Emerging…

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Today, on my second attempt I was successful with my application for a Disability Pension. Back in September when I first applied, apparently I was not disabled enough and I was worried this time they would find some reason to knock me back – but they didn’t. It felt like I was handing in an assignment (and it probably had the same amount of pages) wondering if I had “Done Enough”. Have you managed to explain down to the earth and bones of how this illness effects every tiny part of the day? I am now dreaming in CRPS language for example when I appear in a dream – I have CRPS in it. How does that work? I was with my ex husband for 14 years and not once in that time did he every appear in a dream. Now he is there most nights and most nights I am acting like a crazy bitch and chasing him with various long metal objects to inflict as much pain as I can. 🙂

So today was a relief, no need for an appeal,  no more effort required to prove how shitty it is to have this disease. The stupid side is that I was happy (in a macabre way) that I finally got the pension. We have struggled for over a year and a half on an Allowance amount that is supposed to encourage you to find a job – any job because your family will eventually starve on this amount of money. I think it’s hilarious when current affairs programs make out that you live the high life on a Centrelink payment – for us it meant for many weeks we would live on a budget of $25 for a week’s worth of groceries because that was the week I needed to buy my medication. The Disability pension is $91 more a week and for me this is an absolutely huge difference – in hindsight a lot of that money is now taken up paying for a personal carer and a cleaner – but still it will definitely be easier. I want somehow to be able to put “Entertainment” money aside – every week so we can have a takeaway meal or maybe go to the beach once a week. We have missed that for so long.

But then the word “Disabled” comes into your mind, you can casually say the word on the phone with others and it rolls off the tongue like you could be talking about someone else – but today it has taken in a whole new meaning.

I have to tell myself and it is true – 2013 is being slightly more gentle with me. Things have been going right but in such a “not normal life before CRPS” kind of way. Applying for assisted living and being accepted with cleaning and showering, trial infusions next month, the disability pension meaning we can stay living in this wonderful house that I love so much and that we can breathe slightly easier. I am not game to recognise too much what 2013 has done by holding my hand for the first 2 months after so many years of wrong and bad – I just feel that I can jinx it by acknowledging it.

I wonder if I will ever be able to wrap my head around the new person emerging – not a person I thought I would ever ever meet. How do people live a rich and fulfilling life like this? My hat and everthing else I have goes off to them. They show an incredible strength that I don’t ever think I could be associated in the same club as them. I stumble, I flounder, I float with no direction forward. It’s just decisions as to how your day will be, determined by the amount of pain you feel when you wake up and have a cuppa. Going through the motions and being such a toddler of your own life discovering a new world with so many limitations. They say it gets easier. It’s harder at first because you can remember your previous life. I know if you let me out of the box I can find that person that I used to be, even if it is just for short moments, I can’t lose her. I won’t let her go….you may not even realise in a chance meeting…maybe you can’t see what I see…but everything looks different through these eyes now.

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Aside

4 Comments (+add yours?)

  1. Paula Wilson
    Feb 26, 2013 @ 01:54:42

    Hi.
    So pleased to hear you have received some positive news. I have literally just been diagnosed with this disease after continuing to suffer agonizing pain since a car accident 2 years ago. Like yourself, I’m still trying to get my head around the impact this is going to have on out lives. I have bee trying to figure out if I’m entitled to a disability pension or carets allowance for my husband etc and that’s how I came across your blog.
    Can you give me any advice as to how I need to fill in the forms, the right “speak” etc.
    I would be so great full for any help or pointers you can give me.
    Thinking of you a d wishing you more good days than bad.

    Written from bed with my heat pack on my hips and waiting impatiently for the MS Contin to finally kick in some 😦

    Best wishes
    Paula

    Reply

    • shazzagirl70
      Feb 26, 2013 @ 14:23:53

      Hi Paula, thanks so much for reading and I am really glad you found me but so very sorry you have this horrid disease too. Yes you are very right that getting your head around the full impact of the disease for me is just too big so I rely on my mental health plan of 10 visits a year to a pyschologist – I have just found a new one and she is brilliant. As far as a disability payment goes, it was hard yakka and I think speaking to the general population of people they are surprised that I finally got it. I seriously think if I have someone come in 3 days a week to shower me – how much more disabled to you want me to get? Disability payment will depend on your individual circumstances. If you are married (which I am not) you will need to give Centrelink a call or go in and see them. It will depend on your husbands income and also where your CRPS is ie hand, leg, full body etc. We must never give up hope of remission – it does happen so I try to stay quietly hopeful but also stay in todays reality which is something that changes day by day. As far as the disability speak the big word is “Progressive” so whether there is still hope of remission Centrelink need to hear that this disease is progressive and there is basically no hope of recovery.

      As far as the Carers Allowance or payment goes, I had no idea my 14 year old son could claim this – we are still waiting for this to go through from the first week of January. Apparently for him being a minor a social worker will call him to determine if he is mature enough for looking after me. That is crazy because it will not stop the level of care that he has to give me it means that they will not pay him for it if they decide that way. I know that a Carers “Payment” is if you husband is unable to go and work and has to stay home and help you. Again talk to Centrelink they will be able to see if you are eligible for all of this. Oh and that really depends of if you are in Australia (which I didn’t clarify earlier)

      I hope this helps – please feel free to ask more questions. Are you a blogger too? I hope that MS Contin has kicked in to give you some pain relief.

      Kind Regards’
      Sharon

      Reply

  2. mybeautfulthings
    Feb 27, 2013 @ 02:19:14

    Your blog is compelling reading…. 🙂

    Reply

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