The Reality of Infusion Fatigue: Why Infusion Days Are Getting Harder

I had my rituximab infusion today. Every time I get an infusion, it’s a struggle. From preparing for the treatment, finding a vein (I was poked six times until they found one), the allergic reactions (throat closes up & a cough), to the aftermath (fatigue, migraines, numbness), it’s mentally exhausting.

Time and time again, I remind myself I’m not like the others my age, and I need to deal with it. There’s nothing I can do about it; we can’t pick and choose the way our lives should turn out. But every single time, I end up forgetting I need help to survive. You become accustomed to the daily struggles you face because you can’t escape them. I don't comprehend that this is a lifelong situation until I'm in a hospital chair receiving the treatment that is essentially keeping me alive.

The mental exhaustion of maintenance therapy

Every six months, I hate the process even more; I literally dread going to the hospital. I was happy at the beginning of my diagnosis that I had found a treatment strong enough to stop me from relapsing. However, as time passes, I'm tired of this process. I’m truly fed up. I can’t do this anymore. I know it’s good for me, I’d rather go through this discomfort than another relapse, but I can’t help it. I can’t help myself thinking this way.

The physical toll: Needle phobia and allergic reactions

My pain tolerance towards being poked with a needle is gradually decreasing, which is so weird. I’ve always been tolerant of these things, but now I feel faint as soon as the needle goes into my skin. The fact that my veins are not easy to find doesn’t help my situation either. The allergic reactions are getting worse with time too; they’re becoming more frequent and severe. This means I have to stay in the hospital longer.

The loneliness of the infusion chair

I used to be okay going for my infusion alone. Driving there and coming home by myself was nothing. As time goes on, I need the support. You go into the treatment room, and you’re sharing it with other patients. You see them with their loved ones, and you’re sitting in the corner, alone and in pain. They seem fine, they have someone to distract them from the discomfort of being poked with needles countless times, or when they have an allergic reaction, they’re held by their loved ones, told jokes, or distracted by causal conversation. But not you, you can barely go on your phone, the pre-meds have made you drowsy, but you feel too awkward to fall asleep because there is someone right across you.

Facing a lifelong journey with NMOSD

Every single ride home in the last 2 years, after the infusion, has just been depressing. I can’t remember a time I have not cried on the way home, imagining if NMOSD didn’t ruin my life when I turned 19. I’m 22, I should get over it by now, right? Well, no, I’ve tried.

My neurologist has stated the best thing to do is to stay on rituximab on a long-term basis. In the initial consultation, we had decided it would be short-term. But, with further research on NMOSD relapses, he said we shouldn’t risk it.

That’s my life right now.

Do you experience infusion fatigue? Have you found any ways to make your infusion days better? Share in the comments.