Learning To Say I Can’t

“I can’t do my workouts today.”

This is the text I just sent to my coach Steve Weller.

This is not a normal text for me to send. I’m that person who gets up at 4:45 to do a weight workout before going to physio at 6:45 and then comes home to ride for 90 minutes or so and then does a full day of writing work at home.

But today, I just can’t do it all. A very good but busy weekend followed by two days of lots of writing work and life finally caught up with me today.

So today, I’m taking my own advice and forgetting about the training plan. To be honest this in itself is stressing me a bit. I sit here asking myself how I let this happen and wondering why I can’t just keep on plowing forward.

Maybe it’s because I’m getting to a new point in my bike riding life. I don’t consider myself a racer anymore. I’m a person who used to race bikes and now loves riding a bike. So on a day like today when there are so many balls in the air and a few on the floor – I have to say no.

It’s hard to not ride when I’ve conditioned myself to always be riding or getting ready to ride. It’s so hard to let go of the mindset that helped me achieve some big goals and reframe it to mesh with what I want now.

To accept that it’s okay not to ride some days. To let myself not worry about that Easter chocolate I ate. To remind myself that I’m not trying to qualify for anything or that race weight is something to think about anymore.

I still want to be fit and strong. But it’s for different reasons now. Now it’s so I can easily ride with my friends and enjoy being on the bike. It’s so I can go on a three-hour mountain bike ride and not be wrecked for two days. It’s so I can do a gravel race and the next day still have the desire and energy to go for a ride and to yoga.

So this is where I’m at right now today. I’m pretty confident that on Thursday I’ll be out riding. But today, the bike stays in the garage and the weights in the basement won’t be picked up and put down.

Instead I’ll do what my physio told me to do – to focus on breathing.

 

Hitting that Button

It’s amazing how easy it is to go from the highest of the highs to the lowest of the lows. This happened to me last week.

The middle of last week I was still riding the endorphins from SWEET night when I started to feel not-so-awesome. My pesky left eye was irritated and I was very low on energy.

Sure enough, the uveitis was back. I spent a few days laid out on the couch – super low on  energy, motivation, and courage. I was frustrated that this autoimmune condition was back and that it was interrupting all of my plans.

While everyone I knew was outside riding their bikes and having fun at the first Gravel Guys race, I was putting drops in my eye and trying to pretend that I was okay. I wasn’t okay, I managed to put myself in a deep hole of sadness.

Fortunately I have experience with this. On Sunday morning I woke up and resolved that the day would be better. I made plans, I went out, I walked in the fresh air, I did some retail therapy, I drank indulgent coffee shop drinks, I sketched, and I just enjoyed the day.

My eye is still a problem. But my mood and emotions are not. For this I have my support system and that trusty reset button to thank.

And now here I am. It’s Thursday, April 11. And it’s a good day.

I got to ride my bike outside. It was glorious. I can’t wear contacts right now so I rigged up a pair of sunglasses overtop of my old eyeglasses – not the most comfortable but it worked.

I’ve got an appointment next week with an ophthalmologist who specializes in uveitis. I really am looking forward to this appointment. Time to get some answers and find out if it’s time to take a different approach to this eye problem.

…..

And now, for some non-sick person stuff. Here’s a snapshot at everything else that makes up this life of mine:

  • Read: just finished reading Everything I Never Told You by Celeste Ng. An excellent book – I think it’s even better than Little Fires Everywhere.
  • Reading: I just started reading Passion Paradox by Brad Stulberg and Steve Magness. These guys are terrific thinkers and writers. I recommend their first book Peak Performance to practically everyone. As well, their newsletter is a must-subscribe and read.
  • Listening: I work from home so I spend most of my day listening to CBC Radio. But when I can’t take anymore conversations about SNC-Lavelin or climate change, I listen to music. Right now, my go-to is Imogen Heap. Her soundtrack for the Harry Potter Cursed Child play is stunning. Marc and I saw the play in NYC – amazing. This is the kind of music you can put on and just enjoy. Highly recommend.
  • Creating: I’m currently doing #The100DayProject. This is the perfect project for me –  it gets me sketching daily and there is zero pressure. I decided to sketch flowers for this project. I’m very much a new sketcher so this is a great way for me to improve my skills.
  • Learning: I’m auditing a course offered by the University of Newcastle Australia. The course is titled: Drawing, Nature, Science, and Culture: Natural History Illustration 101. So far it’s been really good. I learned about it from a person in the Urban Sketchers Ottawa FB group. I’m very much a beginner so this course is ideal for me. We have one week to watch/read the materials and submit the assignments.
  • Riding: it looks like the spring weather is finally here. So now I’ve got my eyes set on doing a bunch of events that I’ve never done before. I plan to do all of the Gravel Guys events, Ride of the Damned, Almonte-Roubaix, and Rooted Vermont. I’ve never been much of a gravel rider but I’m easily convinced by the stories my friends tell me of quiet roads and epic adventures.

Well, that’s about it. Life is good. The eye is pesky but I’m confident it will be resolved. The sun is shining.

In a few weeks I’ll hit the one-year anniversary of my Barbie Butt surgery – I haven’t quite figured out how to celebrate this day. I think it will likely involve a bike ride, peanut butter, chocolate, and baked goods.

Bushtukah S.W.E.E.T Night

Last night it happened. I gave my talk at Bushtukah S.W.E.E.T night.

S.W.E.E.T night is a pretty big night in the Ottawa sporty women domain. The event sold out in less than one week – this was with zero promotion. Over 500 tickets – with no advertisements or super intense social media campaigning.

You know you’re onto something good when this happens. Right up until the event started last night there were ladies posting on the SWEET Facebook page looking for tickets.

This is fantastic. It also made me a bit nervous.

  1. I was giving a talk.
  2. I was giving it to over 500 women.
  3. This event has a long history of outstanding speakers.
  4. I function best behind a computer screen.
  5. I had never done this before. (Junior Toastmasters does not count.)

The last few weeks have really been all about March 31st and speaking at SWEET.

Thanks to my brother Gregory who put in so much time helping me refine my talk and giving me truly professional public speaking coaching, I was well-prepared.

Marc, my husband had to sit through many rehearsals of my speech and hear me stress about the night and even answer questions about which pants I should wear.

I could not have gotten up there last night without Gregory and Marc believing in me. As well, a huge thanks to my mother-in-law, Annette, for coming over and listening to a rehearsal. Her feedback really helped me feel more settled about the evening.

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This green binder has been my security blanket for the last 4 weeks or so. Each version of the speech (at last count I revised my speech 6 times) was carefully hole-punched and placed in this binder.

And last night, this trusty green binder helped me stand up and speak to over 500 women about resetting.

To give you an idea of how big last night was, here are a few photos from the night. The place was packed and the energy was contagious.

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The night was very special. I was super lucky to have some very good friends there last night to support me, help me calm my nerves, and to be ready to give me cues if I was speaking too fast.

It’s kind of hard to explain the energy of the evening.

Imagine over 500 women out on a Sunday night and add in amazing door prizes (including 2 bikes and I don’t know how many pairs of running shoes and high-end pieces of clothing), a fashion show, free food, shopping, and a sense of community.

Stir this up with a big spoon and add in a bunch of amazing clubs and groups who came out to encourage all these ladies to sign up for cycling, trail running, nordic walking, triathlon, roller derby, and any other activity you can think of.

This resulted in a festive, supportive, encouraging, empathetic, and contagious atmosphere.

I’m super honoured to have been able to be part of the night and to share my story.

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A big thank you to all the ladies who contacted me and posted comments on the SWEET Facebook page. Your messages and feedback really have put a boost in my spirits and confidence.

I know there were a lot of people who weren’t able to get tickets or attend last night. There isn’t a video of my talk but I did put my speaking notes and slide images into a document.

It’s a long read but my hope is that at the by the end of it you will: find your reset button and have learned the power of a support system, focussing on controlling the controllables, and in believing in yourself.

A big thank you to Charlotte, Judy, Natasha, and the rest of the Bushtukah team who I met last night. You put on a great night. Thank you for letting me be part of it.

……

On another note, I’ve decided to take part in the #The100dayproject. My plan is to sketch 100 flowers – one per day. The #The100dayproject is about creativity but this can be anything – sketching, writing, singing, photography, communicating, movement – really whatever you want it to be.

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I’ll be sharing my flower sketches on my Instagram account. If you sign up, tag me so I know and I’ll follow you.

The last time I posted, I wrote about turning a corner. And I have to say that I really feel like this has happened.

Last night would never have happened 3 months ago or this time last year.

I count myself as one of the lucky ones.

 

 

 

Turning a Corner

A few weekends ago, I felt like I had turned a corner with my health. But, I didn’t want to jinx my good fortune with being overly optimistic. So I held back.

I really tried not to cram too much into my days. To not get over zealous with my happily reawakened energy and spirit.

Good news – it wasn’t a fluke. I truly am feeling so much more like my regular self. I don’t have the same super high energy levels I had in 2017 and before the year that was 2018 – but I’m much closer than I’ve been in a long while.

I’m riding my bike regularly. I’m getting out on my fat bike on the good winter days. I’m back to yoga. I’m back to lifting weights. I’m back to my drawing. I’m getting out and seeing friends. I have the attention span to focus on reading again.

I’m no longer spending hours just sitting. I’m behind on my Netflix watch list. I’ve got lots of unread articles open in my multiple browser windows.

So yeah, a corner has been turned. Thank goodness. It’s a relief really. As a chronically ill person, I sometimes doubt my ability to get out of the malaise and lingering sensations of feeling unwell.

I know well enough now to be tread lightly and to not go bonkers with doing stuff.

On another note, in a few weeks I’m doing something I’ve never done before. I’m going to be speaking at Bushtukah’s SWEET night on March 31st.

This means I’ve been spending lots of time writing my speech, practicing my speech, and rewriting my speech. I’m super honoured and a little freaked out about speaking to 500 women. But, I know it’s a super beneficial experience – for me and the naked women sitting in the audience.

Learn more about Sporty Women Encouraging and Empowering Together (SWEET) and buy your tickets. If you come out, definitely grab me before or after my talk to say hi and chat.

Well, that’s about all I’ve got. I hope things are going as well with you as they are for me right now. Fingers crossed we can all be so fortunate.

Okay, 2019, So Far You’re Good

So we’re a month and a bit into 2019 and I have to say that things are turning a corner.

The shingles appears to finally behind me. My left eye did not come out of the ordeal completely unscathed but the damage is not too critical.

The uveitis also appears to be in the rearview mirror. I finished the Prednisone on Sunday and so far so lucky – no rebound flare.

So yeah, the health problems that dragged me down and put in me in a not great place at the end of 2018 and start of 2019 are now just a memory.

The thing with memories though is that they often leave a scar. I’d be lying if I didn’t tell you that I’ve got a few extra scars. The emotional scars that come with a roller coaster of being chronically ill are ones that I don’t think ever go away.

For me, the biggest scar is the fear of the unknown. What will happen next? Does the pain in my chest mean something serious or is it just indigestion? Is the pain in my stomach that wakes me up a blockage or something worse? What about these constant cramps in my calf muscles – is this just fatigue or a sign of something more? What is going to happen as I begin to increase my riding and get back to yoga? Will my body rebel and put me back in bed?

Trust is huge. And this is what I don’t have. I don’t trust my body. This body that I’ve tried to treat with the best care I can give it. A decent diet, no smoking, no drinking, regular sleep, steady exercise habits, and a generous amount of chocolate. It seems like I’m doing it all right – but for some reason my body feels otherwise.

So what do I do to overcome this fear of the unknown so I can rebuild my trust? Good question. I don’t know. All I can do, I suppose is just keep on keeping on. I’m getting pretty good at picking myself up. So this is what I’ll do the next time. And yes, I do believe there will be a next time.

What I can do is remember that today is a good day. That yesterday was a good day. And that there is a high likelihood tomorrow will be a good day. This way I can keep up the hope and slowly rebuild myself.

Admittedly, I feel this is all a bit self-centred. I am, after all not dealing with a diagnosis that sees me counting my days and months.

Last week Paul Dewar died. I did not know Mr. Dewar. However, the words posted on his Facebook page after his death from Grade 4 glioblastoma, have imprinted on me:

“…

It is easy sometimes to feel overwhelmed by the gravity of the challenges we face. Issues like climate change, forced migration and the threat posed by nuclear weapons. It’s hard to know how to make a difference.

The secret is not to focus on how to solve the problem, but concentrate on what you can contribute – to your country, your community and neighbours.

…”

I urge you to read Mr. Dewar’s full post and think about how you are making a difference.

I think it’s important to remember that the difference Mr. Dewar speaks of doesn’t need to be earth-changing. The small acts that you do each day when you interact with your family, friends, colleagues, and strangers are the ones that really make a difference.

Talking to a stranger as you stand waiting for the bus. Asking someone who looks sad if they’re okay. Picking up the phone and calling your friends just to chat. Remembering that everyone is dealing with something. Know that the little things do add up.

Not to leave this post on a sad note, I want you to think of these words left to us by two young women who recently died:

“…

I decided not to spend whatever time I had left (whether it’s a year, a month, another ten years—you don’t know until you’re gone) lamenting all the things that weren’t right. Instead, I’d make the most of it. I’m using cancer as the excuse I needed to actually go and get things done, and the more people I share those thoughts with, the more I hold myself to them. If I write this intention down, if I have it printed somewhere like I do here, I have to hold myself responsible, because I have people counting on me.

What is my intention? To live my life. To fulfill all those genuine dreams I have.

…” Fatima Ali,  who died in January at the age of 29 from cancer

“…

Live while you’re living, friends.

We control the effort we put into living.

…” From The Unwinding of the Miracle, A Memoir of Life, Death, and Everything That Comes After by Julie Yip-Williams

So now what? What do I do next? What do you do next?

For me – I talk to the strangers, I pick up the phone, I eat the cake and don’t worry about the calories, I plan for the future, I offer help, I listen, I keep on setting goals and doing all the things I long to do.

I owe this to myself. I owe this to you. I owe this to the people who can’t do what I can.

See Ya 2018

The thing is, the last two weeks and a bit have been a bit rough. Yes, you guessed it – I’m sick again. What started with a slightly irritated eye turned into anterior uveitis which them morphed into shingles on my forehead, scalp, and left eye.

This is the opposite of fun. And to be honest, this recent bout of sickness nearly broke me. I was finally pushed to my point of no return. Never before have I said to Marc, “I feel like I’m dying“.

It wasn’t the pain that made me say this. It was the feeling of giving up. Giving up the fight against this body of mine that seems to hate me.

I really was optimistic with the start of 2018 that once I had my final surgery, the health problems would be over. This simply is not the case. I haven’t felt well since August. Something is off, but according to my blood work, everything is normal.

When doctors keep telling me that there is no indication that there is a problem, it begins be a bit hard to hear. I guess I’m imagining my fatigue, the breathlessness, the small intestine pain, the blockages, the racing heart rate, and the general feeling of being unwell.

And now, still after the acute peritonitis and this crazy storm of uveitis (likely thanks to a funky little gene called HLAB-27) and shingles – I’m still considered to be healthy.

So yeah, now I feel like my body is winning this battle. I try to do everything right – eat healthy, exercise regularly, keep my stress low, get adequate sleep, etc., etc.

But it’s not working. I can’t stop the battle that my body is waging.

Normally this is when I write about looking forward or being optimistic or doing the best with what I have. I can’t write this anymore. I don’t feel this. I’m at the point where hope just seems to end in disappointment and sadness.

So now, I’ve accepted that it is what it is. After nine years on this sickness train, I’m okay with it. This is how it is going to be for me. Better than me than you – I know how to handle it.

I realize this post could be considered to be a bit of a downer – don’t worry. I’m okay. I’m in a new place. I have finally admitted to myself that there is nothing I can do to stop the chaos that is happening in my body. It really is out of my control.

Fortunately, thanks to 2018 Boston Marathon winner, Des Linden, I have a good quote to think of in times like these, “All I can do is control the controllables“.

 

Only Option is Forward

Two weeks ago I was in the hospital. I thought I was just going in for a quick trip to the ER to get my intense stomach and pelvis pain sorted out. I did not expect to stay until Thursday afternoon.

So many doctors. So many questions. So much pressing and poking of my abdomen. So many blood draws and two CT scans. This was all on Tuesday. At this point, Marc was still supposed to be getting on a plane the next day to fly to Belgium.

This all changed when the doctor started asking me about my living will and my end-of-life directives. This is when shit got real. Turns out that I had acute peritonitis. You can Google this if you want. Let me just tell you it’s bad. 40% of people who get this die from it.

Those days in the hospital were crazy and intense.

And now, here I sit, two weeks later. The pain in my abdomen, pelvis, and the area where my rectum used to be finally eased off on Saturday. (Yes, three days ago.)

I don’t know what caused the acute peritonitis. I saw doctors from the gastro team, the medicine team, the general surgery team, and the gynaecological team – no one could tell me why I got sick. It’s a mystery.

What is not a mystery is that life is for the living.

So now, it’s forwards and upwards. I don’t know why I got sick. I do know that never want to experience pain like that ever again (the pain caused me to faint and crash land on the floor).

But this is the past. I live in the here and now. So now I get back to life. I was sick, and now I’m not. End of story.