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ME/CFS: A disease at war with itself
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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. golden

    golden Senior Member

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    http://healthypossibilities.net/2014/06/09/meditation-and-aspergers/

    Yes. I have had such issues too.

    Doing a quick search on Meditation and Asberges seems to bring up similar issues.

    This lady got freaked out when they told her to imagine her head was a balloon getting bigger :)

    or when she was lying on a beach with waves lapping on feet as the logical conclusion waa you dont fall asleep with the tide coming in as you will drown (although more likely you would just get wet and wake up).

    " know a number of aspies that feel the visualisations they are asked to do as part of mediating and these can be quite distressing unless tailored specifically for those on the spectrum. An example of this is not from a mediation but a phrase used to describe my dog snuggling up to me on the sofa (said by my sensible and non spectrum partner) – he (the dog) would get under your skin if he could. To my partner this just indicates how the dog snuggles so close that there is maximum contact between dog and human, to me this sounds and indeed feels horrendous, the dog will force his body through the skin on my arms etc…..urghhhhhhhhhhh "

    This link has advice on the bottom to say that any imagery and wording MUST BE TAILOR MADE TO YOU @T1.

    So you may have identified and forseen potential issue with the next session as you say you do not identify with the words etc.

    -------------------


    I just did the hand meditation myself and it was interesting. All the triangles on the skin, my fingers are like Cockateil feet, big knotty knuckles from too much thinking and cracks in like a dessert. Blood vessels and so on.

    Isnt the functional purpose to rebuild the neural network or something like this?

    But its going to be extremely individual.

    I wonder if there is an M.E/aspie meditation list?
     
    Last edited: Aug 21, 2014
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  2. taniaaust1

    taniaaust1

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    The studying hand was just meant to have a purpose of being a distraction (sighs..trying to distract an Aspergers person which something that just doesnt interest them, will not work well!). For something to be a good distraction for me, I need to have interest in it otherwise it is just an effort (work to my ME self) to keep my attention on it.

    I have studied my palms in great depth in the past actually but it was only cause they were interesting to me at that time as Id got given a book on palm reading and was trying to learn it. (another thing which is annoying to me as thou I put in a lot of effort to learn palm reading, my ME brain has caused me to forget everything I learnt there (so another wasted learning effort), so when the therapist was telling me to study my palms, I was getting annoyed the fact I couldnt even remember a simple thing like what the main palm lines in them were called anymore. So then was trying to stop myself then from negative thoughts of my brain which frustrates me SO MUCH!

    umm maybe I should make sure she reads my comments on how it went as I couldnt express it to her verbally, I couldnt even express on the spot to her why I didnt like listening to music.

    As far as visualisation exercises go, they have never worked well for me as I struggle to imagine things inside my head with my eyes shut. I cant even imagine a colour with my eyes shut. I cant get past a simple shape and that taxes my brain.
    .................

    :) at the other comments you made on Aspergers and visualisations, yeah its true one needs to be careful what one says due to literal Aspie mind set. One thing she said (this is so common for therapists to say this to me but I do not resonate to it at all due to my Aspergers) is "I'll hold your hope for you" (or something along that line). To that comment I was instantly dealing with my brain going "You cant "hold" a feeling, how stupid". My brain associates the word "hold" with something being HELD, like hold something in hand.

    I get this kind of thing all the time with normal persons sayings and just cant relate to it at all, which just leaves me on thinking how silly/strange it is (which is a little offputting when one is trying to have a serious therapy session to have the one guiding it being strange/silly. One hopes the other doesnt use strange to me, terms like that too often). Im often having to try to let go of views of how silly the other is being. I do thou appreciate that the other is trying to be nice even if I do think they are saying silly things.
    .................

    There was an Aspergers person who's psychologist asked "do you hear voices?". The aspie replied "yes". The person then got diagnosed as being schizophrenic and put on drugs for this only for it to be later released a misunderstanding had occurred and the person was refering to ordinary every day voices of people around that speak to him.

    Having aspergers, means that Im constantly trying to work out what people actually mean by their words (and unfortunately this even occurs while Im having therapy). Its not a simple matter of they say this so it means this, but needing to analyse everything to try to make sure Im getting the right interputations of what they are trying to say and not what they are actually saying. Or otherwise big mistakes are made and people get angry at me as they then havent understood why I did something I did eg specialist became annoyed at me last time I was there as Id misinterpretated him on the phone and acted on the misinterpretation (the nurse had to step in to diffuse it).
     
    Last edited: Aug 21, 2014
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  3. taniaaust1

    taniaaust1

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    I just finished reading that, thanks, its a very good article and thou I arent visual, many of the things she mentions happens to me too.

    haha, thats exactly what I'd be thinking too and I'd be squriming all over the place wanting my shoes off but not wanting to do it as noone else is doing it so would be feeling a lot of confusion on what to do. I'd probably waste the whole meditation session on thinking "what was I supposed to do?" take my shoes off or not? Fortunately the meditation classes I have done in the past have all started off with something like "take your shoes offf and get comfortable".

    Guided meditations of "You are at a beach" my mind goes "no im not, Im at home". My mind fights "the unreality" of the meditation the whole way. (I spent over 2 years daily doing guided meditations and still couldnt visualise them).
     
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  4. taniaaust1

    taniaaust1

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    I want to share something way off topic but which shows just how badly the disabled can be treated in Australia, this is on an issue which has always bothered me and FINALLY there is a class action suit over it, some are only being paid $1 per hour http://www.abc.net.au/news/2014-08-...orkers-call-for-boost-to-meagre-wages/5687908

    The intellectually disabled taken advantage of and being treated like slaves, I wouldnt even call that "wages" seeing they could be working all day and it wouldnt even pay for their lunch.

    This came to my attention years ago when I found out how much a hard working Downs Syndrome guy was being paid at my local supermaket. This guy no matter what the weather was, pouring rain or summer heat wave, had the job of bringing in the supermarket trolleys in the carpark and putting them back into the trolley bay (a job someone really needed to be doing). He worked so hard.. I felt like how can treat him like that, he was receiving next to nothing for doing this.

    Anyway, seeing that news article makes me happy and I hope my government will be forced into having to PAY OUT and stop this horrific discrimination against the intellectually disabled.
     
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  5. taniaaust1

    taniaaust1

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    Seeing Ive been ill all night and are quite tired, right now Im worried I may be asleep when the people who are supposed to be coming today show up. Good chance Im going to suddenly fall asleep at some point and may miss that door. I need to keep myself awake for the next 3 and a half hours as if I fall asleep, its very doubtful I will be getting up again till this arvo.
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I agree, @taniaaust1 that the therapist clearly doesn't understand Asperger's or your situation at all. I hate it when people suggest things that I can't do or which upset me - like you, it reminds me of how different life is for me compared with a normal life for people with nice tidy homes, cars, etc. It can be like having salt rubbed in a wound (sorry about the metaphor!).

    Apart from the practical help she may be able to provide, the sessions seem to be doing more harm than good. They are not helping to address the practical problems that have got you into this situation, but threaten to make them worse by draining your energy.

    I hope your builders turn out to be better than average at cleaning up. There are a few who are, but very few, in my experience.
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I meant to say, Tania - you do know that you can get sugar-free throat lozenges, don't you?
     
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  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I can sympathize a little with what you are feeling. When I was going through my psychologising stage, I changed councilor once. I got tired of repeating all of the things I had told the first councilor to the second. You need to keep in mind that while you have said a lot of these things several times before, your therapist has not heard them.

    Maybe this is her way of getting to know you. Some people do not do well with "Tell me about yourself". As you tell her what is not useful to you and why, she will learn about you. However, if you have some things you would like to tell her about yourself, tell her so.

    I can see two good things that came out of this first session:
    1) She is going to try to get you some help with unpacking the boxes. It appears she was listening to you when you told her that looking at those unpacked boxes was not calming.
    2) She offered to help you with a letter.


    These two things make me hopeful that she is starting to understand that the best thing for your mental health is to resolve the various problems that are confronting you. :hug:
     
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  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    IIRC, your therapist knows a (very) little about ME, but nothing about aspergers. It might be worthwhile to take some time at the beginning of your next session to tell her a little about it, including the fact that you do not relate to the words she used when telling about her plans for that session. You could give her the link that golden found.
     
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  10. golden

    golden Senior Member

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    Sorry @T1 crashed mid post.whilst chatting to you .slept a LOT but worse than usual. Think in part its the intense concentration i used on my hand lol. I forgot that happens.

    X
     
  11. golden

    golden Senior Member

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  12. golden

    golden Senior Member

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    Yes I am understanding, starting to understand just how much M.E. and Asperges clash now.

    Looking at your hand as a distraction? I have never heard of such a technique. A distraction from what? To interrupt a thought pattern?

    Do you know anything you could replace it with that does interest you, that you can modify the technique with?

    There is a book 'Meditation for Asperges' it might omit the silliness. I may get it myself as a lot of these issues have arisen with me. Whether its come from extensice Zen Meditation, Right speech practice or visualisating manifestation I dont know. But this has grated on me on the past.

    For Asperges one doesnt say things like, 'take a seat'. But 'sit down'. And what an awful misunderstanding 'Do you hear voices' :( That Asperges Man went through - when of course he said Yes meaning ordinary everyday voices!

    When you take into account though that a lot of people have their own idiosyncratic dialogue running through their head when speaking (or worse when Listening!!!) - computing it all depending on their programming or mindset -

    Coupled with gender differences, cultural differences - its a wonder any of us
    manage to communicate anything at all :
    :)

    I had some similar issues. 'What doesnt kill you makes you stronger' - Really?

    Having said that these are supposed to be keys/codes to unlock a feeling of transcendence.

    I have been wondering what positive phrases are inspirational, truthful?

    Since you @T1 have been previously skilled in yoga etc. I understand how the breath can be the best thing to follow.

    I do also one with my neck. It is slow movement techniue. I move my head from left to right as slowly as possible, so you cant even see it moving. Focusing healing awareness whilst doing it. Because this is a hot spot for M.E. all sorts of things happen. (In fact this too coukd have knocked me out as I tried that as well as the hand technique lol).

    Anyway, I mention it because I have read breath and
    movement are the best meditations with Asperges.
     
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  13. golden

    golden Senior Member

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    Editing issue had to begin a new post.

    I think it would be very useful though to find/create more techniques that work. Anything that aids us in reducing the extremely stressful things is of value.

    So long as the physical is being primarily addressed.

    Some of my most liberating, spiritual experiences have been when I had No Hope. I dont say that too often as it can be taken the wrong way :) It was in deed a very positive state. So we are all very individual!

    Hope you got through the day as uneventful as possible and are resting up as well as can be expected...

    Golden
     
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  14. taniaaust1

    taniaaust1

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    I keep being woken by bad dreams, :( It just happened again, I fell asleep in exhaustion tonight and then had this (its 12.30am now). I type it as thou Im extremely tired, Im too upset after this dream to go right back to sleep.

    The disability services dream I just had

    Im in a place with my family (like a caravan park) trying to rest as Im really needing to rest but unfortunately I also have an appointment with the person frm disability services (it was the one who is currently giving me the trouble). She arrives and I feel very vulnerable. I need to get away from her so I end up fleeing, ending up in a transportable place in the caravan park. This new place is full of people.

    A nice guy there tries to help me but then the disability services lady is suddenly here too. She starts harrassing me and Im crying, I then get extremely upset and start throwing sand in her face, I throw and throw sand at her. She's upset and crying herself now too. Others thou think Im the one doing a bad thing as they dont know how she's treated me, so some are quietly coming to her aid but people mostly stay out of it. She herself ends up fleeing and in the process drops some things.

    I go outside to leave and see some things she's dropped outside, its case notes on a few other people and myself too. I see she has all the right facts in it from others in the case notes so can see she's got no excuse for treating me badly.

    Im just realised how exhausted I are and realise there is no way Im going to be able to walk back to where I came from, I also realise Im lost and dont even know what way I came from. I start crying as I need to get back and be able to rest. I dont know what to do.

    After a while I realise that I should ring the police and see if they can help me get home thou I expect they arent going to like this request and are doubting they will help (but will they leave a very sick person who cant get home stuck??) I guess its something Im going to have to find out, I desperately need to get taken back to where Im staying. I ask one of the people outside to phone the police for me.

    The police come, but instead of taking me home, I get told they are going to arrest me for throwing sand at the disabiity SA person as she pressed abuse changes against me.
    .....................


    This sucks, I cant even get a break from them in my head when Im asleep. They haunt me and even affect my sleep.
     
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am sorry to read about the nasty dream. :hug: I hope you are feeling better by the time you read this.
     
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  16. taniaaust1

    taniaaust1

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    Update

    Stupid "Rules" and DISCRIMINATION have impacted me once again. This time it turns out I cant continue on with any appointments with Robyn Lingard, the psychologist due to them.

    She just rang me earlier to tell me that while she was enquiring for another ME/CFS person if she could have distant psychology sessions with her via email (another housebound person who cant leave her house), she got told medicare has a rule in which they only cover psychology apointments IF the person actually is going to the therapist IN PERSON. So this means I cant get my phone counselling appointments covered at all by medicare.

    Robyn Lingard said she could do them for me half price a session at $45 each but all that would is make my financial situation worst and if I had that money to throw around, I'd be better off paying someone to do some housecleaning for me or pay someone for their time to take me to a medical appointment, things which would actually help a wee bit to solve issues.

    So all this latest things has done once again is reaffirmed to me just how hopeless my situation is.

    I was told that medicare thou do support phone psychriastrist appointments but fat chance Im going to try to go to one of those not familar well with ME who hence only make me feel worst!!! That wouldnt be suitable for counselling me for discrimination and bad ME/CFS treatment.

    I ended up sick for 2 days (red sore throat, swollen glands) after that psychology appointment just with Robyn so I wasnt knowing even if I could continue that but would of kept trying for a bit longer (but with just 20min sessions to avoid too long on phone), When my glands are swelling etc, I feel even more emotionally crappy as Im sicker.

    I kind of just now chewed Robyn as she was saying things like "we all feel like things are hopeless when depressed".. my Aspergers had me chewing her for that comment. I'm feeling hopeless as its a LOGICAL THING and my mind thinks logic. How do I go against these GOVERNMENT RULES which prevent me from getting the help I need or gov people who discriminate ME/CFS. Im not well enough to take them to court. Injustice is a huge thing to me. I wil NEVER be okay with that. You may as well be murdering babies in front of me and telling me to be okay with it.

    Anyway.. so now no councilling for me as I cant get in and are discriminated against like this other who's just tried to get help from her too, due to my homebound status.
     
  17. golden

    golden Senior Member

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    So sorry to read of your further difficulties.

    Its very good of her to offer half price sessions. Thats actually what my Perrin Technique practitioner did for me. Kindness like that brings me to tears sometimes and it can be hard to accept. I paid £20 for half an hour and follow up emails/letters written etc. But this was physical therapy primarily.

    It maybe worth thinking about a few sessions, even though you have to pay just as an interim measure?

    Especially if this lady is able to help your case with disability (getting you more support), getting in touch with Charity Organisations etc. to help you.

    Or perhaps there is someone even better that is more in tune with Asperges, does home visits? that Medicare will cover?
     
    Last edited: Aug 25, 2014
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    So, I guess you are not feeling better. :grumpy:
    Weren't you trying to get to some of your other specialists when this psychologist thing came up? Would that be a good direction to focus now? :hug:
     
  19. taniaaust1

    taniaaust1

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    No one knows if she would even manage to get me more support, no one else has managed it. It may just end up being a heap of wasted money would could of been used for something else.

    There isnt no therapist for Aspergers which can come out, Ive tried that in the past and ended up having to travel almost an hour to see one. (that would fall under psychology too).
     
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  20. taniaaust1

    taniaaust1

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    No I wasnt trying to get to my other specialists as that had already been tried with no luck at all, disability services wouldnt give me any support to get to them at all except for those once of visits, so I never got to go back.

    I just ended up being told by the one at the equal opportunity commission that I just need to accept the situation Im in. (she didnt give a crap about I couldnt get to my doctors etc, she obviously didnt believe that I need to do so.. she obviously didnt bother investigating my situation).
     
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