Bounce. Positives.
Sometimes there is just no alternative. You just have to make friends with the pain. Somehow I have never been sent on a pain management course. I went straight down the painkiller route. Escalation into opioids. Not proud. But also not too proud. I knew it was the only way.
There's a lot of chatter over in US a twitter about opioids and addiction right now. For me it doesn't make pleasant reading. The idea that this patch which I need to function currently puts me on an inevitable path to heroin addiction is so ludicrous I don't even know where to start. Let's start with insulted and work our way from there.
I've worked in pretty close quarters with heroin addicts. I've had clients walk in and tell me about the body of their friend that was found last night in an abandoned building, needle still in their arm. Half a syringe of death delivered so efficiently. Horror. Pity. Frustration. Anger. A maelstrom of emotion I will never forget. Heroin is the drug of abandonment and despair. I'm a caffeine junkie. That should be all I need to say.
Yet it isn't. 12kg+ ago I made a choice. It was a stark one. Lose weight or die. The weight wasn't killing me - the frustration was. 200m felt like K2. The despair crawled covering my skin in slick sticky cold shame. Someone asked on FB how I could be the same person who'd tried to ride the 7 Stanes in a day. I wasn't the same person. I was ashes burnt by searing pain.
Pain, constant chronic pain, makes a day or in a week in the hurt locker look like a party. Over a year. It took us over a year to get to the realisation I wasn't depressed, I was in pain. Over another year to work out what was causing the dislocations (7) of my knee. Via zombie drugs that took my mind, took my personality, took my joy and love and light and obliterated them into the galaxies above my head that I no longer stared at with any wonder at all. I was a zombie - a zombie that didn't even want to eat brains. Except the drugs were appetite stimulants and no one told me. Catastrophic combinations.
I asked for help. It took a long time arriving. But when it did it changed my life. It saved my life. I found a specialist who knew the answers and a physio who knew the right questions. I found a physio, truth be told, who was a bit broken too and who was honest about it. Connection made. Trust earned. We talked about my weight after three sessions and I told her honestly what the issue was and wasn't. First time I'd spoken the words. Not the last time. Sent for help. Got the help I needed. 12kg down. Twice that to go. Third of the way there.
A letter arrived from my specialist yesterday. The gold star isn't there but really, it is, written large in the words on the page. Huge improvement. Massive change. Different person. I gave him a card at the last appointment. It said 'thank you for saving my life'. His team did this. They pointed me in the right direction. They picked me up and dusted me off, didn't judge and they listened. They put the stabilisers on and walked behind me until I could do the work myself, all alone.
And I have. Grafted. Gritted. Committed. Worked. Tried.
But still the pain is there. We thought it was all linked to my weight. It isn't. And so I have to make friends with it. Because it is going to be with me for the rest of my life. It will lessen. It will be mitigated in some small way by the building of more muscles more more more muscles. By being strong, stronger, strongest. But it will always be there, a constant companion.
You can't fight something you can't win over. There just isn't any point. So this is me saying okay. Okay I accept. Okay I know. Okay I...don't concede but I do consciously acknowledge.
I will never be pain free again. Unless I wear an opiate patch on my arm for the rest of my life. And we all know that just isn't an option. Stubborn as all hell and twice as stupid. Never give up, never give in. Know what's going on my cross bar. Know what this will feel like. Know the cost. Accept the cost. Time to put the big girl pants on. And celebrate the fact that the zombie is long dead and long gone and I am back to dancing on mountain tops again. Well...I can't quite get up those yet.
But give me time. Just give me time.
#justfingcommit
#nevergiveupnevergivein
Saturday, March 18, 2017
Wednesday, March 15, 2017
The slow release of silent screams
Start at the beginning. Start at the end. It doesn't really matter.
There is pain.
I rode under a mile today. I rode as fast as the stupid 7 speed steel piece of crap Center Parcs calls a mountain bike (oh yeah, bike snobbery, I have it, and I'm out of fraks to give) could go. I ran out of gears. Truth be told, I didn't run out of rage, which was the thing that fuelled this piece of utter stupidity.
Channel it. Yeah. Right. Anger fuelled by frustration. Anger fuelled by shame. Anger fuelled by loops, looping around and around and around and around. Anger at myself and my body. Anger at drugs given which undid all my hard work and with no warning. Who the hell gives someone who's put so much effort into losing weight and getting strong an appetite stimulant anyway?
Anger. At the world. At my genes. At no cure and reclassification that still makes it sound like this body I am stuck with is no more than a minor nuisance. Variable. No gene marker identified. No specific test except for the Beighton score - can you put your hands flat on the floor? Yes past it. Can you bend your thumbs down to your wrist? Yes. Elbows go backwards? Oh yes.
They don't ask: does your spine go backwards? Does your pelvis have a range of movement most belly dancers would kill for? Does your little finger twist because you've dislocated it so many times you no longer notice if it's in joint or out? Does your neck flop when you're tired, so tired you literally cannot hold your head up any longer? Do your toes work like a second pair of hands?
Oh, don't get me wrong. All these things have upsides. Some I can tell you and some I can't. I'm an ace climber. I'll get up that wall in ways you can't even imagine. I'm strong - collagen is what means my joints wander off all over the place and my skin bruises so damn easily but it also seems to mean, somewhat ironically for someone banned from lifting weights, that I can lift a grown man clean off the floor with no bother at all. Yeah, come at me bro. Bad move. Kicks like a mule.
I rode under a mile today. I rode all the rage out. I grinned that grin. The one I've been missing. I hoppped off gleefully at the other end. I felt proud. Proud I'd taken corners like the old me. Proud that riding a motorbike has taught me so much road sense. Proud I can still ride in a skirt like a loon and maintain some decorum. Not all of it but some. My nan would be proud.
Then I lay down for a nap and the nap didn't happen because something more important came up and when I stood up I sat down. Sigh to a scream (silent).
It's like...it's not like normal bike pain. I've ridden...things. Silly things for a fat person. I've hurt. I thought I'd hurt. I've ridden epic things, things I'm proud of, things that make other mountain bikers go 'you did what now?' and give me that look up and down. Yeah I did and yeah I'm fat and yeah get out of my head, that's not your business. I didn't know pain.
Because bike pain leaves. Eventually. But it always leaves. And then you go looking for some more because you're an addict. Addicted to the edge. Addicted to dancing on it. Addicted to the pain. Addicted, actually, to those lovely endorphins that come flooding through your brain, the dopamine and the serotonin that come after. The adrenaline that comes before the pain. All the super nice happy hormones, swooshing and swirling along your bloodstream with the same grace and favour you bestowed on that single track x minutes ago.
So was I. No snobbery on that score. Addict. The acceptable addiction. Some insurance companies reward you for it, so it must be okay right? And the NHS is never gonna tell you to stop.
This pain. Obliterates. I don't know for sure but I think when pain becomes chronic, when the only thing you acknowledge is what level of pain there is, and whether you can focus on something else than it today or not, that maybe you burn through some of those hormones. Or that something weird happens. Because the endorphins don't carry you through. Nothing does, truth be told. Choosing to inflict more pain on top of the pain is akin to...
Never give up. Never give in. Never give up. Never give in. Never give up never give in.
It burns and it bites it aches and it stings it gnaws with big teeth and small teeth and I don't think it will stop tomorrow. Nor the day after. The nausea will pass by Saturday. By Sunday I will have my range of movement back that I had this morning. And maybe on Monday I won't wake up white faced with blue lips. So attractive. Come and get me.
Rage. Fuels. It's all I have and it's what I need. What else would get me back on the bike tomorrow, after all? What else would mean I will ride my own bike from old house to new this weekend?
Sometimes you take whatever you can. Sometimes the trade is so bad it's no trade at all. Sometimes you know either choice is no choice at all. I can't stay where I am. I have to step onto the path. I can't step off again until my muscles splint my joints and I am comfortable with the mileage I can do in a day. Until I am strong, every silent scream swallowed, every time I hit the handlebars in frustration, every time I throw my bike down, over, away, every time I sit by the trail and cry tears of humiliation faded memories, wisps of misty imprints, distant and debarbed.
This is going to hurt like nothing else I have ever experienced. I needed to acknowledge that. I need to look it in the face. Write it down. Think it through. Lay it bare. I won't pretend. I won't hide. I won't be anyone's inspiration porn. My name is Louise. I am chronically ill. I am a broken mess of genes. It isn't pretty. It isn't inspirational. It isn't even going to be enjoyable to read.
I don't care. I'm too busy looking into the face of a monster and staring it down. Hard.
There is pain.
I rode under a mile today. I rode as fast as the stupid 7 speed steel piece of crap Center Parcs calls a mountain bike (oh yeah, bike snobbery, I have it, and I'm out of fraks to give) could go. I ran out of gears. Truth be told, I didn't run out of rage, which was the thing that fuelled this piece of utter stupidity.
Channel it. Yeah. Right. Anger fuelled by frustration. Anger fuelled by shame. Anger fuelled by loops, looping around and around and around and around. Anger at myself and my body. Anger at drugs given which undid all my hard work and with no warning. Who the hell gives someone who's put so much effort into losing weight and getting strong an appetite stimulant anyway?
Anger. At the world. At my genes. At no cure and reclassification that still makes it sound like this body I am stuck with is no more than a minor nuisance. Variable. No gene marker identified. No specific test except for the Beighton score - can you put your hands flat on the floor? Yes past it. Can you bend your thumbs down to your wrist? Yes. Elbows go backwards? Oh yes.
They don't ask: does your spine go backwards? Does your pelvis have a range of movement most belly dancers would kill for? Does your little finger twist because you've dislocated it so many times you no longer notice if it's in joint or out? Does your neck flop when you're tired, so tired you literally cannot hold your head up any longer? Do your toes work like a second pair of hands?
Oh, don't get me wrong. All these things have upsides. Some I can tell you and some I can't. I'm an ace climber. I'll get up that wall in ways you can't even imagine. I'm strong - collagen is what means my joints wander off all over the place and my skin bruises so damn easily but it also seems to mean, somewhat ironically for someone banned from lifting weights, that I can lift a grown man clean off the floor with no bother at all. Yeah, come at me bro. Bad move. Kicks like a mule.
I rode under a mile today. I rode all the rage out. I grinned that grin. The one I've been missing. I hoppped off gleefully at the other end. I felt proud. Proud I'd taken corners like the old me. Proud that riding a motorbike has taught me so much road sense. Proud I can still ride in a skirt like a loon and maintain some decorum. Not all of it but some. My nan would be proud.
Then I lay down for a nap and the nap didn't happen because something more important came up and when I stood up I sat down. Sigh to a scream (silent).
It's like...it's not like normal bike pain. I've ridden...things. Silly things for a fat person. I've hurt. I thought I'd hurt. I've ridden epic things, things I'm proud of, things that make other mountain bikers go 'you did what now?' and give me that look up and down. Yeah I did and yeah I'm fat and yeah get out of my head, that's not your business. I didn't know pain.
Because bike pain leaves. Eventually. But it always leaves. And then you go looking for some more because you're an addict. Addicted to the edge. Addicted to dancing on it. Addicted to the pain. Addicted, actually, to those lovely endorphins that come flooding through your brain, the dopamine and the serotonin that come after. The adrenaline that comes before the pain. All the super nice happy hormones, swooshing and swirling along your bloodstream with the same grace and favour you bestowed on that single track x minutes ago.
So was I. No snobbery on that score. Addict. The acceptable addiction. Some insurance companies reward you for it, so it must be okay right? And the NHS is never gonna tell you to stop.
This pain. Obliterates. I don't know for sure but I think when pain becomes chronic, when the only thing you acknowledge is what level of pain there is, and whether you can focus on something else than it today or not, that maybe you burn through some of those hormones. Or that something weird happens. Because the endorphins don't carry you through. Nothing does, truth be told. Choosing to inflict more pain on top of the pain is akin to...
Never give up. Never give in. Never give up. Never give in. Never give up never give in.
It burns and it bites it aches and it stings it gnaws with big teeth and small teeth and I don't think it will stop tomorrow. Nor the day after. The nausea will pass by Saturday. By Sunday I will have my range of movement back that I had this morning. And maybe on Monday I won't wake up white faced with blue lips. So attractive. Come and get me.
Rage. Fuels. It's all I have and it's what I need. What else would get me back on the bike tomorrow, after all? What else would mean I will ride my own bike from old house to new this weekend?
Sometimes you take whatever you can. Sometimes the trade is so bad it's no trade at all. Sometimes you know either choice is no choice at all. I can't stay where I am. I have to step onto the path. I can't step off again until my muscles splint my joints and I am comfortable with the mileage I can do in a day. Until I am strong, every silent scream swallowed, every time I hit the handlebars in frustration, every time I throw my bike down, over, away, every time I sit by the trail and cry tears of humiliation faded memories, wisps of misty imprints, distant and debarbed.
This is going to hurt like nothing else I have ever experienced. I needed to acknowledge that. I need to look it in the face. Write it down. Think it through. Lay it bare. I won't pretend. I won't hide. I won't be anyone's inspiration porn. My name is Louise. I am chronically ill. I am a broken mess of genes. It isn't pretty. It isn't inspirational. It isn't even going to be enjoyable to read.
I don't care. I'm too busy looking into the face of a monster and staring it down. Hard.
Sunday, March 12, 2017
The slow regard of silent things
I write so I feel. I feel so I write.
Not sure where this belongs. Here. There. Nowhere.
Close your eyes. What do you see? Nothing? I don't.
I close my eyes and I can see everything I've ever seen, almost instantly recalled. People. Places. Experiences. With intensity comes...intensity. And so the neurons firing down the pathways of my mind perhaps burn their path deeper, an indelible scoring of memory imprinted through sheer intensity of emotion, experience, impact.
I close my eyes and I can smell. Still. The scent of sun rays on pine. The needles have fallen, some of them, as they have dried out, and sneaky bio breaks over the ditch and under the low branches are much less sneaky. Crackles. Pine. Perhaps the call of a curlew from the moors stretching and folding away behind the edge of the forest. The fire roads have dried too, caked and cracked, the occasional breeze causing dancing dust devils, momentary dervishes before quietening again, particles lifted effortlessly, blasted into my eyes, for foolishly I am not wearing shades again, somehow always hitting their target at least once, before falling to the floor again to lie undisturbed until some other mountain tyre passss this way.
I close my eyes and I can re-ride. Every route. Ever. But it's easiest to recall the most recent, of course, even for me. And so I sit in the dentists chair or in the MRI tube of doom, panic rising, crawling up from my stomach, threatening to choke me, shaking so badly the anaesthetic needle rattles on my teeth, fighting for control, fighting not to find it in the way I used to, fighting the urge to resort to an old but so bad for me friend to cope. I close my eyes and I am gone - gone away from the so loud clanging of the magnets as they rotate on their ceaseless endless routine that I could interior by pressing the panic button but then it would only all have to start again, endless endless endless, trapped and inescapable, fighting panic and the temptation to press the damn button, I close my eyes and I am away. Gravel scattering beneath my back wheel as I drop every last kg of weight down down down, holding the back wheel somehow, stopping the inevitable slide over the side of the trail because I misjudged that corner so badly, didn't scrub my speed, on sighting the trail because I've never ridden it before and truth be told the rush is the why, yanking on the bars, trying not to death grip, trying to let the front of the bike go where it wants to whilst pulling the back end back under me - and succeeding. Somehow succeeding. Remembering the feeling of achievement, the feeling of not being a stupid girl who can't but being a strong girl who can, forearm muscles screaming, shuddering to a halt and shaking with embarrassment and pride. Waiting for the recriminations from behind, knowing there won't be a well done, but will be swearing and not minding because I held it. I held it. Me. All on my own.
I close my eyes and I find myself again. The other girl. The one who isn't scared of pain, who's fearless. Before she knew there was something to be feared. Before all the specialists and the grave faces and the confused faces. Before. Before. I can't go back, can I? Can I go back? Please can I go back to not caring what happens to my meat sack? It isn't important. Trying is important. Achieving is important. Pushing is important. Challenges are important. I don't want to let the fear of the pain take any of that from me. I don't want to back off. I want to pedal faster, harder, further. I want to keep going until I just can't any more and I want that to be because not today, not because of not ever. I'm not done yet, damn you. I'm. Not. Done. Yet. Is it as easy as choosing? There are so many people with conditions and issues and challenges. They win Paralympic medals. They climb mountains. They do amazing things. Why can't I? It's only my mind that's stopping me.
It's only my mind. Yet I know there's no only. Fear and scared and such a little girl. So immature and irresponsible. But someone saw something in me. Someone I loved and respected. I won't let her down. I won't let myself down. So I'll put my big girl pants on (well my matte black 3/4 padded cycling shorts - you don't wear big girl pants with those!), and I'll decide. I'll choose. Choose to be more than a label. Choose to be more than a collection of letters that seem intent on damning me. Choose to buck trends. Choose to break statistics. Choose to fight every stupid cock up my stupid genes have inflicted without my say so, without my choice. If taking back control means pain, well at least I chose it. If I cry it will be because I accepted I would. Because I decided it was worth it. If I fall then it will hurt and I will scream and it will be humiliating and embarrassing. But anyone would scream. It could happen to anyone. I sat next to someone for 90 minutes it did happen to. No one judged him.
So. This is the blog post I should have written. The one that's real. The one that's honest. The one that's viscerally resolutely unapologetically me. Sometimes I imagine there are two invisible katanas on my back because in order to survive pain and pain and pain and pain you have to be a warrior. You have to fight it. You have to build walls and boxes and defences and trenches. You have to be mindful, every single second, mindful of how you place your feet, how you stand, what your cores doing, what your spine is doing, what your neck is doing. Constant checks. Constant balances. Constant trades. It's shit. It's crap. It's not fun. It's what I have to do.
So. Time for some fun. Not recklessly. Never recklessly. I've never been reckless. But it's time to stop watching others break the rules of what's possible and sitting at home admiring them. I don't want to close my eyes to see, any more.
I want my eyes wide open.
Not sure where this belongs. Here. There. Nowhere.
Close your eyes. What do you see? Nothing? I don't.
I close my eyes and I can see everything I've ever seen, almost instantly recalled. People. Places. Experiences. With intensity comes...intensity. And so the neurons firing down the pathways of my mind perhaps burn their path deeper, an indelible scoring of memory imprinted through sheer intensity of emotion, experience, impact.
I close my eyes and I can smell. Still. The scent of sun rays on pine. The needles have fallen, some of them, as they have dried out, and sneaky bio breaks over the ditch and under the low branches are much less sneaky. Crackles. Pine. Perhaps the call of a curlew from the moors stretching and folding away behind the edge of the forest. The fire roads have dried too, caked and cracked, the occasional breeze causing dancing dust devils, momentary dervishes before quietening again, particles lifted effortlessly, blasted into my eyes, for foolishly I am not wearing shades again, somehow always hitting their target at least once, before falling to the floor again to lie undisturbed until some other mountain tyre passss this way.
I close my eyes and I can re-ride. Every route. Ever. But it's easiest to recall the most recent, of course, even for me. And so I sit in the dentists chair or in the MRI tube of doom, panic rising, crawling up from my stomach, threatening to choke me, shaking so badly the anaesthetic needle rattles on my teeth, fighting for control, fighting not to find it in the way I used to, fighting the urge to resort to an old but so bad for me friend to cope. I close my eyes and I am gone - gone away from the so loud clanging of the magnets as they rotate on their ceaseless endless routine that I could interior by pressing the panic button but then it would only all have to start again, endless endless endless, trapped and inescapable, fighting panic and the temptation to press the damn button, I close my eyes and I am away. Gravel scattering beneath my back wheel as I drop every last kg of weight down down down, holding the back wheel somehow, stopping the inevitable slide over the side of the trail because I misjudged that corner so badly, didn't scrub my speed, on sighting the trail because I've never ridden it before and truth be told the rush is the why, yanking on the bars, trying not to death grip, trying to let the front of the bike go where it wants to whilst pulling the back end back under me - and succeeding. Somehow succeeding. Remembering the feeling of achievement, the feeling of not being a stupid girl who can't but being a strong girl who can, forearm muscles screaming, shuddering to a halt and shaking with embarrassment and pride. Waiting for the recriminations from behind, knowing there won't be a well done, but will be swearing and not minding because I held it. I held it. Me. All on my own.
I close my eyes and I find myself again. The other girl. The one who isn't scared of pain, who's fearless. Before she knew there was something to be feared. Before all the specialists and the grave faces and the confused faces. Before. Before. I can't go back, can I? Can I go back? Please can I go back to not caring what happens to my meat sack? It isn't important. Trying is important. Achieving is important. Pushing is important. Challenges are important. I don't want to let the fear of the pain take any of that from me. I don't want to back off. I want to pedal faster, harder, further. I want to keep going until I just can't any more and I want that to be because not today, not because of not ever. I'm not done yet, damn you. I'm. Not. Done. Yet. Is it as easy as choosing? There are so many people with conditions and issues and challenges. They win Paralympic medals. They climb mountains. They do amazing things. Why can't I? It's only my mind that's stopping me.
It's only my mind. Yet I know there's no only. Fear and scared and such a little girl. So immature and irresponsible. But someone saw something in me. Someone I loved and respected. I won't let her down. I won't let myself down. So I'll put my big girl pants on (well my matte black 3/4 padded cycling shorts - you don't wear big girl pants with those!), and I'll decide. I'll choose. Choose to be more than a label. Choose to be more than a collection of letters that seem intent on damning me. Choose to buck trends. Choose to break statistics. Choose to fight every stupid cock up my stupid genes have inflicted without my say so, without my choice. If taking back control means pain, well at least I chose it. If I cry it will be because I accepted I would. Because I decided it was worth it. If I fall then it will hurt and I will scream and it will be humiliating and embarrassing. But anyone would scream. It could happen to anyone. I sat next to someone for 90 minutes it did happen to. No one judged him.
So. This is the blog post I should have written. The one that's real. The one that's honest. The one that's viscerally resolutely unapologetically me. Sometimes I imagine there are two invisible katanas on my back because in order to survive pain and pain and pain and pain you have to be a warrior. You have to fight it. You have to build walls and boxes and defences and trenches. You have to be mindful, every single second, mindful of how you place your feet, how you stand, what your cores doing, what your spine is doing, what your neck is doing. Constant checks. Constant balances. Constant trades. It's shit. It's crap. It's not fun. It's what I have to do.
So. Time for some fun. Not recklessly. Never recklessly. I've never been reckless. But it's time to stop watching others break the rules of what's possible and sitting at home admiring them. I don't want to close my eyes to see, any more.
I want my eyes wide open.
Hello from the other side
*takes a deep deep breath*
So.
Just assume some really bad shit happened and that's why I wasn't riding my bike. Diagnosed with more blooming acronyms than an NHS white paper. 'Rare' diseases and rubbish prognoses and more stuff coming to the surface as family get diagnosed with even more stuff. And no cures for any of it. So yes, in a way, I've been riding my very own endless enduro race of pain and suffering for the last two years.
So. Pop that in a box. Put it there mentally and physically. Got a box, wrote it all down, and put it in there. Wrapped it with a ribbon and put it in my bedside cabinet. Because I'm done.
Except I actually can't be done with it because.
So I need to get back on my bike. Need. Hate the word. Hate needing anything or anyone. Not a fan of it. Despise it currently for yet other reasons I wont go into. Yeah life got super messy. But never mind, because I can choose to deal with it any way I want to and I choose this. Exercise, wellbeing, channeling anger and disappointment and hurt and turning some negative into positive. Hell, emotion can fuel amazing things, if you just let it. So I decided to let it. Let myself feel it all and then find something to leech it all away again, hopefully leaving behind a freshly hatched butterfly instead of a super messy cocoon.
Riding a bike is it. Don't get me wrong, I love my motorbike. I love the feeling of response from the engine to the throttle. I love swinging around corners with my knees out - yeah, riding a motorbike is just the same as riding a pedal bike, it turns out. Except 70mph feels super fast, not 40mph. I love going over Winter Hill. I hate coming back down it. Yeah, there's a theme here. I love discovering gorgeous new lanes and pottering along at 30mph with no one behind me. I love finding lanes with grass down the middle which eventually turn into mud tracks and fighting for traction, feeling with the brakes, smiling at the hares, totally lost, it's twilight, there's a youth hostel somewhere around here...
I've been on some adventures on my motorbike already and plan some more. Upgrading from 125cc to 750cc and off bikepacking to the Pyrenees. But it's missing something.
Slow. Down.
It's also too easy. I don't like easy. Yes that makes me...contrary. Let's go with contrary. The harder something is, the more I want to do it. And this is going to be akin to walking a tightrope. I somehow have to make sure that my heart rate neither goes below a certain point or above a certain point because I'll pass out if it does. Changes in height are a major trigger so knowing I'm probably going to pass out when I get off the bike and flump on the ground at least means - well I'm already on the ground. So that's okay. I have to keep my bpm consistent, so alert setting on my Garmin can happen and will happen. If I go under I'll pass out, so I need to work out what that number is and set an alarm for 5-10 above it. Similar at the top end. Preferably before my eyes and hands stop working because no blood is getting to them in adequate quantities.
I also need to add salt to my water bottles no matter what else is in there and I'm going to need a lot of water. And I'm going to have to seriously remember to blooming drink the stuff - something which used to be a major issue but I've got much much better at remembering to drink off the bike so I'm just going to have to trust I will on the bike too. Because otherwise my muscles wont work. Literally. If you think you know what cramps are...you don't. You really really don't.
And I need to never fall off. Or accept I will fall off and strap absolutely every joint I've ever dislocated. Now...I know strapping is bad, before anyone says anything but it's preferable to actually dislocating in the middle of nowhere. So, that's all my fingers, one elbow, two knees, two ankles and two big toes. Additionally, I need to find someone who'll be my...'guardian' I guess.
Basically, I need a volunteer to keep an eye on my gps dot and keep an ear out for an alert if I can set one up if I stop for more than a certain amount of time. Cos I am unlikely to suddenly become a more sociable rider. I mean I can tolerate riding with a couple of people but groups are out. Which I suppose is the answer - finding 1 or 2 people who know all this stuff, understand and know when absolutely not to call an ambulance because I will hunt them down and hurt them for it afterwards.
Not a fan of A & E.
I think that covers everything. Solution focused. Sounds a lot, I spose. If you don't ride bikes. If you do ride bikes you'll know why. I don't need to explain why to you. I can't bear to be away from my bike any more and it's as simple as that. I can't keep pretending it's fine and I don't mind. It's not fine and I do mind.
For those who don't ride bikes...
It's my...hot bath with hot chocolate, a book, and a sneaky Baileys. It's my spa day. It's my solitude, my solace, my zen, my meditation, my challenge, my rhythm, my reason. It's the one thing I do which I control. No one else chooses. I choose. I choose when to get in the saddle and when not to. I can keep going for as little time or as long as I want to. I can decide whether today is the day I push myself until the tears come and I'm falling off the bike, not stepping off, or whether I just want a meditative meander along a canal towpath. I can choose to crucify myself and get rid of every ounce of aggression and anger, or I can find my inner something, and disappear into it, forgetting where I am and what I'm doing and where I'm going and just...existing..
It has parallels actually to something else which I wont go into. But it's missing. It's one of the reasons I am massively off balance at the moment. I need it back. It's going to hurt like hell. It's going to be a military operation and I am probably mad to even consider it but I don't care. I figure it's easier to ask for forgiveness than permission from my Rheumatologist and Physio. They did say riding bikes was ace but I think they meant road bikes. Which is also on my list but if you think I'm wearing lycra looking like this...nope. No no no. That's for later.
So. If you see a big (but smaller) girl pottering along on a Surly Cross in East Lancs, smile. Say hi. Don't say owt else - I'm kinda shy and I'll probably be lost in some daydream or other. But smile. I'll be grinning like a loon right back :O)
So.
Just assume some really bad shit happened and that's why I wasn't riding my bike. Diagnosed with more blooming acronyms than an NHS white paper. 'Rare' diseases and rubbish prognoses and more stuff coming to the surface as family get diagnosed with even more stuff. And no cures for any of it. So yes, in a way, I've been riding my very own endless enduro race of pain and suffering for the last two years.
So. Pop that in a box. Put it there mentally and physically. Got a box, wrote it all down, and put it in there. Wrapped it with a ribbon and put it in my bedside cabinet. Because I'm done.
Except I actually can't be done with it because.
So I need to get back on my bike. Need. Hate the word. Hate needing anything or anyone. Not a fan of it. Despise it currently for yet other reasons I wont go into. Yeah life got super messy. But never mind, because I can choose to deal with it any way I want to and I choose this. Exercise, wellbeing, channeling anger and disappointment and hurt and turning some negative into positive. Hell, emotion can fuel amazing things, if you just let it. So I decided to let it. Let myself feel it all and then find something to leech it all away again, hopefully leaving behind a freshly hatched butterfly instead of a super messy cocoon.
Riding a bike is it. Don't get me wrong, I love my motorbike. I love the feeling of response from the engine to the throttle. I love swinging around corners with my knees out - yeah, riding a motorbike is just the same as riding a pedal bike, it turns out. Except 70mph feels super fast, not 40mph. I love going over Winter Hill. I hate coming back down it. Yeah, there's a theme here. I love discovering gorgeous new lanes and pottering along at 30mph with no one behind me. I love finding lanes with grass down the middle which eventually turn into mud tracks and fighting for traction, feeling with the brakes, smiling at the hares, totally lost, it's twilight, there's a youth hostel somewhere around here...
I've been on some adventures on my motorbike already and plan some more. Upgrading from 125cc to 750cc and off bikepacking to the Pyrenees. But it's missing something.
Slow. Down.
It's also too easy. I don't like easy. Yes that makes me...contrary. Let's go with contrary. The harder something is, the more I want to do it. And this is going to be akin to walking a tightrope. I somehow have to make sure that my heart rate neither goes below a certain point or above a certain point because I'll pass out if it does. Changes in height are a major trigger so knowing I'm probably going to pass out when I get off the bike and flump on the ground at least means - well I'm already on the ground. So that's okay. I have to keep my bpm consistent, so alert setting on my Garmin can happen and will happen. If I go under I'll pass out, so I need to work out what that number is and set an alarm for 5-10 above it. Similar at the top end. Preferably before my eyes and hands stop working because no blood is getting to them in adequate quantities.
I also need to add salt to my water bottles no matter what else is in there and I'm going to need a lot of water. And I'm going to have to seriously remember to blooming drink the stuff - something which used to be a major issue but I've got much much better at remembering to drink off the bike so I'm just going to have to trust I will on the bike too. Because otherwise my muscles wont work. Literally. If you think you know what cramps are...you don't. You really really don't.
And I need to never fall off. Or accept I will fall off and strap absolutely every joint I've ever dislocated. Now...I know strapping is bad, before anyone says anything but it's preferable to actually dislocating in the middle of nowhere. So, that's all my fingers, one elbow, two knees, two ankles and two big toes. Additionally, I need to find someone who'll be my...'guardian' I guess.
Basically, I need a volunteer to keep an eye on my gps dot and keep an ear out for an alert if I can set one up if I stop for more than a certain amount of time. Cos I am unlikely to suddenly become a more sociable rider. I mean I can tolerate riding with a couple of people but groups are out. Which I suppose is the answer - finding 1 or 2 people who know all this stuff, understand and know when absolutely not to call an ambulance because I will hunt them down and hurt them for it afterwards.
Not a fan of A & E.
I think that covers everything. Solution focused. Sounds a lot, I spose. If you don't ride bikes. If you do ride bikes you'll know why. I don't need to explain why to you. I can't bear to be away from my bike any more and it's as simple as that. I can't keep pretending it's fine and I don't mind. It's not fine and I do mind.
For those who don't ride bikes...
It's my...hot bath with hot chocolate, a book, and a sneaky Baileys. It's my spa day. It's my solitude, my solace, my zen, my meditation, my challenge, my rhythm, my reason. It's the one thing I do which I control. No one else chooses. I choose. I choose when to get in the saddle and when not to. I can keep going for as little time or as long as I want to. I can decide whether today is the day I push myself until the tears come and I'm falling off the bike, not stepping off, or whether I just want a meditative meander along a canal towpath. I can choose to crucify myself and get rid of every ounce of aggression and anger, or I can find my inner something, and disappear into it, forgetting where I am and what I'm doing and where I'm going and just...existing..
It has parallels actually to something else which I wont go into. But it's missing. It's one of the reasons I am massively off balance at the moment. I need it back. It's going to hurt like hell. It's going to be a military operation and I am probably mad to even consider it but I don't care. I figure it's easier to ask for forgiveness than permission from my Rheumatologist and Physio. They did say riding bikes was ace but I think they meant road bikes. Which is also on my list but if you think I'm wearing lycra looking like this...nope. No no no. That's for later.
So. If you see a big (but smaller) girl pottering along on a Surly Cross in East Lancs, smile. Say hi. Don't say owt else - I'm kinda shy and I'll probably be lost in some daydream or other. But smile. I'll be grinning like a loon right back :O)
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