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Saturday, 11 June 2016

Describing the Indescribable

Hi,

I have woken up feeling very M.E'y. While I am feeling IT I am going to try my best to describe what IT feels like. In today's case, IT is extreme fatigue and disequilibrium. The combination is definitely a bit of a mind blower in terms of adjectives! My entire body seems to have turned into my android phone's energy saving mode. It's as if within 1 minute of waking my body knew that I had minimal energy reserves today and so, without my permission, has enforced energy saving to make sure I get through the day!

My body feels like vapour, as if I do not have any stuffing inside my skin. Almost as if, if it wasn't for gravity, I would float away. Contradictory to that, I also feel incredibly heavy at exactly the same time. My limbs feel incredibly heavy and immovable, my eyelids can barely stay open and blinking
feels like I have to close and open an iron gate. The blood in my veins feels very sluggish and cumbersome . My muscles from my eyes down to the tip of my toes do not feel like they are working properly. Speech feels laboured and slow as my jaw/mouth muscles use energy sparingly.

My movements seem a bit surreal, hand/eye co-ordination isn't really working today and it seems almost like I would imagine co-ordination to be like after taking LSD - less fun though! Arms and legs don't seem to be fully connected and working properly. Floppy is definitely the M.E word of the day!

My body and brain feel overwhelmingly tired and I know that by lunchtime I will reach my limit and crawl into bed. In my twenties, I was a bit of a party animal and used to feel this overwhelming need to go to bed at the end of a very good, enjoyable, night out. I used to be like a homing pigeon. I used to just go home on my own (didn't bother telling anyone I was leaving - naughty- don't do that!), get into bed fully clothed because my body had had too much fun and wasn't working properly and be out like a light. It became a running joke with my family. When I lived in Plymouth and family came to visit we would go on family nights out and I would be fine until we reached my front door and then I would disappear. My parents once had to sleep on the uncomfortable 'put you up bed' because I had crashed on my bed, the one I had spruced up especially for them to sleep in during their visit.  Oops! See? Homing pigeon...cooooo! So, anyone who gets a little bit too tipsy and crashes in bed fully clothed because their body doesn't have any oomph to get undressed knows exactly how I feel RIGHT NOW...unfortunately, there is no alcohol involved today.

Extreme fatigue gives a sense of 'I can't cope'. I can't do any more and I need to just STOP. When you have M.E there is no decision to be made about when to stop. Your body tells you and enforces stopping by making you feel so rubbish that you have no choice.

Love,

Sally xx

1 comment:

  1. Wow Sally, this is the worst I've seen you since we met! I'm worried about you sweetie. Thank goodness you have your folks there to help you. Know that I think about you regularly and I am praying for you. Sending lots of hugs to you and Patch 💙

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