Monday, 11 February 2019

I'm not "just" tired.

As you know I usually talk about my primary condition, Fibromyalgia. However, like so many other sufferers, I have multiple conditions as well as Fibro. 

CFS/ME, Migraine, Trigeminal Neuralgia, to name just 3. All of these come and knock me down regularly.

Yesterday CFS came and kicked my ass. It's always there lurking and keeping me from functioning but every now and again it TOTALLY FLOORS me.

As soon as I woke I knew I was in trouble. I always wake fatigued and in pain but this was on another level.
I could barely lift my head. I had to try and get up on an elbow to take my meds but the effort of doing this even with a straw for my water was more than I could handle. I physically collapsed back on the bed. Huffing and puffing like I'd run a mile, 
Immediately falling asleep.

I couldn't hold my phone, couldn't even prop it up and type (like I'm doing today).
My body, head to toe felt like it was encased in lead. Even breathing was an effort of will as my chest wall felt heavy.

I wobbled on unsteady legs holding onto my husband and the walls to get to the bathroom.

I was unable to eat. In order to get some nutrition I had a protein shake sipped through a straw.
Then back to sleep. Keeping my eyes lids open was an effort.
So I slept.

Our bodies use energy for EVERYTHING. When healthy we take these for granted and don't give it a second thought. 

Every cell in our body needs energy to do it's job. To breathe in and out. To swallow and digest food, to move a limb, and so on.  These things are done automatically with our brains in charge running us like a well oiled machine.

When someone has CFS/ME the energy storage and release is out of order. The brain doesn't do things with ease and without thought. Everything is an ordeal.


Thankfully, after 24 hours sleep. Of being unable to stay awake long enough to even talk to my son, let alone play with him, I am feeling marginally better.

Today I am able to stand on wobbly legs.
Walk holding onto walls to bathroom.
Today the phone is propped on my leg as I type. 

I know some sufferers of severe CFS feel like I did yesterday 24/7 and my heart truly goes out to them. 
It's so incredibly scary having your body fail you completely.

So I ask, if you know someone with CFS/ME  please do not think of it as them just being a bit tired.  This is SO much more than just needing a bit of rest. This is complete and utter system failure.

Your friends or family that are affected need your understanding and support.

Not phrases like "a nap and you'll be grand",
"You just need to get a bit of fresh air" and the old "you need to get out more and do some exercise".
Believe me I would LOVE to be able to get out for a walk with my boys, be able to do ALL the things I used to take for granted.

So please, before you speak, just, think.

Thank you for reading.


Gentle hugs to all ❤️❤️❤️

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