Why I Made a Chronic Illness Bucket List

Fly on the Hello Kitty plane, drink Starbucks at Epcot, Disney World, eat my first lobster in Maine, attend a Harajuku fashion walk in Tokyo, see the Peabody Hotel duck march, drive a Tesla, meet Matt Iseman and tell him thank you for making rheumatoid arthritis less scary when I was diagnosed… these are just a few of the adventures on my bucket list. A friend recently told me she loved seeing pictures and hearing about my bucket list adventures and she wondered what else I had planned. This year’s adventures have included finally meeting (in person) my best journey friend and building a bear at Build-A-Bear Workshop.

When the healthy world hears “bucket list,” they often think the list is what a person wants to accomplish before they die. But to me, as a rheumatoid arthritis patient, my bucket list is what I want to see or accomplish before my illness progresses and mobility becomes more difficult. Disease management was not really an option for past RA patients, but because disease management is a viable option for me, I am trying to not miss a step (literally).

 

And because I am not well, sometimes my bucket list adventures have to change unexpectedly. For example, my mom and I had planned to travel to Chicago a couple of years back to ride the “L” because we are big fans of the movie “While You Were Sleeping.” As our planned travel day approached, it was evident my body wasn’t going to cooperate. I was in a flare and unable to walk much. Disappointed because I knew we would be unable to go, my mom decided to come to Los Angeles to see me instead. Although my mom comes to visit me often, we decided we still should use the time for a bucket list adventure, and I drank my first Jamba Juice.

I try to keep my bucket list diverse with both totally wild ideas like riding in a hot air balloon to also things that can be accomplished without huge amounts of money or physical energy.  This is important to me so when I have to change my plans like the Chicago trip, it opens the door for another adventure. I’m not sure you would consider Jamba Juice an adventure, but to me it was. Also, I should add that my bucket list isn’t about accomplishing everything on it since I have added some things that would take a miracle – like Club 33 at Disneyland. For me it is more about finding motivation to continue to move forward. It is also a part of the way I care for my mental health. It is so important that chronic illness warriors have something to which we can look forward because that helps foster hope.

At the beginning of my diagnosis, like so many I slipped into depression. I could only think about everything I wanted to do and accomplish in life that I couldn’t do at that moment. So once my medications kicked in (and I could hold my toothbrush again), I started a list of things I wanted to do, see or eat just in case at some point I found it difficult to once again hold my toothbrush. I have found mental healing in creating my bucket list too. It is allowing me to make beautiful memories on my journey!

So my encouragement to those who find themselves in my shoes is this – keep your list diverse so during those difficult periods of illness you still have options, something that will make you smile even when in pain. One of my “easy” items is ordering Chinese food for delivery, you know, the way you see it done in movies. And, my encouragement to those reading this who haven’t yet started a list is to start one now. I believe you might find it to be therapeutic too.

And finally, to those of you in the healthy world reading this, please remember that a bucket list for a chronic illness warrior isn’t about what we want to accomplish before we die. Instead, it is a blueprint for living that provides mental health, hope in treatment and happy memories.

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Thinkstock photo via elfgradost.