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Nomading with Chronic Illness
At the very least, a different view

A Little Background

 

Imagine getting very sick, chronically-ill, in the prime of your life. All we have been doing since Princess was diagnosed a few years ago is staying at home. She's been pretty much bed-ridden and I've been a full-time caregiver (blessed to work remotely). We've finished Netflix and a bunch of other streaming services. And yeah she's sick, but God we are bored! And as you might imagine, our relationship was beginning to suffer. Somehow we believed that being sick meant you must stay at home in bed, but the "chronic" nature of an illness means... what? You've gotta stay home for the rest of your LIFE? For what purpose? And what does THAT do to a body? What does it do to your mind, your soul, your life force? So, in defiance of all that bullshit, we figured she could be sick on the road and at least we will have a different view every once in a while. With this kind of travel (mostly West Coast for now), good health insurance, and reliable income, we will still have all the comforts of home either of us may need. So don't judge. Be happy for us! And we will keep you updated on this part of the overall Adventures. Here, we will share tips with you about how to make it work (and how not to).

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So What's Her Diagnosis, You Ask?

In case you're interested, her diagnosis is ME/cfs. That is Myalgic Encephalomyelitis, previously known as chronic fatigue syndrome. If you don't know anything about it, please learn before you call it out as "imaginary." (Check out the link to the National Institute of Health, Solve ME, and see the documentary, Unrest.) It is NOT just about being tired, overly tired, extremely fatigued. Think of the worst flu you have ever had and multiply that by ten, at least. Then add in a bunch of autonomical disorders - it is, after all, an autonomic illness - like orthostatic intolerance, cognitive impairment, sensory overload, temperature dysregulation, excruciating & unexplained pain, etc.  It's also NOT about being lazy. In fact, those affected are very often recognized by friends and family as "high-achievers." I watched a happy, healthy, energetic princess fall apart because of this disease. Just prior to the onset of her illness, she worked 50 hours a week, spent 5 days in the gym, and was coming home with medals every weekend after completing another obstacle course run (Tough Mudder, etc.). The year she first felt it coming on she didn't say anything to me or our daughter. She pushed herself harder, as if it really was just "all in her head." And that just made it worse. We soon noticed she wasn't herself anymore, something was wrong. And here we are.

 

Fortunately, we were able to find a doctor who heard our concerns and didn't blow us off, a doctor who admitted she knew nothing about this disease and was willing to learn, and that has made all the difference for us. Good doctors understand what it means to be a scientist - it's not about having the answers, it's about finding them. For that, you have to know the right questions to ask, stay current on the research, share ideas with each other, and listen to your patients.

It has taken a few years to learn the intricacies of this illness and how it manifests. There will be days when she feels good enough and can go out and have some fun, but she pays for it with another week in bed (that's called PEM, post-exertional malaise). She and I have determined that any day of joy that we can get is worth the price her body must pay. Sidenote: The medicinal use of cannabis has worked wonders!

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