The Hardest Prison to Escape is in Your Mind

It has been a ridiculous amount of time since I last blogged. My brain has been filled with lots to say but not wanting to immortalize it. I have been feeling anxious and lost and guilty and vulnerable and sometimes just numb. My CF is no longer the centre of my universe. It never defined me but it did dictate a lot of what I could or could not do. A lot of what matters to me has come into focus but at the same time I have felt very unmotivated to change my life. I have taken a massive break from my CF life. I have slacked in my exercising, walking Cali, tube feeding, being productive, basically I’ve just existed. It’s gut check time for me. I know why I have been living this ‘lack of existence’ but it needs to end.

In a nut shell, I took a sabbatical from my old life.

I was scratching and clawing my way through each day until October 19, 2021. And then my life changed. Trikafta has created the monster I have become. I am very upset with myself. In a way I feel like I gave up. I am ashamed of my lack of living. I have hit roadblocks like this before and I have righted my path and this is no different but in someways I feel afraid to push out of this comfortable nest I have created. But I know I need a big push out right now. Getting dropped from the nest is a natural process in growth. I guess thats it for me. I’ve stopped growing and learning and changing.

I had all these big dreams I wanted to try to reach ‘if’ I ever got a transplant and in a way Trikafta was supposed to be that second chance. Although a lung transplant would have, if all went well, given me my breath back. I could have been able to go back to playing all my favourite sports, join some teams, consider going back to school, possibly returning to the work force doing something I love. Trikafta doesn’t give that to me. It has stopped my CF from progressing but it has NOT erased all the damage caused by decades of fighting. It’s hard to wrap my brain around this. I am doing all the exact same treatments, taking all the same meds, going to all the same doctors appointments and dealing with blindsides, as before. The only thing missing in my life is a chest full of mucous. Which is still a really big deal but still the only change since starting trikafta. I did NOT get a different life.

Caveat: I WOULD NOT CHANGE THIS LIFE FOR THE OLD ONE.

Now I sit at a crossroads. I need to start living again. I hate change. COVID turned me into a hermit. I tolerate people and most times I do not enjoy being around them. I have a small circle of people in my life that I love and would defend to the death but I don’t allow new people to come into my life. I am missing so many chances to share my light with others and for them to share theirs with me. I really don’t know why I am shut down right now. Maybe I have some depression to address. Also maybe my identity crisis is still a crisis.

I do believe that trikafta has impacted my mental health. There are so many comments on the Trikafta blogs of people stopping it because they are so effed up in the head. It’s truly tragic. How can a drug be so awesome and so awful at the same time. That is a huge quandary for so many of us.

I just wanted to put my thoughts down to be real with myself and show my imperfections to the world, in the hopes of making the changes I desperately need.

I am OK but I want to be Great again! – N

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