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Thread: Newbie *AB TRIGGERS*

  1. #11
    Not "nagging" really... Suzi's Avatar
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    I completely agree with Paula... I think it's great that you have had contact from unsuspecting places - I know how hurt you must be with incidents like that with your friend, but sweetheart people just don't understand what life is like with chronic illness and disability...
    There's only us, There's only this, Forget regret, Or life is your to miss,
    No other road, No other way, No day but today. (Rent. Jonathan Larson)

    Look! I'm walking a marathon in May for the British Heart Foundation!
    Sponsor me if you fancy! No pressure, cheerleaders needed too!

    https://mymarathon18.everydayhero.com/uk/s-shaw

  2. #12
    Thanks Paula,

    Yes, I did take comfort from that. I also had that one of my five friends pop in today. It was like soul food. I felt content. Just goes to show, it doesn't take much to make a human happy, even a really sick one. Wish I could bottle the feeling but know I just have to appreciate having had it for a moment .

  3. #13
    Oh hi Suzi, I just found Page 2,

    Most definitely. I didn't understand profound disability and isolation until I experienced it. It's okay now that I have my new lovely service provider and not the one that neglected me even though I had a six figure NDIA package, until I had to be hospitalised. I couldn't even get myself to the toilet and the hospital had to put many litres of fluid into me because I was so dehydrated... and they are defrauding my plan when they did that to me and still harassing me. I wish we could go back to the old system when the government protected us from dodgy providers in Australia. Anyway, my friend visiting me today gave me a wonderful life. And my favourite carer is on tomorrow. Yet another carer today tried to tell me to go into a home but I stopped her and told her "No - my psychiatrist is getting my GP to have my blood levels tested first to see if it is med related and requesting my GP is doing a prelim neuro exam (because my pdoc skypes with me from another city) and then I see the neuro in January. Me going into a home is something for me to discuss in consultation with my treatment team, not for my domestic support to raise with me. If you are concerned, I can reassure you I have it well in hand with my doctors and support coordinator". My usual carer and the service manager were outraged about another carer suggesting I got into a home. They won't be happy to know it's happened again, but I have to mention it to shake it off because it does affect me, even if I seem assertive about it. It seems my thread has come to an end but I have appreciated just being able to have that outlet. It does help to vent, even though it is negative and yuck, I can't help the fact that I am sick and that is what I am facing. I embrace joy with both hands when it comes my way and I'm so grateful for the sense of contentment got to experience today . Thank you both.

  4. #14
    Not "nagging" really... Suzi's Avatar
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    Can you talk to someone about this NDIA stuff and work through it - as to be honest I have no idea how it all works and can't help you at all and google isn't being much help!

    Do please vent as much as you like about everything...
    There's only us, There's only this, Forget regret, Or life is your to miss,
    No other road, No other way, No day but today. (Rent. Jonathan Larson)

    Look! I'm walking a marathon in May for the British Heart Foundation!
    Sponsor me if you fancy! No pressure, cheerleaders needed too!

    https://mymarathon18.everydayhero.com/uk/s-shaw

  5. #15
    Hey Suzi, it's too traumatic to go into atm, so I'll talk about the positive stuff. I just had my last counselling session with a very good counsellor and wrote her a very good review to help with her government funding. She was an excellent counsellor who was the first in my life who had the courage to validate the helplessness of my situation. I am "treatment-resistant" but ironically having someone for the first time not being afraid to really explore what it was really like to live in my skin with me, has given me a better chance to self-validate and lower my symptoms, just a bit. When we went to the dark places, she gave me such simple, gentle strategies that were effective in relieving the pain just a little. It made me feel good to be able to give positive feedback. I'm trying to focus on that because I have been hit with so much extra stuff I'm in a really bad way. I cycle between despair/despondency and then denial. Denial is massively important in crisis sometimes. I just hope I can stay in it until my fortunes change a bit! I have been in contact with Acute Mental Health Care over the past two days to let them know I am dealing with additional abuse and trauma and they will be providing me with extra support over the weekend.

  6. #16
    Well shame I can't delete. My fortunes did change a bit. The service provider did agree to renegotiate the service agreement, not straight out breach it, leaving me without care. So although the renegotiation is not fair or necessary, it still covers me.

  7. #17
    Not "nagging" really... Suzi's Avatar
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    That is good that you've got that cover, and in time for the weekend.
    You don't have to talk about anything you don't want to here lovely. I'm so glad that you had a good counsellor. Can you not continue to see her?
    There's only us, There's only this, Forget regret, Or life is your to miss,
    No other road, No other way, No day but today. (Rent. Jonathan Larson)

    Look! I'm walking a marathon in May for the British Heart Foundation!
    Sponsor me if you fancy! No pressure, cheerleaders needed too!

    https://mymarathon18.everydayhero.com/uk/s-shaw

  8. #18
    Princess Sparkles Paula's Avatar
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    Iím just leaving a hug here
    Cast all your anxieties on Him, because He cares for you. 1 Peter 5:7

  9. #19
    Thank you Suzi and Paula,

    About three times now I have written essays in response to your replies but have posted them in my carer's notes instead. I don't need to go into such detail with you guys but you are a good catalyst for me to formulate and articulate everything that has been going on for me.

    I read over my previous posts and I am pleased to be able to report that it does look like my pdoc was most likely right - that the Topomax dose being too high was creating the psychosis and the blackouts. (I never knew meds could create that stuff. I seriously thought I had developed a psychotic illness. My pdoc assured me it was really unusual to develop this late in life). So all that has disappeared (so far) since I've lowered my dose and I'm heaps clearer cognitively too. My frozen shoulder is much better since I've started taking anti-inflammatories now that we know what it is, and I've only got a couple more weeks to wait until I can get the steroid injection that should make it even better.

    Yeah, there is heaps of drama going on, but I like this to be my happy place. I get a lot out of you guys responding to me. I know you can't forever. But I'll enjoy it for the moment

    Suzi, the counsellor was a s-prevention counsellor as part of a program that provide a set of 6 one hour phone appointments. Apparently they have the discretion to extend it to seven sessions in extenuating circumstances and she offered that to me. (We also spaced them out to fortnightly appointments to make the period of care last longer). It was highly effective and that is why it was so important that I provided that feedback. I think we always need to provide feedback for effective services that receive government funding to help them retain that funding - even if it is for our own benefit . It helps them prove they get outcomes... to show the government that the money is well spent. I can only use the program once but it was well worth it.

  10. #20
    Princess Sparkles Paula's Avatar
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    Oh Jade Iím so pleased the meds adjustment has helped. Youíve got enough on your p,ate without dealing with those symptoms. If writing but not posting to us helps you with the notes, thatís fab. Itís less important how we help than is the fact that we do
    Cast all your anxieties on Him, because He cares for you. 1 Peter 5:7

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