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Thread: Ponder

  1. #121
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    The world is a stage. Here is my latest act ... although It's rather serious stuff that is tiring me out. This just reflect the hard times I end up having when going to appointments without support. People don't take my challenges seriously. They think I am just trying to be difficult. This letter does not cover the overwhelming triggers - but it's enough for me to make a point what happens to me when people do not listen to me. I'm sick of having to explain with labels but that is another story. This one is about my latest trip to radiology:
    __________________________________________________ __________________________________________________ __________
    To the manger,

    I want to explain about two instances that I had anxiety attacks with the processing your staff were putting me through and also how I feel that my concerns where dismissed and put back on me.
    I suffer ‘mild autism’ although there is nothing mild about my symptoms. The term mild only differentiates me from others suffers with stronger autism who can barely talk. There are times when my symptoms because intense enough that I do struggle to communicate. I believe this is what happened when I frequented your place of business but sadly the people dealing with me would not take the time to understand my explanations as to why I was struggling with the processes.

    The first time was simply the speed at which the staff were talking. Please understand that for someone with autism, this can be extremely overwhelming. As well as suffering that condition, I am also partially deaf and suffer a number of other psychiatric conditions that have lead me to being pensioned off and also supported via the National Disability Insurance Scheme were I am typically supported for such visits.

    I try to make this quick and apologize that I struggle to be concise. I don’t want this to all be about my labels as when I try to explain from that perspective, it’s easy for others to simply blame me and my resulting anxiety. Allow me to quickly make my own incident report and leave it at that with a final request. The following is just to give my side of the story so you can understand how the behavior of your own staff can exacerbate me, but also to show how your staff could learn to slow down and allow space and time for patients that need it.
    _____________________________________________
    Incident Report:
    On my last visit I again struggle with the barrage of questions before being called in. When I got to the tiny change room, I started to feel very claustrophobic even though I said I was not to one of the questions. (I often get things mixed up and do not answer correctly when anxious) I ask the lady to stand back as she was standing right on top of me with her arm held out telling me in a rough voice to step in and put the robe on. I did not like her proximity to the tiny change room, her body language and nor her tone. I asked her to stand back and further said I would then only then move in to get dressed. The lady just stood there without changing her stance and repeated her instruction for me to get dressed. From that moment on … I was super triggered. I was stuttering and reverted to explaining that the way she was treating me was not right. She then stood back and disappeared.

    When she came back, I tried to explain that she was rushing me and not giving me enough space. Although by this stage I was feeling very frustrated, stuttering and shaking – I checked myself and said “I am trying to make an effort to be calm here, could you please do the same yourself”

    All she could say was “Put the robe on the front!” Again, in the very terse voice completely ignoring my concerns. I had issues putting that robe on but more issues later on.

    Please understand that I am all flustered at this stage having a full-on anxiety attack. I tried to explain my plight with my challenges – but she was very rude to me and unwilling to see that I was struggling. Not one ounce of empathy. Just a barrage of militant like stances and instructions. People with ASD/PTSD/GAD and so on do not respond well to being pressurized like so. IN fact, it makes things worse. She was basically using that tone and standing over me all the way through. Until I started getting up and down from the MIR machine not knowing what to do. By this stage I was full blow in anxiety mode. It’s like when I am not sure what I am looking for in the pantry cupboard and start innovatory shaking my head and hand as it in some kind of trance. That is how it was when I got up from the MRI, went back to lay down, then got back up no knowing what to do. Only then did your staff member start to back off with her forceful tone and stance. I was doing my best to be compliant whilst having a genuine anxiety attack. Nobody wanted to say anything about that. As she try to position things and instruct me, I was bouncing around all over the place doing my best to comply.
    It was just previous to this that this MRI nurse called over another staff member for her own support. This made me feel worse. I was not threatening anyone but her actions to have someone else come in made it feel like I was threatening her well being. That staff member was not there to make me feel more at ease. I was having a very hard time dealing with the overwhelming instructions and most of all what I felt was overbearing antics of this nurse. Her response to my panic attacks we to “Hurry up, I have other patients”
    Constantly my concerns about not understanding what was going on, was ignored where the nurse would just continue with the next question and instruction as if she never heard me. That was extremely belittling. On the way out as she broke contact with me, she said something to another patient where laughter filled the corridor. I was extremely humiliated. That said I was remorseful not only for my own lack of control to better explain myself, but more so for the sense of guilt that was put back on my by that attending MRI nurse though every stage of that process.

    That is my version of events … it was much the same the first time around. No understanding of my disability or attempt to understand my inability to comply with such a rushed process. In fact the staff response in my opinion was more abusive than her or the other staff members allegations of my own responses.
    __________________________________________________ _

    I have a solution. Would you please allow me to bring my NDIS support worker who normally comes to appointments with me? It just so happened the last few times I was unable to organize things on time.

    I don’t want to be a burden and I certainly don’t think it was all me in both those instances that was causing all the anxiety. I feel everyone should learn from such unfortunate happenings.

    I find when I have an NDIS funded support worker with me, that I am treated more respectfully and in turn myself am more respectful. People tend to take my disabilities more as genuine. I have all the necessary paper work to validate my conditions and again, have been warranted a disability pension and the NDIS funding for support. I was not trying to be difficult.

    Now that this has been fully explained … may I please bring my NDIS support worker next time. I really do believe things will go a lot smoother. This email is not about accepting responsibility of doing wrong. It’s simply about acknowledging all sides and seeking a solution.

    Regretfully and respectfully
    Mr ****** *******
    PS – I have CCD this to my NDIS Coordinator & Supports so she/they can further validate my supports and advocate for me if necessary.

    Tania – I think I am going to need help with this. I will need to continue using this service and will be unable to do so without support. Could you please also contact Management on my behalf to perhaps make your own recommendation as well? Thank you. I really don’t like being the way I am. I really tried very hard to hold it together. This broke me down when I got home and spoke to my wife about what happened. I also spoke with Ben. You are welcome to call Ben and he can also explain how I was on that day after that Radiology visit. Whilst I feel I have a legitimate complaint, all I want is to be able to go back to this service and not have that nurse pin this all on me.

    Thank you for your time ****** & ******.

    Much appreciated.
    David.

  2. #122
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    SIGH and WOW - I really don't know what to say about that. I should ask Forest Gump lol I could learn a thing or two from him. I seem to be just getting worse. I see what I can do. Anyways - I think that email was for the best. I've been called a stage show before - but what you see is what you get. It is what it is. I'm done holding it all in. This world has not time for anyone. It's all the same pace for everyone when it comes to the medical toxic ways of rushing things. There really seems no way of avoiding it though. I'm going to have to put in place better practices when attending such things. All the hustle and bustle, noises, sings, instructions are enough to contend wit for me ... but the way people deal with others is just plain disgusting the way they do. It's hard enough at the fast food drive through, but to see the same mentally in a medical center ...

    This is why I no longer want to be a part of the human species and or this existence. Sad to say - somehow I have to change the way I feel about that. I don't want my grandson picking up on that. At least I am aware of it and want to do something about this way of feeling. Right now there is a LOT of low vibes going on everywhere in the world and its very much residual. I have plans ... but for now ... with the torn ligament in my shoulder still plaguing me, the COVID19 WTFE - tomorrow we have another family court hearing over the phone ... it just keeps coming.

    I really do think its part of some BS agreement before I was born - but let's leave that tin foil topic for another time. I best start relaxing as best I can to get some sleep ... maybe tomorrow my bitten tongue will start to heal. rofl ... fuck it ... you goto laugh in times like these.

    Goodnight! Zzzz

  3. #123
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    More ADD-ONs Arrive - Scooter Bag, Handle Bar Extender & Phone Holder

    Also thinking about an enteric horn but I am not a fan of the sounds. That said I would not mind a DUCK with 'quack! quack!' to break the ice with a few difficult pedestrians.







    Google Maps and Easy Access! A+++

    My phones buttons to not allow for exact middle placement, but so far so good. I will update as to how effective this is for the 'Galaxy Note 8'

    I have it screwed in tight with my phone in another soft backing case with plexi glass cover.







    Boom Box on the lower end would compliment the frame/weight/ergonomic look but still looking a little better each time. I am considering lights in the near future.






  4. #124
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    I was a little disappointed on my way back from a good trip out with friends to get a call with from my NDIS Coordinator who gave me feedback on her call with the Radiology place I wrote about a few posts back. I never really heard her swear before, but she did apologize before swearing saying more or less, that she had never deal with such a (*&^ed up place in her life. We know each other pretty well and she has been an awesome support for me so I did not mind her being so lose with her terms. She knew that as well. Long story is that my - well not mine - but you know what I mean ... the NDIS coordinator assigned to be had years previous experience in public relations. So it really meant something to me, more like validated, when she in no uncertain terms said that this place of business was extremely discriminatory towards mental illness. Knowing this is a massive hurdle with many places I frequent in public I reminded her that the Mild Autism Diagnosis is actually neurological. It's true I have mental illness labels as well, but I often attempt to skirt the mental illness discriminatory complement practices by trying to educate people on the neurological processing for ASD traits. BUT - to be fair ... long term mental illness suffers also develop neurological imbalance similar to ASD traits. In fact is has been said by more than one psychiatrist and clinical therapist that my PTSD has exacerbated underlying ASD which is systemic in my family. This gets a little deep but for the most part is straight forward enough - BUT - when it comes to the medical money spinning cattle converter belts ... no one has time for empathy, compassion and all that jazz.

    Sorry for long paragraph.

    In a nut shell - the world in which we live today has very little time and space for so called neurotypical individuals ... unaffected (although no such thing really - just my opinion ... everyone is affected one way or another) I was advised it was not worth the effort to complain any further given that the discriminatory energy was coming straight from the top. After the coordinator rang others in her disability circles, it was confirmed that the place I was complaining about had indeed, a known reputation for abusing vulnerable people. At the end of her conversation It was permited for me to have a support person come along with me through the hole process ... but I have since been guided to attend the private hospital under bulk billing for future ultrasounds and Xrays. I'll only go into the the meat grinder for MRI only. At least in the end ... in my book ... I pulled these cruel bastards up with a pointy bone and let them know I won't be taking their shit in the future. Respect goes both ways. OK

    Here my friends and I had a moment of mental instability re social distancing. Whilst we were doing pretty good with it and most of us fairly stringent with compliance ... *&^% it ... your just going to have to deal with it!

    Fuck that sun is bright ... BUT ... less brighter than tomorrow if I had not gone out.



    I put up some clips of out journey to that spot later on.

    I sincerely hope I get some sleep tonight. All my focus is on now ... is the upcoming appointment at the hospital re my &^%$ed shoulder. It really has impacted me more than I ever thought. I really am getting older ... but that's OK. It's a new form of learning I guess. Such a blessing (for lack of a word) that I can sill ride my scooter if I don't go hard.

    Night night.

  5. #125
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    I had a really good solo walk this morning listening to calm radio whilst doing it. I got a call from my wife who said she was hiding in her room with our grandson because a bird flew in to say hi. When I got home I said hello to the bird, opened the front door and then it decided to leave on it's own accord.

    That is the start to my day.

  6. #126
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    Just ordered a horn for my scooter. But now wishing I got this set up:



    Instead I settles for this one:
    https://www.ebay.com.au/itm/AIR-ZOUN...72.m2749.l2649

    Here is an example of someone looking for trouble using it:
    https://youtu.be/ZOmU-G5uBpU?t=43

    I know it might seem overkill for sidewalks and shared paths - BUT - you would be surprised at all the obnoxious pedestrians with the texting, iTunes and just outright ignorance. I will give fair warning with my bell - but not going to keep repeating it - Instead I will let RIP with my new horn - coming soon! Seriously - I think learning to tap it quickly at the right distance and timing it just right will make the different between people accepting what is and giving way or manifesting tension with regular travelers and regular routes. No doubt something to consider in smaller towns.

    This purchased was inspired by a couple of ladies that refused to move out of the way on the share path. In such instances I will have no issues in helping to influence them the next time around.
    I just need to get a clown one to follow up as an icebreaker ... HONK HONK!!! ... then - Squeak Squeak!

  7. #127
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    Seriously ... when words fail and the world is still closing in on me:

    White Sage:



    I got some bad news today, but not going to empower it with a story. It's more a turning point than anything else. I walked about 9km over two walking sessions today. My only goal is to win the court battle to keep out grandson where he will be safest. After OR if we pull that off ... (looking good at this stage touch wood) ... The three of are going to start taking little weekends away without our computers. (little guy can bring his pad of course. hehe) Point being ... we are going to need to recover. We have been holding out for so long and we are still copping it from all sides.

    I smell the sent a little more ... find something easy to watch then try to sleep. I need to keep that walking up and find times where I just no longer think. When you are low for too long ... negative energies attract ... attachments take place and they are very hard to shake.

    Good night ZZZZZZZZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz


  8. #128
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    One of the most objective and powerful videos I have seen on the world's current perception programming. No tin foil hats here, just a lot of information that makes a lot of sense:

    Now I can sleep.
    Zzzz

  9. #129
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    Off The Phone - Out In The Sun & Boosting My Immune System with Good Friends! A+++++

    4K option still processing ... Could Not Wait. ZZZZzzzzz

  10. #130
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    Might as well tough base re my shoulder. I am thankful as stated before that I can still ride my scooter, although now more roughing it for quite some time. I was informed to cancel my public physiotherapy as the damage done to my ligaments and joints is to far gone for any of that. Basically I am to treat myself like I am frail. My choices are wait 6 months and hope that I may recover a little more ability to a point that some people in the populous might consider do nothing is enough to get by. For me ... that scenario is a HUGE blow and my wife knows it. Not only because I have to lift her from time to time as well as my grandson who is getting heavier but because pushing, pulling and lifting things is a huge part of how I regulate my over all well being and most importantly, my emotions.

    The plan if we can cover the private costs (will have a quote before the end of next week) is to have an artificial ligament implanted into various anchor points of my shoulder bones where connective tissues will take via the process of whatever .... bla bla bla. There is a 10% change it may not take even if I am 100% compliant patient with recovery. I have decided I have nothing to lose ... although if it does not take ... hmmm ... I can't help but think I would end up worse off??? I asked my mum to pray for both financial cost and recovery. She seems very keen to help which pleases me as her reason for doing so was quite warm. Like I say why I wont do funerals, is what we do when we are alive that counts. Mum figures she will not be around for much longer and as sad as that is ... it's true enough. I explained just how much of a lesson this has been for me re what we take for granted and how short our time really is. I know it feels long ... painfully long when in our down moments ... eternally long - but I got to say, this whole thing with my busted shoulder has really put me at the cross roads kind of thing.

    I best start getting my healthy life choices together now because whilst that there is %10 or rejection regardless of patient compliance ... I figure the way I approach things can actually impact those numbers. I dare not think about how some professionals end up botching up the job. My wife and I still shake out head at how the public system screwed her ankle on in the wrong position. Sigh ...

    Righto ... off to bed. ZZZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzzz

    SWEET AS ... 4K Now available. Looks Smick! Very Happy with this little action camera.

 

 

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