With September’s arrival comes cyclocross season.

There is something so special about cyclocross. (I know I write this every year….) It’s hard to pinpoint but I think tonight’s experience explains it well.

Imagine a small park with a bunch of flags organized in a 4 x 4 grid pattern on a hill and one lonely barrier in the flat at the bottom. Add into this picture nine women ranging in age from their mid-20’s to late-60’s. These women are riding all types of bikes from disc-brake enabled bikes to bikes with flat pedals. There is a set start time for the session but people arrive when they can make it based on their schedule. Everyone is relaxed and smiling.

The ladies ride around, practicing slow dismounts and mounts. Sometimes they stop and simply practice lifting their right leg over the saddle. Then they practice lifting their bikes and putting them down. They do seemingly simple and basic tasks over and over again. No one complains. They listen. Sometimes it looks like they’re just riding in a circle, but really they’re practicing always looking ahead. Looking ahead to the next barrier, the next corner, the next patch of gravel, the next obstacle.

Eventually the ladies move on to the flag grid on the hill. Working on their uphill cornering, momentum and forward focus, these women keep riding and pedaling. They are getting better. Soon it’s time to move on to a new drill. Riding the grid down the hill, no front brakes allowed and always pedaling. We discuss and dissect the best way to do this. Everyone moves forward.

At the end of the session, we talk about what to work on next week. We discuss some things to think about during the pre-ride. We talk about the different races in our local schedule. We talk about the great success that some of our junior riders are having – two of them off to the World Road Racing Championships and one a member of the Senior National Whitewater Paddling team.

Everyone is so happy to be out again riding bikes together. On Sundays, these women are all competitors and racers but once the race is over so is the competition. On Mondays we’re back together, working with one another to improve and keep moving forward.

This is what cyclocross is for me. These sessions have me feeling like myself again – the enthusiasm from this small group of women is contagious and motivates me to look forward. Who would of thought a barrier, some flags, a bike and a small park could do this?

Earlier in the week I said to Marc, “why don’t I just get it cut out?”.

On Thursday I asked my gastro doctor’s resident the same thing “why can’t you just cut it out?”.

It being my colon.

I learned on Thursday from my gastro doctor that if I really do want “it cut out”, I can have this done. He then went on to tell me that I have one other drug option left – a drug that was only recently approved by Health Canada.

So there are two treatment options left: have my colon removed or try the new drug.

It’s was a tough decision to make sitting in a small consulting room with a resident, second-year medical student and my gastro doctor siting there. My eyes were bleary and I felt like my heart was pounding so loudly that everyone could hear it.

I asked a lot of questions. I asked my gastro doctor what he would do.

And here’s what I’m going to do: I’m going to try the new drug. We’ll know within three months if it’s going to work. If it works, there are no guarantees on how long it will work. If it doesn’t work, I’ll have the surgery.

The last few days have been a bit scattered and confusing. It’s one thing for me to say angrily to Marc and others “just cut it out” but quite another to hear this from my doctor.

So this is where I am.

Despite everything that is going on with my health these days, most days really still do revolve around bikes. Riding bikes. Deciding where to ride bikes. Determining which bike to ride. Planning rides. Recovering from bike rides. Getting ready for the next bike ride.

Up until mid-June I was training rather seriously for the upcoming cyclocross season. I had set a goal of winning the Canadian National Masters (40 – 49) title. A big stretch goal considering where my fitness was when I started training in January with Coach Steve Weller, but I knew that so long as I did the training, I had a good chance at achieving my goal.

Once I started training again with Steve I realized how much I missed structured focussed training. It gave purpose to my rides and better yet, I could feel and see myself getting stronger and faster. My confidence was really quite high and I was starting to feel like a bike racer again. Capping this off with a super two weeks of riding in France, and well – I was crushing on the bike again.

So now I’m no longer training with Steve. This was a mutual decision. Steve has been through this ulcerative colitis roller coaster as long as I have – he was my coach when I was first diagnosed, when I raced at the World Cyclocross Championships, when I was hospitalized in Belgium, when I fractured my L3 vertebrae and when I got very sick again. He and I have worked together for so long that it was hard to pick up the phone and tell him the bad news about this ulcerative colitis flare. I know he was hoping as much as I was that somehow this would be a short flare and I’d be able to get back to training again.

But, it was not to be. We’ve trained through flares before – sometimes it’s worked out okay and other times it hasn’t been so great. This time, just like the last time, we both knew that training had to take a back seat.

Admittedly, I was super disappointed and floundered for a bit. I couldn’t see the point really in riding without a training plan and focus on my goals. Those initial rides after I realized that this wouldn’t be a “short” flare were not fun – “what’s the point?”, “I’m just going to lose my fitness anyway”, “why bother?”. But here’s the funny thing – I feel so much better when I’m riding a bike.

Sure there are days when I’m tired and I drag myself around. But more times than not, I feel great on my bike. It’s like I’m not sick at all. I don’t know if this the endorphins or if it has something to do with the brain/gut connection (more research about this all the time). But when I’m riding, my cranky colon settles down and I can ride without thinking about my disease (sure there are some crazy cramps, issues with heat management, extra concerns over dehydration, and lots of bonking happening) – but really I feel normal.

So, this is why you’ll see me lining up at the Eastern Ontario Cyclocross Series this year. I’m a bit nervous about it. When I’m healthy it can be a struggle to get to the start line with my nervous “race” stomach… So I’m not sure what will happen now that I’m in a flare. But, I won’t know if I don’t try. I really don’t know how I’ll feel out there on the race course. Up until I got sick I was doing lots of tempo intervals, long base rides and had started to get into the pointy-end of things with some threshold work – but I know that I don’t have a top end or the ability to recover from hard efforts repeatedly. So, I’ll just go out and race. I’ll try to race with my head and my technical skills – and hopefully my fitness can hang on for 50 minutes. It’s a risk of course to race – managing getting to the start line with this kind of disease is not easy – but I know if I don’t try, I’ll feel worse.

It’s not the racing that makes me want to get out there – it’s the people. There is something special about the cyclocross scene and there is something extra special about the Ottawa cyclocross scene. In the moment the racing is serious, but as soon as the race is over, it’s completely different. It’s hard to put into words, but everyone is so encouraging, supportive, helpful and really is happy to see someone improve. It’s hard to pass up this experience and sit on the sidelines watching.

So, with this being said, I should put some wheels on my trusty cyclocross bike and get out for some barrier practice… The other day I realized that if I hadn’t gotten sick, I would have been working on my technical skills for a month now. Now instead I ride where the roads and legs take me. Some days I do a long road ride. Other days all I do is bike the 22 km to work and back. Weekends see me out on my mountain bike exploring and testing my nerves. It’s different but the same. At the end of the day whether it’s V02Max intervals or a steady ride to the coffee shop – it’s still bicycle riding.

I’ve written this post over and over again, and hopefully this time I’m getting it right.

I am a chronically ill person. I will be sick and dealing with illness for the rest of my life. This is an undeniable fact.

There are times when I will be in a remission and won’t be dealing with the everyday symptoms of ulcerative colitis. But even when I’m in a remission, the disease is always present. The cramps that I get for no apparent reason. The strange and sudden fatigue. The close scrutiny of every ache, pain and temperature fluctuation. The fear of being in contact with someone who “just has a cold/flu/bronchitis/strep throat/etc” and what will happen if I get your sickness. The wonder if today will be the last day of my remission and tomorrow I’ll be back dealing with an ulcerative colitis flare.

If you know me, then it’s hard to really understand and appreciate that I am a chronically ill person. It’s hard to see that behind the tan, the clear skin, the shiny hair, the robust bodyweight, and energy that I am actually very sick.

You need to know and remember that sick people often don’t look sick. Nope, we look like you on the outside. The difference is how we feel on the inside.

The other thing you need to understand is that those of us who are chronically ill – we don’t complain about colds/flus/bronchitis/strep throat/sore muscles/headaches/etc – we’ve got much bigger things to deal with. So while we seem to be able to “push through” and make the “best of it”, this is because we have no choice.

We’ve got this disease for life, it can’t be cut out, it can’t be zapped or pummelled with some cocktail of drugs. Nope, instead we take a cocktail of drugs for life. Drugs that are just as potent as chemotherapy – we swallow these in our bathrooms and kitchen on a daily basis, we get hooked up to intravenous drips every six weeks – and we do this for life. We can’t pack up and move to Europe for a year or two or go on a round-the-world trip – we need to be able to get our medication on a defined and immovable schedule.

So, yes, we may “look great” – but we’re not great. We are chronically ill. I am chronically ill. I have this for life and while the medication might give me a remission for 1.5 years (longest remission in six years) – it’s not guaranteed.

I’ve now been in a flare since early June and it doesn’t look like it’s going to end any time soon. You see the tricky thing with a disease like ulcerative colitis or Crohn’s Disease is that the doctors and scientists don’t know what causes these diseases. So there is no cure. There are only bandaid solutions. And eventually, the bandaid is going to fall off. When you get to the level of medication that I’m at, there aren’t many bandaids left. Instead it becomes a science experiment, testing out hypothesis (guesses) until we find a bandaid that sticks for a little while.

In the meantime while I may “look great”, I’m actually not. Yes, I’m still biking to work two days a week (and don’t assume that because I’m biking to work that I can’t be “that sick” – and definitely don’t say this to me…). Yes, I’m still biking on the weekends. Yes, I’m still meeting up with friends.

And yes, I’m in a constant state of exhaustion. Some days are better than others. But in between the work, biking, and just carrying on with life – I’m going to the bathroom on average 15 times a day. I go to the bathroom so much that I have to plan when I eat so I can make sure that I’m not caught somewhere without fast (and I’m talking 15 seconds fast) access to a bathroom. In addition to these constant bathroom trips, I’ve got the cramps, the headaches, the muscle aches, the stiff joints, and general awfulness that comes with being chronically ill. I know that for most of you, if you experienced the kind of “bathroom visits” that I do, you wouldn’t be going to work and you wouldn’t be going for a bike ride or braving going out in public.

But because I’m chronically ill and I’ll be dealing with this for my entire life, I like so many other people living with ulcerative colitis and Crohn’s Disease, have learned how to “live with it”. This doesn’t make it easy or “no big deal”. Shitting blood and mucous 15 times a day. Debilitating abdominal cramps. Constant muscle cramps. Ridiculously intense headaches. These are all a pretty “big deal” and when you add them all up and squish them into one day – well this is just the life of a chronically ill person.

I am a chronically ill person.

The reality is that I can’t rollover and let this take over my life. This is why I keep riding my bike, going to work, volunteering, and living life. But this isn’t easy. It may look simple but it’s not. Those of us who are chronically ill we choose to do all the things that “normal” people do because, we really have no other choice. We can’t wait for a cure or the next miracle drug. We can’t wish to wake up and be magically cured. We know that changing our diets and reducing our stress levels won’t cure us.

Chronically ill people have tried it all. We’ve drunk the green juice. We’ve given up meat and become vegans. We’ve tried resting. We’ve started meditating. We’re doing yoga. We’ve drunk the kool aid and it didn’t make a difference. Just like you would, we’ve tried it all. We’ve scoured the Internet for the latest research, we’ve bought all the books, we’ve tried all the diets, we’ve talked to the experts.

The fact is that there is no magical cure. The fact is that this is “not our fault”. There is nothing I could have done to prevent this. This is the way it is.

Number One Rule: Don’t Panic

This rule got me through a lot of bike races. Whenever I would feel myself panicking, over-thinking, or riding on the front of the field when I didn’t need to be there, I’d hear both Marc and Glen in my head saying “Number one rule: don’t panic”.

When traveling to cyclocross races in Europe and my bags were lost or when I struggled to put my bikes together in a jet lagged fog or when I got a flat tire on my rental car or when I felt the pressure creeping up – the number one rule was there for me.

I’ve recently discovered that the number one rule is about so much more than bike racing. The number one rule works for regular old life as well.

I’m trying to teach Calvin the cat (we got a cat) the number one rule. Calvin is a skittish cat who twitches at a sneeze, a deep breath in or a creaking chair. We’re trying to teach Calvin that he’s safe here and there’s no need to panic.

Thanks to ulcerative colitis I get frequent daily reminders of rule number one. When I’m trying to get my cycling jersey off as fast as possible so I can get those darn bib shorts down – don’t panic. When I’m stretched out on a hospital bed waiting for a flexible sigmoid exam (as invasive and unpleasant as it sounds) – don’t panic. When I’m wondering if it’s safe to eat before getting in the car to drive to work – don’t panic. When I find out that there’s a strong chance that my medication is no longer working – don’t panic.

Really, in all life situations, panicking is the worst thing we can do. Don’t panic during a bike race – you’ll end up wasting valuable energy and becoming frustrated. Don’t panic when you can’t get the headset tightened properly on your cyclocross bike. Don’t panic when you have to go but there isn’t a bathroom in sight. Don’t panic, it will all work out eventually.

Number two rule: take it all in and enjoy the good stuff. (Easier to do when following rule number one: don’t panic.)