Whether you are pre or post-transplant, the demand to be strong can be exhausting.  Even when that demand is not something that is coming from external sources.  We all have that little voice in our heads telling us to keep going.  Be strong.  You’ve got this!  But even when it’s meant as encouragement, keeping up appearances when you’re wiped out is work.  Frankly, it sucks.  There are ways to cope though, so stay with me.

In the Beginning, I Was Pooped

I remember feeling this way pre-transplant a lot.  Being admitted and discharged from the hospital multiple times is exhausting.  Then there are the blood draws, doctor’s appointments, and trips to the pharmacy.  Medication changes, phone calls to insurance and Medicaid, oh and let’s not forget, I was dying.  So, there was that.

I know I’m not alone when I say that getting to transplant is no easy task.  This is partly why support is so important.  But there was seldom a day that passed where someone didn’t remind me to, “Stay strong!” or spout out a quote about strength.  As if lining my walls with Successories posters would somehow get me to transplant.

Hey, I’m a fan of inspirational quotes as much as the next person.  Only, waking up every day to a battle is hard.  We know it can be done.  We know we want to do it.  But who enjoys fighting like that 24/7?  Nobody does.  But we fight because we have to.

We also try to motivate and encourage ourselves.  We have lives to live, kids to raise, and family to enjoy.  And that’s what gets us through transplant to the other side.  That and a whole heaping ton of hope.

All That Glitters Is Not (All) Gold

You make it through transplant and subsequent recovery.  Hooray!  Confetti and fanfare for everyone!  You2.0 is ready to take on the world!  You’ve conquered the pain, nausea, and mental trauma.  Life is great now, right?

To that, I will give an honest and resounding, “YES!”  We’ve talked about this before.  Life isn’t perfect (ever), and after transplant is no different.  In fact, it has its own special set of new challenges.  Medications, blood draws, appointments, fatigue, nausea, the list goes on.

There are times post-transplant where you may have trouble even getting out of bed.  Our medications wreak havoc on our system and our bodies are in a constant state of battle.  Even with the challenges though, every transplant recipient I know is grateful for their second (or third or more) chance at life.  So in that regard, life truly is glittery and gold.

The Exhaustion and Stress of Being Strong

Have you seen the commercial where someone dealing with depression walks around with a smiley-face-on-a-stick?  To everyone in the outside world, her “face” is smiling, but inside she’s most decidedly not.  That is a good analogy for how I feel sometimes.  Except my smiley face is more like Atlas.

I like to think that I’m a pretty positive person.  And that I can take on anything I put my mind to (enter Atlas).  But the fact is, since my transplant, I can’t always keep up.  But, I can be stubborn and I hate being told I can’t do something.  Just ask the doctor who told me there was no way I could accomplish all the requirements needed for transplant in my short life expectancy.

My primary love languages are quality time and acts of service.  Meals made from scratch, homemade gifts, getting up to have breakfast with Mr. Graft Diaries.  All these things are ways I show love to my people.

I want to do things for the people I love and that are an expression of how I feel for them.  I want to prepare a meal for dinner made from scratch, clean the house spotless, write a blog article, and pack several boxes for our upcoming move.  I don’t want anyone in my family to have to worry about doing anything.

The problem is, I take all this on and am exhausted.  But, I don’t want anyone to think they need to take over so I hold up my Atlas-on-a-stick.  I tell them that I have it.  I’m strong.  I hide that I’m worn out (usually unsuccessfully) and that leads to stress.

The Stress Road Is a Dead End

Everyone handles stress in different ways.  Even for those of us who think we manage it well, stress can have a huge impact on our physical health.  When it comes to transplant, stress is no joke.  For me, too much stress leads to my liver numbers going haywire and has twice led to rejection.

Since the beginning of 2021, life has thrown some curveballs my way (and Mr. Graft Diaries and I have taken a little on ourselves too):

• Discovered an issue with the soil on land we were going to build a house on and, after months of planning, backed out of the deal
• Signed a contract on a new house
• Supported my daughter through her first of two surgeries this year
• Took care of Mr. Graft Diaries as he fought COVID
• Adopted a new puppy (Hank, my Jr. Assistant)
• Supported family through two hospitalizations
• Started packing for our move

What happens with all of this stress?  Well, as history has shown me, my liver numbers have gone haywire.  That has resulted in medication changes and five trips to the hospital in two weeks for labs.  Which, only adds to the stress.

Pre-transplant you try to be strong to get to transplant and post, you stay strong to keep up (for your own or for others’ expectations).

Don’t Be Strong

It’s time to put down the world on your shoulders and take a breather.  It’s ok to not be strong.  Nobody can be expected to keep up 100% of the time.  We all get a little sick and tired of being sick and tired, and that’s alright.  Allow yourself to let go of control a bit and cut yourself some slack.  Letting our guard down and expressing our feelings and vulnerabilities helps those we love to understand what we’re going through.

When someone knows your struggles, they will cut you slack too.  When you are pre-transplant, having a moment to feel bad, to not be strong can be quite a release.  This may be the time to ask someone to sit with you and let you cry.  Or perhaps this is the perfect time to talk to someone about what you’re dealing with.  Have a little pity party if you need it because eventually, you will have to buck up and find that strength again.

Post-transplant, learn to let go.  Ask for help, limit what you take on (hi Kettle, I’m Pot), and take time for self-care.  Maybe you meditate, practice yoga, go for a walk or take a hot bath.  Allow yourself the latitude to do whatever it is you need to do to make your life a little easier.

Finally, remember you are not alone.  There are so many transplant patients worldwide.  Find a local support group or jump online to find an entire community there.  And be sure to be kind to those around you.  Just like we have to put on a happy face (or Atlas) sometimes, others do too.