Newbie *AB TRIGGERS*

Hi Suzie invited me here from FB.
I have treatment resistant complex ptsd, and depression is a result of the hyperarousal/anxiety from the ptsd.
I have slight bipolar 2 as well so I sometimes get a little bit hypomanic which leads to a bit of depression too.
Recently my thoughts are becoming more chaotic and addled, so I am going to ask my pdoc tomorrow for an antipsychotic.
In the past 20 years I haven't trialled an antipsychotic I am not highly allergic too but things are getting bad enough to give it another go.
I am physically and neurologically disabled as well. Being essentially bedridden doesn't help.
Today was my best day since the Friday before last. My carer was able to bathe me and we went for a drive in the car for 15 minutes. They have not been able to get me out of bed except to toilet me.
I have been fixated on death and really worried that I've missed the window for my physical, cognitive and psychiatric health to be well enough for me to get my affairs in order. Even if my passing is not imminent, I am worried that I've missed the boat. I keep reassuring myself that I do bounce back and that I have to make it #1 priority, instead of humour of fun, when I am feeling better. Every time I bounce back, I always lose ground on where I was the previous health relapse and I live in denial. I am socially isolated. I have no friends or family.
I have a support coordinator, a pdoc who skypes with me, a gp (when I'm well enough to see him) and daily paid carers, with the option of 24 hr care when required in crisis. My NDIS plan is huge. It's been impossible to get the care I've needed for most of the year, so there is heaps of funds left.

Hi and welcome to DWD. You will find that we are a friendly bunch and you will normally get a reply the same day as you post. For now, have a look around and jump in where and when you like. Again you are very welcome here.

Hi and welcome, Jade :). What makes you worried you’ve missed the window?

Thanks Maggie,

Quote:

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Originally Posted by Paula

Hi and welcome, Jade :). What makes you worried you’ve missed the window?

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Because my neurological and psychological capacity is declining so fast. You have to have legal capacity to get this stuff done and the times when I am legally well enough to get this stuff across the line is getting fewer and farther between.

Because I am often bedridden, I don't know about how to get a solicitor to me. It is something I have never had to do before, so I don't know how to go about all that.

I feel pretty vulnerable, if I'm perfectly honest. Thanks for both of your responses.

Hi and welcome lovely. I'm glad you made it here.
Sweetheart there are solicitors who do house calls, it might be a case of asking around your local area - but you can get better from where you are now lovely. Shall we start with the basics?
Have you eaten? Had something to drink and taken your meds?

That's really hard to read... I will put in some spaces.

Hi, I'm starting to get psychosis and massive blackouts. I'm getting so confused that I'm getting lost in my own small housing commission house. I have trouble remembering how to use the television remote.

The antipsychotic trial didn't work and I am not able to take other mood stabilisers. When I am next able to get back to the GP, I will need to get bloods taken because my pdoc thinks my Topamax is too high but my mood is so unstable, I would hate to think of going lower than 100mg. I have trouble sleeping on 15mg Zopiclone + 50mg Doxylamine + 25mg Diazepam + 25mg Baclofen + 5mg Prazosin which my pdoc has set as my maximum for me. I never go beyond what my pdoc tells me is my maximum dose, no matter how bad I am. I hope it is okay to talk about meds here. Please edit if not okay.

I have got a general neuro appointment come up in January and that will help manage the mitochondrial disorder and suspected dementia. I have been referred to the same doctor for a functional neuro appointment for the functional neurological disorder, so it is good the one neuro may manage the 2-3 neuro disorders.

I have had frozen shoulder for nearly three months, from closing a gate, not realising I had done any damage at the time. I am getting steroid injections. They have picked up other injuries that are most likely from my childhood abuse that is complicating the healing process that may need attention but I feel too sick to deal with it and my GP has allowed me to put further investigations on the backburner for now. At least I got the ultrasound done. That is just the tip of the iceberg.

I'm working with my support coordinator to put my end of life arrangements in place. We are also working towards getting home maintenance work done. We have to get an OT assessment to get me a new wheelchair.

My old provider has defrauded my NDIA account about $10,000 even though I raised the alarm and advised the NDIA that I had instructed the provider to run invoices by me before submitting and advised the NDIA not to pay until I authorised the invoices were correct. The provider did not present me with the invoices and the NDIA paid fraudulent invoices regardless without my consent and refused to reimburse my plan the amount of the fraud. I am still being harassed by the provider despite providing a representative. They have come to my house during the weekend, text me during the early hours of the money. The CEO has called me after hours to argue with me. They email me from new email addresses to get around the block. Finally the NDIA are investigating the provider and I have had to work hard to supply all the evidence to show all the ways this provider has breached the regulations. It is hard work and I'm not young so I am prepared that the outcome of the investigation in the face of overwhelming evidence of fraud could be "no case to answer". But I also know that if I have done my best, it's okay. That is what is infuriating - that "my best" is so weak now. I'm so vulnerable. If I was well, I could mop the floor with these guys - and that is how they get away with these things because they prey on vulnerable people. That makes me want to fight them harder but I have nothing left in my tank to fight with.

I tried to get into a peer support group to get out of the house but I was rejected for being too sick. My carer and I are chipping away at finding another peer support group and step by step slowly getting me engaged in a group somehow, with the support of my carer. Suzi, just to put your mind at rest, I'm really good at looking after myself. My carers always say that I'm a good influence on them because I model healthy behaviours :)

Hi Jade, I’ve added a trigger warning to your thread. It’s nothing to worry about, it just ensures members who may be triggered by certain subjects can avoid the thread if necessary.

I’ve also deleted the duplicate post for you

Lovely, I’m so sorry. I wish I could say something more helpful but your situation absolutely sucks. I think you’re incredibly brave and I’m sending lots and lots of gentle hugs (bear)

I know so little about how to help you fight the insurance issues over there, I honestly wouldn't know where to suggest you try for help and support either.

Do you have any hobbies that you can enjoy or that can help you to get out a bit more?

Thanks Paula, for making my post compliant. Can I ask a newbie question. What does AB stand for? *blush* for my ignorance.

Thank you Paula and Suzi for having the strength to respond to such a difficult post.

Today, was productive. I see my GP for my MH plan in 10 days now. I cannot start steroid injections until 11 Dec but at least I started taking anti-inflammatories today. I knew I had to start on Wed arvo but hadn't managed to coordinate my brain to start until today.

I have lost all of my 5 closest friends this year due to the severity and the complexity of my symptoms. My peripheral friends pretty much ignore me too. Today I was surprised to be tagged by a four year friend on FB this morning. However, it was to say something very negative about me. I inboxed her challenging her about ignoring me three times when I asked her last week to fill in my memory loss about a FB memory about a serious incident that happened three years ago but she had no trouble tagging me to take a shot at me. She replied "Whatever, it was in the name of fun, if you can't take it, then bye!" and unfriended me. We weren't as close as we were 3-4 years ago but I still cared about her and had supported her through her recent marriage breakdown. I emailed her to say that I cared about her and that I would miss her, took a valium and cried my eyes out. Obviously the friendship had died anyway but it just confirmed how little I mean to people.
A woman I met in psych rang me. I answered it even though I was blubbering and she told me how wonderful she thought I was. Later, one of my five friends who ditched me rang. Because I was too sick to attend the peer support group he took pity on me and is calling in after the support group tomorrow. Funny how weird things happen like that.

About two years ago, when my claim for TPD was denied the representative tipped me off verbally that it had been denied illegally - that I had satisfied every criteria and any solicitor would be able to get my claim approved. My health has taken up all of my time. I didn't have the capacity to follow up any legal issues. My carer helped me today to phone a solicitor today that the QLS recommended. She had a lovely, efficient but warm manner. She put me on conference call with my superannuation company. Their response was suspect, abrupt and very evasive as soon as they got access to my file and my solicitor was very assertive, confrontational and like a terrier. Only if my case is open/closed with no dramas will I pursue it. My next door neighbour said the solicitors took 60% of her claim, Centrelink 20% and she got 20% and had heaps of stress. I will have to let it go if it involves any stress.

My support coordinator gave me the contact for home maintenance but I told her we had to let it run over to next week along with other stuff. The OT stuff is further down the list than that. Having a neurological dx should have got me a support coordinator automatically even if not severe and complex disability. It took me 3 months and a failed review to get the support coordinator that I should have got straight up. After all that NDIA now has the hide to give my support coordinator a hard time about not implementing my plan fast enough because we are limited in pace by my disabilities. I wrote a email about how if the NDIA didn't give me such a hard time we would get so much more work done - and my carers backed me up about how frequently they observe NDIA-related stress impacts on my health, my capacity to function, and the implementation of my NDIA plan. There is no winning against the government but at least it is recorded in black and white.

My last Suicide Call Back counselling session is next Friday. My pdoc will talk to my GP about local therapist. MH plan on 27 November.

My psychiatrist, GP, Support Coordinator and Carers are fantastic. They sustain me.

Thank you again for your responses.

AB refers to potential abuse triggers. On that note, have you ever had any counselling to help you cope with the impact of that abuse?

You talk about how little you think you mean to others and, given how appallingly you’ve been treated, I’m not surprised you feel that way. However, you have had phone calls from two people who obviously care and want to support you and I hope you can take comfort from that (bear)

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...

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 :).

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.

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...

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.

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.

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?

I’m just leaving a hug here (bear)

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. (nod)

Oh Jade I’m so pleased the meds adjustment has helped. You’ve got enough on your p,ate without dealing with those symptoms. If writing but not posting to us helps you with the notes, that’s fab. It’s less important how we help than is the fact that we do ;)

My last post hasn't been approved and I said I wanted this to be my happy place but I'm breaking that...

I went to take my meds tonight and discovered that yesterday, I hadn't taken my AM or PM dose. I have no idea of what that was about. Today was my best day in ages. I can't remember what was in my last post but I dropped my sh*t because my support coordination services were pulled. They have been reinstated. This is after my support services being pulled last week by another provider and trying to get a more intensive provider into a service agreement. I may be able to get the support coordination service to back off on their service agreement while I get my acute care services in place. Management is putting pressure on getting a SA through when I do not currently have the cognitive and psychiatric capacity. If they just backed off, we could get it done. I'm pleased to be able to support my friend with cancer. She is having people being so selfish and one thing I can do is hold the space for her, allow her to be in the drivers seat and assist her with whatever she needs help with, and help bring in others who will do the same for her too. That is something I can do well, at least.

I've just approved your post and Paula's reply, I'm sorry I didn't spot it earlier..

I'm glad you're getting some of your support put back.
I'm glad you can support your friend, but make sure you are caring for you too lovely.