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Thread: I thought I could do it, but no.

  1. #1
    Roverlord off road spares is offline AT REST
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    I thought I could do it, but no.

    I had a mate finish laying the ceramics I started ages ago in the hallway the other day. There was a bit of excess tile adhesive to clean up after. So Whilst Heather was out side mowing the lawns, I thought l would clean them up. So armed with a scraper I got myself to the passage and got down on my belly. The plan was to commando crawl along and scrape the adhesive off. well that was the plan, but not how it unfolded. Once I was on my belly I was like a beached whale, I was unable to roll or move, then cat came but was concerned meowing a lot, but unable to help me.
    I was wearing my SOS pendant, but was reluctant to use it, since Heather was in the back yard and didnt have a mobile on her and would eventually find me laying on the floor.
    SoI managed to ring my neighbours and they rushed over, and Heather and the 2 neighbours managed to get my 120 kg carcass up off the floor. So looks like something else I am unable to do for my self. I'm not sure How I am able to cope as this disease progresses I am glad we have assisted euthanasia in this state, I Dont think I could cope with the pain and ending up a vegetable


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    Hi,
    Such a bummer the limits closing in.
    I was somewhat perplexed as Dad slowed down and simple things became difficult for him. But we coped with it.
    Moving some rocks with a crowbar the other day, I realised that I had picked this one up and put in a trailer some twenty years ago. Now I need planks and levers unless one of the rug rats is on hand.
    Take it easy and be kind to yourself.
    Cheers

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    Contact Dr. Harry, he might be able to train the cat to become an assistance moggie.
    Mate, don't push yourself so hard. There are plenty of folk, on here, who have been helped by you over the years; most of them would be honoured and pleased to return the compliment. If you need a hand, don't be too proud/too stubborn/embarrassed/scared of imposing to ask, you're among friends.
    If you don't like trucks, stop buying stuff.
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  4. #4
    Roverlord off road spares is offline AT REST
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    Quote Originally Posted by V8Ian View Post
    Contact Dr. Harry, he might be able to train the cat to become an assistance moggie.
    Mate, don't push yourself so hard. There are plenty of folk, on here, who have been helped by you over the years; most of them would be honoured and pleased to return the compliment. If you need a hand, don't be too proud/too stubborn/embarrassed/scared of imposing to ask, you're among friends.
    Its not that Ian, its the fact that all is a struggle, I cant just lay in bed al day or sit down I have always been self reliant and independant. Now I have my food cut up for me, toileting and clothings is with help. I Need help to roll over and get in and out of bed this disease is progressing faster than I expected and I'm not coping with the pain asc no medications are working.Everything ids effected only the part of the brain that that will function is the part that keeps you reminded you to the end of all the other issues. On top of this the NDIS is stuffing me around on a couple of much needed aids. Just having a another Bad week hence the rant.


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    Rant away, mate. Just let us know if there's any way we can make life a little easier for you.
    If you don't like trucks, stop buying stuff.
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    Aww Roverlord, I am sending the biggest gentlest hugs. Do not feel bad for venting, diseases and disability is also a grieving process of loss in a very different way as abilities and loss of independence and everything that comes with I thought I could do it, but no. I know you have loved ones there with you, you have all of us here too.
    Whilst I have a different disease (that is not thefast, aggressiveone you are sharingyour struggles with), I do know that loss of ability, function, being fiercely self sufficient and independent and losing that. And also what it's like being unable to cut up your own food. As well as needing help with toileting too sometimes. (And embarking on plans that then turn out to not work out as intended) I am telling you this so you know that there is some one here who understands, truly, deeply, completely.
    Pain is such a cruel beast too.
    I hope NDIS hurry up and sort out what they need for you
    If you or Heather need to talk to anyone about anything,even just to have someone listen in a completely safe, judgementfree zone, my door/phone/email/ etc is always open.
    I am so very sorry that this is happening. Disease always seems to attack the nicest people and I want to go punch it in the face for you

  7. #7
    Roverlord off road spares is offline AT REST
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    Quote Originally Posted by Epic_Dragon View Post
    Aww Roverlord, I am sending the biggest gentlest hugs. Do not feel bad for venting, diseases and disability is also a grieving process of loss in a very different way as abilities and loss of independence and everything that comes with I thought I could do it, but no. I know you have loved ones there with you, you have all of us here too.
    Whilst I have a different disease (that is not thefast, aggressiveone you are sharingyour struggles with), I do know that loss of ability, function, being fiercely self sufficient and independent and losing that. And also what it's like being unable to cut up your own food. As well as needing help with toileting too sometimes. (And embarking on plans that then turn out to not work out as intended) I am telling you this so you know that there is some one here who understands, truly, deeply, completely.
    Pain is such a cruel beast too.
    I hope NDIS hurry up and sort out what they need for you
    If you or Heather need to talk to anyone about anything,even just to have someone listen in a completely safe, judgementfree zone, my door/phone/email/ etc is always open.
    I am so very sorry that this is happening. Disease always seems to attack the nicest people and I want to go punch it in the face for you
    Thanks for your kind words Epic dragon. The NDIS stuff is slowly sorting. The were concerned with the cost of hiring an electric wheel chair to try as my OT doesn't want me to purchase one yet until I can as I need to demonstrate that I can safely handle on out in public on my own. I no longer Drive.

    The short turn hire of the HI Low Bed and pressure relieving air mattress, to make sure it suits me, she doesn't want to go ahead with the purchase until we find the right combo that suits my needs.
    The NDIS were carrying on about the bathroom modification, that's been sorted yesterday arvo,

    Our house is elevated it was determined that a wheel chair lift and mods to the balcony, and concrete work was the best option. now the NDIS is bulked at the $38 K cost and want back door access with a possibility of a ramp. This was determined unpractical do to the slope of the land and length of a ramp needed to get the correct grade . So we have a delay as we need a revisit from the NDIS qualified builder to again submit drawrings and costings.

    Any change, it seems the plan needs changing and often requires resubmitting applications all over again, we even found they updated some forms so the ones submitted were on wrong paper work, but they let them go trough.
    The planner at the NDIS who is causing me grief, did help out by suggesting we move some plan money around so I dont have to resubmit the wheel chair paperwork.
    I have quite a large funding in my plan which I get managed but high cost stuff the NDIS Handles and they within their right are out to save the Tax payers Money. They will only give you basic cheapest quality.

    When I thought every thing was taken care of, the goal posts get taken further away.
    The NDIS wants you to advise of your goals for the next 12months, and you sign to it, well I don't think with the time left I will achieve them through no fault of my own.

    cheers, Mario


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    Hi Mario,

    on the pain front If the normal chemical meds aren’t working have the Doctors considered medicinal marijuana?. From all accounts it apparently is quite effective for pain relief.

    keep your chin up with the with NDIS. painfully normal government organisation. Always seem to make things harder than what they need to be.


    all the best to you and Heather

    cheers, Chris

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    Quote Originally Posted by 4runnernomore View Post
    Hi Mario,

    on the pain front If the normal chemical meds aren’t working have the Doctors considered medicinal marijuana?. From all accounts it apparently is quite effective for pain relief.

    keep your chin up with the with NDIS. painfully normal government organisation. Always seem to make things harder than what they need to be.


    all the best to you and Heather

    cheers, Chris
    didnt work for me, neither with pain or sleep both of which it should. My doctors have said It only seemed tobe effective with some people.I though it would be ok for me as in my younger days when I had a joint all I wanted to do was sleep. Go figure.
    cheers
    blaze

  10. #10
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    Aww its a,system supposed to help and yet, it is broken as you are experiencing I have another mate who has similar troubles with the constant need for re submitting etc. And others telling him what's best when the best person who knows what he needs, is him. They should support your choices too. Its great that there is a thing like ndis but gosh, its going wrong in some areas i really hope that they process any more info really fast and get things right and you what is needed. I went self managed because its meant to be a lot easier on having those choices without the approvals with plan managers, but we will see. So far apart from my wheelchair, I've requested funds once to cover a couple wheelchair accessories. But need to do it again for bigger bills when my cars driving mods are changed as well as bathroom mods.
    I would send my ndis lady your way to do some butt kicking if I could, she is really nice and proactive. I dont think they work outside of their zones though I thought I could do it, but no.

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