Thursday, 6 November 2014

The Spoon Theory - a great insight to life with a chronic illness

The Spoon Theory
by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand. If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn't have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don't just get up. You have to crack open your eyes, and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don't, you can't take your medicine, and if you don't take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn't want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn't even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn't even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can't forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don't have room for wasted time, or wasted "spoons" and I chose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn't just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

Monday, 3 November 2014

Learning to be OK with small wins!

I am aiming for 80/20 in my wellness - 80% being well - 20% being Ok with when I am not well and looking after myself to get to the wellness point ~ Had my 7th personal training session today, It was tough because PAIN beyond PAIN got in the way today, my muscles all in my tummy spasamed so bad that I had to stop at 30 mins. Disappointed YES! But tomorrow is a new day ~ so pacing myself today and shaking off the NEGATIVE self talk I often posses when PAIN ruins my plans!

Friday, 24 October 2014

Can you relate! So is me RIGHT now

Natural Pain killers You might Just have In Your cupboards

Taking care of Business

In my last post or 2 ago....I promised not to neglect my BLOG...I have been so busy looking after myself and my family things kinda got a little neglected! So just to put things into perceptive it 2:18am and I am BLOGGING!!!!

So wanna know what I have been up to lately! Well first of all I decided to take charge! That's right OWN it - Pull myself out of "THIS" wirl wind of illness and feeling like BLAH and do something!

So I started with Food. I thought I had a big hang up with the stuff, So I went to AA for fat people (weightwatchers LOL) I like became a member worked out my points, looked at the horrid number on the scales, felt more depressed, sat and talked about being fat, heard all the excuses, flipped around my thinking, went home lost some weight eating points and fake chocolate bar things they sell at the meetings and then went HMMMMMMMM (light bulb moement) Why is it that everyone in my house is not fat? Why is it that we all eat the same Yet I am the only one struggling with weight? OK so yep I have had 4 children, Well that's just an excuse really because at aged 20 I had 2 children under 3 and once my baby was one - BOOM I looked awesome! So how come at 32 with my baby now being 1 I look nothing like I did at 20 weight wise, I have no energy, I look like CRAP and everything seems so doom and gloom.....What did I do at 20 that I wasn't doing now???? EXERCISE!!!!!!!!!

WW told me not to "bother" with exercise, in fact just eat our food and it will slowly come off (the weight)
I listened to this and thought NA, I know myself and I know that if I don't start seeing results of some description in like 4 weeks I am going to fail.

Don't get me wrong here, WW is probably a fab program for those who it works for, given my complexity of this illness it just wasn't working for me. I didn't feel ALIVE.

Oh and just in case your wondering why is being written at 2am Bubs woke up for feeding and I kinda stayed awake (I will go back to sleep though after this post I promise!)

So anyway back to the beginning! My aaaahaaaa moment, or what ever you like to call it! So the gym, in my time of being a mummy I have probably had about 5 gym memberships that have helped me lose money not weight, I start of great for the 4 weeks, then find EVERY excuse not to walk in the door, When I am there the workout part is GREAT! Its the starting motivated to get in the door.

So I needed a plan, one that was going to WORK and WORK me, Loads of friends offered to be my Gym buddy, take me for walks, But I already knew that wouldn't last, past behavior is the best predictor of future behavior and Sally would just end up taking that friend out for coffee and CAKE!!!!

I needed a professional.

Someone who can supervisor me, push me, keep me focused and more importantly get me feeling ALIVE again.

I needed a personal trainer!
To be honest when I use to think personal trainer; I would think buffed up, lives on protein shake, banana eating, paints themselves orange person who would probably look at me and go UMMMMM yep you have lots of hard work to do and has zero idea on how my life got to be like this.

So I did some research.....And found one with Empathy, One who got results, but also GOT what being a Human being was about, One who GOT the challenges I faced and was dedicated to customise a program
to fit my needs.

Week 1! DONE!
3 sessions of one hour personal training per week for the next 6 weeks is MY first goal.

How do I feel? ALIVE!!!! I feel ALIVE!

I hurt, I am sore BUT I am ALIVE - I have courage again, I have inner strength that I forgot I had, I have motivation, I have purpose, I have Hope, I see that I can do this!

I see a future.

I was told there was nothing more medically that could be done, I was told I would probably just get sicker and quality of life was what we are treating now - I heard I have no future.
My injuries HURT like heck, my strength in my left side is far lower than my right, my right leg burns, BUT I am going to focus on my abilities - My co ordination is off, I have problems with certain pathways not getting messages through, BUT my spirit of fighting to get WELL is BACK!!!!!!!

Its a long weekend this weekend, I have 3 walks scheduled for my 3 days, 20 minutes of basic cardio nothing too crazy, I have an awesome APP which tracks my calorie/food intake and exercise, But most of all I have a PLAN!

I have a long road ahead to get to my BIG goal of working again, there is going to be some bumps in the road, twists and turns,but in the many road trips I have taken in my life to the most beautiful places the roads have always been full of these! :)

Oh one more thing...Friday evening my husband came home from work and was like WOW! I was like what? He was LIKE, YOUR EYES SALLY they are amazingly clear and so BLUE :)
Got my SPARKLE back apparently! :)

Salz x

This is my trainer
Flex fitness is where I am undertaking my journey to wellness :) Fab gym, great staff and all around awesome!

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! 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

Tuesday, 19 August 2014

Yes the FLU just got you!

Talk about a really crap time health wise at the moment. This is seriously the first time in almost a week I have appeared to be a slightly functioning human being, I dragged my ass to the doctors yesterday and got the diagnosis of damn influenza! I even got the flu jab at the beginning of the season when recommended! Of course there are germs everywhere, I reckon because I live in the city too that its just a breeding ground for the nasty bugs. Good old country air, the beach and some good clean living is what I crave! sadly in these economic times these are just the places we visit not live!
So I can't winge too much a very close family member (grandad/father) is currently in hospital after suffering a heart attack 2 nights ago. Its such a horrid feelings finding out your nearest and dearest are unwell, Its even harder when you can't do a single thing except offer hope and support in the form of a phone call, wishful kind words. I won't go into too much detail as being such a public blog I totally respect my families privacy.
Needless to say I'm not my positive self, in fact I want to find a big hole and hide.
Won't happen though... its too cold, I don't like holes, and the kids would probably wonder what the heck their mother is up to hiding in a hole.
My Husband on the other hand would probably jump in too and say shhhhhh!!! don't let the kids find us in here its our only time we have had together by our selves in some time LOL!
Enough about my hole!

Life is hard right now, As I so very run down my doctor has advised to start weaning my 11 month old onto bottle/cup as my body is just so shattered, YIP through the mist of all of this stuff I am still breastfeeding!
INSANE101 right here
Its not the easiest task trying to convince the brown eyed baby boy that "milkyz" from a cup/bottle is nice, this mornings sleep was a tad challenging! but hes snoozing now so YAY

Online grocery shopping happened today, Its like my SAVIOR when illness kicks in - have 3 free deliveries Thank you very much #COUNTDOWN

32 years old tomorrow, am grateful for every day I get in this life, its nice to stop and collate how many you have lived for every once in a while. I may get ambitious and make myself a cake.

Time to take care of  myself again

Salz x

Wednesday, 13 August 2014

The Spoon Theory

Might just slap a 'out of order' sticker on my head and call it a day

Boom and bust. Heard that term before? CRPS flares up and then you go bust and you crash until you fall. Ha! But the absolute paradox of this illness is the boom part, you get that one day where you wake up cause you OMG got sleep and actually feel like a functioning human being, you drink coffee and it gives you a hit! Your like right! Cause the rest of my week has been shit I am going to make up for it by doing EVERYTHING I couldn't do and before you know it the ceilings are getting cleaned with a tooth brush and your like CRPS? What CRPS? I am well and super mum and then you go BUST.

Show of hands please of who can relate to this description?!?!

Year we need to like learn how to pace ourselves.

Pace ourselves.... That means we take our good nights sleep and we go wow I feel good, then change one little thing first about your day, my advise leave out the coffee. You don't need it - you have natural energy resources on board today.

Then keep your calm on, be kind to yourself. Use that feeling of wellness to eat well, go for a walk, sit in the sunshine and get some vitamin D.

You are not obliged to make up for the past week you had, let it be and enjoy the feeling of wellness.

We totally must find how to switch off this emergency response we have going on in central nervous. If you drove your car at 220km per hour every day would you're fuel costs be high and would you wreck that engine pretty darn quickly?
Logic says yes.

So if like me you can see how booming and busting is not helping your CRPS,  try finding the middle ground and balance.

Salz x

Tuesday, 12 August 2014

Not well tonight

Well I wrote this post and in my hazey state didn't post it or hit save! Annoying! Well its a new day!  Yesterday I met a great new friend who like me is a crps battler! She's no victim like me and I instantly liked that about her :) its like life gave her a big bag of free lemons she never asked for and she worked out the best recipe to make all she could from this big bag! Inspiration! She found me from the stuff story I wrote, in fact I have quite a few great people who have connected with me from this. How awesome! This project of mine is going to take some time and this journey to achieve wellness is huge - little steps. Wellness plan under construction!!! Watch this space x

Sunday, 10 August 2014

This afternoon

Sometimes we need someone simply to be there.. Not fix anything or do anything in particular, but just let us feel we are supported and cared about.

This afternoon I was that person for someone who had seen my story and recognised me in the supermarket.
I knew writing my story was like putting myself and my illness on a billboard for the world to see.
I am totally o.k with this. Because my story could be your story, and sometimes we can't always find the right words to tell our story - but someone else might be able to do that for us.

She was so overwhelmed to meet someone like her we had the most biggest hug! Thats the human spirit right there. Connecting at a time of sadness. But knowing your not alone :)

Salz x

Can you give just a little to help me get alternative treatment

I have had such an amazing response from the public with different treatment ideas - I would like to thank everyone who has given such helpful feedback I really would love to be able to seek alternative treatment - I will be keeping updates on everything via my blog

Can you help me do this? Even $1 is one step closer to me creating an alternative treatment plan.

Thank you so much again - this awareness is amazing

I am going to post a video of my tried treatments

Goal for today. Respond to the comments on the stuff website via video on my blog.

Treatments and the effects

Check back later

Oh and share my blog! Get this real life chronic pain awareness out there!

Salz x

Functional human being just add coffee

If only it were that easy. I'm wearing the same comfy pants I slept in, the world has seen my make up less face, a headband hides my none tamed hair and I actually sat done in front of another grown up and had a short meeting looking like this before coffee had even entered my body! Childcare for the bubs a couple of times a week so I can get back on track with my treatments.
I had a brief phone call with my mum while ordering coffee this morning. I dropped off the teenager at highschool and threw five bucks to him to go with his lunch, the 2 more middle kids had to endure a detour home because Mr six year old forgot his gumboots, so we found them, one at the neighbours doorstep the other over the fence in some grass. After shooing them out of the car at their separate schools like a zoo keeper the baby looks at me with his big brown eyes and wiggles his fluffy feet to the music playing :) its 9am and somehow we are all alive :) fed, warm and I think I washed 6 pills down with flat coke zero ewww. But alive that's right alive we are that! Today....well baby fluffy feet is snoozing, the dryer beeped, the dishes in the sink need washing and all I want to do is go to bed - but I won't, and I can't because today CRPS flares don't win today, they are there dragging my energy and giving me pain but I keep going , keep on keeping on and pace myself.

This isn't mind over matter, this is pain and this is real.

Today is a day of pulling all my tools and strength together just to get the basics of life achieved.

That is chronic pain.

Salz x

3.05am in the morning and my pain alarm clock has woken me up

The hardest thing about this CRPS is its lack of consistently or predictability. I like to look at stuff with the 80:20 rule. If 80% of the time life's going well then success! 20% room for marginal error I can live with, plan for the worst; hope for the best, that kinda stuff. Lately (well the past almost 6 years) 80% of the time I have been sick and 20% of the time a glint of wellness.

This is CRPS it hits you, it gets you when you are in the best mindset and your day is going great!

I have a few trigger points, sleep deprivation is a great one.
Stress feeds the pain.
Overwhelming response to simple stuff brings on a pain flare, fight or flight response.
Sugar and inflammatory response - CRPS flares love sugar. Sugar = Pain
Social situations and other peoples energy. Its the hypersensitivity reactions CRPS creates which makes you "feel" every bodies emotional stuff. Like ever walk into a room and "feel like you could cut the tension with a knife" its like that! You feel what everyone around you is going through - I gauge it.

And now my eyes are shutting on me - my goodness I'm boring myself with my writing! Lol

On that note sleep music time .

Salz x

Sleep aid

Sleep Music Delta Waves: Relaxing Music to Help y…:

Saturday, 9 August 2014

I woke up and stepped in a big pile of sunday!

I live in a student flat.
5 guys and me.
The hairy one and one that wears nappies room in with me, most mornings I wake up with the one who wears nappies eating my hair and trying to stab my eyes.
The toilet is pretty gross, I have learned that a clean toilet seat only happens when I clean it. The kitchen... Well most days I'm up early to look after these flat mates of mine. The 14 year old plays guitar and hibernation seems to be his thing lately. The 11 and 6 year old have a room sharing thing going on. Funky wooden bunks and bucket fulls of Lego rule their space. And then there's me snow white and the 5 dwarfs. I did give birth to 4 of them and married the other one! But in all seriousness what a day! Sickness ruled my day, brain fog, pain everywhere and one very long sleep this afternoon. So Sunday was a not good day for wellness and sleep was my only reprieve from the pain. So back to my friend of sleep I go! I listen delta wave meditation music to get good sleep every new night.

Here's the link to the you tube clip I listen to every night. Give it try!

On that note...Goodnight

Helpful Links

10 Tips for dealing with ACC

A while back I was asked to create a resource for claimants to help with the many hurdles faced when dealing with the ever changing ACC system: 

Please read and feel free to share

1. Own your rehabilitation ­ ensure that proactively you undertake all things offered to you as
this shows ACC your doing your best to meet your obligations and it actually empowers
you to your journey to recovery

2. Meet with your case manager in person ­ this allows you to build a 'working together'
rapport and can be a successful key to a successful outcome.

3. Where possible take a support person with you to any ACC appointments including
assessments ­ having another set of eyes and ears can truly make the world of
difference in both understanding areas or just simply being able to reflect with after your

4. Everything in writing ­ this method of communication is going to serve you well as it
creates a brilliant method of a 'paper trail ' along with that documenting all communication
can reduce misleading information and create a good platform to reference back to if
needed. Ever had a phone conversation and followed up at a later time with receiver and
had them not have any recollection of what was agreed upon? ­ ensure that email and
written correspondence is your only form of communication with ACC, ensure you have
noted down in your IRP (individual rehabilitation place) this is your only contact method.
Sign a ACC email form and ensure to update your information if this changes to ensure
smooth communication.

5. Your IRP (individual rehabilitation plan) is the most important document/plan you will be
signing with ACC­ self management and owning your rehabilitation is key in this area.
NEVER just sign it and return it without you're medical teams input. Your GP is your
gatekeeper to a successful rehabilitation. Ensure they outline clearly what is to be put
forward in your recovery. Any specialists, occupational therapists, physiotherapists,
psychologists need to outline in this plan what is required with a measurable time frame.
ACC need to outline any assessments in this plan with the reason for this and have your
medical team comment. Remember this is your rehabilitation ­ ensure you own it.

6. Meeting overviews ­ take notes in any ACC appointments or assessments, then follow up
with the key points summarizing what topics were covered and in writing (email) ask your
case manger or assessor to comment and invite them to confirm these points covered. It
creates many areas which includes a reference of the meeting and an opportunity for
both parties to reflect and make changes if needed.

7. Your ACC file ­ that's right its YOURS. Under the official information act you have the right
to a copy of this file which holds every entry ACC make on your claim in their system.
ACC have 20 working days to provide you with a copy of this after you request this in
writing. Review this file periodically as it gives you insight to your claim management
processes along with a window to ensure the information ACC hold is correct.

8. Remember ACC is a government department which is bound by legislation ­ do your best
to view ACC processes and decisions OBJECTIVELY .If there is something you feel is
not correct or your having a problem be ok with obtaining your case managers team
leader, email them in the first instance to outline your concerns, invite to meet with them
both at the branch ( bring a support person, take notes etc) follow up with your concerns.
If you need further assistance go through ACC complaints department. They are an
independent body who look at the concerns and notify the branch manager which gives you a higher level point of view. Independent advocates can also work great when areas
become escalated.

9. Work with your place of work to have a return to employment plan during your
rehabilitation. ACC is a costly business and injured employees cost ACC money ­ ACC
fundamental goal is return you to work as soon as practicable. Ensure that your medical
team collaborate well with the correct outlook to achieve this goal. Ensure that your given
the right support in the safest return to work manner. Always ensure that you express the
goal of return to employment to ACC as unfortunately to often claimants are stigmatized
to "choosing" to be on ACC especially chronic pain claimants.

10. Keep your STRESS levels at a low when dealing with ACC. Its a challenge to be in a
system you had no choice in needing to be, but remember NZ is a unique country who
has this "no fault" accident compensation system so while you're having to utilize it
always try to look at things without "emotional" based views and just look at the practical
sense this system is set up for. PAIN is real ­ unless the person holds a medical degree
don't discuss the outcomes etc with administrators of claims, ask for (in writing) the
branch medical adviser to make comment or the specialist not your ACC case manager.

Where to from here

This morning my husband and I had some honest conversations about what to do with this platform that has been created.

My story.
This unfortunately might be just like your story.
In 2014 in New Zealand Complex Regional Pain Syndrome is still so unexplained, unexplored, anonymous, un-heard of?
Why don't  more GP's know about this?
Where is our Foundation?
I hear great things about so many charities, foundations, societies, ribbon days etc - But where is ours?

Who is there when NO one else gets it?
How many people have to go through whirl winds of unknown systems, resources not being made available easily?

So where to from here........

Watch This Space :)

Therapy with words

Finding someone just like you

No one ever wants to be the smelly kid at school, or be the last kid picked for a game, Complex regional pain syndrome can make you feel just like that!

It can make you feel alone in a room full of people, it makes you feel horrible most of the time, people eventually quit asking you to things or places cause you have that 'thing' with your hand and um oh well  not that many people turned up anyway....

I got kicked out of 'support groups' online ones. I'm too honest apparently.
Apparently my tone offended some people and they didn't like how I said stuff. I asked questions like what kind of treatment plans had people tried only to at times get competition of who is the sickest and who hurts the most!

So even in the sick club, I was the smelly kid, I was last to be picked and no one liked my positive quotes to brighten the day.

On Tuesday I am meeting up with a fellow survivor of this dreaded syndrome - like me she injured her hand and she inspires me already with her get on with it attitude!

Friday, 8 August 2014

Life isn't like a box of chocolates. It's more like a jar of jalapenos. What you do today, might burn your ass tomorrow

Bruising on my tummy
Feet on fire

Complex regional pain syndrome is ugly - Honestly its not pretty, I have pictures of my hand really ugly but because I have such a disconnection with the original injury I can't ever remember where I have saved the surgery pictures. I was in a splint for nearly 3 years. I threw it away one day and got really angry I made my hand start "behaving".
Because my syndrome is centralised I have random parts of my body do random things.
I can't wear socks, Jandals are it!

Crazy  Sexy Swelling

Full blown flare eyes burning

Looking Back To Move Forward

This journey started because I injured myself, like all good stories you need to go back to where it all started. I have never been on an interesting road trip that was straight roads, straight roads are the ones you find yourself thinking are we there yet? How much longer?
Its the twists and the turns, the teeth gripping gorges and beautiful views which take you to the most amazing places. Have I been to some amazing places! And some pretty dark long tunnels too, some of which I thought I might not see that flicker of light at the end.

Waikato hospital, became a very familiar place to have coffee. In the mist of all its renovations of 2008, the don't walk here, follow this "new" corridor that probably won't be here next week notion of appointments my mind use to think wow at least I don't have a terminal illness, and OMG I must be almost better to get back to work soon!

So I had started a new job, a new contract in fact on pretty good dollars for a 26 year old. (Hey I put in the hard yards to get here!) another story...So ready to go back to work, I tried - eight stitches in my left hand, heavy bandage from surgery I attended a meeting, wrote notes with my right hand and "pretended" that the wide eyed stares and whispers of "is she ok" and ummm should she be here!; didn't matter.
Because they didn't at the time! I had a job to do and I was going to do it!

but I couldn't.. and I got the dreaded phone call from my new manager, "Hey look we think your great but ummm talking with HR, ACC and your latest medical certificate, your really not well enough to be here like this" Since I was like a contractor their wasn't much I could do about this.bye bye job.

Work ceased, I paid a lawyer $600 to look into my contract to see if there had been any breaches, we found a few - threw my hands up in the air and was like well I probably need to go away and get better. not an easy system to deal with, be around, talk too, communicate with or even be in.
We will learn more about that in time.

welcome to my new reality...I was unemployed, in pain, and didn't even know what to wear!
My reality before was up at 5am, and hour getting myself sorted, housework, lunches, 3 kids to school and daycare, leave Hamilton by 8am to be at whatever 9am meeting, coffee ooooooh how I loved my coffee!
Purpose! I had a project to do, places to be and people to see.
Identity! I identified with this person, I fitted in to society, I wore nice clothes, I cared about my appearance and I did it while being the girl who was once a high school drop out, who had the baby at 17 but proved to the world I can do it!

But what happens when you can't do it...what happens when your brains signals your hand to move to and function and it doesn't happen, what happens when you can't even change your babies nappy, pick him up to cuddle, or put him in his car seat.
What happens when the mum that worked now has appointments to attend, Doctors writing stuff down with concerned looks, the questions, the medical terms, the future, my life, it all just became a big whirl wind of MESS!

You stop... and Depression kicks in like a big black cloud that won't leave.

Feeling the Love

This blog was started because I wrote my story about living a life with a chronic illness which got published - I never expected it to get such a huge response.
People have opened up and shared some of their experiences to me via inbox of my facebook page.
I am going to share some of their stuff without their names to show the impact of baring it all can have on the human spirit.
I feel privileged.
I also feel empathy for each and everyone of them who had the courage to share parts of their experiences:

Hey Sal, great article on stuff. Really well written. Go you.

wow!!!teary eyes and shivers reading ur story!! had no idea things could be that bad for u u pull off" Im a great healthy women and everything is great" so well:) sooo proud u wroye that to share and WHENEVR U NEED ANYTHING!!!HELP WITH ANYTHING OR ANYONE

Hey Sally, I read the article on Stuff regarding CRPS and I see you are from Hamilton. I also have CRPS, have done for almost 5 years... I'm 28 and have a 5 year old son. I struggle finding people who can relate or understand - not even my husband gets it Anyway, just wondering if you would be keen on a catch up/coffee sometime - would be really neat to get to know someone else in my situation. Gentle hugs to you, and good on you for putting your story out there. Blessings

Congratulations sally for having your life with crps published. It was just like reading about my life and how it changed so dramatically where others have done something similar and a couple of months later they are back doing their thing again as they were before they get their accident. I think you know what I mean. Once again congratulations for putting yourself out there so others can learn that this syndrome is real and not us coping out as we are so often told that we are doing. You rock

Hi to the both of you!! I also suffer from crps. It started when I fell over some gumboots, down the stairs and sprained my ankle. 18 months later, still not able to drive or work. 2-3 hours sleep every night for last 18 months. Its exhausting.

 I believe everyone who reads it will open their minds hun, it is such a beautifully honest piece of yourself to share. Xxxxx

 That is an amazing story !!! Well done

 Well done! Says a lot about the strong capable person you are. Stay that way x

Proud of you for this!!

great read sally, good on you for sharing xxooxx

 Wow that was really awesome the way you told your story :0) well done

wow very moving. Thanks for sharing

Good on you are awesome.

Hi there Sally . My name is Dion Taka I too suffer CRPS. 
I was seriously wounded in Afghanistan two years ago . 
While in the Spinal Unit in Burwood hospital , I met one Dr Rick Ackland . He offered a Procedure to me . A spinal cord stimulator implant . This now covers around 80% of my pain . I suffered all the symptoms you do . After reading your story , I felt compelled to make contact

Thursday, 7 August 2014

People want to read about my crazy life

Wow! I bared it all and WOW! People want to read about my crazy life --- So why not start documenting this stuff, maybe just maybe I could help someone else who is going through this journey of pain too.

I note how many people naturally want to share and help with experiences of treatment - People who don't know me and who have just read about me have taken the time to share with me some of their own helpful stuff! How cool is that! my facebook page has loads of people buzzing and sharing my crazy story!

Its humbling.
Its also sad.

Bitter sweet sadness because this isn't just a story, this is my life.
In about 2 hours time I would have picked up my kids from school, my husband will come home from work, and life will go on in our very conservative calm and quiet world - well quite LOUD really, (4 boys)
 Ok so lets look at this vibe this story has created -
I want to hear from you all HERE!

Can you guys all be like my virtual visitors? We could do like coffee and cake catch ups HERE!

I want to actually contribute to society somehow with sharing information etc, I want to create a pool of peeps who like me still have to keep on keeping on even when you really want to go back to bed BUT can't!

Thank you for reading my story :) Be part of the rest of it too!

Salz x

How I got complex regional pain syndrome

November 15, 2008 was an interesting afternoon. The boys were outside playing in the sunshine, the 10-month-old was being pushed in the swing by my husband, and I was about to change life as I knew it forever simply by preparing an avocado for fresh guacamole.
The pain didn't happen right away, neither did the bleeding, but it was deep, real deep, and the knife came out bent at the tip.
I looked down at the palm of my left hand in dismay and thought 'I'm going to need stitches'. Calmly, oh so calmly, I walked up to my husband and said: ''Ummmm, I think I need to get this checked out''.
How did I go from working full time, being a supermum, having all these goals and ambitions within my corporate career to filling out an ACC medical certificate and being told ''well, after the surgery you should regain the use of your hand and that deep, cold, burning, pain plus numbness in your fingers will in time go". WHAT THE?
I was making dip, now I'm here, doing this! People like me don't do this. I don't have time for this. I have a huge project at work, I have stuff to get sorted, I just stabbed my hand. Stitch it, send me home!
Reality bites. In fact it slapped me in the face in the form of a chronic illness; a syndrome to be precise.
After six weeks of hand therapy, follow-up checks, more doctors tapping my hand with a pen, paper clip, etc  - to see if I could feel this or get pain from that, I got a diagnosis. Complex regional pain syndrome (CRPS). I'd never heard of that in my life.
(CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands or feet), usually after an injury or trauma to that limb.
It is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signalling from the brain and spinal cord to the rest of the body. 
CRPS is characterised by prolonged or excessive pain and mild or dramatic changes in skin colour, temperature, and/or swelling in the affected area. One knife stab to my palm got me that.
I can't accept this diagnosis. What do you mean there is no cure? This is not in the plan of things. Injury/illness doesn't happen to me. Not at 26 years old. Not after I have worked so darn hard at just being employed.
But it did and I'm here, and I hate it.
Twenty-six years old, three children, a husband, a nice collection of qualifications and after working three years in a corporate job, three weeks after landing an awesome gig in a records management role paying a nice salary, this happens. Why?

I have three accepted claims with ACC - complex regional pain syndrome, central pain syndrome and major depressive disorder with adjustment disorder (even has a spectrum number).Almost six years on I don't know the answer to that question.
I am in pain 24/7. For example, my brain thinks cold air is dangerous and burning deep cold pain starts in my left hand/arm, then spreads to the left side of my face where I get what feels like a vice-crushing-my-skull head pain.
Then the burning in the eyes starts, the pain that gravitates down my chest, sides and backs of my legs then gravitates down to my feet. The pain makes my right foot want to twist in like a baby's foot does, my left arm/hand wants to curl like a chicken wing and curls when I sleep.
At times the pain is so bad I slur my words. I lose my train of thought - remembering numbers, names, places is blank these days.
I had bladder problems for a while. I broke my right leg because I lost the feeling in my feet and didn't realise. I suffer from tendonitis in the right foot and at times it swells full of fluid. 
Fabrics make my body go insane. I get muscle spasms everywhere, I can't wear my wedding rings, my skin is thinner in places, I react to IV needles, I gained 30kgs from both medication and depression. I take three times as long to heal, my hair is brittle, and at times it feels like bugs are running all over me.
Relationships with family are not the same. Friends are like, 'wooooo, what happened to Sally? She stabbed her hand almost six years ago and now she's fat'.
We had another baby because in our vast research on how to maybe cure CRPS, pregnancy was a way of shutting off this disease temporarily. Yay, a pain holiday. Not for me.
I got pre-eclampsia, gestational diabetes and almost died from bleeding too much and my heart trying to stop.
However, we got the most beautiful little gift and a great distraction he is from this world of pain. He is 11 months old and a delight.
How do I manage this illness? With a sense of reality I guess. Live each day as it comes. Live for the now.
Future? What future? My future is no more promised to me than yours so embrace every second! 
I get depressed heaps, I get sad, and I grieve for me. But I also love, care and embrace all the people around me.
If life was over tomorrow, I would be proud of my life. I succeeded. 
I loved, I lost, I got drunk, did some stupid stuff, I had four beautiful boys, I got married, I got educated, I bought a house. I have been skinny, I have been fat, I have danced in the rain, I have driven too fast in life, and now I have slowed right down.
I am alive; a privilege denied to many - and I still like avocados.