The Silent Sickness (Part 1)

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They say to write what you know. I’m not a highly educated girl, in terms of having diplomas and degrees in my grubby little hands. So – according to most people, I don’t know much. Most of my education comes from reading on my own, and since I am a sucker for awesome stories and anything about the Bible, I’m a fine, funky mix of fact, fiction, and faith.

However, I am also a mom, wife, and chronically ill child of God. Those three things seem to make up my main identity. They are also where I struggle deepest. They are what I know.

So with the admonition to write what I know, and the prompting of the Holy Spirit to back up that human admonition, I will try harder to write deeper, more honest … even though I think it makes me look like a dork.

The main thing I sense the Lord telling me is to open up more about what it’s like to live chronically ill. I once read a blog, written by an ill girl who just wanted her friends and family to know what her struggles were like, day in, day out – not because she wanted attention or sympathy, but because she thought it may be helpful to those around her to know how to act around her.

So, if you’re a friend of mine (or if you’re just nosy), read on …

I won’t try and fit everything into one post, but will list a few things that might be helpful to know (if you want to read about the specifics of my diseases, click here):

1. Riding in a car, and especially driving a car, will overstimulate me in 10 minutes flat. By overstimulated, I mean I often feel like I’ve just ridden a roller coaster with the stomach flu at the end of a short car ride. Not every ride is like this, but it happens often. So, if we’re going somewhere together, could you drive? And could you drive smoothly? It would really help me out.

2. Just because I can’t eat “regular” or palatable food, does not mean that I have one iota of disdain for you as you sit across from me eating Texas Roadhouse rolls and mouth watering steak. After 13 years of dealing with gastroparesis, I’m over it. Please, eat. And don’t make a huge deal of the fact that I can’t join you. Life is so much more than food, so let’s talk about life. If I remember, I’ll bring my latest crocheting project, so I have something to do with my hands while you chow down. But ultimately, I would ask that you join me in accepting that I cannot partake, and just be comfy. Because if you’re comfy, I’m comfy.

3. If the temperature is lower than about 82, I’m probably cold. And by cold, I mean freezing. On bad days, I give up and curl up under an electric blanket cranked up to cooklikealobster. I don’t need you to control the temp perfectly, but if you could not blast your AC when I visit, that would be great. I normally bring a sweater with me, even in the Summer, so any temp around low 70’s is fine. If you are on the hot side, maybe you can shed a few layers, while I add a few. But please keep your shedding to a minimum. I’d hate to have to call the police on you.

4. I am in almost constant pain. I cannot currently take a brisk walk around the block without aggravating every symptom I have, and adding more, and requiring two days of rest to recuperate. My bones health is declining rapidly, so if I decline your invitation to go hiking, please do not be offended. Can we go for coffee instead? I will buy you a cafe mocha frap latte thingymajig, and I will sip on a warm cup of water. And neither of us will walk away smelling rank and dripping sweat. See? Much more civilized.

5. If I am in a room with high ceilings and/or florescent lights, I’m guaranteed to be dizzy. In fact, I am usually dizzy to some extent. My equilibrium is not so equal. And frankly, most of the time, I just want to lay my head down. If you can imagine the feeling of being spun around and around for your turn on the pinata, you’ll get the idea of what it’s like to be me. For those of you who have always felt I’m a “little off” … well, you’re right.

That’s all I will list for now. There’s lots more. But I am beginning to feel like a little old lady who can talk of nothing but her health issues. Never, ever do I want to be that way. My only purpose for writing these things out is to be obedient to what the Lord wants ~ to come out of my sick shell.

When I run across someone who is handicapped, there can be an uncomfortableness due to not knowing what that person is going through, not knowing how to help. My hope is that by coming out of my shell, I am equipping you to know how to interact with me better.

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I have often called my illness the silent sickness. I know that other than being a little pale and fairly skinny, I don’t look sick. Many people say that they don’t know I’m ill because I’m always cheerful. Please know that this kind of strength doesn’t come from me, but rather from God. And although I am ashamed to admit it, I’m not always so cheerful at home. I often come home from having coffee with you and flop on the couch with a sour disposition because I’m tuckered out from our fun. It’s hard on my family, so please pray for them.

You may ask why I don’t just stay home all the time. It’s tempting. But it’s like Laura Boggess said when she wrote about why her daughter with Lyme disease attempted walking on the beach rather than staying at home because of pain and fatigue …

“We came (to the beach) to forget. We came because we might as well be in the presence of beauty while this Lyme disease is trying to take away my girl’s strength. We came because a bed wouldn’t change anything, except to make my girl sad and focused on her illness.”

There’s so much I want to be focused on. Illness is not one of them. My bed won’t change anything. So until my strength completely leaves me, I choose to forget … and go.

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One Response to “The Silent Sickness (Part 1)”

  1. brenda,

    this is absolutely marvelous! i found this link on the (in)courage group, & i’m so glad you shared it.

    there’s SO much i can relate to here, starting right out of the gate with #1. 3 yrs ago, whenever i had to be driven to my dr’s office 5 min. away, i’d lay in the back seat still feeling the heaviness of the ride on my system the entire way. and this year, when i finally made it to the zoo with my family since my health crash (3 yrs ago), we got on one of those open shuttles like they have at disney. and roller coaster is exactly the term i used with my husband when the thing took off — going what, 3 mph? so i totally get the whole overstimulation thing. and the mega food restrictions. and the looking totally fine on the outside except for being underweight. and the being completely sapped after hanging out with people!

    i so appreciate your articulating these things & putting them into words. invaluable!

    thx for the gift of your openness.
    blessings to you on your journey out of your shell,
    tanya

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