Winner of – Best Family Blog – from VUE Weekly 2017

Chronic Fatigue Syndrome and Fibromyalgia

babydoll2

Elizabeth Wilkie on our honeymoon.

I don’t talk about this a lot because talking about real things is still new to me. Anyway.

My wife has chronic fatigue syndrome and fibromyalgia.

What does that mean, well, according to the Mayo Clinic, chronic fatigue syndrome is, “a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest.”

And fibromyalgia, according to the same clinic, is, “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”

Basically, she needs 14 hours of sleep a day to function and constantly feels like she has a really, really bad sunburn. On her bones.

And for those who don’t really believe in these two medical conditions, the Mayo Clinic is, and I quote, “Ranked the #1 overall hospital by the U.S. News and World Report”.

The reason I say this is because, once, several years back, a young man told me that what my wife has is bullshit. That she makes it up in her head. That it doesn’t really exist. It took everything I had not to punch this guy until I broke my hands. The nights I spend listening to my wife whimper in pain while she sleeps. Watching her sleep for 16 straight hours and still feel tired. The constant agonizing pain. The hard work and dedication to her job and family that it takes to fight off all this stuff and still be able to laugh at my very mature, and confusingly high-brow, fart jokes. Anyway.

85 per cent of the time Elizabeth is Elizabeth. Insightful. Intelligent. A great mom. Smoking hot. The other 15, well, its extremely different. She could explain it better, but I’ll say it this way: She is always hurting, and sometimes, it gets the better of her. Imagine this: You are in a small room next door to a dump on a hot day with 15 screaming children, 100 disco balls, a malfunctioning laser array and someone yelling math equations at you as you test drive an improperly build helicopter while getting acupuncture by a meth addict. It makes you want to scream for control of your senses. It is sensory overload.

It is hell for her. For me? I can’t do anything. Well, I can do something. I can make it worse. I can forget that she has all these things and then when she is in a flare up, take something personal. Or, because she is so very good at pretending she isn’t constantly sleep deprived and in pain, I have a bad day. I have a day where something minuscule doesn’t go my way. Or I’m moody. Like I’m the fucking person who can’t get enough sleep and feels like their whole body is in a constant state of pins and needles.

There are times when she spends all her energy at work. What comes through the door after a day like this is a tired, stumbling, glorious woman who has beaten another day. She wants to cuddle with the hoser for a week. But of course she can’t do that because reality is indifferent to her needs.

Most days we get through these episodes. Sometimes we do not.

What she says for me to do when she has a meltdown is to tell her I love her, get her some tea, and put her in a hot shower. Hugs are like morphine, she tells me. I forget this. So often I forget this. And for these mental lapses, I punish myself.

I’ve spent my fair share of nights crying. Trying to figure out what I did. The joke is, I didn’t do anything. Her conditions have done it all. At times like this, I feel so very helpless. But, I have to stop thinking about myself. I have to think of her and the little man.

My hero’s test is figuring out how to communicate to the little hoser what is actually going on. So far, Elizabeth is a beacon of pure light. She is lil’ Elvis’ god. I want to keep it that way. It will be kept that way.

My wife is my hero. She lives through more in a day than I could possibly handle. Her Sisyphean existence is a marvel to me. I would have tapped out a long time ago. Well, I’m not sure if I’d tap  out, but I’d be way more fucking whiny. That is a fact.

Some people are rarely tested in their lives. Elizabeth Wilkie is tested everyday.

I am tested 15 per cent of the time. It is worth every per cent.

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4 Responses »

  1. Reblogged this on Fit met Fibro and commented:
    Een heel bijzonder verhaal van een man die getrouwd is met een vrouw met fibromyalgie en CVS. Fibromyalgie heeft natuurlijk niet alleen invloed op jouw eigen leven, maar ook op dat van de personen in jouw omgeving. Zeker op het leven van jouw partner. Deze man verwoord heel mooi hoe zijn leven met een partner met deze aandoening eruit ziet.

    Like

  2. Bravo! Telling the truth is not easy, especially when there are so many who don’t want to hear it, much less believe it.

    My husband had chronic pain from a variety of spinal problems. He endured a dozen surgeries, including two deep brain implants. When he died, my daughter seemed to inherit his pain in the form of fibromyalgia

    I can tell you that support from family and friends is critical. We are the ones who keep believing when the wounded warrior is ready to quit. We are the ones who run interference and quietly clean up messes that develop. We are the ones who have to figure out what is helpful and what is not. We battle our helplessness every day. We are needed more than we can possibly realize.

    I think your son needs to know the truth in age-appropriate ways. Let him know that his mother and daddy are heroes in a battle they would prefer not to fight, but they will keep going because that’s what heroes do. Let him know that the bad moments are not his fault. Teach him to value courage and love and forgiveness. Don’t try to protect him from the fact that life can be very, very painful at times. He will find out sooner or later.

    Liked by 1 person

  3. Thank you so much for writing this. I’ve recently been diagnosed and I’m going to pass this on to my husband. I think he’ll really relate to what you’ve said and hopefully will help him deal with my diagnosis. For me it was a relief, for him it was like his world had ended because he thought it would change/get better. So thank you, thank you, thankyou! Xxx

    Liked by 1 person

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