When I Asked Myself If I Was Living Life to the Fullest With Illness

“You only die once, but you get to live every day.” OK, random Pinterest quote, you definitely have my attention. And now I’m asking myself, “Am I really living? Or just existing? Do I practice what I preach and truly live my life to the fullest on my good days?”

Having a rare disease like primary immune deficiency definitely comes with its challenges. I spend so much time being sick, recovering from being sick and then waiting to get sick again. I know in my heart there needs to be a balance between actually living my life and “babysitting” my life-changing illness.

Easy to say. So incredibly difficult to do.

How do we do this thing called living when we are chronically ill? Because…spoiler alert: everyone dies. When I finally do take a “dirt nap,” it would be satisfying to look back on my rollercoaster of a life and think, Wow! You totally nailed it. You still tried to lead a full life despite your illness, and regardless of anyone’s judgment or opinion on how they believe you should handle your illness.

So while you are all still with us, consider getting rid of what isn’t yours to carry anymore. Define things that need to change. Decide what you want to do with your time here. How can you make things better? Realistically, of course. Let’s try and organize the chaos, lighten the load and enjoy the rest of our time here and now with no regrets.

Speaking of lightening that load…

I know it’s hard, but let’s get to the really difficult things first. Think about some of the things that really bother you. Anything left unsaid? I know it’s uncomfortable, but make the effort to make amends. Communicate and settle things with whomever you need to. Have that conversation. Sometimes peace in your heart is better. Then let it go. It will define how you want to be remembered, then you can concentrate on moving forward. When it comes to people or experiences that are bringing you down, here’s my advice: Let the “trash” take itself out. Enough said.

If you haven’t already, review and update your living will and advanced directives. Make your wishes known to loved ones before there isn’t time to communicate them. Illness and changes in life happen unexpectedly sometimes. Respect yourself and wishes so your family can advocate for you. Because we all think we have time… until we don’t anymore.

Start planning for your future…

It is the bravest thing you can do. But it can be scary too. What if I fail? Well, then you learn, so you succeed regardless. About five years ago I started a bucket list. Morbid to some people, but it helps me focus on what I’d like to do on my “good” days. I absolutely love looking back on my pictures and thinking of the amazing memories of doing things with people I love. I get to relive the adventure when I’m sick, and it helps me get through until decent health arrives again. Plus, it is totally satisfying to cross things off my list, like ax-throwing, goat yoga (so fun!) and writing. Reminders you have a life despite primary immunodeficiency are amazing. I’m not wasting any time. Take some time to reflect on what you would like to accomplish. Then get to finding creative ways to meet your goals. We all have limits with chronic illness, but realistically what seems possible under your circumstances?

Change and improve upon what you actually can control...

Well, what do you want to get away with in this life time? Are there signs, symptoms and side effects that are becoming unmanageable and preventing you from actually living the best life you can? Medicine always comes with side effects and some are just plain unpleasant. But it is a trade. You get to live. If they are making life so difficult you can’t look ahead anymore, it’s time to work with your physician to hopefully help make things a little more tolerable. Be open and accurate with your health history. Being honest about your symptoms is not complaining. Work together for solutions. Communicate. Advocate. Then fix what you can realistically, so you can improve the quality of your life. Then, get to work on that bucket list. It’s waiting.

Be kind to yourself, then go for it…

I know, I know. It is so easy to say these things. I wish I had all the answers because I struggle with all of this. All I’m asking is that you slow down just a little bit and reevaluate. Is there a better way to live your life to the fullest? For me, I need to stop the glorification of busy things “to do” and do only what needs to be done sometimes. It’s not worth the hangover the next day from trying to keep up, overdoing it, then paying for it because I’m exhausted the next day. Or is it?  Depends on you what you are tying to accomplish. If it’s throwing axes…totally worth it to me. My full body search by TSA because I’m traveling with IGG? Yes, still worth the trip (for me). No, TSA agent (who was actually pretty nice), you still cannot open the vial of Hizentra. Ever.

So respect your limits, and then on your “good” days, see what you are capable of with good energy management and planning. Spend your time with people who unconditionally love and support you—when you’re sick and feeling well. Those who judge you need not attend. There is no time for that.

I know we have to let go of the life we expected, but it’s kind of cool building a new one. Every day we wake up, we have a second chance to change things, to fix them. To make quality of our life better. To let go. How cool is that? Because as Pinterest might say… “Maybe some of the best days of your life haven’t happened yet.”