When the Tired Gets Tired: Living With ATTR Fatigue

There is tired - and then there is ATTR tired.

I have tried to explain it so many times, and I still don’t know if there are words that fully describe it. It isn’t the kind of tired where you stayed up too late or had a busy week. It isn’t fixed by sleeping eight hours, drinking another cup of coffee, or taking a lazy Saturday.

Living with ATTR fatigue

Sometimes I say, “Even my tired is tired.”

Because that is exactly what it feels like.

Recently, I had to take my son to occupational therapy. Nothing extraordinary. Just a mom taking her son to an appointment - something I have done countless times.

I dropped him off, went back to my car, put the seat back, and slept in the parking lot.

I was that exhausted.

And I think that moment says so much about living with transthyretin (ATTR) amyloidosis.

People don't always see the symptoms

People see us doing things and assume we must be doing okay. They see that I drove my son to OT. They see me at church. They see pictures of me smiling. They see me advocating, writing, spending time with my family, or going somewhere with friends.

What they don’t always see is the cost.

They don’t see me sleeping in the parking lot because simply getting my son where he needed to be took what I had.

They don’t see the recovery days.

And that may be one of the most frustrating parts of this disease.

I am 48 years old. I have a life I still want to live.

I don’t want my life to become a constant calculation of how much energy something is going to cost me.

If I do this today, will I be able to function tomorrow?

If I go out with my family, will I need the next day to recover?

If I push myself through something important, how long am I going to pay for it afterward?

Sometimes it feels like in order to have one day of actually living my life, I have to give up another day to recover from it.

That is hard.

Because I want to say yes.

I want to be the mom who goes. The wife who participates. The friend who shows up. I want to travel. I want to laugh until my stomach hurts. I want to serve at church. I want to make memories with the people I love.

I don’t want to constantly ask my body for permission first.

But ATTR has changed the way I spend my energy.

ATTR treatment

I am thankful for the treatments we have today. I am thankful there are medications designed to slow this disease down. But something I have said many times is:

Slow does not mean stop.

Treatment doesn’t automatically give me my energy back. It doesn’t mean fatigue disappears. And it doesn’t mean I suddenly have the body of a healthy 48-year-old woman.

Sometimes I wish people understood that fatigue isn’t just an inconvenience.

It affects how we parent.

How we socialize.

How we work.

How we travel.

How we plan.

And sometimes, how much of ourselves we have left to give at the end of the day.

The emotional side of exhaustion

There is also guilt attached to it that I am still learning to let go of. When your mind wants to keep going but your body is screaming for you to stop, it is incredibly frustrating.

I don’t want to need a nap.

I don’t want to sit something out.

I don’t want to spend a beautiful day recovering because I used too much energy the day before.

But sometimes that is life with ATTR.

So if you love someone living with this disease, understand that when they say they are tired, they may be telling you something much bigger than, “I need some sleep.”

And to the doctors caring for us: please ask about fatigue. Really ask.

Ask what it is costing us.