crawl space without thinking i'm gonna have a stroke.

      The personal stuff is awesome! Keep on rolling!

      One day you will be in NYC and one day I may be out West but you will have to be on heavily loaded Bea Bike for me to even keep you in front of me somewhere on the horizon!!

      Can't weight, you can have a bad day or a bad patch but don't let it define the intermediate future. I am at the last notch on this belt and the smaller one will mean 42" goes to 40" waist. At least I feel my muscles are re-becoming the fatburning machines they were. I might even be able to keep up on a Snob ride! But baby steps ...

      vsk

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    5. I am steeling myself to do a fast. Three days would be ideal, but I have trouble with fasting. At least right now I don't have the training regimen which needs fueling, so there are no good excuses left. After one to three days of a fast, my plan is to avoid sugar and starches.

      I have long been on a mission to find the best seafood salad. Couple of times I thought I might have made it... I am trying to figure out how I can mount a camera in my kitchen to show you what I'm getting up to in there. We might just possibly may be moving in a month or two (keep your fingers crossed - it's a super duper cool house down at the beach!!) at which point it might suddenly become easier to share my favourite foods with you. Anyhoo. Tonight it's prawns, avocado, bacon (it's diet bacon, so one piece instead of two) salmon, cucumber, tomatoes, Macedonian and Bulgarian feta, steamed broccoli and sugar snap peas, grated carrots Walla walla or sweet onion, spinach and baby kale. Dressing is 2 tbs Mrs Balls' hot mango chutney, 1 tbs mayonaise or yogurt, 1/2 lemon juice, cilantro and lemongrass.
      OMG I love food. Do you cook? Have you eve noticed how good prawns taste when you saute them in bacon fat? I have. Might have something to do with my waistline!! But in my experience bacon doesn't pile the pounds on the way sugar and carbs do.

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  3. I've been reading for quite some time, but have never commented. I believe I found this spot through one of your comments on Snob's blog.
    I came for the bike stuff, I stayed for the interesting posts. I enjoy when people are just being themselves, even if they're "babbling on". Even though it doesn't seem that our politics may always coincide, I still read all of those posts, too. I'm OK with people having different ideas than me. Weird, right?

    Anyways, I'm glad you've posted again and that you seem to be on the mend. Sometimes it's nice to vent out to random unknown people to help get things right in your head.



    Wolf.

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    1. Thank you Wolf, for reading for commenting, and for your open mind. What a beautiful and rare human feature! I really did have a good whinge there, and yes. It did feel good. :)

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  4. I love this post Kerri! I'm very inspired by your story and your perseverance. I'm glad you are back. =)

    Do you see a naturopath by the way?

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    1. Thank you, my dear gorgeous girl. Funny, I was just thinking about you a day or two ago. You and your love of the solitude of riding, the alone time that recharges you so completely. I realised that while I adore the way that club rides push me, teach me and generally improve me as a rider, there is something magical about those early morning rides, just me, my mantras, the road and the moon... and speaking of which: a day or so ago, Your beautiful photography just popped into my mind. It was one shot of the water in particular, I think it was a lake, and there was a plant of some sort floating in the foreground. The post with the at shot was ever so eloquently penned It elucidaed your love of a solo ride, how it recharges your inner introvert so that you can go out and really enjoy the many social and more extroverted events and exchanges you attend. It was insightful. I hope young women all over the placeThank you for sharing that, beautiful Katy. You inspire me too! :)

      Yes, yes, yes do I ever have an ND!! Best of all, my naturopath is my MD's hero. Isn't that amazing? My ND is Hal Brown, at Integrative Healing Arts, and he is on the frontline of prolotherapy practioners. Hal often has doctors and interns at his side, learning how it is that he does what he does. My MD is an awesome sports physician. He has worked with elite, olympic athletes for many years, and he does prolo for me now, too. I am a very, very lucky girl, cause prolotherapy is amazing technology. Hal does prp, platelet rich prolo, as well as stem cell and T cell therapies, too, though I just do the sugar, B12 and procaine solution. ($$$)


      Hal did neural prolotherapy series on my sacro illiac nerve last week, a series of injections into the nerve all down the leg. OMG nerve injections = OUCH, but I was totally lame when I went in, and within 12 hours I could walk without a cane again. Still need hip prolo, but that was a brutal injury, and he made the pain there go away. Like magic, and no nasty side effects. That particular pain had kept me awake for days (it still wakes me) and even hampered my ability to ride, and while the impediment is still there in the joint, the pain from what he called an inflamed nerve has disappeared, and that is huge. I have never encountered an inflamed nerve before. Did you know that you can actually feel your nerves? I always think of them as so teeny tiny, like miniscule infrared lazer beams, but they are more like a cotton sewing thread. I could actually feel it when he showed me how to look. And I could most certainly feel it when he injected it over and over again All. The. Way. Down my Leg.
      Yes. I get wonderful results from naturopathic medicine, in truth. Much better than you'd expect. Dunno why, and I don't care, but prolotherapy in particular has improved my quality of life enormously. I have also had good results from Traditional Chinese Medicine, and in particular from a couple of incredibly talented a acupuncture practitioners. Wow. That stuff is powerful medicine too. I love Integrative Healing Arts because they have collected under one roof a group of some of the most talented practicioners I've ever met.

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  5. Welcome back, missed you. "You can find my legs on websites all over the place" (deservedly so). "Dope", nope, more like "Holy Cannoli dar Amos".

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    1. Oh bless. Thank you. :) xo

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    2. Um, and doper is as doper does, you are what you injest, and of course dope is for dopes.

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    3. PS 5,000,000 views is nothing to sneeze at. Just imagine if you had 5,000,000 dates in your life, that would be quite a few dates per day.

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    4. Yeah, it's crazy. Like that FB thumbs up thing on this page. My business friends are all like "OH MY GOD you should be selling something!!" It's crazy because for all the five million views and the nearly two million thumbs up, nobody wants to acknowledge the bike centric life that made those oh so click worthy calves. There really are only about a hundred people who actually follow spokeNscene diligently, and clearly of that hundred there are still plenty who don't love their bikes the way we the commentairat do. But it doesn't matter. Even though this little blog is small fry in the grand scheme of things it doesn't matter, because the message is catching on out there in the greater world. More and more people are using those bike lanes, more people are choosing to stop driving and start riding. I know a few people who've made the change just this past year or so, and that's what matters. :)

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  6. Glad to read you back!

    You've been missed.

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  7. bad boy of the north17 August 2015 at 16:01

    ms. babble....right here in your corner.and yes,you sure are a colorful person.that arse photo you posted is surely one way of showing it.you keep doing what you're doing.nice loooong post.it's probably really fun watching you go through security.take care ms babble.catch ya here and there 3167 cycling miles away.

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    1. Thank you. I love that you're there.

      Yes, when they say "well, it sure builds character!" in reference to having to deal with one challenge or another, I always sigh a little. I have plenty of character already. And I am strong enough, too.

      Hmm.... you could ride to Florida in 3167 miles, but that's hardly Northern. New York is 2400 miles from Vancouver. Maine? Are you in Maine? Or Boston? Or have you perhaps re-located to the wilds of Newfoundland?
      Perplexed.

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    2. bad boy of the north19 August 2015 at 04:10

      you're getting warmer....

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    3. Ah! So shall I say bonjour, then?

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    4. Ah! So shall I say bonjour, then?

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    5. bad boy of the north19 August 2015 at 14:14

      You can say it.......but i don't use it my everyday....but yes,you can say it....:)

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    6. bad boy of the north19 August 2015 at 15:51

      in the lower 48....close enough to have been on the gran fondon't.but close,travelling wise,to use bonjour!keep on writing.liked the writing on bike doctor....feel better,ms. babble!

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    7. Hmm... I have always wanted to spend a year or so getting to know Montreal and the landscape it inhabits. And I have long adored Manhattan, how lovely to be so close! What a great part of the world you live in!

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  8. Babs. So glad to see you back yet so sad to see you hurting so. I know you'll stay strong mentally, just need to get you back to being strong physically. Stay positive and focused. The 100 of us are here for you.

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    1. Thank you, kind sir. Yes, it sucks to be under the weather, but thank goodness for the tight community of cyclists I've met online and here in town. For years I felt isolated as well as unwell, but that's history. Now I know without a shadow of a doubt that I am not alone. It makes a whole world of difference. :) xo

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  9. Ms. Babble,

    SO good to have you back!!! You were sorely missed! Your post…well…you are as remarkably beautiful on the inside…as you are on the outside. I’m not worried about your physical challenges. All WILL be well, because you will make it so. That, is who you are. Love to you from California!!!

    Old timer

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    1. Thank you!! :)
      Love from my internet family and friends is the singular most beautiful development to come from learning to cope with this crazy condition. Your friendship and support really makes a world of difference. I hope one day we can all get together to go for a spin.
      Guess I should get on that Fondon't already!!
      peace and love xo xo

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  10. il Pirata est Mort18 August 2015 at 10:44

    Welcome home Ms. Babs.

    Every day we work out we bring a humble handful of sand to our fitness sand pile. Over the years that can amass into Everest if diligent enough. Every day we miss out on our training a little sand blows off. But if the days training out number the days missed the pile doesn't go away. I am positive you have a mountain range of strength to draw upon. Namaste and Om Shanti.

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    1. Lol! Indeed. Thank you. Yes, it would take a few years to undo so many years of working hard to stay healthy and fit. Muscle memory is a true thing, and my muscles have very few times of inactivity to draw upon, and instead a whole lifetime of fitness. I was a free range little small town southern prarie wild thing, but I had scheduled lessons almost year round, depending on the season. I took swimming and skating in those preschool years, and rode bikes and ran free round town with all of the other kids. I spent my summers active and outdoors all the way through highschool, and in that time I was certified in a wide number of sporting activities. I am blessed. Someone said to me "Oh Kerry, that's such bad luck! You have had terrible, terrible very bad luck!" And I have wondered whether I am cursed once or twice, it's true. Still. I am convinced that luck is neither good nor bad. It's just luck, and you can make of it what you will.

      So it's unlucky that I was born with EDS, yet how lucky was I to have had parents who set me free with the rest of the kids, and who kept me active and pursuing outdoor adventure sports all summer long? How wonderful to grow up with access to a condominium in Canmore, a mountain get away where this prarie girl learned how to ski - even better, I was a CSIA certified instructor. My athletic pursuits have held the Ehlers Danlos at bay. That's why I am not in a wheelchair, that is why I have not had my hips replaced yet. I think that the bad luck and the good luck all just amount to luck.
      I am a lucky girl. :)

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    2. il Pirata est Mort19 August 2015 at 07:32

      Free yourself from the concept of luck. It doesn't exist. You can be fortunate to have had x occur or pass you by; but in the universe there is no force called luck IMHO. Read a good one the other day -"Free yourself from the burden of your opinion." I have felt lighter ever since and it is much cheaper than unobtainium.

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    3. Sweet. Oh yes, please. I like that! I do carry around a tremendous, great load of opinions, it's true.

      Maybe letting go is what will free me to simply Be the Change that needs must most now. Sure. And in so doing the perfection in the moment will ring out loudly in resonance with the enlightened amongst us so that in one swift flash of collective conscious awareness we will evolve to embody our highest principles, our work done.

      Seriously, though. you are spot on. That's what I meant when I said that I admire those who calmly do just that, who let go of expecing one outcome or another. I wish it came naturally... you refer to it in the past, though. Did you simply one day decide "That's it. I let go of my opinions now!" ?

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    4. il Pirata est Mort20 August 2015 at 06:29

      This was recent reading but it struck a resonant chord with me. Impossible to give up all opinion (ie what bike tire I prefer) but l think it's an exercise in ego minimalization. (I read the passage in "The Emperor's Handbook" a translation of Roman Emperor Marcus Aurelius writings. Fantastic.) In short- Our time is short. Enjoy the ride. Don't fret the small shit. Breathe.

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  11. Babs! You've got so much metal in ya, they should call you Slayer! Well I've had broken bones and surgeries, and I remember how bad it sucks to be in recovery - it's depressing. But that's really just the body's way of convincing the mind to give it a rest. Think about it, that's what it evolved to do after an injury, and in the winter, and in famines (also crash diets, unfortunately). You get depressed, and are inclined to be lazy, which is a great way to heal, conserve calories, and wait for conditions to improve. You'll be all right when the time's right. and I don't really see you giving up. Why does the word "stubborn" come to mind? But in a good way!

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    1. Lol!! Er... guilty as charged. So wait a minute... I am feeling like hell so that I will slow down and rest??? Really?

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  12. I can sort of relate to a bit of this fascinating post.
    -my wife is a cancer survivor who knows what its like to look ok while suffering on the inside
    -she also found great comfort in writing a blog during her treatments - ramble all you want
    -i also understand when someone says "you're so strong" that your thought is to respond "what choice do I have?" But I think you do have a choice - not in whether to fight the disease but in how you fight the disease and in how you support others.
    -I don't have to agree with all your ideas to respect you as a person
    -don't let anyone tell you what to do (including me who's giving advice) if something works for you (cycling, naturopathy etc) then it works, whether or not it "should"
    -I've honestly never read your blog before, happened upon it linking from snob's post - will definitely make it a priority now to see you on this journey - good luck!

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    1. Thank you kindly for dropping by, and for your encouragement! And especially thank you for your ability to respect those with whom you don't necessarily agree. THAT is the sign of an evolved personality. We do have a choice, it's true. We don't always have control over the circumstances of our life, but we always have control over how we respond to those circumstances. We do choose what we think, how we act, and what we do. Good for you for your depth of understanding.
      Your wife must be a remarkable woman... what is the name of her blog?

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  13. All
    Across the
    Universe

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    1. Thank you, Dale!

      Um, and Yeowza! Strava says that you're having a great year! Good on ya for CRUSHing it out there.

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  15. Hey Babbles, I was wondering why you hadn't posted and thought since your summer is ending you'd be out and about enjoying the warmth and the sun. Not good that you fell apart a bit. I was very sorry to read that.
    I didn't think your blog was, or is, too personal. That's one of the parts I like about it. You're passionate about similar things to me and not just another blog.
    Politics is a major fact of life so it's very difficult to have a meaningful "discussion" without expressing some political views or at least commenting on it.
    I think the majority of people have their heads up their arses on most of what you write about. Cycling is only for weekend recreation or hard-core racing. The environment will be fine; it will just have to be fine somewhere else and not here where I want a new free-way and multi-level car park so I can get home in time for "Survivor". And what's a good catholic girl doing going to THOSE beaches?
    A lot if people are concerned about the planet, and they also have lives to live and families to take care of. I'll just vote for "the greens" and they can take care of it for me. What do you mean I have to pay an environment tax on my power bill? Fuck that shit, I'm a worker the unions should have looked after me and blocked that. Who will make it to the grand final this year?
    It's not just your government doing stupid crap. Google our Prime Minister and check out what he has to say about wind power. It costs big money to run in an election these days and it comes from business and unions, but it doesn't come for free.
    Oh, you mentioned the difference between Knowing and doing. I suffer from a big knowing / doing gap. I tell my kids that I know all.. and they say, yeh stuff all ! Bad dad joke; sorry. It won't happen again.
    You had 114 friends on G+ when I checked, and then it was 115. I don't use it much at all.

    Like the Wolf, I came for the cycling, and stayed for the lifestyle. Your legs are a bonus :)

    On your readers, my blog gets 3 or 4 reads and I don't think I've ever had a comment. One post had 12 reads; I had to lie down for a while after I saw that... And it doesn't worry me. It's really a place for me to write stuff and if other people want to read it then OK.
    Speaking about me, I've been a cold lazy arse fat bastard. Now the weather is turning with minimums closer to my lower comfort zone (10C). Time to get the Lycra shorts and roll of socks out and make up for lost time.

    Take it easy Babbs and keep it up.

    XO follower No. 115

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  16. Hi Babble
    I've followed your blog for some time now, it's always a good read on a slow night shift and enjoy your tours of Vancouver , just want to let you know your not alone with your political views and concern for the future,you may think you your not making much of a impact but you got me thinking about what kind of future we are leaving for our kids.
    Looking forward for your future post.

    Alistair.

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  17. Hi Babble,
    love your blog, not a follower so: 100+1.
    No matter how many screws you got in your body (even if some are loose): keep riding!
    Greetings from a happy rider from Holland who just did the Mont Ventoux in France 2 times and has a big smile on his face for weeks.

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  18. Hey, plus twenty, minus twenty. You can not be made un-hot.

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  19. Dear Babble

    Thank you for the post. It is extremely personal but I think that's a good thing. I might have first clicked on your blog because of your amazing legs but I have kept reading because of your intelligence, humour and honesty. I have loved every post you have written but have probably not been touched by any as much as this one. It is poignant and life affirming. It also caused me to google EDS and now I know about the existence of the condition. So if nothing else you're teaching us.

    I admire your ability to deal with such a debilitating condition. As someone who has had the great good fortune of good health I have no comprehension whatsoever of what you are dealing with and will not pretend that I could even imagine walking (or riding) a mile in your shoes. I do know that your attitude is testament to a strong character and I admire you for that.

    It's great to see from your Strava that you''re still on the bike and that is one serious hill you climbed Monday. Although obviously not as big as the hill you climb every day to beat EDS and the pain.

    I hope you set your bouncing to music, it would make it much more enjoyable - it could be a Zumba class !

    Anyway I'm not sure if I am one of your 100 but I read every post and try to comment when I have something worthwhile to say. Also whenever you like something on my Instagram it makes me smile.

    Good luck with your weight loss. Also remember that in this strange world of the internet you have many more than 100 people rooting for you.

    Cheers
    David

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    1. This letter brought tears pf joy to my eyes during a week when I shed altogether too many tears of sorrow.
      Yes, sometimes I do bounce to music, and sometimes I bring it in and bounce as I watch a movie. Not the same groove groove as bouncing to tunes, but I love it when the movie has a good soundtrack. Do you know what's funny? I got my first rebounder when I was fourteen or fifteen years old. Remember Men at Work? I used to listen to them and bounce every day for half an hour or so...

      Yes. I tried to get back on it too early and set myself back, so then I really rested it. I was grinning like a fool all the way through my first ride I missed it so much.

      And I really love your Instagram account. You're quite a talented photographer, and I LOVE your subject matter. When I was a kid, John Casablanca offered me a contract in Japan, but advised that I would have to lose that unsightly muscle. I love that you appreciate the beauty in a powerful female form.

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    2. So glad it helped.
      Men at Work is part of the soundtrack of my childhood, being a man from down under myself, although it has been a long time since I chundered (you might not even know what it means - Aussie for throwing up, esp after heavy drinking). Also thanks for your compliments on the Instagram, it's going to be my summer project and I really want to get close to a cycling team this year -it is going to be CrossFit, cycling, volleyball and maybe a little diving and water polo. The only other thing I have to say is that John Casablanca was a fool.

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  20. Please don't think that because you only have 100 or so subscribers that it also means only that many are reading your work regularly. I am not one of the official few, but have you bookmarked and read regularly. I enjoy your writing and hope you continue.

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    1. Thank you, Stan. I love that you're here. :)

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  21. Your comments about your body are hilarious. You're a strikingly beautiful woman.

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    1. Thank you! I just feel better and fit into my clothes best when I weigh twenty pounds less than I do today.

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  22. From a catholic schooled perspective, is teh bigger sin to write in naughty innuendo on some bikenerd snarky rant bloog or to immodest selfies of ur tone and toned tuckus for all the webz to see?
    Incidentally, I'm certain I see the holy virgin mommy riding 3riple tandom being stoked by lawdy lawd jeebus & teh Holy Ghost like that trinity thingy....

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    1. Ha!! No matter which way you look at it, I am the QOM of all things naughty. Fer sure fer sure. Beg your pardon, Mr Ballsdeep. I singled you out cause of where your avatar link took me, but then once the damage was done, I realized that it would take anyone to their own personal twitter feed. My bad.

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  23. I def. enjoy all the bloggery (from one writer to another, of course), but I don't mind telling you that vid of you jumping around in your little blue dress is one of my new favorite things. =D Keep on keepin' on, as always! xoxo

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