Living Life With Rare Diseases: Giving Up vs Not Giving Up

As I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I need to streamline my life, meaning I now need to give up on some things as I continue to not give up on maximizing my health.

Being on various treatments for both cystic fibrosis and MAC lung disease, plus continuing to educate myself to be able to be my own best advocate, takes a lot of time and energy – time and energy I am accepting I no longer have for things I used to commit to without really thinking through their costs versus benefits to my health.

A pet-sitting commitment takes its toll

For instance, I am writing tonight from a family member's home in the San Francisco Bay Area, where I am 10 days into a 2-week long pet-sitting "freebie" while they are on vacation in Hawaii.

I had to drive a few days from San Diego to get here and will need to drive home, too. All in all, I will have spent 18 days of my life away from my home, and my healthcare providers.

I needed to see an ENT while away from home

Unfortunately, I have needed to see an ENT while here due to "the purge" – a term the cystic fibrosis community uses to describe the clearing out of sinuses when beginning Trikafta, a drug I began on May 11th after receiving a late-in-life diagnosis of cystic fibrosis on May 1st.

For me, this caused a painful ear issue and I ended up needing to see 2 ENTs while here, as the first didn't treat it correctly. It was not easy to find one that would accept an out-of-area patient. And now, a heat wave has hit the area and I learned today that the AC doesn't work at all well in the living area and kitchen.

My energy levels are drained

It's all literally been draining my energy. Also, before they left for Hawaii, we learned that their large alpha female dog cannot be trusted around my sweet little 13-pound male Muppet-type emotional support dog so he has needed to stay in a bedroom by himself.

Adding to the energy drain, I needed to sleep on the couch a few nights around the 4th of July due to the nearby fireworks noises freaking out the alpha dog. These things have all been taking a toll on my energy levels and sense of well-being, making me very aware of an increasing need to reflect on costs and benefits to my health of big, and even smaller, decisions I make. 

Accepting the need to place my health first

Sigh... I truly don't mean to complain, as I have enjoyed being able to keep a commitment I made 7 months ago now, before ever even knowing I might have cystic fibrosis. And, I do love my family members and their cute doggos, plus it was fun to drive up the beautiful coast of California with own my little fella, Charlie.

But being on a powerful and sometimes unpredictable medication has highlighted that I must now consider costs to my health of future non-essential commitments I make. In this case, I have needed to accept that I can't be the go-to pet-sitter for my dear younger sis again if I am to place my general health first.

Showing myself compassion

There's a little grieving for me in accepting that life has shifted for me on this drug in both positive and negative ways, but I also feel a lot of self-compassion growing for myself, too. Having illnesses with treatments that consume time and energy or being on meds that can sometimes cause unpredictable reactions simply means that there are things I now need to give up doing as I continue to never give up on taking care of my health.

As the saying goes, "If I don't do it, no one else will." Are there things in your life as a person living with a rare disease that you might want, or now realize you may need to give up on in order to take good care of yourself?

Please feel free to comment below if you'd like to share some of those with other community members here.