For people living with a chronic condition like paroxysmal nocturnal hemoglobinuria (PNH), it’s easy to lose entire days to symptoms like fatigue or headaches. But it’s possible to find ways to feel better and keep moving forward. Getting proper treatment and adopting habits and lifestyle changes that support your health can go a long way toward a better quality of life.

Shaquilla Gordon has had PNH for about seven years. She lives in Florida with her two teenage daughters and works full-time as a financial analyst. Shaquilla shared some of the ways she’s found to keep feeling her best with PNH.

Start by Getting Out of Bed

Fatigue can make it hard to get the day started, but for Shaquilla, getting out of bed is essential. “What helps me feel my best is not letting PNH take over my day,” she shared. “I try not to stay in bed for too long.”

Once she’s up, she puts some energy into her appearance for her own self-esteem. “When I was first diagnosed, it was horrible,” she related. “I wouldn’t do my hair. I wouldn't take pride in myself. But now I do that.”

Even though Shaquilla works from home, she still prepares for the day. “I like to get up as if I’m still going to work with a nice face wash, get myself completely together,” she said. “I’m looking like someone that’s healthy with an illness that’s under control.”

Listen to Your Body and Avoid Triggers

It’s also essential to avoid circumstances that might trigger worse symptoms of PNH. Physical or emotional stress and infections are known to worsen symptoms for some people. You may have other triggers you can identify and hopefully avoid. For Shaquilla, one of her triggers is overdoing it with activities and becoming too tired.

“I have to listen to my body when I’m tired,” she explained. “Sometimes I continuously push myself to work, push myself to go out with the kids, push myself to spend time with my family. When my body is telling me, ‘You’re tired. You’re tired.’ When I don’t listen, I get sick because it kind of forces me to sit down. I have to tread lightly.”

Keep Good Habits To Improve Your Well-Being

For anyone, whether they’ve been diagnosed with PNH or not, lifestyle changes can improve overall wellness. As Shaquilla put it, “The disease isn’t going anywhere, but whatever I can do to make life easier for me, that’s what I want to do: to try to become a healthier version of myself, even with PNH.”

One of the ways Shaquilla feels her best is by staying active. “I try to exercise whenever I can,” she said. “When I got sick, I kept up with the gym membership to do the best I can to control it on my end.”

She also began paying more attention to her diet. “That meant eating healthier, adding more vegetables and fruits to my diet, and watching the amount that I may eat during a day.”

These changes have allowed Shaquilla to stay pretty active with her kids despite PNH. “I’m going to the beach, I’m walking with them, exercising more. I’m using my opportunity to stay active in a good way while still listening to my body when I need to.”

Pay Attention to Your Mental Health

Mental health is just as important as physical health. Unfortunately, people with chronic illnesses have a higher risk for depression. Shaquila has found regular therapy to be helpful for her mental wellness.

“I’ve added counseling now as an annual thing for me,” she explained. “Even when I’m having good times in my life, I still want to keep up with the therapist to let them know. I like to control the mental aspect of the disease where I’m more open and I’m more free, and I don’t feel like it’s just taking me over completely.”

Talk With Others Who Understand

On myPNHteam, the social network for people with paroxysmal nocturnal hemoglobinuria and their loved ones, hundreds of members come together to ask questions, give advice, and share their stories with others who understand life with PNH.

What helps you feel your best with PNH? Have you started any good habits that help? Share your experience in the comments below, or start a conversation by posting on your Activities page.