Learning you have a pulmonary fibrosis sucks. There is really no way to sugar coat it. Most people have never heard of it before they or some one they love gets the diagnoses. At first there is confusion. Then doctor starts getting into the details… and it’s life altering.
The way everyone reacts to this news is going to be a little different. There is a whole range of emotions to bounce around and sort out. But, I think that all IPF/PF sufferers eventually fall into one of three categorizes.
Those who except it and do everything they can, to remain as healthy as they can, for as long as they can. They research, ask questions, go to pulmonary rehab, do their home exercises, know their medicines, take them as directed, etc.
Basically whatever plans they and their doctors come up with… are followed through on. They have good days they have bad days, but they try to make the most of each day.
There’s also the folks who except that they have this terrible illness, but put in varying amounts of effort. Maybe they take their meds, but they don’t ever use their oxygen. Maybe they go to rehab, but the rest of their time is spent in a recliner.
They know their sick. They don’t like it. But they still aren’t doing all that they could. Maybe they don’t fully realize how serious their situation is or maybe their symptoms haven’t escalated enough to fully motivate them.
Lastly you have the patients who are in denial. Oh they may admit that they have pulmonary fibrosis. But they believe they’re fine, or at least that’s what they tell others.
These are the people who have no desire to discuss their illness or possibly to even acknowledge it at all. They’ll outright reject any effort this illness requires of them. They’ve no desire to listen, to learn, to make decisions, etc.
Oxygen? Don’t want it? Doctors? What do they know? Medicines? They’re just a scam. My attitude? Deal with it.
Some people, of course, are jerks long before they developed pulmonary fibrosis. The illness just heightens it. Others simply get sideswiped so hard by the all the illness entails… that they just shut down in a kind of self preservation attempt.
If they are lucking they will have a caregiver that cares enough to do the listening, the research, and the asking of questions. Someone who will drag their butts to the doctors, to the specialists and to rehab.
But caregivers shouldn’t be shouldering all the weight by themselves. If you have someone giving their all towards your illness… then you should be grateful beyond measure. It should motivate you. Not anger or annoy you.
I’ve meet many people who are tackling this terrible illness all by themselves. Folks who would love to have the helping hands that others either take for granted or try to push away.
If you have someone willing to suffer through your illness with you. Someone fighting tooth and nail to keep you alive. To keep you as healthy and happy and enjoying the best quality of life possible. Then you owe it to that person to put in effort too.
Everyone in all three categories have bad days. Days when the fatigue robs you of any desire to try. Days when pain makes you snap at a loved one or a nurse.
We all experience moments where we’re looking at a challenge and we’re just to short of breath. Something that never would have slowed us down before… suddenly has us stopped in our tracks.
It can be so frustrating you want to scream, but you don’t even have the breath for that.
I get it… I do. I have literally been there. This disease can be overwhelming and I completely understand the temptation to shutdown emotionally and not deal with it.
I know what it feels like to go from running through the park, lifting weights, working full time, hanging out with friends regularly, or carrying all the groceries in at once like silly men are obligated to do…
To my whole world seeming to consist of my bed, a recliner, and the bathroom. With the occasional escapes to the doctors office or pulmonary rehabilitation being the only change in scenery.
My world got pretty much the opposite of sunshine and rainbows. But here’s the thing… I chose not to be in the last group or even the second group. I chose to be in the first.
I chose to to do everything doctors asked me to. I got sick of eating. Trying to put weight on a body that had withered away to a mere 100 pounds sucks. I got tired of the cannula blowing in my nose. I still wore my O2 everywhere. I did what ever I needed to, to improve my situation or at the very least to hang on.
I treated my caregivers, my family, my friends, the doctors, the nurses, the pulmonary therapist, everyone with gratitude for all their efforts on my behalf.
I’m not saying this to point out somehow that I am a better person or the better patient. Because I am not. What I am trying to say is that doing all that I could, being nice to others, not letting pulmonary fibrosis conquer my spirit just because it was conquering my body… was a choice.
Its a choice for all of us to make. Just because our situation sucks… Doesn’t mean that we should let ourselves slip into denial or treat others poorly when reality intrudes on that denial.
Attitude is a choice. It dictates how we respond to our situation and how others respond to us. Putting your head in the sand is not going to make your disease go away. Pretending nothings wrong or ignoring your symptoms isn’t going to improve your situation.
Pulmonary fibrosis doesn’t care. It’s going to progress regardless of the walls you put up to protect yourself from the truth.
But I tell you this much to be true. If you make the decision to stay positive. To take an active role in your treatment. To do everything thing your doctors ask of you and more. To be nice to those around you…
Your quality of life will increase because of it. It wont cure you, but your life will be happier and more fulfilling. It wont erase you struggles, but it will make dealing with them easier and more rewarding.
It’s your choice.