Feeling upset at my local ME/CFS society

[taniaaust1]

There was no criticism intended @DownUnder . I simply pointed out that at the time of posting the article was still there (as indeed had others). The gist of my post was actually to send a little support to taniaaust1.

thanks for the support.

I want everyone to be aware that all those at the SA ME/CFS society do have ME/CFS/FM too so may not be quick with things. They are all ill too.

 

[taniaaust1]

@taniaaust1 As a fellow sufferer I am sorry you've had this experience recently and only too aware of the issues we face here.
At our next seminar August 27th 1:30 pm Dr Bruce Wauchope will be talking on the proposed ME/CFS Clinic and the stepped, problem solving approach to their treatment protocol. I don't know if you're well enough to attend but It would be good to meet you ( if my health allows too.) I'm not usually on this site but more the local FB pages.
We have some good research happening in Adelaide, some good collaboration too. Also meetings with politicians. Hang in there. Things are changing even though it's painfully slow.

Ive been looking up Dr Bruce Wauchope.. and at what Im finding. http://trinityinyou.com/the-gospel-and-mental-health-sample/ (I are not a christian as such, I do not believe in the bible) "
The Gospel and Mental Health Sample – Dr Bruce Wauchope

During the months of February through to October and December, Dr Bruce Wauchope recorded his sessions at our monthly Meetings. The Gospel and Mental Health a series that show how the wrong view of the gospel can affect our mental health
"
"Then he moves into how the gospel is the foundation of our repentance,conversion and healing."

sorry to be being negative but that's freaked me out reading that. does this mean this dr will be telling non christians that our ME/CFS is due to our lack of christianity, will there be christian preaching in the proposed ME/CFS clinic?. (I put the bold in that quote on him)

 

[frog_in_the_fog]

ME/CFS robs me of my creative energy, I don't feel like doing anything at all. I don't think any amount of religion or meditation will help you be more energetic/creative, but it could at the very least bring you inner peace.

I have to say that self acceptance is a good first step in healing your mind, so that you can work towards healing your body.

https://www.psychologytoday.com/blo...200809/the-path-unconditional-self-acceptance

 

[Hutan]

I watched way too much of that video @taniaaust1 and I share your concern. Hopefully that Dr Bruce Wauchope is not the same as the one involved with the new South Australian ME/CFS clinic.???

 

[taniaaust1]

I watched way too much of that video @taniaaust1 and I share your concern. Hopefully that Dr Bruce Wauchope is not the same as the one involved with the new South Australian ME/CFS clinic.???

I didnt watch the video, that page was enough to cause concern. That last name isnt at all a common name here, in fact I have never heard that last name before so I doubt there would be too many doctors with this name about (though Bruce is a common name here).

I was going to try contacting dr but now I wont but rather will sit back and wait to hear more on things and how he really is as far as ME goes. I have no time for drs who believe ME is in the mind.

 

[Snowdrop]

Hi @taniaaust1

I was wondering if you have ever contacted eMErge Australia for support/help.
I know you don't use email so I expect you'd need to find someone to be the initial contact on your behalf but after that they have a list where you check off which way you prefer to have contact: http://emerge.org.au/find-support/peer-support/connect-connect-others-one-one-home/#.V6i6WPkrI2w

 

[taniaaust1]

Hi @taniaaust1

I was wondering if you have ever contacted eMErge Australia for support/help.
I know you don't use email so I expect you'd need to find someone to be the initial contact on your behalf but after that they have a list where you check off which way you prefer to have contact: http://emerge.org.au/find-support/peer-support/connect-connect-others-one-one-home/#.V6i6WPkrI2w

Hi I "think" I have once before, but with my brain Im not sure. If Im remembering correctly there wasnt much they could suggest to me in this state due to the situation Im in (I cant get to ME/CFS specialists including my own). There is no carer/home support service in SA to help severe ME patients (as our states disability service removed it from their list of those they help)

I've just ended up in hospital again for the second time in a week (I was in hospital last Friday and Saturday.. then again Tuesday and Wednesay).

Cause the ambulance had to be called from the shopping centre, now the little amount of support I get is being put on hold till we can have a meeting about me next week (so I havent even got to go shopping this week as due to the issues when we went, it still isnt done).

My situation is disturbing my workers (my worker was crying when she had to call ambulance actually her boss stupidly told her to ring the police ..weird but when I give my workers any problems even due to my health, Im being seen as a trouble maker by the new people at my support ageincy.. so when I had an emotional meltdown started crying in the bank as the expections the agency had put onto me were impossible, my worker was ordered by her uppers to ring the police for me causing a public disturbance as I was crying in public (the police then rang the ambulance.. i couldnt stop crying at my situation).

With the latest situation, they'd taken away much of my shopping support time instead of my little cleaning support time even thou last week I got into trouble by them for my workers going over time when taking me shopping as we dont get enough time anyway.

So this meant that cause they decided to remove even more of this support time (makes no sense at all when Im already getting into trouble by them for going over time) I had less then 1hr to do all my shopping and activate a new bank card as my other had broken, we also need to pack and set up wheelchair (which has extra parts on it).. having this expection that I could do shopping and all this in less then an hour put on me (or I get into trouble).. well was too much stress.

well it emotionally broke me and I start bawling at the thought of my shopping were all going to end up being left behind. To top that off the replacement bank card came with a new number and I have direct debits coming out of the account which I now dont know is happening. I had no time at all to sort things (so I currently have my bank card which I dont even know is useable)

 

[Invisible Woman]

I am so sorry @taniaaust1. That's just heartbreaking.

The way the support & benefits system works is simply beyond me.

All black and white and no grey areas recognized - people - even the healthy ones - do not fit into tick boxes.

These bureaucratic systems just let people down and leave the most vulnerable without the support they need. While the private agencies employed make a healthy profit (in the UK at any rate).

It's simply disgusting that anyone, no matter their race, creed or health condition should be left this way.

Even if we do get ME recognized as the serious and disabling condition that it is, the discrimination and inhumanity of it just rolls on to the next little understood condition.

 

[AndyPandy]

"Call the police".

Disgusting, ignorant, heartless, ludicrous, incompetent, negligent etc, etc, etc.

Not worthy of the name "Disability Services".