When Ronnie asked me to do a guest post I was excited to do it immediately. I have a lot of disability-paid hours to spare, tons of time during treatments for my 24% lungs, and a mind that needs a break from anticipating a call that is coming anytime. A call to tell me whether the doctors think its time to list for transplant following the assessment I did 3 weeks ago.
The delay in my post-writing was a combined result of the stresses of waiting for that fateful call, and the urgent desire to find a way to convince anyone out there to avoid my fate at all costs.
I had 80% lung function until I was 19 years old. No admissions until I was 23. In the years from 19 to 23, I lost 40% of my lung function, and I didn’t smoke or do drugs at all, or drink or date much. It was a direct result of a lifetime of little to no physio, and putting life before CF always. University, part-time jobs, socializing, everything typical of a young adult. I saw my numbers fall at clinic and forcefully proclaimed that I felt “fine”. Which was true, until I went below 50%.
I want you all to consider that you may have things going on right now that feel really important. Maybe you go to school, maybe you work, or both. Maybe you like going dancing all weekend and find it hard to squeeze in treatments. Whatever it is, take a moment to live slower. Physio is not as time-consuming as it feels. Spend 15-30 mins on facebook with your vest on. Watch your favourite show with the flutter in your mouth. Get a puppy and take him for a run every day. You’ve heard it all before, but trust me, the way it feels to wonder if you could’ve helped yourself have just 10% more lung function is too difficult to explain. 10% that could’ve meant pursuing surrogacy with my husband and having a baby on the way instead of living in the limbo of pre-transplant. 10% that would mean no oxygen concentrator chugging at night, or beside you in the mall, or preventing thoughts of winter trips to Florida. Maybe even 10% that would’ve let you be healthy enough for the most fabulous drug trial to stabilize your pft’s and save you from transplant entirely. It’s possible. It’s not about saving yourself from CF, its about making your life better. Just the little bit that you have the power to control, means a complete difference in your future at 25, 30, 35, and beyond.
And that university load that’s holding you back? That job you’re always stuck overtiming at? You know what happens to them? They become a terrible math equation. My 4 years at university bought me only two and a half years at my job before I had to stop working. Please remember that slow and steady wins the race, and unfortunately with CF, our best bet is to sometimes compromise living so busily in order to make it to the next step with good health.
If only I had known that my dreams would come true, and I would fall madly in love and ache for the rest of my fairytale. I would’ve never EVER missed a single physio session or chance at exercising. If only I had known that feeling fine is not enough. That’s my one regret.
The delay in my post-writing was a combined result of the stresses of waiting for that fateful call, and the urgent desire to find a way to convince anyone out there to avoid my fate at all costs.
I had 80% lung function until I was 19 years old. No admissions until I was 23. In the years from 19 to 23, I lost 40% of my lung function, and I didn’t smoke or do drugs at all, or drink or date much. It was a direct result of a lifetime of little to no physio, and putting life before CF always. University, part-time jobs, socializing, everything typical of a young adult. I saw my numbers fall at clinic and forcefully proclaimed that I felt “fine”. Which was true, until I went below 50%.
I want you all to consider that you may have things going on right now that feel really important. Maybe you go to school, maybe you work, or both. Maybe you like going dancing all weekend and find it hard to squeeze in treatments. Whatever it is, take a moment to live slower. Physio is not as time-consuming as it feels. Spend 15-30 mins on facebook with your vest on. Watch your favourite show with the flutter in your mouth. Get a puppy and take him for a run every day. You’ve heard it all before, but trust me, the way it feels to wonder if you could’ve helped yourself have just 10% more lung function is too difficult to explain. 10% that could’ve meant pursuing surrogacy with my husband and having a baby on the way instead of living in the limbo of pre-transplant. 10% that would mean no oxygen concentrator chugging at night, or beside you in the mall, or preventing thoughts of winter trips to Florida. Maybe even 10% that would’ve let you be healthy enough for the most fabulous drug trial to stabilize your pft’s and save you from transplant entirely. It’s possible. It’s not about saving yourself from CF, its about making your life better. Just the little bit that you have the power to control, means a complete difference in your future at 25, 30, 35, and beyond.
And that university load that’s holding you back? That job you’re always stuck overtiming at? You know what happens to them? They become a terrible math equation. My 4 years at university bought me only two and a half years at my job before I had to stop working. Please remember that slow and steady wins the race, and unfortunately with CF, our best bet is to sometimes compromise living so busily in order to make it to the next step with good health.
If only I had known that my dreams would come true, and I would fall madly in love and ache for the rest of my fairytale. I would’ve never EVER missed a single physio session or chance at exercising. If only I had known that feeling fine is not enough. That’s my one regret.
Note from Ronnie: Thank you SO MUCH Michelle for taking the time to write this pointed and powerful guest blog. I've had the opportunity to share various emails with you and one thing is for sure, your desire to help others is very clear. You explicitly said to me "I hope my story helps someone out there". Well Michelle, I can guarantee you that this will help more than one. Sometimes, sharing our one regret can be more powerful than sharing our many accomplishments. Thank you.
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