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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. taniaaust1

    taniaaust1

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    Actually the support agency did screw up today but it was another error in my favour. My new coordinator accidently booked my two workers for an extra half hour so I got an extra hours help all up today. (this still didnt get my floors washed or help with meals, we used all the time just to do my dishes and take me shopping. My floors thou due to this did get vaccummed for once, thou they still look very dirty as they need a wash).

    Seems its the only way I kind of get my floors ever worked on, when the agency screws up and accidently gives me more time (their mistake so they cant really dock my other support time for it).
     
  2. golden

    golden Senior Member

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    They need to be hoovering your floors as the air quality goes worse. Giving you worse health.

    I know you know this, I am just telling them!!!!
     
  3. golden

    golden Senior Member

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    Yeah. I thought i would never go back. Especially once i started feeling better and the embarrassment kicked in. But I have been there once. I have complained verbally I am writing to head office.

    When I was in the store with my feet up on their display conservatory suite munching away at my snack and drinking water - i said to the staff...

    'I'm not in my Living Room you know' :)


    The heat has badly effected me these last two days - i just cant imagine it over where you live :(

    I have never had a situation like this before happen to me. In the past I hsve always managed to be discreet. This circus that happened - well !

    I must say I was shocked by the outpouring of offers from customers who looked genuinely caring . Really never known anything like that before. Ever.
    (But just wanted to be left aline and get home).

    Hero Customer who took me home usually ferries disabled folk on their weekly shopping trips and he said he constantly has to complain - weekly- as they are very poor

    He said i should have been offered the first aid room, the designated first aider...and/or ambulance.

    Maybe your supermarket could do something to help you more.... I dont know what that could be....

    I didnt know this is supermarket policy i think. He said.
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    A teaspoonful of liquid paraffin can help a constipated cat. Make sure you use the medicinal type.
     
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  5. AndyPandy

    AndyPandy Making the most of it

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    Hi @taniaaust1

    Haven't seen you on PR for a few days. Hope you are OK.

    Best wishes Andy
     
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  6. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @AndyPandy OMG, earlier today I was thinking about Tania, too, and that she hasn't been on the board in a few days. I was going to post something but you beat me to it! Great minds think alike and Tania, please let us know if you are okay!
     
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  7. taniaaust1

    taniaaust1

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    I know that too, Ive been getting asthma attacks in the middle of the night for the first time in my whole life since Ive been in this house with its lack of cleaning, dust and dirt. I didnt even have an asthma diagnoses at all before I moved here, crashed and then couldnt do floors.

    So I could say the disability service seems to be responsible for that new issue Ive got too.
     
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  8. taniaaust1

    taniaaust1

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    I only get taken shopping now in the wheelchair so that embarrassing supermarket circus one could say has stopped. The supermarkets Ive collapsed in have always been great eg given me free drinks, closed off isles, keep others away from me etc (they provided like a person till Ive recovered enough to move).

    "Hero Customer who took me home usually ferries disabled folk on their weekly shopping trips"

    Ive had off work carers of others came to my aid too in such situations, offering support.

    I also had a bad new carer one time who wasnt listening to me at all (and had taken me outside in the heat rather then throu the cooler shop and then wouldnt stop, I'd actually grabbed a sign post to try to get her to stop in the end), and a carer I didnt know came to my aid over what this other was doing to me.

    As far as heat goes here, it is Winter right now in Australia. So actually this is my BEST TIME OF THE YEAR, knowing this is so so scary, what is Summer going to bring for me?. (I certainly have to choose a cool suit before then that ones at this site have helped raise funds. thanks).
     
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  9. taniaaust1

    taniaaust1

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    Thanks, that is very handy to know.
    ......................

    I loose this kitty probably next Monday. The cat rescue place I foster her for, seeing she had an issue wants to take her back for a medical checkup (she's due for anyway). In her place I'll be receiving another cat. Its going to be sad as I know I will miss her (she sleeps with me) but I wont have another cat myself and will only foster so I can hand cats back if Im completely bedridden for a while. One of my past cats died when I got bedridden and completely unable to care for it (or myself) so I'll never have a permanent cat here again.
     
  10. taniaaust1

    taniaaust1

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    Yes, Ive just been struggling to keep up with things so cut back on PR too for a few days rest.
     
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  11. taniaaust1

    taniaaust1

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    Yesterday I used my energy/health doing phone calls on what is supposed to be my rest day, so couldnt come here.

    Yesterday I spoke to my advocate again, I'd rang her the week before last? and she'd told me she didnt know what was going on with DisabilitySA so had no answers yet for me and told me to give it another week so I then was expecting her to ring back a week later but that week came and went without a phone call to let me know what was going on, so I was having to try to ring her again for answers.

    When I finally got hold of her this time (I think I rang and left message the other day too???) she said she hadnt rung me as there was nothing to report. She hang up on me again just as I was about to ask her something else (I dont know if its how she hangs up but she never used to hang up this fast so Im thinking she doesnt really want to be speaking to me (I dont think my advocate likes me due to the pressure Ive been putting onto her cause Im so desperately need this all sorted out).

    She said she'd sent an email to DisabilitySA when we last spoke but they havent responded back to it at all. So after yesterdays phone call, she was going to send another email saying she's awaiting their response. (Seems they are starting to ignore her too! I guess its harder for them to lie to my advocate and keep making up excuses).

    The last big excuse DisabilitySA gave me was a couple of months or so ago when they said they were about to have a big meeting to discuss my case, that meeting would of long ago came and gone. Next they were saying they wanted more info from my CFS specialist even thou he hasnt seem me enough to give a detailed report to them and he suggested to get their physio to report. to which she did with a long verbal phone call back to them and they ignored her (my CFS specialsit saw me about 20 mins in the past 18mths).

    Next they said they couldnt contact him as they didnt have his address (he'd moved). Now they are still trying to get him to do a report on me even thou I cant get back to him and my advocate isnt listening to me at all when I tell her he wont even be able to do the report due to not having to had seen me enough due to the lack of help Im getting to get to appointments. This whole thing is just further delaying how long it takes for me to get the support Im needing and none of those gov depts at all are listening to sense.

    JUST GET ME TO ALL MY MEDICAL APPOINTMENTS IF YOU EXPECT DOCTORS TO BE ABLE TO GIVE YOU DETAILED REPORTS ON MY CONDITION!!! more then a simple report from my CFS specialist (but one which I think should of been more then enough for me to have been granted support for more then just having Aspergers), "she cant walk more then a few steps and is having to use a wheelchair" (how hard is that to understand that doctors cant give detailed reports unless they are seeing me and seeing me enough to be able to do so!!!).

    The lack of brains in the states disability dept is astounding (all I assume due to their preconcieved notions that ME/CFS is "fatigue").
    .............................................................................................................

    Yesterday I rang the Equal opportunity commission as no one there didnt ring me back either (I think was a couple of weeks ago? I left a message there with someone to get the one dealing with me to ring back). They were waiting on a response of mine to a letter but the ones who did the letter say I no longer need to do the response (and so my advocate wont help me with it).

    I still really want to be responding to letters from the other gov agency esp when they have things wrong but they also wont allow me to respond by phone and doing all these letters myself is just way to much for me. So I need to tell the EOC that they wont be getting that response they were waiting on as the others say they no longer want it. The person dealing with me now at the EOC is apparently called Robyn (but I always seem to have bad timing when I ring and she's not available or away that day, I got told she'd be back in a couple of days, Friday).
    .................................................................................................

    Yesterday I rang the Legal Services Commission to see if they had list of lawyers who could take my case on. They didnt and told me to ring "Justice Net" (ph8313 5005) (justicenet has a website too apparently) but on speaking to me further also then said to ring the Law society (ph 8229 0222) to ask for a suitable Pro Bona lawyer.

    The person from the Legal Services Commission on hearing of my situation, said my case is a "personal injury" case (seeing Ive been made far sicker thou neglect of Disability services) and hence I should be looking for a personal injury lawyer who does no win no fee and said that many of those do.

    So I then yesterday rang the Law Society to ask who is closest lawyer to me which does that, only to be told by them that they do not have a list of lawyers who do that, so they told me to go throu the yellow pages. ***sighs*** why is everything so hard. Anyway, due to putting so much effort onto trying to sort out the mess, I wasnt up to coming to PR till today. (its sucks how much all this impacts upon me and completely drains me!).

    Anyway, I'll continue trying to follow up on these things on the next day Im feeling up to dealing with it all.
     
    Last edited: Jul 23, 2014
  12. taniaaust1

    taniaaust1

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    Today I got in the mail a mystery bill from SA Pathology. This is so weird, its for two lots of blood tests with a service date 5th July and has a doctors name on it I dont know. The only blood tests Ive had done in recent times has been when Ive been admitted to hospital. (As a disability pensioner, I dont pay for hospital blood tests).

    So Im a little stressed over this strange bill right now, I guess its just a mistake? (I know our gov has a thing which limits the amount of blood tests one can have (in a year? or in a several month period?) before having to pay but have no idea if hospital drs come under those rules). The hospital always want to take blood when they admit me after collapse.

    So something else I now have to ring and get sorted out. I'll be not happy if Im now having to pay for regular blood tests I need eg to check on my kidneys and that (my kidneys showed issue last year), after I collapse.
    .............

    My allergist (and insulin specialist) who did that letter which I thought was done in a strange tone (the do not see me again till you have had blood tests! thing), I rang him upset the other day over still not being able to get to somewhere to have blood test done. (I also found out that one can not arrange for this to be done at home without a backing dr to have them done at home!! the path people expect that). So he's now arranging for me to get these done at home.

    So I guess that is one step in the right direction if at least I can get my blood tests I need done done. (I still think I have something from last year too I didnt get done due to the difficulties getting to blood taking places as I had fasting tests and non fasting tests and I think last year I got one of those last lots of tests done.. so I need to find those too I guess and see what can be arranged there too if they are different tests from the other doctor).
    .....................................................................................................

    Today Im going to have to use up half of todays support time to take a very cheap DVD player I brought back as it isnt working right (I keep having to get out of bed to turn it on and off as it kepts stopping working and wont fix with the remote, that and the sound while watching it, suddenly goes up on high!). Looks like I may have to get one in the next price range. It sucks when one is buying as cheap as possible due to finances but then the cheap stuff just dont work properly and causes issues. (My last very cheap one lasted 2-3 years).

    Im taking it day by day here. I just wish there wasnt always issues.
     
    Last edited: Jul 24, 2014
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  13. taniaaust1

    taniaaust1

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    Update

    Im finding it hard to type right now, Im shaking due to way too much adrenaline.

    Robyn from the Equal Opportunity Commission just rang me back. She spoke about the next step would be to arrange a reconcilliation meeting between me, them and the state disability service but said if the state service didnt agree to give me more support, there would be nothing they could do.

    So I personally dont see a point, Ive already had reconcilliation meeting with them with my advocate and it made no difference and others in the past, and at this point it isnt going to do anything at all about all the harm to my health which has already been done re the states service not providing for my support needs.

    She said the disability service has helped me (it came across to me that she was implying as they have done the following, they cant be discriminating against me) as I now have a shower chair (thank you physio!!!) and also now have a wheelchair ramp (thank you advocate who really pushed that!). (she came across to me as if I should be grateful for that, to me thou they are very very minor things. I cant even push my wheelchair thou my house due to boxes still not unpacked!!). She also said I had more support (to which I corrected her and said that is not so at all!!. Where did she get that idea from? has disability service lied to the EOC?).

    She said the disability service doesnt have the funds to give support to everything a person wants. I find that ridiculous comment as all Im asking for is very basic care needs met eg not to be missing meals due to not having the support, being able to get the medical care I need etc. These are normal basic human NEEDS not wants! Everyone should have a right to be able to receive the medical care they need!

    So at that point I clearly said that I are not interested in yet another reconcilliation meeting after this has gone on for so long and already due to the length of time very damaged my health further so I told her I want it to go to court. No reconcilliation meeting is going to be able to provide me some compensation at this point for my damaged health.

    A reconcilliation meeting they wouldnt have to change what they are doing to me .. she said this. (I wish that other guy was still dealing with my case at EOC, this new person obviously doesnt truely understand just how diabilitated and just how badly things are for me without getting suitable support, she doesnt understand this is ruining my health further.

    She said something along the lines that I may just need to adapt to living how I are now. OMG, I cant believe someone at the equal opportunity commission said that. I know if I had another severe illness causing the level of disability my current level is at, I WOULD certainly be getting the help Im needing.

    The equal opportunity commission dont do reconcillation meetings in someones home either so this would mean that I would have to get there (into the city I guess too), something I cant currently do. So this would mean that I'd have to join the meeting on phone (and Im not good with phones) and would have to have my advocate (who doesnt at all understand ME/CFS talking there for me). The whole meeting situation just wont work well. Half a chance even IF I could get a ride, that being taken out for that meeting would put me into hospital.

    Its very irronic that the Equal opportunity commission doesnt cater well for disabled people who can hardly leave their homes and have some trouble with phones (the effort of holding concentration on phone makes me highly anxious and I struggle far more with my focus). I have far more trouble giving correct answers to questions on a phone (its hard enough for me to be giving replies face to face).

    The Equal opportunity commissioner person (Robyn) tried to then put me off of the idea of taking it to court ie told me how the gov dept would have a lot of legal support and told me I may not be able to get any!! She also said this would mean I would have to attend court... to which I replied something along the lines of their must be something for disabled people who cant get there! (to which she then said it was outside her dept or something along those lines). Her comments made me feel like she was trying to install fear into me so that I dont take it to court.

    I really got no choice at this point, disability services have already delayed me getting the support services I need and the longer this goes on, the sicker I become. I wish I'd said "NO RECONCILLATION" at the start of bringing my case to the attention of the EOC but I was worried that it would make me look unreasonable (thou even thou I KNEW disabilitySA would stick to their guns and not give me more support due to how ingrained biased they are about ME/CFS and me).

    So she's now said she'll refer my case on. She told me that if I go ahead with my court action that I will loose my public advocate as they arent allowed to offer support for those doing court cases. So it appears I wont be to keep on getting her to keep trying to deal with Disability services, while this procedes into the realms of court.

    She also said she'll be phoning my advocate and getting her to talk to me about this (I strongly assume what she meant is to try to get my advocate to talk me out of court action).

    This person is very nice but obviously very very doesnt get it and doesnt understand that I cant just go on with how things are now without that support (and why should I have to do that anyway, I should be reasonably supported by the state services and not completely unreasonably). I just want to be treated like ANYONE ELSE who has the level of disablity I have.

    Anyway.. its a crazy system here we have, one would think they would have my advocate keep trying to help me sort it out in the meantime. Unless this was another kind of mind game thing coming from a gov dept.. eg get me scared Im going to loose my advocate if I do this.

    At this point I dont feel like I can trust any of those gov people, too often Ive told wrong things by those biased against ME/CFS. Maybe all what she said isnt true, maybe it was all purposely said to try to make me not go to court??? Just like she told me I would have to go to the courts but then back tracked in what she said some when confronted what she said and I said something about there must be something for those who just cant!! or it wouldnt be an Equal opportunity situation for the severely disabled).
     
    Last edited: Jul 24, 2014
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  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    :thumbsup: We need to celebrate the small victories! :balloons: :hug:
     
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Maybe you should wait and see who she refers your case to. It might be someone more like the last person. If so, s/he might be able to get DisabilitySA to do their job much more quickly than a court case. In this country, court cases can drag on and on.
     
  16. taniaaust1

    taniaaust1

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    They drag on and on here too, she said it could take 1-2 years if I took it to court. Thing is had I done so when I seriously thought about it re the discrimination a year back, maybe it would of already been to court and maybe I'd now be getting the support Im needing. Taking it to court should force the disability service into looking into my illness (ME/CFS) properly as they are going to want to try to make sure I dont have any grounds to my case!

    She was refering to refering me onto another due to me wanting to take it to court. If I dont procede on that route, Im still with her and her section and with the way she is with no understanding, I know Im going to get nowhere as she's not going to say to the disability service, look you are doing the wrong thing here. The person she will be refering too, doesnt deal with concilliation (that's what her area is for), hence why I'll be loosing my advocate too (if she told me the corect thing)
     
    Last edited: Jul 26, 2014
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  17. taniaaust1

    taniaaust1

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    Yeah true. Im just sad it taken so terribly long and given me so much stress over (so much so I cant even celebrate this victory). Ive been not getting all blood tests Ive been refered to do at times for the past two years.

    Im just so tired from the battle of it all.

    I think once things are sorted all out (its impossible for me to believe it wont be as I believe in what is right must occur at some point!), at this point I actually think I wont even be excited. It will be just a sigh of relief and "Im glad that is all over!". I think I will feel like this at this point even if I get compensation for the neglect which has made me worst. Its just be too much of a hard battle.

    umm actually on further thought, I thought I would be happy about it. If I can win a court case, I will be happy to know this will make it far less likely for them to discriminate against others who have severe ME/CFS in future!!! I want no one else in this state to be treated like this. That would make me happy to know that, as for myself, too much has gone into this (but I really have no other choice).
     
    Last edited: Jul 26, 2014
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  18. taniaaust1

    taniaaust1

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    warning, some may find the below post disturbing.

    Ive been having a very bad day (Ive been trying to distract myself from just how terribly sad I are by focusing here). Today due to my brain issues, I killed my pet frogs so have spent a lot of today crying my eyes out. I loved watching those frogs, I would spend about an hour a day watching them. I'd had them since tabpoles. I always talk to them whenever Im in my kitchen (now its like a huge lonliness has engulfed my house with knowing they are gone and I feel so terrible knowing they must of gone throu hell before they died).

    I put them in their tank out in the garden, planning only to have them there for a short time to give them some light outside but then cause of my memory issues, forgot about them. **im bawling as I type this** . I remembered them hours later and by that time they had like cooked out there, their bodies were already stiff and contracted as if they'd had seizures and they were stuck to the glass where they'd tried to get out from the heat (this image is going to haunt me forever). Im hurting intensely emotionally over this, I loved my frogs.

    This is impacting me even more as it brings back to me too strongly the cat which died 16? years back when I was completely bedridden in the past and not able to care for it (in a near ME comatose state much of the time, I couldnt even look after my two young children). I thou loved the frogs as much as my cat. a pet is a pet, I love my pets. Im simply too sick thou to be looking after pets but I hate living alone. I cant bear after this to get another pet frog. It so very hurts.

    More emotional pain Im going to have to try to bury due to this illness. (I so wish I could have some counselling for all the issues this illness is causing me). Ive strongly thought of ringing lifeline today as Im feeling so upset about it but I wont as one often cant get throu to them and it uses too much of my energy if Im getting up and down to keep trying to call on the home phone. (its crazy, we are too sick to use the normal services for feeling very distressed).

    I guess I will have to ring ambulance if I feel too close to suicidal over this. I so darn hate this illness and what it does!!
    .........

    Last night I tried cooking and as per normal ruined it, wrecked a roast (which was expensive). I cried over that too as Im really trying to watch my money currently and all the wasted food gets to me. So I ended up buying junk food (which not only is expensive) but which makes me not as well too as I wasnt going to attempt to cook dinner again. (Ive gone up 2 sizes in the past year due to having to buy takeaways I shouldnt be eatting or miss meals).
    .............

    Im trying soo very hard not to think about myself and my issues right now but my brain issues is making things so hellish for me! I used to think unrelenting ME pain was the worst symptom of this illness but now I dont know, right now I feel like the pain of the issues my brain causes is on par with that other symptom.
     
    Last edited: Jul 26, 2014
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Sorry, I must have brain fog. :alien: I thought she was going to refer you to someone else if you didn't go to court and drop you altogether if you did. I would ask the advocate if and when you will be losing her. I wouldn't depend on that other woman to be correct.
     
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  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Oh, Tania, I am so sorry about your frogs. :hug:
     
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