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Living With PNH: Overcoming Fatigue and Brain Fog

Posted on August 15, 2023

Meet Brandi Lewis | Meet Maegan Voss | Return Home

Transcript

Video Transcript:
00:00:01:01 - 00:00:16:23
Brandi
I’ve been on this journey for over 14 years now. I feel like I’ve learned a lot. Now, I’ve tackled a lot in order to help other people. I had to stay mentally strong knowing that this wasn’t the end of my life and that I had a future.

00:00:20:22 - 00:00:42:07
Brandi
A typical day for me living with PNH starts with just waking up to get ready for the morning. One main symptom is fatigue, so I just take a couple of minutes, give a little gratitude for the day. Thankful to be here, to be alive. I get out of bed, start my day. Get some coffee to wake myself up even more and get my energy going,

00:00:42:16 - 00:01:01:01
Brandi
and then I’ll start getting ready for work. I have an office, thankfully, where I’m able to close the door. That’s been really good for me as well, making me feel more calm about being in a workplace. One main thing that I deal with is the brain fog, so I always have a notepad by my desk where I’m just writing things down.

00:01:02:19 - 00:01:28:04
Brandi
I will take an hour rest break and eat lunch and really just take time just to be centered, not think about things. Stress is not good for PNH or aplastic anemia, so I take that hour just not stressing out, finding calming music just to give myself a mental rest break. I want others living with pain to know that your journey does not stop here.

00:01:28:14 - 00:01:50:21
Brandi
You have a life to live. You are going to get over this hurdle, and you’ll look back and say, “I did that.” I found out how to battle something, and I did it. I got over that hurdle, and now I’m able to use my message in order to help other people. My name is Brandi Lewis, and I’m a member of myPNHteam.


Brandi Lewis wants others to know that being diagnosed with paroxysmal nocturnal hemoglobinuria, or PNH, isn’t the end of the journey. Starting the day with gratitude and taking time to rest helps her keep moving toward her goals. Watch the video to see how she finds her pace living with PNH.

More Videos

After living for years with aplastic anemia, Brandi Lewis found out she had paroxysmal nocturnal hemoglobinuria, or PNH, too. She’s learned how to research and advocate for herself to get the care she needs.

Watch Video

Meeting others with paroxysmal nocturnal hemoglobinuria, or PNH, helped Brandi Lewis feel less alone. These connections showed her how to navigate life with PNH and discover tips on managing her symptoms.

Watch Video

Posted on August 15, 2023

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