Current Status: Tired But Trying

Because of a hectic work schedule and medical problems, I recently took a hiatus from social media. I left a pinned "status" on Facebook.

I don’t watch the TV show where Baby Yoda is featured. However, I find his memes hilarious at times. Now and then, the meme messages are less funny and more profound. Such was the case of the one I put up at the top of my feed.

A meme sums it up

It basically sums up my life with chronic myeloid leukemia, a blood cancer involving a chromosome disorder that starts in bone marrow.

Near a picture of a fatigued Baby Yoda, the message reads: “Tired but Trying.”

Think about that. It spoke to my core especially while my blood counts continue to be not so great, not yet where they need to be after my treatment stopped working last year.

When fatigue is more than that

Daily fatigue is a way of life with blood cancer and has been for nearly nine years. Sometimes, the fatigue is debilitating and leaves me unable to function properly.

I feel like a broken record (only oldies remember what that sounds like), repeating over and over how when people like me with leukemia and other blood cancers talk about feeling tired, the word `tired,’ does not begin to express what is going on. It’s so much more than that.

So what am I tired of beyond the physical fatigue?

More than fatigue

I’m tired of the logistical and physical maneuvering that has to occur these days to accomplish appointments and other tasks. Getting from point A to point B does not happen like in the old days.

What goes simply for some others is difficult when hobbling around with the aid of a walker. It takes longer to get from my door to the car, pack up the car with the walker in it and proceed to wherever. Before any of this takes place, I must mentally prepare by tacking on all the extra time everything is going to take and figuring out how I will get things accomplished.

When I get to my destination, do not get me started on the lack of handicapped spaces and/or access to some buildings that should know better and say, follow the laws.

But I digress.

Plus, the next day, I know I’m going to feel like I have been hit by a truck from the errand. The exhaustion may even last more than one day. Again, it is not normal `tired.’

If you don't live it, you don't get it

Sometimes, I get frustrated and tired trying to make people understand what life with blood cancer entails. If you don’t live it, you don’t get it. Period.

Wow, maybe I should get T-shirts made with that message.

Whether you are sugar coating and down playing what leukemia is all about or even questioning it as a condition—just stop. Not only is it insensitive, it is tiring to deal with on the other side.

I’m not whining that I want pity and sympathy. On the contrary. I’d rather CML not be such an issue every single minute. But catty comments, unsolicited advice (“If you only ate x, you wouldn’t have cancer”) or patient shaming of any kind just adds more stress and provokes misunderstandings. And both are exhausting and unnecessary.

Now let’s talk more about trying.

Examples of how I'm trying

I have done a lot of trying over the past nine years even when it is behind the scenes and not visible to others.

Acting like life is normal

I’ve tried to hold it together physically and emotionally for a long time.

Initially, I tried to act like life was normal and hide what was going on backstage here.

Reaching out to the people who disappeared

I tried to reach out to people in my life who ran for the hills instead of sticking around following my diagnosis. Many tries later, I accepted that some people do not want to deal with people who have blood cancer.

They likely have their own hang ups and cannot understand that we are the same people we’ve always been. I’ve tried to express I just want to do normal things and have fun but sometimes it falls on deaf ears.

Next.

Keeping up with the work schedule

I’ve tried to keep up working anywhere from 40 to 60 hours a week. Thankfully, I work remotely. Still, it takes effort to maintain this schedule while at the same time dealing with the limitations and side effects CML places on my body.

Trying physical therapy

Finally, I have been trying for months (actually off and on for years) at physical therapy to regain more mobility and strength as well as balance—as the physical toll CML takes continues to negatively impact me.

For outsiders, it may not look like much. But for me,  it’s a huge time commitment and exertion of effort.

It has become a pet peeve of mine when people tell me: “try.”

I’ve been trying for nine years and I will keep at it, believe me. It is just my reality now. Listen to Baby Yoda.