Tuesday, 9 September 2014

I write this blog because of this quote -

“Thousands of candles can be lighted from a single candle, and the life of the single candle will not be shortened. Happiness never decreases by being shared.”- Buddha

I switched on the light and the dishwasher turned on

I repeat I am not crazy....well maybe slightly? but how dumb would it be if every time you turned on the light the dishwasher turned on! Complex regional pain syndrome is a little bit like that, my central nervous system is now all wired up wrong. Why? How? Who? WHAT the heck does dishwashers have to do with this!
Ok...so what would happen if I got my hand amputated? well firstly I would only have one hand, 2 hands are better, my left hand is only the original source of my injury, however my central nervous system like the wiring in your house runs EVERY where.
So back to what happens to the dishwasher. Well my brain now has its central part which interprets pain in a big jumble mess. Wind breeze cold is now determined to my body as deep cold burning bone breaking pain.

Some new interesting symptoms that have been appearing lately are neck based spasms.
Now my understanding of muscle spasms is your bodies natural ability to use these spasms as pain blockers?
The right leg is also very unhappy at the moment.
Fluid build up in the ankle joint, numbness, curling, burning and muscle cramps feeling like ripping.

I'm not scared of my pain. I'm completely understanding of it actually.

I never sit there in agony and go AHHHHHHHHHH!!!!!! I'm in pain!!!!!! I'm actually BEYOND that.

There is a pain beyond pain. Its hard to describe. It shuts you down.
You go into blank mode and only one medication helps it calm down, its in a very small doseage and its side effects are sleep.
Problem is that at times I wake up screaming and sleep talking when I take it so I kinda have to pre warn the kids etc -

These episodes happen at least twice to 3 times a month. They are what really remove me from my life, and they can come on quite suddenly.

I fight this. Everyday I fight just to keep the pain at a level I can function.

Thank you for listening

Salz X

Long time no see!

Wow...what a month
In the past month we have had a very sick baby boy, which required a week of hospital, treatments NG tube down the nose, IV needles, blood tests, both ends going, WE had ROTOVIRUS :(
I can handle most things life throws at me, BUT when its your own flesh and blood sick, weak and there's nothing you can do about it except hug, hope and care ALL your coping tools are collated together and you just some how DO IT.

Baby Carter is OK now, I have hit the wall a couple of times, lack of sleep, a chronic illness and emotional stress will do that to ya! But like all things you just keep on keeping on!

I turned 32, I was greeted with a beautiful bunch of flowers from my husband, they weren't just regular flowers though, they were BEAUTIFUL FLORIST flowers, created and amazing! The smell of the Lilies were just divine! They sat on my table just giving me such joy :)

I have been trying my best to make sure I take care of myself. It started with simple nail polish, Make-up like eye liner, lip gloss etc, going for small walks each day, nourishing myself with me time. Its so hard to put this into practice with 4 children. I use to say to my friends and family - "when you see me looking my best its because I'm feeling my worst" so I guess everyday I' trying to implement a "normal" look! I also becomes a reality check and ownership I suppose, you acknowledge the illness and the "cracks" that appear and the constant look of tiredness - Having a baby/kids people expect you to still look tired so I get away with this easier.

Can you relate? Why is it that we are so concerned on showing the real US when it comes to illness? Are we protecting ourselves by hiding it with make -up and nice clothes? Or are we protecting others from our reality? Is this because theirs no set end date to this illness? So Many questions!

Sleep deprivation is my worst enemy, top that off with over doing it with caffeine and you get one HOT MESS!!!

Cam (my husband) is kinda like my gauge, he notices things I guess I don't, simple stuff - like "tonight put your feet up", code words for "your'e a tired ass mess, and you probably need to get to bed" 99% of the time this ends up with me falling asleep on the couch and a gentle tap on the shoulder with being lead to bed.

Well its been a busy morning, and still so much to be done! thank you for catching up and following me on this journey, lets not leave it so long next time!!!!

I will do my best to update my blog at least once a week

Salz x