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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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    I too suspect its better to fully understand ME/CFS and do a crash course on Asberges than the other way around.

    I expect this is something she will be eagre to learn about especially if its more common in ME/CFS people.

    The thing is, its good that you are aware of the past pitfall and hopefully this awareness this time will help you both muddle through any sticky points that may or may not arise.
     
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    golden likes this.
  3. taniaaust1

    taniaaust1

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    A big thanks for that comment as I was beating myself up a bit over the incident telling myself Im probably being just overly senstive.
     
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  4. taniaaust1

    taniaaust1

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    If I die. I give whoever out there wants to do a movie on ME and the abuse around it, I give my consent to do a movie on all which happened to me. (I hope a post such as this can be taken as legal consent!).
     
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  5. taniaaust1

    taniaaust1

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    Ive been thinking about it and had already jumped to that conclusion (as I know what Im like), I would be forgetting to turn it on and off or connect it again if Im disconnecting. I wonder if any come with programming that allows one to set when one wants them to come on and off?? eg turn on at 11am (the time Im nearly always awaken and up by)

    I was upset when my elderly friend got me a printer (without asking me first, with my money) which was wireless (so worried me), I so want to make sure I do not end up causing myself to have more issues then I already have.
     
  6. taniaaust1

    taniaaust1

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    No she refered me to a doctor at the hospital (a nice dr he was actually) but then he refered me on to an autonomic specialist, who had no idea of ME/CFS (I didnt get to find out if they knew anything about hyperadrenergic POTS, it wouldnt surprise me if they dont) and hence had no understanding of how badly doing a tilt table would affect me and who refuses to give me a saline IV afterwards if I need it. I got told they never do that.

    She wants me to go back to the nice doctor at that hospital who had refered me on. (he wanted me to do the test and then come back and see him).

    My GP was rather annoyed at the letter which came from the autonomic specialsit department due to what they said about me, it said something along the lines that it wasnt worth testing me as with anxiety I'd get a false test result (she got more annoyed I think about it then I did, I couldnt see much wrong with the tone of letter with my Aspergers but she said the letter carried a bad tone in it. .

    Ive just now got a thing about that hospital due to the incident too with the head nurse of the autonomic section who mocked me due to MCS. (Shows how bad they are there as it is known that chemicals can be a trigger for POTS too, there has been some study showing that). This is a different hospital to the one who has the professor who thinks there is no such thing as POTS with high BP involvment too.

    Ive asked if I can go and see that doctor she want me to go back to elsewhere but she said it needs to be at the hospital as she wants me to get me into the hospital system.
     
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  7. taniaaust1

    taniaaust1

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    You are right, this standard note they are leaving the housebound needs to be taken up by somewhere as its so wrong (and very distressing to anyone who gets it!! I was very distressed about it). There is a disability council in my state (I think its called SA Disability Council???), I probably should copy this "with condolences " (yeah right) note and let them know about this. See if they will take it up and get healthscope to stop giving housebound people this note.

    My state in a years long government study and report was found to the be worst in Australia re for those who have disability. They are meant to be working towards improving things here.
     
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  8. taniaaust1

    taniaaust1

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    sighs, its just such injustice that you are having to pay for something you dont even have due to being too unwell to sort things out.

    Ive left so many things due to being to sick to sort them out and after a while, as there becames so much loss happening due to this, it really start to get at one (I used to not let it bother me but when so many things are building up, it becames near impossible to keep ignoring what is happening). eg my insurance company getting away with not paying for two things they should of paid, as Im not well enough to deal with them.. amoung many other things (things Ive brought which dont work which I've had to leave due to the issues to take them back) etc etc. It all has financial impacts.
     
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  9. taniaaust1

    taniaaust1

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    Today

    Ive spent the past few days even more stressed out thinking that today was probably going to be the day in which DisabilitySA (and that one from there who has made things up before) was going to come and "observe" me out shopping. (she'd mentioned it a couple of weeks ago possibly coming today). Anyway, this morning she rang and confirmed she was coming... so my stress levels then shot up throu the roof. I thought about even refusing to go shopping as Im so not wanting to be around someone who has shown they will lie and play mind games with me.

    I warned her that as Im not eatting there will be hardly no shopping to do but she said she wanted to see the situation with my wheelchair and the wheelchair trolleys at the supermarket so I braced myself as well as I possibly could for this meeting (and hoped I wasnt going to break down completely emotionally during it, yell, scream, cry or do something). She unrealistically wanted to meet me and my support workers down at the supermarket at 1.10pm when they only arrive at 1pm

    yeah right, my workers going to arrive, we can get the wheelchair in the car in all its pieces and get to the shops by 10mins!!! ..along with my workers checking my shopping list and making sure I havent forgot things before we all leave. What kind of reality does the states disability service exist in? So I ended up telling her we couldnt do it and made a 1.30pm time to meet with her.

    So we get there and we go about then trying to get a wheelchair trolley. The supermarket people are looking for it and couldnt find it. It took 10-15 mins for someone to find it (I only get 90mins to go shopping). So I then prove to her it doesnt go onto my special designed (legs raised) wheelchair (its sooo tiring having to PROVE everything Im saying to the disability service).

    Then I realise that with all the distraction of my workers and me knowing we are going to be "watched" today, well Ive forgotten the shopping list!! (my main worker usually checks before we leave the house to make sure I do have it but I guess she was distracted too knowing disability services would be judging today).

    So we get into the normal confuffle of "oh can you go back to my house and get it for me while I start getting what I know I need" and then realising "oh no, we arent allowed to do that due to rules that noone is allowed at my place when Im not there). So now both me and a support worker need to go back home to get the shopping list (I didnt want to forget anything important seeing I dont get another worker here till 3 days time). Fortunately we didnt have to dismantle the wheelchair again as my newer worker thought to take me to the car with it but then give it to the other worker to watch till we got back (thank god for good thinking as I hadnt thought of that).

    I found the list at home (tried to make a phone call to my advocate while there as the one from disability services had perfume on her but just hit a message bank) so then after considering whether to refuse to go back or not re the perfume, back to the shops we went.

    We got the few things at the supermarket and then went to the cheap shop as I'd lost a cat collar I brought the other day (in my houses shambles and couldnt find it anywhere) so wanted to buy another for one of the new cats (they are one fifth of the price there compared to supermarket). I sent my second worker back to the car to put the shopping in that (mostly water, milk.. no food) while I got the couple of things at other place.

    While there, now at cheap place, looking at my list of things I wanted again, I suddenly realise "THIS IS THE WRONG SHOPPING LIST", Ive picked up the wrong one when I went back home and things Im now starting to became aware were on this list and which should of been gotten at the supermarket, have now been forgot. What I must of done this morning is I must of started writing one shopping list out, but before I was finished forgot I was doing this list and started writing another shopping list out hence grabbed a list with missing items when I went back for the forgotten shopping list (I cant even remember doing this!).

    As agency rules that I arent allowed to have support workers phone numbers, means I now have to phone the support agency and ask them to tell me other worker who is now waiting out by the car for us, to came back so I can send her back to the supermarket while I continue to find what I need in this other shop.

    Fortunately on this occassion, I had money in my purse so was able to just give that too her to do (otherwise I would of had to have been taken back to the supermarket again).

    I finish up at that shop and we get to the entrance of the shopping complex, the other worker thou to our surprise isnt back yet (she must of had trouble finding what I'd sent her to get). So aware this is loosing support time yet again while we are having to wait for her here, rather then packing a wheelchair in the car, so I go to phone the support agency a second time to as Im going to ask them to phone her and let her know we are at car putting wheelchair away. She then appears.

    Once back to in car (me inside it she's outside, I kept teling her to stay away from me due to the perfume..she'd said it was on her clothes..ummm), the person from disability services then says she wants to refer me for a (**balloons** word loss.. something one can get around in) and asks me what I think of that idea.

    I tell her it sounds like a good idea as long as I arent alone as I collapse at times with some perfume exposures (I can fall out of a wheelchair at such times)... so hence still wouild need one support worker. I then ask her if it would fit into a support workers car, she said no it wouldnt. She then proceded to ignore what I'd just said and told me she was refering me for one. (It appears they are determined to CUT BACK on my support time).

    Anyway, today disability service person has shocked both my support workers due to her not listening to me.

    One of my workers said, the one from disability services had asked a ton of questions about things including what do I usually eat seeing she couldnt see this today (this must of been while I was being run home to get that list) and disabilitySA person expects me not to eat chocolate!! and wasnt listening to my support worker at all when she said I only eat sugar free chocolate and hence why we go to the other shop.

    Basically DisabilitySA picked at what I eat (she was nit picking the stuff she was told that I buy due to the fact I need to go to different shops to cater for my special diet). My other worker to that said when she heard from my other worker what disability services person had said, she said "that's discrimination".. they have no right to be dictating what you can eat, you should be allowed to have suitable treats!!". "They have no right to expect you not to have chocolate". They thought it was terribly that disability services are trying to get me to modify my diet so to not have to give me the support.

    My worker Jenine, said she felt like everything she was telling the person from the disabiity services, was going over her head, anyway, today both of my support workers were left shocked I went listened too (and even what they said was ignored).

    One thing which was good which did come out today, was I got to see how my new support worker Jenny thinks about things and found she was very supportive. (till now I'd been unsure about her as she doesnt say much and I had no idea how she thought about my health stuff till now, she's yet to see me collapse).
     
    Last edited: Aug 19, 2014
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  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Is the doctor you will be seeing in the autonomic section where the nasty nurse is?

    Even if he is, she might not be working at the time you are there. Maybe she is not working there at all now.
     
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Now you have witnesses. :D

    This makes no sense to me. How can modifying your diet allow them to not give you support? :confused:
    Not to mention that your doctor should be determining your diet, not somebody from DisabilitySA. :grumpy:
     
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  12. taniaaust1

    taniaaust1

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    The fact I have support worker witnesses doesnt help much as they arent allowed to speak out to anyone on a client so cant put anything in writing or say anything, they have to get permission throu their agency before they can do anything like that and I doubt that would be given (they are seen as an extention of the agency they work for). Other of my support workers have wanted to help me before but the "rules" which stop them from being able to do so, to do so, it could get them into huge trouble or even cause them to loose their jobs.

    Golden tried to help me with something in past few days but ran into the Australia stuff and "rules" while trying to do so. Golden couldnt even find out for me what kind of services a place could possibly give! due to "rules". They wouldnt even give golden the info and said I'd have to have appointment with them, just to find out what they could do. (which org was that, I cant remember now but one Golden had suggested).

    Even thou this org didnt know me at all or hold any of my info, Golden wasnt allowed to discuss me with them and get any kind of answers (she was trying to find out for me if this org could maybe help me in any way). She couldnt find out anything eg if they possibly could help with gardening or whatever.
     
    Last edited: Aug 19, 2014
  13. taniaaust1

    taniaaust1

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    They think that if I only shop in one place, I can quickly shop. Right now I get my Grocery things due to my dietary needs, chemical issues etc etc from 5 different places (but they are all within the same quite small shopping mall thou so in a normal situation, that would be no big deal) (this isnt including post office or chemist but just groceries). They are really nit picking as my worker said.

    Im sure the women will do a highly critical report on my support workers.

    ps I just remember the disabilitySa persons name, its Kerry.
     
    Last edited: Aug 19, 2014
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  14. Indigophoton

    Indigophoton

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    I may have lost track, but if we are still talking about the kind that plug into the mains, then using a simple mains timer together with the door bell thing would do the trick. The most basic timers - same times set every day of the week - are available on ebay Oz for about AUS$7, and are very easy to set.

    The ones that allow different time settings for different days (might be relevant if weekends are different to weekdays for you, for instance) cost a little more (just search for mains timer to see what they've got).

    It's the sort of thing you could almost certainly find in a general, or department, or hardware store, if you didn't want to shop online.
     
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  15. golden

    golden Senior Member

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    Sorry for rambling about T.V. Licenses!

    I do have a T.V. Currently and the t.v. License gets paid - but i wanted to get rid of the T.V.

    However the T.V. License company starts really hassling people who stop paying their t.v. License and not believing you dont have a T.V. And so wants to start seaching your house for a T.V.

    And I can do without that hassle.

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

    Yes, its really difficult to stay on top of companies and bills, and when things slide much harder. Crash in the middle of correspondence and matter gets closed...we lose money, benefits, support etc.
     
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  16. golden

    golden Senior Member

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  17. golden

    golden Senior Member

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    ^^^

    Yes, I have searched many, many hours. And contacted a few places in search of

    *Charity Organizations that assist with physical support.

    Edit: I have removed the name of the one I think may be able to help, as I dont want to ruin chances of getting it.

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

    Due to strict Australian privacy laws, the co-ordinator is refusing to discuss an individusl case with me, even though it is anonymous, and I have explained full permission is granted and the reasons why it would be essential to have some idea of what they do and how they can help due to severe energy limitations.

    However, I do get the impression that there is a willingness to assist and find suitably experienced volunteers and the

    'time that would be needed to make a significant difference to this lady'.

    They have a good idea of what is being asked for, and they havent said No, or thats too complex.

    However how many times have we all been through an assessment process of some sort or another and run into endless hitches and rejections!

    NO!! To that.


    And @T1 you do need to preserve and protect your energy. I must say I wanted to make things easier for you. And I am concerned that allvthis is doing is triggering past traumatic experiences of organisstions which were supposed to help but didnt.

    So what I wondered, if it may be possible to try, is to email your Counsellor the correspondence so far, and

    1) Might she, as a professional, have any knowledge or feedback of this Charity f being any use. A solid recommendation is very valuable.

    Or perhaps she knows of other Charities in fact offering physical/material aid.

    2) Could she email or telephone her, as your professional advocate, and see if the assessment can take place that way - through her- perhaps she could even fax over ur Doctors letter strongky worded in your favour for more support. ????

    Perhaps this isnt usually the job of a Counsellor, of course, its just that things are so dire and so lacking in support that a bit of out the box thinking may relieve the situation a little as we are all rather mired in rules.

    For example, my Perrin Technique Practitioner actually did a couple of terriffic letters for me explaining about M.E. Being a genuine physical disability etc.

    And this really helped things chug
    through the system.
     
    Last edited: Aug 19, 2014
  18. golden

    golden Senior Member

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    RE: Disability Assessment

    It is out of order, wearing perfume (amongst other things she did!)

    I dont think these professionals understand the serious nature of their error. But they should know that this can put you in hospital.

    Just as you wouldnt go into operating theatre without appropriate preperations, or you dont smoke in no smoking zones, one should not be wearing chemical perfume around a Chemically sensitive and disabled person.

    I recall such a Disability Manager come to my home to look at issues with my Mums poor terminal Cancer Care.

    There was my Mother, me and several professionals in the room.

    I was burning a tibetan incense. Now, this Disability Manager was onky in the room a short while when her airway started to close up , she and most of the other professionals went out to assist her with her breathing and severe allergic reaction. We were all fine.

    Some people are Ok with perfume chemicals, others are not. How awful for professionals not to adhere to requests of no perfume. Maybe they go blowing cigarette smoke into childrens faces in their spare time too!
     
  19. zzz

    zzz Senior Member

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    According to the product description, the doorbell sends a wireless signal to the receiver only when it is pressed, which is the sensible thing to do. At all other times, there is no wireless transmission. And whether you set it to sound or light makes no difference. So a mains timer is not necessary. The situation is very different from your electric blanket, which is very close to you. The strength of EMFs falls off as the square of the transmitter's distance to you.

    Unplugging the receiver would make no difference, as the doorbell would still transmit. But again, it transmits only when the doorbell is pressed. Compare that to radio and TV signals, which are just a different frequency of EMF, and are passing through you all the time. But radio and TV signals are low frequency, which means low energy, which is why we all don't get fried. Wireless transmitters operate at just a slightly higher frequency. Visible light is actually a form of EMF that is of much higher frequency than any of these. But its intensity is rather low, unless you're out in the sun a lot, in which case you can get sunburned, which is a form of EMF damage.

    Your wireless printer also shouldn't give you a problem, as these devices also use a weak, low-frequency signal.

    Tania, it is really heartbreaking to hear what you are going through. I notice that someone has already brought up Franz Kafka's name in relation to your situation; I think that even Kafka would be shocked. This whole situation reminds me of a quote by Gandhi. When Gandhi arrived in the West for the first time, the press asked him, "Mr. Gandhi, what do you think of Western civilization?" To which Gandhi replied, "I think it would be a good idea."

    The writer Harlan Ellison once remarked, "The two most common things in the universe are hydrogen and stupidity." The people you are dealing with certainly bear this out. Most of them are simply incapable of understanding your situation. Keeping that in mind may help a little bit. Like everyone else here, I wish there were more I could do for you, but you should at least know that my prayers are with you too.
     
    Last edited: Aug 19, 2014
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  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I don't know how the legal system works there, but here a court could require them to testify. I realize that it would be nice if they were allowed to help in less extreme circumstances.
     
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