Hepatitis C - Fatigue

It is very difficult to have an invisible illness. I often wish there were something, anything - a rash, a rattling cough – that would signal to those around me that I am, indeed, sick. Instead, the most dominant symptom of this illness is the dense fatigue that floods me randomly, unexpectedly, and regularly. Fatigue is not heart wrenching, or dramatic. More often than not, I probably appear to be lazy. Nothing could be further from the truth. I push beyond fatigue that would send the faint-hearted scrambling to their cozy beds. I dig deep into my reserves of will just to get through a long day, sometimes. Other days, I am capable of anything. Even those who live with me are prone to forget my challenges, and find it irritating that I have chosen tonight, when it is my turn to do the dishes, to lie on the couch.

I am not simply lying on the couch. My limbs are leaden. They are fused with the couch. Within moments of settling down, I am taken by sleep. I am exhausted.

For six years, before I was diagnosed with Hep C, I went to doctors and complained of fatigue. It never occurred to any of them to test my blood for Hepatitis. Instead, they would ask me about nutrition, or imply depression. If I mentioned it to my mother, she would say (and as I write this, I can hear it only in her voice), “You just try to do too much. You’re too driven.”

I would, for a moment, believe this, and wonder which of my activities I should drop. Then my mind would puzzle over the fact that other people worked out, many much harder than I. Other women had small children, and worked jobs, and did projects. What in my constitution precluded the busy life that we all lead in these times?

Fatigue is not sleepiness. It makes you stagger sometimes. It feels like a thick transparent curtain your body must pass through. Your eyes are heavy, your joints and muscles hurt, and you feel like time stops in the small aura surrounding your body and keeps moving in the larger world.

The way I have come to understand it, knowing now that I have Hep C, is that my body is working so hard - my internal systems busy climbing mountains and running ultra-endurance events – that the tiredness seeps out from the inside. It is not what I do in a day; it is the longer day of my inner workings that causes this level of fatigue.

I nap. I sleep so deeply that I need multiple alarms to wake in the morning. I push through the curtain when it falls, and find that my mind is dulled with the effort.

Now that I know where this comes from, it frightens me less. Since it remains invisible and inaudible to those around me, I realize that I must take full responsibility for responding to it. I am learning to respect my fatigue, to honor it, to find room in my life to accommodate it.

The first order of business was to try to find a lifestyle that would house my reality. When I was diagnosed, I was working as a writer in the schools, teaching residencies to classrooms of children, leading groups of institutionalized teens. This was challenging work that required me to perform, to be on stage, in the front of the room. At some schools I would teach a third grade class, then a group of fifth graders, and then find myself leading a storytelling workshop for kindergartners in the afternoon. I could not sustain this level of output inside the reality of my limitations.

Since then, I also learned that I am not suited for a nine-to-five job. I just don’t know when I will need to rest, and I found myself taking too much sick time, or comping out hours at night to make up for a lost afternoon. Ultimately, I realized I had to be in business for myself, and have spent the last few years creating a professional situation in which I can work when I feel strong and alert, and rest when I need to.

This process of accepting my reality was not easy for me. I don’t want to admit any limitation; I want to be dynamic and powerful. What I have come to understand is that I can still be dynamic and powerful, if I learn to conserve my energy resources before and after those moments. I might need to work a little less, but by doing so, I am able to reserve the energy to be really extraordinary at what I do. I take time out during my week to care for myself, something I never did before I understood that I was living with a physical challenge. I get a massage, or acupuncture, or go walking in the green, green woods of Oregon on a weekday afternoon. I seek renewal regularly. This is part of my work.

Even people who are not challenged by illness deserve the kind of life I am building for myself. The world we live in is not gentle with us, or kind, or nurturing. Americans find themselves working harder then their parents did, with less economic stability or reward. We push ourselves through longer and longer work weeks, try to attend to the needs of our families in the tiny time left over, and are chained electronically to larger and larger networks of people who demand our attention.

Everyone should find some way to remove themselves from this frenzied existence, just a little, to breathe and play and experience life as it happens. But for us, who are dealing with Hepatitis C, this is no longer just a desirable lifestyle option. It is a matter of life and death.

Your body needs to heal itself every day. Your body is battling to wholeness every day. A body working this hard demands rest and nutritious food and care. Emotionally, living with chronic illness is demanding. Your being needs to rest, your spirit needs joy, and your survival depends on how well you can learn to nurture yourself.

This is a long road. My body has been dealing with this virus for twenty-four years. Imagine having the flu for twenty-four years – would you be sympathetic to the exhaustion of your body after such an ordeal?

How you balance your needs with the impositions of the world will be a central theme as you learn to live with this disease. Just as someone newly challenged by having to move in a wheelchair must allow more time between appointments, as they navigate busses and doors that won’t stay open, you need to give yourself space between obligations and permit yourself to move more slowly through your life.

Again, the gift. The odd and disconcerting gift of this illness.

Slowing into your life, pacing your life to match your being, this is really the work of all human beings, and most of them never have occasion to attempt it. Shape your daily world to meet your needs, and you will find that it does.

Comments

[George D. Henderson]

Try this: some proteins are more complex than others (Gluten from wheat, Casien from milk, are more complex than proteins in meat):they require more metabolism in gut and liver, and where this is lacking large fragments enter the blood, causing allergy/intolerance. CFS is one illness aggravated by these macro-proteins. Substituting easily digested protein such as whey protein, fish, egg yolk, and spirulina (bearing in mind the iron content of spirulina) can improve protein/ amino acid metabolism. When a free amino acid mixture was substituted for complex dietary protein in Chronic Fatigue Syndrome, energy levels in 75% of patients were improved to normal levels. High dose sublingual B12 tablets, and ginkgo biloba herbal extract (best in liquid form, about 4-8 g herb equivalent per dose) are also recommended.