Edinburgh Marathon Mission
Donation protected
The Heinemann brothers are running at the Edinburgh Marathon Weekend to support NASS and others living in failing bodies like ours.
The support of family and friends means a lot to us so thanks for taking the time to see what we're up to.
There’s a bit of a story to tell so bear with us...
Imagine that your spine slowly starts to feel like it's on fire. Walking is agony. Sleeping worse. Every day, the floor seems further and further away. After a little while, your fiery spine starts to feel like it's being set in stone. Bending down, reaching, twisting, some days simply moving - it all starts to be a struggle. You sleep and sleep but you're always fatigued. You drift in and out of depression. Your stomach ties itself in knots. And all the while, no matter how hard you try, your posture is basically headed the way of Notre Dame's most infamous resident ...
This is our life with Ankylosing Spondylitis (AS), a chronic, incurable illness experienced by around 1 in 200 people in the UK. It's relentless.
Luckily we're not alone. 10 years ago, when my brother Avi and I were fortunate enough to work out what we had, NASS (The National Association for Ankylosing Spondylitis) were behind the only helpful advice we were given. They've been working hard to improve things since.
With AS, people sadly often go undiagnosed or misdiagnosed for years - ‘just an old sports injury', 'you must have picked something up wrong’, 'hang on, are you sure you're not just imagining something?' If and when you do finally get a diagnosis, you'll discover there's no gold at the end of the rainbow: we still have relatively little idea what triggers it and there's no medication without nasty side effects.
But this is not a sob story.
From Arthritis to Asthma and Diabetes to Depression, it's estimated that there are around 15 million people living with long-term chronic diseases in the UK. Avi and I are just 2 blokes among many in that boat and we've decided to try and do something positive.
On May 26th and 27th we are aiming to run some races in Edinburgh - Avi 5km, me a whole darn marathon. With your support we hope to get our concrete spines over the line, along the way maybe we can also inspire a few others facing their own battles with chronic conditions...
Crazy goals?
To be frank, neither of us are saints. I spent the first five years after I was diagnosed doing my absolute best to pretend I was fine. I know Avi was similar, struggling with the ups and downs of living your late teens and early twenties stuck in unforgiving pain.
Feeling your body repeatedly fail? Drowning in discomfort some days? Watching your family struggle with AS even worse than your own? It's taken me a while to admit this but I was terrified. The easiest thing to do is just bury your head in the sand.
Five years later a few things happened that made me stop and think. Our AS was going nowhere. In fact, it was getting worse. I decided I had a choice: tread water until drowning? Or start experimenting, seeking ways in which to live some sort of happier life with it?
I ploughed through piles of articles and books. I overhauled my whole diet, several times. Started attending weekly hydrotherapy (thanks NASS). Did hours of Pilates, Yoga, stretching. Someone told me the pool might help but I couldn't swim - so I taught myself. Nothing was off limits. A fortnight of freezing cold and scalding hot morning showers ... A month of raw vegan food ... A week on nothing but vegetable juice...
Some of it was pretty fruitless (no pun intended). But slowly, very slowly, a few things started to work. In early 2013 I felt good, so strong in fact that I dared myself to do something I'd thought I'd never do again: run.
1 mile. It sounds tiny, I know. But I can remember it so clearly. I've always had bad asthma and the freezing cold air that day made me wheeze but I pushed on, exhilarated to be breaking my own assumed limits. Scared of the pain that might follow, I hid in my room and stretched for a full hour afterwards.
There's no point pretending, that first run did make me feel quite sore. But it also felt good. Breaking assumed boundaries. Feeling a little less helpless. Looking back, it was also partly because I started to kid myself that I could run away from the inescapable... No more Notre Dame for me! I challenged myself to try 10km that summer.
I trained hard, stretched harder and finally ran one lap of Hyde Park that June (thanks again NASS). The massive boost to my confidence helped to flip my fears, a caring conversation with my wife helped me to realise I was partly trying to run away from something, and I began to try and run with my reliable old pals AS and Asthma alongside me - not just away from them.
It's taken me a few more years to come to terms with the fact that all of this may or may not help to heal my posture. But instead I've slowly built up the courage to look that fact in the eye and I've begun to accept that it's worth persisting anyway - whatever the outcome.
Which is where I got the crazy idea to run a marathon.
I didn’t believe it would be feasible if I'm honest. I still have doubts about what my body can handle. But the thrill of testing my limits has stayed with me, and what else is more like living with a long term chronic illness than endurance sport? I started to think that this can be about more than just me, maybe all of us fighting for a more positive relationship with our failing bodies? As the saying goes: if not me, who? If not now, when?
Last but far from least, something a bit special has just happened that's switched this from a private conversation in my own head into something more public: in the last few months, of his own choice, my brother Avi has started running. He faces even bigger obstacles than me but he's slowly working on them, at his own pace, in his own way. He told me he wanted to run his own first race on the same weekend as my marathon. Inspiring.
What are we trying to do?
On 27th May, after more than five years of hard work, thousands of hours training and an embarassing amount of stretching, I'm hoping to run a marathon. Fuck.
The day before, Avi will also be attempting his own epic effort: 5km. Maybe that sounds small but it will be an enormous achievement for someone who's body is failing even more drastically than mine.
The truth is I'm really not a big fan of being in the limelight. Not at all. Much of this was just a conversation with myself and my closest family and I've hesitated about writing this for a month or two. But I guess I've learned from unexpectedly encouraging Avi that it's not always helpful to stay in the shadows.
Both of us know there are amazing Paralympians who have taken this so much further. We know that running is not the magic cure for everyone. And we also realise that in some ways we're super privileged - we've got both of our legs for starters.
But chronic conditions fluctuate, so we would never be eligible for the Paralympics. Building a positive mindset is far more important than what helps you get there - running or otherwise. And maybe if we share our privilege - tell this story - we can offer a little inspiration to someone else facing their own challenges?
What can you help us with?
First and foremost, Avi and I are hoping to spread a little more awareness of our relatively unknown disease. If we can raise some funds for NASS they will be able to inform more people, increase persistently poor diagnosis rates, and continue to enhance the support they offer to those of us who live in miserable, incurable, constant pain.
Second, we want to demonstrate the positive relationship that we know it is possible to have with any chronic disease. We love the NHS but for those of us living with chronic illness our health system can sometimes inadvertently leave you feeling very helpless. We know - from our own lived experience - that this really needs to change. Fast. If our example can inspire just one more person to gain some confidence and begin to build a more positive relationship with their bodies? That would be a massive win.
And third, we simply want to celebrate and encourage everyday warriors who refuse to be beat by what life throws at us. Sadly, you can't choose the hand you're deal. But you can always - metaphorically speaking - lace up your trainers, suck in whatever little air you can, and get out there in pursuit of your crazy dreams .... wish us luck!
Thanks again for your time and thank you so much for any support you are willing and able to offer. No matter how big or small, every single penny and encouraging comment makes a massive difference.
x Avi & Dave
The support of family and friends means a lot to us so thanks for taking the time to see what we're up to.
There’s a bit of a story to tell so bear with us...
Imagine that your spine slowly starts to feel like it's on fire. Walking is agony. Sleeping worse. Every day, the floor seems further and further away. After a little while, your fiery spine starts to feel like it's being set in stone. Bending down, reaching, twisting, some days simply moving - it all starts to be a struggle. You sleep and sleep but you're always fatigued. You drift in and out of depression. Your stomach ties itself in knots. And all the while, no matter how hard you try, your posture is basically headed the way of Notre Dame's most infamous resident ...
This is our life with Ankylosing Spondylitis (AS), a chronic, incurable illness experienced by around 1 in 200 people in the UK. It's relentless.
Luckily we're not alone. 10 years ago, when my brother Avi and I were fortunate enough to work out what we had, NASS (The National Association for Ankylosing Spondylitis) were behind the only helpful advice we were given. They've been working hard to improve things since.
With AS, people sadly often go undiagnosed or misdiagnosed for years - ‘just an old sports injury', 'you must have picked something up wrong’, 'hang on, are you sure you're not just imagining something?' If and when you do finally get a diagnosis, you'll discover there's no gold at the end of the rainbow: we still have relatively little idea what triggers it and there's no medication without nasty side effects.
But this is not a sob story.
From Arthritis to Asthma and Diabetes to Depression, it's estimated that there are around 15 million people living with long-term chronic diseases in the UK. Avi and I are just 2 blokes among many in that boat and we've decided to try and do something positive.
On May 26th and 27th we are aiming to run some races in Edinburgh - Avi 5km, me a whole darn marathon. With your support we hope to get our concrete spines over the line, along the way maybe we can also inspire a few others facing their own battles with chronic conditions...
Crazy goals?
To be frank, neither of us are saints. I spent the first five years after I was diagnosed doing my absolute best to pretend I was fine. I know Avi was similar, struggling with the ups and downs of living your late teens and early twenties stuck in unforgiving pain.
Feeling your body repeatedly fail? Drowning in discomfort some days? Watching your family struggle with AS even worse than your own? It's taken me a while to admit this but I was terrified. The easiest thing to do is just bury your head in the sand.
Five years later a few things happened that made me stop and think. Our AS was going nowhere. In fact, it was getting worse. I decided I had a choice: tread water until drowning? Or start experimenting, seeking ways in which to live some sort of happier life with it?
I ploughed through piles of articles and books. I overhauled my whole diet, several times. Started attending weekly hydrotherapy (thanks NASS). Did hours of Pilates, Yoga, stretching. Someone told me the pool might help but I couldn't swim - so I taught myself. Nothing was off limits. A fortnight of freezing cold and scalding hot morning showers ... A month of raw vegan food ... A week on nothing but vegetable juice...
Some of it was pretty fruitless (no pun intended). But slowly, very slowly, a few things started to work. In early 2013 I felt good, so strong in fact that I dared myself to do something I'd thought I'd never do again: run.
1 mile. It sounds tiny, I know. But I can remember it so clearly. I've always had bad asthma and the freezing cold air that day made me wheeze but I pushed on, exhilarated to be breaking my own assumed limits. Scared of the pain that might follow, I hid in my room and stretched for a full hour afterwards.
There's no point pretending, that first run did make me feel quite sore. But it also felt good. Breaking assumed boundaries. Feeling a little less helpless. Looking back, it was also partly because I started to kid myself that I could run away from the inescapable... No more Notre Dame for me! I challenged myself to try 10km that summer.
I trained hard, stretched harder and finally ran one lap of Hyde Park that June (thanks again NASS). The massive boost to my confidence helped to flip my fears, a caring conversation with my wife helped me to realise I was partly trying to run away from something, and I began to try and run with my reliable old pals AS and Asthma alongside me - not just away from them.
It's taken me a few more years to come to terms with the fact that all of this may or may not help to heal my posture. But instead I've slowly built up the courage to look that fact in the eye and I've begun to accept that it's worth persisting anyway - whatever the outcome.
Which is where I got the crazy idea to run a marathon.
I didn’t believe it would be feasible if I'm honest. I still have doubts about what my body can handle. But the thrill of testing my limits has stayed with me, and what else is more like living with a long term chronic illness than endurance sport? I started to think that this can be about more than just me, maybe all of us fighting for a more positive relationship with our failing bodies? As the saying goes: if not me, who? If not now, when?
Last but far from least, something a bit special has just happened that's switched this from a private conversation in my own head into something more public: in the last few months, of his own choice, my brother Avi has started running. He faces even bigger obstacles than me but he's slowly working on them, at his own pace, in his own way. He told me he wanted to run his own first race on the same weekend as my marathon. Inspiring.
What are we trying to do?
On 27th May, after more than five years of hard work, thousands of hours training and an embarassing amount of stretching, I'm hoping to run a marathon. Fuck.
The day before, Avi will also be attempting his own epic effort: 5km. Maybe that sounds small but it will be an enormous achievement for someone who's body is failing even more drastically than mine.
The truth is I'm really not a big fan of being in the limelight. Not at all. Much of this was just a conversation with myself and my closest family and I've hesitated about writing this for a month or two. But I guess I've learned from unexpectedly encouraging Avi that it's not always helpful to stay in the shadows.
Both of us know there are amazing Paralympians who have taken this so much further. We know that running is not the magic cure for everyone. And we also realise that in some ways we're super privileged - we've got both of our legs for starters.
But chronic conditions fluctuate, so we would never be eligible for the Paralympics. Building a positive mindset is far more important than what helps you get there - running or otherwise. And maybe if we share our privilege - tell this story - we can offer a little inspiration to someone else facing their own challenges?
What can you help us with?
First and foremost, Avi and I are hoping to spread a little more awareness of our relatively unknown disease. If we can raise some funds for NASS they will be able to inform more people, increase persistently poor diagnosis rates, and continue to enhance the support they offer to those of us who live in miserable, incurable, constant pain.
Second, we want to demonstrate the positive relationship that we know it is possible to have with any chronic disease. We love the NHS but for those of us living with chronic illness our health system can sometimes inadvertently leave you feeling very helpless. We know - from our own lived experience - that this really needs to change. Fast. If our example can inspire just one more person to gain some confidence and begin to build a more positive relationship with their bodies? That would be a massive win.
And third, we simply want to celebrate and encourage everyday warriors who refuse to be beat by what life throws at us. Sadly, you can't choose the hand you're deal. But you can always - metaphorically speaking - lace up your trainers, suck in whatever little air you can, and get out there in pursuit of your crazy dreams .... wish us luck!
Thanks again for your time and thank you so much for any support you are willing and able to offer. No matter how big or small, every single penny and encouraging comment makes a massive difference.
x Avi & Dave
Organizer
David E Heinemann
Organizer
