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What Helps Todd, 58, With Primary Immunodeficiency

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

With our ongoing “What Helps Me” series, The Mighty is leaning into what sets us apart from other health sites: We aim to provide real health advice from real people who live it.

In this spirit, we asked our community for the best insights and tips they’ve developed for managing their conditions. As always, they responded with their unique health stories and we are happy to pass along their well-tested resources to you.

Responses have been lightly edited for length and clarity.

Today, we meet Mighty member Todd. He is 58 years old and lives with primary immunodeficiency.

Todd, what helps you?

A white man with brown hair and brown eyes wearing glasses and a black suit with a red tie smiles.

THE MIGHTY: What helps you most when your condition affects your physical health?

TODD: Because I have an immune system that does not protect me, I am always heavily medicated, and I rely on immunoglobulin replacement therapy to keep me healthy. Along with that comes an array of other health problems and other areas of my body that do not work the way they were intended to. This includes food allergies, intolerances, and sensitivities. I stay close to the same schedule every day, regardless of holidays and weekends, take my medications at the same time each day, and closely monitor the foods I eat and the beverages I drink. Consistency is key to stabilizing my physical health each day.

Body awareness helps me catch developing symptoms before they reach a crisis stage. For symptoms I can manage on my own, I keep a supply of over-the-counter medications to help me. For symptoms that require a doctor’s attention, I am quick to call my immunologist and reach out for help. The most challenging aspect of being chronically ill is the unexpected flares in my symptoms. These often require numerous trips to doctors, repeated blood tests, and other procedures to bring them under control. Here again, body awareness is key. The earlier I catch the symptoms and address them, the quicker the flare passes.

What helps you most when your condition affects your mental health?

Being chronically ill is a daily challenge — emotionally as well as physically. There is [an] ongoing monotony of living with the daily symptoms. This takes real fortitude, and chronic illness can grind even the strongest person down. Chronic illness is often relentless. It never stops. It never sleeps. With a good routine and good medical care, my daily symptoms become “background noise” most days. The most difficult days are those days when other things in my life are not going well, and I have those problems on top of my chronic illness.

Most days, maintaining an attitude of “this too shall pass” helps me. On the really hard days, I reach out to my church and pastor as well as a couple of close friends for support. Most often, I am reaching out for support when life throws me curveballs on top of a flare. Support does not solve my problems — I still have to solve my own problems. But support sure does make the load feel lighter and more manageable.

How do you cope when your normal self-care isn’t working?

When normal self-care does not work, it is usually because a flare or some other crisis is developing. These are truly trying times. It can be so easy to lose perspective and to want to give up in the face of all of my challenges. Like many others may, I long for a miracle cure or a quick fix, even though these rarely exist. Solving the problem usually takes far longer and requires far more effort than I would like. Patience and perseverance get me through these times, but finding it when I feel my worst is the most difficult thing in the world. It would be so easy to give up, so easy to want to quit, and so easy to stop trying,  but I remember all of my reasons for continuing to fight, to try, and to live. I lighten my load as much as possible and reach out for help. With encouragement from family, friends, and coworkers, I fight on. Eventually, little by little, my crisis or flare passes, and I am thankful I did not give up.

Thank you to Todd for his contributions to our community. Did you find this helpful? Add your gratitude in the comments.

If you want to tell us what helps you, you can complete our survey here.

Image via contributor.

Originally published: May 6, 2022
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