CFS: A Poem

Chronic Fatigue Syndrome
A whole new night of still no sleep

Nothing works, not even counting sheep.

I’m somewhere between asleep and awake

Another night of this pain I cannot take.

When I do drift off I’m plagued by dreams

Violent and bloody I wake up in screams.

It’s tossing and turning all night long

Thinking of all the things that I’ve done wrong.

Ideas for writing projects visit me far too late

I get up out of bed so I don’t disturb my mate.

Questioning myself whether I locked the door

Thinking of tomorrow’s shopping trip to the store

Worrying about money, food and bills

Wishing I could afford those sleeping pills.

Knowing I’ll suffer from this sleep lost

Going thru days in pain is often the cost. 

Sometimes when I pray I ask why I’m such  a mess

The answer I get is my dear, you have CFS.

Live Humbly,  Be Charitable,  Live Graciously, 

Sam
Image

http://www.insomnia.net/images/chronic-insomnia.jpg

Recovery:  The Sand in My Underwear

Chronic Fatigue CFSAfter writing close to 5000 words between six posts, creating a new blog site for the Higher Living Wellness Centre, my friend’s shop in Nova Scotia, and dealing with a bum eye and blurry vision, I needed a rest.  I crashed Friday afternoon and slept off and on most of the weekend.  The fatigue was blinding and I was in a lot of pain.  No matter how successful I want to be and how hard I can work periodically, I still need recovery time.  

This weekend was about self care and recharging my batteries.   Hot showers/baths, Netflix with my love and walks with my dog.  Quiet time is an essential part of my recharging process.  During quiet time, I don’t check my messages, I leave my phone charging in the kitchen on silent, I don’t check my blog or Twitter.   The logic behind this social avoidance is that I may see something that triggers a blog post and I’m trying to rest.  I also have excessive social anxiety so disconnecting for a while allows me to take a breather; to disconnect from people’s energies. 

When I’m blogging, I get obsessive about it and I will often edit a post several times before posting it, then I’ll go back and update it a few more times changing words and correcting punctuation and grammar flaws.   After posting a blog it’s constant “stat” checking; checking notifications, responding to comments and reading other blog posts.  What begins with a 700 word post (after editing of course) becomes a 4 hour commitment that I have a hard time walking away from.  Nothing exhilarates me more than writing something I’m proud of that other people respond to.  It’s kind of addictive.  

ME/CFSLiving with chronic pain and CFS (Chronic Fatigue Syndrome) makes it difficult to give your all 100% of the time.   If I give my all to something one day, I can expect recovery time from it.  It’s like a 3:1 ratio.  For every day I spend busy and working, I’ll need 3 days to recover.  It’s a pain in the ass, the proverbial sand in my underwear.  

Calculating your recovery time becomes part of your inner daily dialogue when you have chronic pain and CFS.   A friend asks you to go for coffee and a walk: that equals 10 minutes of walking downhill, 15 uphill on the way back, walking around the city- another 20-30 minutes for a total of almost an hour walking.  It’s also damp outside which means you’ll need a hot shower when you get back to warm up to reduce the inflammation you feel in your spine and joints.  When you are able to fall asleep, because your legs and back are going to ache all night, you can expect to wake the next morning feeling like you’re walking through waist deep water.   That half hour or so you spent with your friend became an entire day of recovery time.   All this plays through your head while your friend is simply asking you, “Hey, you wanna go grab a coffee?” 

CFS is not just being tired.  It’s being pulverized by fatigue.  It pierces your bones, it wrinkles your soul.   You can’t think straight, you can’t form proper sentences, you wobble when you walk feeling like at any moment, you will drop to your knees and sleep for days.  After almost a decade of CFS, it never gets easier or less depressing.  When you know you could be so much more if only you didn’t feel so worn out, so exhausted and depleted all the time; if you didn’t have all the pain.

I still have laundry to do and I can barely move let alone hobble down to the rape basement with a hamper full of clothes.   I’ve been using Kratom for fatigue and it helps but I have to be careful because it has a tendency to make me over do it which means even more recovery time.

CFS

What’s your favorite way to recharge your batteries? 

Live Humbly, Be Charitable, Live Graciously,

Sam


Images 

Woman with CFS http://images.emedicinehealth.com/images/slideshow/chronic-fatigue-syndrome-s1-woman-suffers-from-cfs-in-bed.jpg

“Fatigue is different …” https://i.pinimg.com/736x/e9/07/f5/e907f5a0dde5f840d733eadcbfc7d2b6–chronic-illness-chronic-pain.jpg

ME/CFS cycle http://www.drugfreedoctor.com/wp-content/uploads/2014/04/WhatIsMECFS_Venn1.jpg