Mum’s night off

I had made wonderful plans all in advance (this is not me as I currently never know when a bad day will hit!).

I paid hard earnt cash for a train fare and a hotel room for the night.

I had everything packed, I even remembered my toothbrush before I was ready to leave.

Boom. Every single digit sang, every limb as heavy as a sack of potatoes, my head suddenly squeezed like a boa constricta had it locked down for dinner, my heart pounding second after second before randomly stopping and then exploding through my chest. Weekend over.

Does my body hate me? Every week I pay attention to a new symptom, for example, my right hand pointing digit has been stiff for a good while now and last week it looked a little bruise. Today I could draw a circle across half of my hand’s back as I outline this tight, puffy portion of skin. Good job I can type with four fingers, I guess :-/

However. In true Mumma Bear style I decided to fight back. I couldn’t do anything about the train fare and at £22 it was a loss we could just about cover. The hotel room was a different matter and, quite frankly, I wasn’t about to lose a good night’s sleep!

Here I should mention I have issues with talking to people on the phone. I won’t accept unknown numbers, I’ve learnt that restricted numbers tends to be the GP calling me back, anything that looks like a call centre gets sent to voicemail. Making calls is hideous. I get clammy, twitchy and I can feel the bile in my stomach rising 😦 normally I would try to find an email address and go from there but I had no choice with this. We had less than 3 hours to sort something out and sort it I did!

The lovely lady up in Birmingham emailed the “Booking Gods” explaining that I wouldn’t be able to make it up north so was there any possibility of getting a bed in the closest branch to me here in South London… Success! There was a bed available and it had my name on it. 

I lost a few hours as I needed a lift from The Outlaws but I was determined to spend a few glorious hours all by myself with no “mummy, can I?” or “Mum! He hit me” followed by “she hit me first!”

I took a shower uninterrupted. I sat on the toilet without chit chat. I trumped without apology! For 15.5 hours I could just relax and stop for the first time in I don’t know how long.

Do you know what I realised? I live for the noise, the chaos, the never ending questions starting with “why?”, the mess – so much mess!- and the hugs. There are too many days were hugs aren’t possible, when I have no control of the pain and the slightest featherlike touch releases the kind of noise only bats can hear. I want to get as many hugs as I can whilsy they still want to hug. Slowly but surely, those days are numbered. 

#timeaway #fibromyalgia #disabledmum #hugs #anxiety #showernotbath #largefamily

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