Frustration, so common in life with FA, can hijack my morning routine

This morning I was practicing my pre-getting-out-of-bed routine. I take a pill, do breathing exercises, and meditate for about 10 minutes. I mostly follow this routine, but not always. It’s my way of trying to start the day with a clear mind, and it almost always leads to a better day.

To prepare, I grab my pill bottle, my phone (I use an app to meditate and track my breathing), and my reading glasses from my bedside table before I raise myself to a sitting position using my adjustable bed. Then I do my routine.

When I’m ready to get out of bed, I drop the pill bottle, phone, and glasses into an open drawer in my bedside table. I need to use my hands to hold on to the security pole as I transfer from my bed to my wheelchair.

This morning, I missed getting each of those things into the drawer. Instead, they went flying to the floor. The quiet, focused morning I’d been striving for evaporated in overwhelming frustration.

I have Friedreich’s ataxia (FA), and its symptoms include poor balance and coordination. FA is why I missed the drawer. It’s why I need pillows or an adjustable bed to sit up in bed, as well as a grab pole to get out of bed. It’s why I use a wheelchair.

Recommended Reading

May 16, 2024 Columns by Kendall Harvey

When breaking my routine leads to a dampened spirit

Frustration can be complicated

My frustration can be summed up in three questions: Did I break my phone? Is the cap on the pill bottle tight enough to prevent the pills from spilling all over my bedroom floor? Is this my new normal? I don’t worry about my reading glasses; they’re inexpensive, and I have multiple pairs throughout my house.

Answering questions one and two is easy and can de-escalate my frustration. I pull myself out of bed and see that my phone is OK and my pills are in the bottle. Spilled pills are a common frustration for me! I acknowledge my feelings and remind myself that the dropped items are the result of FA and this thing called gravity. Once I recognize that these things are out of my control, and that I’m not stupid for dropping my items, I can let go and start a good day. I show myself kindness.

Question three is much more complicated, though. I think I’m frustrated, but if I look deeper, I’m actually afraid that FA has taken another ability from me. This fear is justified. Because of FA, I have lost a lot in the 47 years since I became symptomatic. The most obvious loss is that I used to be able to run, but now I use a wheelchair because I can’t walk.

It’s possible that I need to adjust my morning routine because I have lost another ability. What helps me deal with that ever-present question is to remind myself of all the things I can do, including those I need help with. Sometimes I write them down by dictating to my phone, but more often, I go over them in my head. Does it stop my worries forever? No, but it does help me move forward. Listing my abilities reminds me that I’m still able to do many things, and it brings me back to what is true now, not what might be true in six months.

It is normal for people with FA or other degenerative diseases to continuously mourn the loss of their abilities. Don’t think you’re alone if that’s you. It’s me, too.

Before I go to sleep tonight, I will make sure my bedside table is as close to my bed as possible. That will likely mitigate the dropping problem. My morning routine has remained unchanged for a couple years. I know I will likely need to adjust it someday, but that day is not here yet.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.