An increase in my physical abilities is good motivation to exercise

Note: This column describes the author’s own experiences with Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Since my diagnosis with paroxysmal nocturnal hemoglobinuria (PNH), I’ve become adept at listening to my body. I know when my symptoms are about to flare up and what I need to do to prevent that. I’ve learned how to live with the unpredictability of this disease and recognized that life goes on no matter how I’m feeling.

Earlier this year, I switched back to Soliris after about six months on Ultomiris. Both are infusions, but the latter is administered less frequently, which I hoped would give my veins a chance to heal. Unfortunately, Ultomiris wasn’t the right fit for me personally. Many days were filled with symptoms like shortness of breath and fatigue. Carrying laundry up and down the stairs was the most exercise I could do in a week, and it took everything in me to do it. I felt unfit and weak.

Plus, it was frustrating that my to-do list was getting longer, but I had no energy or strength to get even a quarter of it done. What little energy I had went to my 2-year-old daughter, with little left over for work and household chores.

Now that I’m back on Soliris, I can feel the difference in my physical abilities, and I’m no longer taking exercise for granted.

Recommended Reading

June 3, 2024 by Andrea Lobo, PhD

FDA approves Bkemv, first Soliris biosimilar, to treat PNH

I’m capable of more than I thought

I’ve worked out in the past, but never really enjoyed it. I would do it simply to maintain my health and lose weight. But now, after not being able to exert myself physically for a while, I have a new sense of gratitude toward exercise. I used to dread working out and easily caved to the temptation to skip sessions, but now I feel much more motivated. I repeat to myself, “I get to do this,” and, “I have energy and I feel strong.”

Affirmations before, during, and after workouts have become one of my favorite things. I can feel my confidence increasing by the day; I am physically capable of so much, and not even PNH can stop me.

Lifting heavy objects is becoming easier, using my core muscles to stand up after putting on my daughter’s shoes is more doable, and, most importantly, going up stairs doesn’t leave me as badly winded as before. PNH isn’t currently holding me back, but the reality is that there may be times in the future when it does.

Last week, I worked out on Tuesday and Wednesday before having my biweekly Soliris infusion on Thursday. Normally I start feeling more sluggish in the days leading up to each treatment, and it’s harder for me to push myself. So the thought of working out on two consecutive days before my infusion was intimidating, but I wanted to keep on schedule with my routine.

Before starting each of those sessions, I told myself to just try my best. It was good to work out, even if I only did half of my usual exercises. It was difficult to get through, but I gave myself grace. I also reminded myself that I may not be able to do my best workouts during treatment weeks, but I have to find a way to make it work.

Finding a pace that pushes me to become stronger without aggravating my symptoms is like walking on a tightrope. If I lean too far one way, I may regret it later on. This idea was always intimidating to me, but after learning how to function on a medication that wasn’t suitable for me, I’m now seeing I can lean further than I thought.

I’m realizing I’ve used PNH as an excuse to avoid exercising. PNH may affect how much energy I can exert, but I’m capable of more than what my mind has been telling me. After months of living with very little energy, I value this increase in my physical abilities. It feels like a second chance at life, and I don’t want to let that go.

Note: PNH 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 other 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.

Print This Article