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spoonieironman

•Bedridden➡️Ironman🏊‍♂️🚲🏃
•Chronic Illness Advocate🥄
•Helping Spoonies with fitness, mental health, habits, & more #progressnotperfection
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Guess what, it's okay if you don't have it all fig

Guess what, it's okay if you don't have it all figured out right now. Two things I found that helped me make great strides in life were being patient with myself that progress will be made and not giving up hope that I could put in the work to make it better. If you have those two things, I believe we all can make progress on the direction we want to see things go.
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Side note, I don't think any of us figure out life enough to say we solved the Rubik's cube. This thing called life is too hard to solve everything with this puzzle. No one has it figured out so don't compare yourself to others who act like they do.

Limiting yourself is one of the worst things you c

Limiting yourself is one of the worst things you can do in life. I use to say things like "I will never be able to do that" or "I will always be too sick to do that". While I did truly believe it at the time, I didn't know that reframing my mindset could change so much. ⠀
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I feel like it's natural to have negative thoughts at times. For example, saying "I'll never be a triathlete or marathon runner" while being bedridden in my parents master bedroom with a visiting nurse service, well, it's a realistic thought. But this shouldn't last forever. ⠀
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There will always be ups and downs in our lives with chronic illness, it's what we do during these times and the mindset we have towards them, that will determine your journey. So here is the way I think about it. ⠀
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During the "ups" we need to do everything we can in order to make as much progress as possible in the direction we want our lives to move in. This could be in various areas of life like personal, professional, health, spiritual, and more. Remember, this is not about perfection, but just progress. ⠀
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Then during the "downs" we need to do everything we can in order to limit the amount we might slide backwards. This could be leaning into self-care, talking with a therapists, or asking a friend to help us during a tough time.⠀
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You may see a pattern there. It's that even during the "ups" and "downs" we need to do everything we can in order to put ourselves in the best place for success. ⠀
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Success might be getting a lot done when things are going well, maybe even trying something you didn't think was possible. Then there will be times that success will be measured by just getting a few self-care tasks completed, because that may be all the spoons we have that day.⠀
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The most important thing, don't put limiting beliefs on what you can do during the ups or the downs. In time, you'll start to see progress and the ups will be longer, and the downs will be shorter. Before you know it, you might even be a completely different person that you NEVER thought was possible.

Living with a chronic illness is all about balanci

Living with a chronic illness is all about balancing various aspects of life. Some of these are within our control and others are not. The key here is working on the parts we can control.
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A big part of my journey that I always tell people and allowed me to make great progress, is making time for self-care. This means balancing my physical and mental wellness routines. It's not easy to find the time or energy, but it's important.
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Remember, if you're not MAKING time (yes you need to make time) for your physical and mental health, then you'll need to make even more time for your illness.

There are so many different paths and challenges d

There are so many different paths and challenges during a recovery. The MOST important thing to remember is that you aren't alone. There is a gigantic community of people who have been through all of this, and the best part is we're always there for each other. #Spooniecommunity
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Reposted from @howmental Double Tap if you feel this! ❤️ I think the scariest part of recovery for me was people thinking that I was completely fine now… I vividly remember a friend saying, ‘Oh shit I completely forgot that happened to you, but you seem to be fine now though’. It was frustrating because whilst the disrupted sleep, intrusive thoughts and flashbacks were certainly getting better I was by no means completely ‘fine’. I think I’d been relying a little too much on friends checking in on me, so when that started to lessen, I was really worried I was going to get worse again. However, these thoughts are a natural part of recovery, so if you’re experiencing something similar, you got this 💪 and we've got you! 😘 If you’re on the recovery path, why not check out our @HowMental partners? We’ve curated an amazing list of apps, therapists and organisations who all want to help you get the most out of life! For more info tap the link in our bio and click ‘Our Partners’.
📸: @worrywellbeing

There are many ways we can view a chronic illness

There are many ways we can view a chronic illness and the challenges that come with it. When we're first diagnosed, it's difficult to process it all and what might lay ahead. We all go through this complete mind#@$& ! ⠀
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In time though, it's on us to change our mindset and reframe the way we approach the adversity we face on a daily basis. You can look at it in a negative way and let it bring you down both mentally and physically. OR you can take on this challenge and climb to the top of it. ⠀
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What will you choose? ❓❓❓

There will always be rough days with a chronic ill

There will always be rough days with a chronic illness. There will be days when we can't get out bed, can't get out of our own head, can't get rid of the pain. But remember, every storm eventually runs out of rain. You've been through days like this in the past, and you've come out on top before. This too shall pass. Stay strong. 💪💯

Reposted from @thunkfool just start! ___ There are

Reposted from @thunkfool just start!
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There are many parts of a journey with a chronic illness that are extremely difficult. When I saw this, a couple came to mind immediately.
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1 - It's not easy to get started at something new. This could be a new treatment, seeing a new doctor, or starting a new self-care routine. The important thing is to start because if you don't, you'll never see any change.
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2 - There will be days when you see two different paths. One will be easy, the other will be harder. I can promise you that if you go with the easier option, you won't see any progress. If you go with the more difficult option, you'll be moving closer to your goals.
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3 - Don't judge yourself by whether or not you reach the top of the stairs like in this graphic. Living with the challenges we face is about progress, not perfection. Even if you make a plan and only finish 25, 50, or 75% of it, you'll still be moving forward, and that's still great.
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🐢 Remember, turtle steps are better than no steps at all. 🐢

🚨 #OnTheBlog - An Open Letter To Mike Reilly, V

🚨 #OnTheBlog - An Open Letter To Mike Reilly, Voice Of Ironman: My Ostomy Life Is NOT A "LOUSY" Life. Link in bio for my letter and swipe 👉 to hear the audio! 🚨
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I love the sport of triathlon and that is a surprise for anyone like me. After battling chronic illness for my entire life, I never thought I'd be able to take on a sport that actually is comprised of three sports.
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For that reason I never thought I'd be a triathlete and for that matter I NEVER thought I'd be a full 140.6 mile IRONMAN. This in includes a 2.4 mile swim, 112 mile bike ride, and 26.2 mile marathon, all in one day.
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I went from bedridden just a few short years ago to IRONMAN, and there was mainly one thing that allowed me to do this, MY OSTOMY. My ostomy gave me my life back, my ostomy saved my life, and I am ostomy proud.
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So when I picked up @ironmanvoice's book, I was hurt to way he described the life I and so many others ostomates live with an ostomy with the word "LOUSY". I was floored to hear a man who is know for being so supportive of the adversity everyone experiences in life and this sport, to talk so negatively about something that isn't that uncommon anymore.
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@ironmanvoice you've inspired me so much. Hearing you call out other people's names at my 13.1 mile mark of the marathon kept me going in Mont Tremblant. Then heating you say the words "Brian. You. Are. An. IRONMAN" as I crossed the finish line was one of the best moments of my life.
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Please reconsider the wording you use for ostomates just like me. I know I'm not the only finisher with an ostomy, in fact, I know more than a few finishers with one. And I promise you one thing, their ostomy allowed them to not only cross the finish line, but get to the start line of the entire IRONMAN journey as well.
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Thank for all that you've done for those with many challenges and inspiring so many as well, but I have to say, you got this one horribly wrong and it hurt deep.

Living with an ostomy means living with many stigm

Living with an ostomy means living with many stigmas, and most if not ALL are inaccurate. My ostomy allows me to live a normal life, my ostomy saved my life, and I’m #ostomyproud!

Tomorrow, is World Ostomy Day. A day to raise awar

Tomorrow, is World Ostomy Day. A day to raise awareness for those who have ostomies and remove the MANY stigmas that come with them. I'll be sharing many posts on my Facebook and Twitter pages, including some posts here as well.⠀
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Here are some things I know about ostomies from my experience over the last 9 years. ⠀
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An ostomy is not smelly, like many people think.⠀
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An ostomy is not a lousy way of life (more on that coming soon)⠀
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An ostomy allows a person to do many activities again. ⠀
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An ostomy allowed me to go from bedridden to IRONMAN.⠀
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An ostomy doesn't keep someone from being intimate.⠀
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An ostomy allows people to eat many normal foods again. ⠀
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An ostomy allows people to live with less pain or even none. ⠀
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An ostomy is not a tragedy!⠀
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An ostomy saves a persons life! Including mine!⠀
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There are so many stigmas and misinformation around ostomies, and the world needs to know what is and is not true. Tomorrow, I'll be sharing what I think is a powerful piece I wrote where a man who is known for being empathetic, compassionate, and inspiring to so many others, did not know the truth about what life with an ostomy is like. Be on the look out for my open letter on World Ostomy Day tomorrow morning.

Last weekend I got invited up to Lake George for s

Last weekend I got invited up to Lake George for some time away from reality and the great outdoors. It was refreshing to get to this area of the country I love. Best part, it was filled with activities that I love too.
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For anyone who thinks and ostomy will slow you down, I'm here to tell you it will probably speed you up. You get your life back and the world is yours to explore again. Yes, it takes some figuring out but when you do, you'll have weekends packed with adventures like these.
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In two days I swam in open water, went out on the kayak, cycled, golfed, hiked, enjoyed a boat ride with my favorite beer, and so much more. All things I wouldn't have been able to do without my ostomy. All things I'm no longer afraid to do.

❓ What is something in your past that has made y

❓ What is something in your past that has made you feel like a prisoner? ❓⠀
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It's been a long process and journey in order to let myself out of prison from my past with chronic illness. For years I lived in what used to be and limiting myself. These limiting beliefs kept me from moving forward. Hell, it kept me from taking a single step at times. ⠀
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There were horrible memories from being sick in college, constantly seeing doctors, long hospital stays, and of course surgery after surgery. This all left me feeling trapped and thinking there was not future. But was there? ⠀
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The reality is that I was putting limiting beliefs on myself before I even tried. Now there will always be limiting beliefs by others which you can't control. To be honest, I even had family members who didn't believe in what I could actually do.⠀
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Now while you can't control their beliefs, you do have control of your own thoughts and what you think you can accomplish. It takes work and I would always suggest talking to a mental health professional to help with this, but you can re-frame your mindset to put yourself in a better place. ⠀
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Once you're in this better place and you've begun the process of removing the limits you've placed on yourself, WOW. Life gets exciting. You'll be amazed at what you can do and what you will do.⠀
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The bottom line, let others have limiting beliefs on what you might be able to accomplish with a chronic illness, but don't let those beliefs impact your own limits. And I'll tell you what, it's fun to show others what you can truly do and prove them wrong, and they'll be happy you did.

No matter how well someone is doing with a chronic

No matter how well someone is doing with a chronic illness it's hard to describe what goes on behind the scenes.
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Good or bad, the chances are it's much harder than others think and a lot more work than others realize as well.
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The reality is that living with a chronic illness is a 24/7 job, one none of us signed up for. There are rarely breaks with this job, but we're doing our best to manage it every day.
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Repost:
If only you could see what it takes for me to function #illnessillustrated #invisibleillness #chronicillness #autoimmunedisease #ibdawareness #spoonie #immunocompromised #digitalart #artwork

"Brian, You. Are. An. Ironman" were words I never

"Brian, You. Are. An. Ironman" were words I never though I would hear Mike Reilly say, but two years ago at Ironman Mont Tremblant I was able to hear those words exactly as I crossed the finish line after 140.6 miles of swimming, cycling, and running (walking really). ⠀
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For those of you that think comebacks can't happen to a Spoonie or you, I'm living proof that they can happen. I went from visiting nurse service to start line. From bedridden to finish line. From broken, to IRONMAN! ⠀
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Now I'm not saying going out and set a goal of completing 140.6 miles in 17 hours. I know that takes a certain level of insanity or lack of brain cells, and I clearly have both. But I am here to tell you that this journey, started similarly to journeys so many of my experience also, one step after surgery. ⠀
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My original goal was not to take on a challenge like this in anyway, yet my first challenge felt similarly hard. After my proctectomy to make my ostomy permanent, my first goal was to get up and cook my own meal in the kitchen, then walk back to the bed myself. This felt like an Ironman at the time.⠀
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This is where it all starts for each of us. It might be after a flare or surgery, but recovery starts for all of us with one step. One movement in a forward direction. Then we have to do what we can to keep the momentum going. We have to create a short and long term plan. Something that takes into account "turtle steps" adding up overtime to create big changes. ⠀
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I never thought my turtle steps would end up taking me to an Ironman start line. Did you read that right? I said start line. Don't measure the next steps you take by reaching a certain goal or finish line, measure your success by showing up and starting every single day.
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Create your own start line and start a new journey today.

One of the hardest parts about living with the cha

One of the hardest parts about living with the challenges so many of us face is the balancing act that comes with everything. We're plagued with physical challenges and the adversity that comes with them, but also the management of it all. ⠀
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On top of that, we also have to take care of our head and heart as well. Sadly this is too often overlooked or ignored. This is one of the last things we can ignore though. I can tell you that when I began to accept the mental challenges I faced, my physical health improved.⠀
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Make time for self-care. This could be doing something simple you love, meditation, getting outside for a walk, or going deeper and talking to a professional. Please, please don't forget or ignore taking care of your heart and head. ⠀
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They're crucial in the healing process and becoming healthy again.
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And if you want to hear some of the best advice, from some of the wisest people in the world, check out @lewishowes and the School of @greatness podcast! It's changed my life.

This morning at 6 AM I put my wheels to the road a

This morning at 6 AM I put my wheels to the road and got in 18.88 miles as a part of the Get Gutsy: Tour Across America! This event benefits the Crohn’s & Colitis Foundation, and is a fun way to stay active and help find cures for IBD patients like me.
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You can join the fun and log your own miles by visiting the link in my bio! – You can choose from a variety of activities, including running, walking, cycling, swimming, paddling, and more! #GetGutsyUSA

If you haven't already noticed, I'm a little bit o

If you haven't already noticed, I'm a little bit of a lunatic. And by lunatic, I mean an early morning person. At times, a very early morning person. ⠀
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One of the biggest things that was thrown out of wack during the pandemic is my morning routine. I used to be up at 4:45 AM (You read that right) and at the gym around 5 or 5:15 AM. ⠀
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Now while I know what you're thinking, it felt great to leave the gym and feel like I've accomplished something great for myself before 6:30AM. This jump-started the rest of my day and sent me in the right direction for everything else. ⠀
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Since the middle of March, that routine was taken away from me and I felt lost since I didn't have anywhere to go. Now that I am starting to feel better and my mind/body are strong again, I'm starting to wake up earlier again, AND IT FEELS GREAT! ⠀
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I know this might sound like the last thing you want to do or the last thing you can do. Trust me, as a fellow Spoonie, there are plenty of mornings that I tell myself to just stay in bed and cuddle my dog. ⠀
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But there is something energizing about making the hard decision. Telling your inner voice that you're going to do what you know is best for you and try to accomplish something early in the day. ⠀
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So what do you love to do? What is something that you'd like to add to a morning routine? Or what I'd love to hear, what are you doing right now to start your day in the right direction?

I know what it's like to battle a chronic illness

I know what it's like to battle a chronic illness every day. I know what you're going through every day. I also know a couple of other things too. ⠀
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You're stronger than you think. That's right. You're incredibly strong. Your illness has given you a wide variety of strengths that others in this world don't have. You know how hard life can be and it's shown you what it takes to get through the difficult times. ⠀
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Here is the second thing I know. If you want to create change in your life, I mean truly change things, you can. It takes reflection on what you've been through, the foresight of what might be ahead in your journey, and planning in order to navigate the challenges you'll face.⠀
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When you put reflection, foresight, planning, and your strength together, so much is still possible.⠀
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Breaking News...It won't be easy all the time. It will be a process and it will take time., I've always said that living with a chronic illness and attempting to overcome the adversity we face takes the mindset of an Olympic athlete. That means showing up every day and being extremely patient with the fact you won't see results overnight. ⠀
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Here is the good news, when you combine all of this together, YOU WILL SEE A DIFFERENCE. At first, there will be small improvements, but then the small improvements will add up. The best part, when all of these small improvements accumulate you'll be in a completely different place to take on life. ⠀
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Think I went from bedridden to IRONMAN overnight? NOPE! It took years. But I decided to take control of my life again. I decided to show up every day and say yes to the hard decisions. I decided to be proactive and create the change I wanted to see. ⠀
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Now it's time to sound cliche. If I can do it, you can do it. ⠀
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Don't know where to start? DM me and I will be happy to chat and hopefully help you along the way. There is nothing better than helping out a fellow Spoonie and seeing them succeed.

🚨Update!🚨 Well, it's been about 30 days sinc

🚨Update!🚨 Well, it's been about 30 days since I jumped out of my comfort zone and shared pictures of me with my ostomy at what I'm hoping was the lowest point of my most recent Crohn's flare. Personally, this isn't something I do very often but with all that's going on in the world I wanted to share the progress we can make when we really put our minds towards a mission. ⠀
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My mission was to take advantage of making the hard decision of going back on low dose prednisone in order to get my inflammation under control. A quick recap, during May and June I was walking around the house like an 80-year-old man. It was clear that I was in a Crohn's flare, but on top of that, I was experiencing HORRIBLE lower back pain. ⠀
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On July 6th I saw a back specialist who told me everything was muscular, which allowed me to change my mindset. Knowing that the pain was structural, I wanted to reclaim my health from the inflammation that clearly was taking over my body. I COULDN'T go any longer feeling the way I was. It was time to make changes. ⠀
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So I did what I think everyone should do when facing adversity, sit down, reflect, and make a plan to tackle the challenges ahead. I set a 4-month plan in place to start of swimming and include only low impact exercises. This would hopefully allow my body to adjust to being active again. I would stick with this low impact training plan for the first 60 days. ⠀
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I'm 30 days into this plan and I'm happy to report I'm feeling a million times better. Yes, this is partially because of the prednisone but I'm only on 15mg so I'm not on a superman dose. The other big part of feeling better is the hard work I've put in and the fact I've shown up on a regular basis to improve my own health. ⠀
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Over the last month, I swam a told of 16 days and completed 16 miles. In addition, I competed 4 kettlebell workouts and 1 26.5 mile bike ride. This means I showed up 21 out of 30 days in order to control this flare and take back my health. As you can see, the pictures speak for themselves. ⠀
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I hope this helps others. I hope this might show my fellow Spoonies that we can change things. We need a plan and to show up on a regular basis!

NOW ON THE BLOG: Reality Vs. Expectations With A C

NOW ON THE BLOG: Reality Vs. Expectations With A Chronic Illness. Link in my bio!⠀
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I'm going to jump right in and share a harsh reality, our expectations for life rarely become true. This isn't easy to admit or accept, but it's a fact. This is even more true and hard with a chronic illness. ⠀
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In my latest blog post, I include some tips on how to navigate the mental challenges that come with this and a couple of real-world experiences with reality vs. expectations that I've lived through. ⠀
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In the end, if we can reframe our mindset to accept the fact that life hasn't been what we wanted, and likely won't go as planned in the future, it will make it much easier for us both mentally and physically to succeed along this journey. ⠀
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#chronicillness #invisibleillness #chronicallybetteryou #Spooniesupport #Spooniewarrior #Spoonie #chronicpain #chronicfatigue #brainfog #butyoudontlooksick #spooniecommunity #patientadvocate #reality #expectations #mentalhealth #physicalhealth #healingjourney #chronicillnesscoach #chronicillnesssucks #chronicloveclub #Spoonielife #Spoonieproblems #acceptthejourney #Spooniefamily #Spooniestrong #Crohns #ostomy #IBD #mindset #noteverydisabiltyisvisible

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