Tuesday, 19 August 2014
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
Wednesday, 13 August 2014
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.
Tuesday, 12 August 2014
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
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.
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 .
Saturday, 9 August 2014
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!
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
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
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.
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 :)
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|
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|
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.
ACC....is 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.
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 Sally.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
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 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!
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.
If life was over tomorrow, I would be proud of my life. I succeeded.