Health & ME/CFS, This Crazy Life

Pain, & a Spark of Hope

There comes a point with pain where it cannot be ignored. Where you try desperately to sleep, but you can’t lay still because the pain is overwhelming, and you absolutely must move to try to ease it. And a point where, if you do get to sleep, thanks to ambien, you wake over and over because you’re at that point, and the pain wakes you over & over. Where even the pressure of your super soft  futon against your hips hurts so bad, you feel like you are sleeping on rocks.

There is a point where your back pain becomes rib pain, too, as the tissues between & around your ribs becomes inflamned, and it hurts with every breath, like someone is giving you a giant bear hug, only they are squeezing way too hard.

There is a point where you know rain is coming within a day, because you feel  the tissues in your arthritis-ridden knee begin – and continue – to swell until you can’t even bend your leg fully.

This is the point I am at now.

And I own this. It is no one’s fault but my own. I overdid it. For weeks. Because I love my mother and would do anything for her, as she would for me. I chose to do more than I should, as little as it may have seemed to some. I chose to take care of her knowing fully what I would face in the weeks & months to come.

They call this a flare. Such a small word. It cannot encompass the level of increased pain, the sore throat, the complete and total wave of exhaustion & weakness that washes over you, drowning you with pain & aches that are bone deep, too tired to get out of bed. Because this is what it is to have Chronic Fatigue Syndrome (CFS) along with Fibromygia (FMS) along with the Lyme, the Epstein-Barr, the other viruses you’d never heard of before.

This is what it is. And I own it, and take responsibility for this. I did what had to be done, I chose to do it, and no one need feel guilty for this “flare” I’m in now.


In other news, there is a spark of hope for those of us with CFS/FMS: Scientists have discovered a retrovirus that people with this have in their system. They don’t know much about it yet. It’s similiar in some ways to HIV. There is some hope that this is the answer we’ve been waiting for, the key to unlocking the mystery of CFS & FMS. Treatment might be similiar to treatment for HIV: anti-retroviral drugs to put the virus to sleep.

Time will tell. Already, many countries have banned those with CFS from donating blood, as they are unsure exactly how it spreads.

Time will tell.

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