Sunday, 21 April 2013

What a beautiful sunny Sunday...

It's a beautiful day in sunny Kent... what a welcome change from the recent cold weather, I hope everyone is enjoying it. 
I had a rotten night last night & ended up surfing the net at 4 am. It was while looking at people I follow on twitter that I found some other like minded people, one of them was Dee. 
After reading Dee's blog  ( ), I thought I'd see if I could alter the tone of my blog... I realised that all of my posts had concentrated on the crafting side of my life, while the real reason for them, Fibromyalgia' had been left in the shadows, with only an occassional mention. 
I thought that if I could incorporate the two, without force feeding any crafters a dose of 'fibro misery', then  I could eventually accomplish what I had originally set out to do ~ to achieve world domination through crafting & raise awareness about Fibromyalgia. You have to have a sense of humour about these things LOL

So... a quick update on me & then a quickie on my day, just to give you a taste... I promise this will be a short post LOL
I have the following conditions ~  

Sleep Paralysis ~ I get the full version )

Along side these conditions are other symptoms ... such as insomnia, IBS etc. The links will give you some understanding of the conditions; non of them are life threatening but all are life changing.

I live with my partner & 5 cats, our family's have all grown up & we're both grandparents. I've been with m'Stevie for nearly 12 years but it is only in the last 6 months that he has had a real taste of what it means to live with a 'Spoonie or Fibromite' (definition at the end of this post). Bless him, he has now become my unofficial carer & can now turn his hand to most things. 
We've worked out a system, if he needs help with something he brings it to me & I do it (if I'm able), if not then we just leave it for another day... for instance ~ yesterday he needed help with chopping the veg to make a stew. He did the potatoes & the meat & I did the mushrooms, onions etc... sitting on my bed (which is downstairs) & balancing a tray on my lap.

Today he did, what I call, his 'first real washing day'. He's been doing the laundry since January, but today the sun was shining. He stripped his bed, I stripped mine (I did it sitting on one end & then swapped ends) & he managed to get 3 loads of washing done, out on the washing line,  dried & brought back in... where I folded it, sitting on my bed. 
The reason I'm sleeping downstairs is that I had a hip operation in January, so stairs are more of a problem than they had been before... we soon realised that our bed & settee's were also a problem, because they're all so low ~ If I could get down on to them I couldn't get back up. Occupational Therapy raised my downstairs bed up by 3" ~ problem solved :)

I have various other aids around the house & I alternate between sticks & crutches for daily mobility... depending on how I am on any given day.

Today I'm having an average day... which is good, especially considering I had an awful night. I think I had 4 or 5 sleep~paralysis episodes last night, which was very distressing (please read the link up above if you do not know what this is) 
I eventually managed to wake up enough to sit up & stay awake for 2 hours & managed to break the cycle... a bit like you do after a nightmare, when you worry about going back to sleep in case it comes back, so you wake up, get up, have a hot drink & eventually go back to sleep OK.

So today has been quite good. I've sorted out all of my tiny diamant√© gems into individual colours & stored them in my old pill boxes... something I've been putting of for a few weeks. 

I've been for a couple of trips next door to my friend, for coffee & a chat & shortly I shall be going up to our local field (a very short walk) with her & her dogs... it's the furthest I've been since before Christmas 2012, so I count it as a large achievement every time I manage to do it... like today !  

Well,  you've now had a small peek into my day ~ I hope it wasn't to traumatic & that you'll come & visit me again... the next things on my list are ~
Number 1 make a doctors appointment about the increasing sleep paralysis episodes.
Number 2 finish of one of my masquerade masks & get it in to either my Etsy or Folksy shop
... I'm definitely looking forward to sharing the second one with you !

The images, in between the text on this post, are all taken from Spoonie & Fibromyalgia tattoo's ~ I have started to design my own, incorporating some or all of these symbols. Actually having it inked, on myself, is on my bucket list ! 
The purple butterfly, the purple ribbon & the spoon are the symbols of Fibromyalgia ~ purple is connected to Fibromyalgia as pink is to Breast Cancer... ooh yes, and Fibromyalgia day is May 12th 2013. 

The Definition of a Spoonie.

A person living with chronic illness that identifies with Christine Miserandino's spoon theory.
Say for instance, that each and every day every action you do equals 1 spoon.
Cleaning your teeth = 1 spoon
Having a bath = 1 spoon
Going up stairs = 1 spoon.
If you are healthy you have unlimited spoons to get you through your day, you can do all your daily activities.
If you are a spoonie you only have a limited supply of spoons ~ having breakfast AND getting dressed might mean you don't have enough spoons to have that bath or to make lunch... you've run out of energy or your pain levels have gone through the roof & you can't function.
A spoonie's day is always about pacing themselves & making choices.

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