“We cannot direct the wind but we can adjust the sails.”
-Author Unknown

Advertisements

Quote

If you only knew…

imagesCAX0E3ZQI have again decided to try and apply for a Disability Pension it is substantially more money. I tried just over 10 weeks ago (which is the cut off for appeal) and was knocked back, it seemed their “Point System” said I was not disbabled enough but the officer that reviewed me completely disagreed. When I phoned disability to ask how I would appeal the girl on the phone advised me it probably wasn’t worth it because I had just been to a Pain Management Program for 10 days in hospital and they wanted to see if I could improve my quality of life and gave me til January to do so.

So as of the 21st December I have been in a severe pain flare 40 days ago. I hate to have to say it but I really think this is the “New Normal” and the reason I say this is that Brisbane has had severe weather from an Ex Cyclone in which we lost power for just under 48 hours and my pain has flared – worse than before. It is pain that if someone told me if I stuck a knitting needle in my eye to relieve the pain then I would stick one in both.

So a few weeks ago I rang for new paperwork and got a really helpful woman on the phone, I told her that I now had a carer come in to shower me and that my left hand was more useless than before. She was rather mortified on my behalf that I was told not to appeal the last decision so she went through the form with me on the phone question by question and gave me the “exact” answer they would require. She then said if for some reason they knock you back again you need to appeal and appeal – don’t let this go.

I received my appointment time for someone to review me, and as it was so early on a Wednesday morning I had to cancel my carer to shower me and do it myself. I was not in any shape to front up at Centrelink but I guess that is the way they need to see you. 2 days of flare and over an hour and a half to shower and dress. The pain was just awful, I took a handful of pills for breakfast. The phone rings only minutes before my mum and I were going to leave. It was Centrelink saying the Assessor was sick and they would have to change the day. I just burst into tears. I told her between sobs that I was ready and in so much pain. She said “Well it’s probably a good thing for you that you can rest up today” I told her it had taken me close to 2 hours to get ready. I was sobbing like a baby. My appointment is next week but now my carer can do the showering.

I got off the phone and I just couldn’t stop sobbing – Centrelink – always Centrelink that puts me through these ridiculous appointments over and over with no idea how hard it is to get there. If you don’t go they threaten you that your money will be cut off. One time I fronted up in the same condition to find 25mins after my appointment was to start and I made it through to the top of the queue that my appoinment had been cancelled – they just didn’t let me know. Yesterday I told myself that all going well this would be the last time in 2 years that I would be there – that’s how I tried to get through my pain in the shower.

If only they cared how much effort it took to get there and hard they make it for honest people.

 

stock-vector-typewriter-32591743

Image

“Do what you can, but never forget that letting go is very different from giving up. Of all the things you can make in life, remember you make all the difference in your life”

Quote

The Spoon Theory

Spoons

I wanted to share with you a story that was shared with me in a Mind Body Class I was taking at the Royal Brisbane Hospital. As I am not to copy the story, I have added the link for you to enjoy. It really is a story that I carry with me everyday and I measure my days in spoons.

Of course that may not make sense to a lot of people reading – but the story I share with you was written by a lady called Christine Miserandino who now has an enormously popular website running now called “But you don’t look sick” For many people suffering Chronic Pain you become masters of hiding the day in and day out pain to the extent that people that don’t know you very well, would hardly be able to grasp the amount of pain you are going through while laughing and smiling during a conversation with them. My good friends and family pick up those signs and gently help me to safety – my son is amazing – sometimes I just phaze out where people start to talk in another language (or so I think) to find 10 minutes later I am wearing my TENS machine and all but ready for me to turn on. Isn’t he amazing? Other friends will notice a wince, a rub of my hand – or just not being able to find a simple word – a word that you could use everyday but at the moment you have no re-collection of what it could be. These amazing people around me gently suggest – “Do you want to go lie down?” “Can I get you something” I love you my favourite people – you know me so well πŸ™‚

So the short version of “The Spoon Theory” is that Christine (who suffers Fibromyalgia) in her younger years was at a cafe with a good friend and her friend asked “Tell me, what is the pain like?” and of course like we all do in Chronic Pain just tried to shuffle her off with a generalisation. This day her friend would not take “no” for an answer and asked her again “What is the pain really like?” Christine looks around the table and finds a glass containing teaspoons. She pulls out 12 spoons, hands them to her friend and says “Everyday I have the equivalent of 12 spoons to get me through to bedtime. For each activity I chose for my day will cost me 1 spoon. For example, to make the choice to meet you today costs spoons, so you must give me a spoon for each task I have completed to get here today”. Her friend became quite excited by the game and handed over 1 teaspoon. “No No No” Christine says “You have to give me a teaspoon for EVERY task I have completed to be here today. You owe me a spoon for just be able to get out of bed, a spoon for a showering, a spoon for putting my clothes on, a spoon for doint my hair and putting some makeup on, a spoon to have breakfast, a spoon for making my way here” Now her friend realises that she has to give away HALF of her spoons and it is only morning!!

So anyway please read the story it is amazing. My day is broken up into spoons. If I chose to spend time with my special people, it means that you are very much worth HALF of my daily spoons – that’s what you mean to me. Some days you will try and pinch spoons from the next day – which leaves you short on that day. Some days you have run out of spoons before the afternoon and there are no spoons to make dinner, wash the dishes, wathc tv…they are prices you pay for chosing your spoons in the way that you did that day.

Really inspirational stuff…..

Aside

The only courag…

The only courage that matters is the kind that gets you from one moment to the next. ~Mignon McLaughlin

Quote

β€œThe greatest healing therapy is friendship and love.” Hubert H. Humphrey

My First Day with a Personal Carer

530275_463453327044756_1173527577_n

Yesterday was my first visit with the Personal Carer. I guess it seems like Jake and I have been muddling through for many more months than I would care to admit to – on our own. With maximum support from my mum, frozen meals and groceries from my friends. It has been many months where I just seemed to feel really angry and frustrated – I was struggling with many things and wasn’t willing to admit that change was needed. A friend I spoke to in a class said to me a few months ago “When you actually let go of the fact that you do not function the way you use to and stop fighting it – life becomes easier when you have accepted the change” My Psychologist had been working on me for weeks – to me all I kept seeing was the picture of me in a few years from now in a disastrous situation. She kept saying to me “Keep your head here and realise that you have to move to Stage 2 – don’t look ahead to Stage 10 because you cannot possibly predict what that will be” Putting these wise words together from 2 different sources made me finally realise that I had to stop the struggle and let it go. It is not that I don’t have people ready and willing to help – I am so very blessed to have such incredible friends and family.

So from that moment, I started getting information on what help I could get. I really had no idea that there was Assisted Living options for under 55’s – I also did not think I would be eligible for the help. Within a matter of weeks I have been able to organise a personal carer to come in 3 times a week to shower me and fortnightly 2 hour visits to vaccum, mop, clean the bathrooms, strip the beds and hang out some washing. This poor old house will be probably the cleanest it ever has been since we have been living here πŸ™‚

I am also eligible for an Occupational Therapist to visit from Bluecare to help organise the house in a way that lessens the struggle. The kitchen is a massive ball of frustration – having to move everything one by one and put it on the counter to get to the one thing you need at the back, then put all the other things back in one by one to find you can’t open the jar without help anyways let alon

My personal carer arrived yesterday and she was wonderful – to be absolutely honest having to let go of the fact that you need someone to shower you was very difficult for me. At 42, this is really not I imagined my life to be. We chatted the whole time which was a great diversion for my pain too and after it was all said and done – I couldn’t believe the difference in my pain. Showers have been absolute hell for many months – no way to start your day and I will put it off for hours and…um…sometimes days…well day.

My friend came over with her gorgeous young girl we went to the beach and had lunch out. Such a perfect day with my perfect friend and my pain well and truly under control – I felt semi-normal and that really is a feeling that I need to grab on to.

Definitely a moment for my “Happiness Jar”

Previous Older Entries

justpaintandplay

Journey of self discovery by Teresa Low Art

National Pain Report

What You Don't Know Can Hurt You

Kaisercraft Official Blog

Inspiring Craft Ideas

EJ Creative Flair

Alternative Jewellery with Heart & Soul

Lindy's Stamp Gang

Join the Lindy's color revolution!

Living Life Beyond Disability

A World Of Pain....Complex Regional Pain Syndrome

College on Crutches

Rambles of a college girl with RSD/CRPS...welcome to my world.

Gotta Find a Home

Conversations with Street People

Paulette's Blog

A Place of Worship: "Tugging at the Heartstrings of God"

Attack of the CRaPS

Complex Regional Pain Syndrome

CHRONIC

A Day in the Life....

A little crazy, a bit obsessed, a lot of screwed up..

Because some of us just don't have it all together..

lady migraine 365

Trying hard to find my way with a headache nearly every day

In Loving Memory Of Jody Ann Bales

All about living life and dying from chronic pain

EDS and Chronic Pain News & Info

Research and articles related to Chronic Pain from Ehlers-Danlos Syndrome & Fibromyalgia

RSDiary

Just another cavalcade of random bitching... ***Updates SUNDAYS