Anxiety is a common symptom of CF. There is anxiety from finances, whether or not something is going to make you sick, if you can get the meds you need in time and under budget, or if you can make it out of clinic without IVs or in the hospital.
I think there is a line chart that depicts anxiety in the life of a CFer. It starts low as a child in a healthy home environment, so long as their parents don’t pass on the anxiety they had when they found out. However, it’s high if you’re diagnosed later in life, but then diminishes once you realize it’s not the end of the world. Anxiety enters when trouble does. Sickness. Resistance to meds. Hearing the “T” word for the first time: transplant.
I’ll stop here for a second to pause and either remind or inform everyone that anxiety doesn’t do anyone any good. You can’t control the number of hairs on your head, your height, or the days of your life. There are some things that are always going to be out of your control, while others are under your influence by how you live and think. One thing is certain about all of these things: anxiety never changes the outcome. Since it has no positive bearing on things, we are advised “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.” Phil 4:6. It is okay to be concerned about things that press on you, but do not dwell on them and allow them to get a hold on your psyche.
There is a huge opportunity for anxiety in the realm of resistances to drugs and where that leaves us when there are no other options to get healthy again. It’s looking transplant and mortality straight in the face and deciding what move you’re going to make next. Here’s some of my story about anxiety recently.
Fatboy and the battle with anxiety
I really try my best to live by that advise in Philippians. I’ll be the first to admit that I’m not as successful as I’d like to be, but I believe that the way I go about my life shows my effort and my faith. When I have those moments, they are usually short-lived, and that’s what makes the difference to my mindset and my health associated with dwelling on the unknown. I often drive Beautiful up the wall when anxiety enters her mind about something and I refuse to take part in it because either 1) we don’t have the information I need to determine the threat level or 2) there is a 75% chance that it will all be fine tomorrow without doing anything.
It’s no fault on her part to think that way at all. I have my moments when I forget that and freak out beyond reasonableness and I also have years of experience with troubling times that work out just fine that have cemented my practice of not worrying far deeper into my way of dealing with crap. I have a good 16 year jump on these extreme life and death scenarios that she (thankfully) was able to grow up without concern about.
I have extreme resistances and allergies to NSAIDS, cefepime, and sulfa drugs. I actually became allergic to cefepime after years of IVs, but particularly after a rough couple of years where I had no fewer than 8 PICC lines for 2-week rounds of IVs. Thankfully, I’m still very susceptible to tobramycin and Fortaz. My body laughs at every oral antibiotic, so if these few meds kick the can, too, I’m in deep water with transplantation being my only life vest.
Does that cause anxiety? You bet it does! However, it’s not an ever-present anxiety. I don’t worry about it all day or even every day. I probably go a week or so without connecting the dots of my situation to the point of being desperate. If you can get to that point, you’ll be serving your body and mind well.
What do you do to alleviate anxiety when it strikes?
The anxiety that comes with transplant is tough but having gone through the evaluation and now being listed, I can tell you that it gets easier so long as you are willing to meet it head on. It is the hardest thing you will ever do, but if you approach the wait like training for an Olympic event, you can ease that anxiety by being in the best physical and mental condition possible.
Thanks for the reassurance of that. I have wrestled with the possibility
enough times in the last 5 years to be to the point now where I actually
have to remind myself to keep these lungs as long as I can because I see
CFers running and doing things they haven’t done since they were kids. I
know transplant will come relatively fast at my center if that time ever
comes, so I will have to be completely prepared once listed.
I try to remember that the only thing I can control in life is me, and that the way I react to things teaches my children how to react to things. Meditation, & running also help!
Yes, exercise is a VERY good anxiety reducer. Good call.
I find myself getting anxious about these things for Aidan and then realize that ‘anxiety’ really doesn’t change a darn thing about the situation. Aidan also has issues with many allergies to IV and oral antibiotics and MRSA for 3 years only complicates it. He is down to sooo few drugs and he is only 6 years old. Some days it is completely daunting especially when he is sick with sinuses that he can hardly lift his head. I find myself totally beside myself for what will be left for him as he gets older….But I have to talk myself down from it because there is nothing I can do about it. It kinda blows. Megan
Thank you for writing this article and sharing your story and struggle with all of your readers. I have yet to feel the anxiety of the “Transplant” word and hope I have many many years before I go through that – I have a feeling it will be a harder form of anxiety to quell because as you stated, “it is looking mortality in the face.”
My anxiety really hit its peak when I moved out and was on my own for the first time. Up until then, my parents took care of me and helped to watch out for the first signs of illness or to make sure I was complying with all my treatments (which I actually didn’t do when I lived at home but focused on once I left the nest). It has taken a good solid two years to realize what you wrote about – anxiety does nothing to help a situation and in fact, there is currently a clinical trial being done to see if anxiety/depression in CF patients lowers their overall health – interesting to consider.
I have found two coping mechanisms for my anxiety: prayer and writing. Having a strong central faith has been important to me in my life and recently I have found it is even more important than I previously thought. Then, I write about my fears and I write about the day and I write about whatever compels me at the time and somehow it makes everything better. There is such a power in words as you have proven with your blog and your dedicated readers.
So, thank you once again for writing about this topic – I think it’s critical for all of us (not just CFers) to realize that anxiety is useless and needs to be made powerless in our lives in order to fully live. Here’s to prayer that new and better antibiotics will continue through the drug pipeline so that each of us can hold off facing the “T” word for just a little longer.
Thanks for prompting this article. I’m always welcome to address topics that are on the mind of the community because that’s what people want to read, rather than the all-too-common deathbed blogs out there.
As long as you keep with your treatments, the “T” word should be a ways off, but I completely understand the pressures of the full-time job and how work just gets in the way. For me, it was necessary to start my business from home. I’ll write about my new routine next in hopes that even those still slugging it in the office can use some of my ideas.