My Body, My Prison, My Life with ME/CFS

May 08, 2017

I have always had a nightmare of being incarcerated for something I didn't do. Maybe it was the goody-goody two-shoes, teacher’s pet, predominantly rule abiding girl. The fear of being in trouble and worst yet arrested freaked me out. 

This fear intensified as I travelled the world and experienced different judicial systems.
Maybe, it was visiting the prison in Malawi where I sat in the dirt with the incarcerated women and their children. Or was it being patted down by heavily armed guards as I entered Indonesia?
Maybe, it was the time the big year 6 kids threatened to “dob” on the little year 2’s at lunchtime for something we hadn't done. Or is it the countless crime shows I stream on Netflix?

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Are my fears irrational? Probably so, I am a seemingly normal law abiding individual. (Or so I’ve always thought!)

Yet, I still have a fear of being trapped. Imprisoned. Stuck.

Last night, I dreamed of running…so free...pounding the pavement in whatever direction I dreamed. Yet as I woke, I realised I am imprisoned. No chance of running and feeling the wind in my hair once again. Incarcerated in a body for something I didn't do. Stuck. Trapped. No chance of parole. No release date in sight.

I have Myalgic Encephalomyelitis (commonly and annoyingly also called Chronic Fatigue Syndrome) and Fibromyalgia. And life with these diseases is a prison sentence.

Condemned without doing anything wrong. I was the fittest I had ever been. Eating well. Exercising daily. A busy day in the classroom. A social life. Committed to my church and living out my faith.
Yet, it struck me down. It arrested me at my prime. 30 years of age. A virus that lasted a term.
Fatigue, pain, nausea, and brain fog, that now over four years later hasn't left.

I am under house arrest. Not enough energy to leave the house. Not enough energy to have a shower. My bedroom walls have become my prison cell. I know the intricacies of the cracks and marks that cover the roof. I mark time by the sounds outside. The soccer ball being kicked against the garage across the street, pounding through my head, lets me know that school is yet to start. The light streaming in through the window that I yearn to feel on my skin.

This is solitary confinement. A disease that no one understands. A disease that is so much more than tiredness. Fobbed off by many medical professionals. So many unanswered questions. A disease that you are walking alone. 

No escape is in sight. I could run. I could try and escape this body...and occasionally I have. I have pushed through and tried to live the life I once knew. Yet, the punishment for that is worse. The torture and pain that follows is unspeakable. You are trapped in a body that makes you worse with every single thing you do. 

A body that feels tortured. The pain engulfs all your senses. I am being abused by my own body.

The meals are awful. I have no energy to cook. Relying on others, or pre-packaged meals. Or being reduced to specialised diets so bland that eating lettuce is as exciting as it gets...plain iceberg that is, nothing fancy like kale or rocket! Though, regardless of the quality, some days there is little energy to even eat.

No stimulation in this prison. A brain that is fogged. Reading a simple book becomes a challenge. Following a plot in a television show is impossible. Left lying looking at the walls.

No funding goes into this prison. Welfare payments don’t even cover the medical expenses. Forgotten by our welfare system.

I have no release date. I am in limbo. This disease has no cure. There is little research. There is a denial that a problem exists. There is no investment in these lives. No investment in my life.

The desire to escape my body and run away from it is real. The passion I still have for teaching hasn’t waned. My faith and hope is stronger than ever. Yet, my reality is this prison.

ME/CFS is a prison sentence. It is estimated that well over 100,000 Australians are facing this sentence. There is no parole. There is no release date in sight. It can leave you without hope. The research is only starting to make a dent in understanding this disease. On May 12th the ME/CFS and Fibromyalgia International Awareness Day, may you stand up, raise awareness and run for those who are imprisoned in their own bodies because for some of us we may never be released from this prison.

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5 comments

  1. Hi, I've shared a link on PainPalsblog regualr featur "Monday Magic - Inspiring Blogs for You"! Claire x

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  2. I love your imagery. So powerful. I've shared on my FB group, Medical Musings with Friends. Thank you Sam x

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  3. Please research DNRS (Dynamic Neural Retraining System), also, LDN (Low Dose Naltrexone) and feel free to PM me on Facebook: Charlotte Alyce Jane Markwick. For more info or email me: camarkwick@live.com.au

    MECFS is NOT a life sentence!!! Just please don't rely on western medicine to figure out how to fix you, it took me 15years to realize they cannot help me, I'm helping myself, have been for the past year and actually recovering from a place I didn't think I could come back from, I thought there was no chance I'd live to see my 35th or 40th birthdays, I'm 28, I was so ill I literally thought I'll be lucky if I survive another decade.

    You CAN recover and you CAN be cured, but you have got to do it yourself!!! I can give you some resources to start your searching for the right recovery and treatments for you and your body!

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  4. Please don't feel anxious about using your handicapped parking place card. You have every right to use it!!! I felt the same way at first but realized that I NEED to use it and screw anyone who gets an attitude about it! I have RSD- Reflex Sympathetic Dystrophy among other painful conditions. They aren't visible conditions but I suffer through a lot of pain. I am lucky to be up for taking a shower a few times a week let alone walking a long distance through the parking lot when I am able to get out and go to the store. So, use the handicapped parking all that you can because you deserve to use them. Nobody else matters. They don't walk your path and understand why you need it so don't worry about them! Be brave pain warrior and take care of yourself. (((((HUGS)))))

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  5. This is beautifully written. I can just feel the emotion in the descriptions. I admire your strength. -bsrealtalk

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