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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. brenda

    brenda Senior Member

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    I don't know if you can them in Australia (you would think so) but l use 'stay fresh' bags in the fridge for vegetables and everything else goes into the freezer like leftovers especially meat. I only shop once a week and never have to throw any thing out. Maybe we can help sort out a shopping list and menu list for the week? It is more boring than eating what you fancy but it makes life easier and will save money.
     
  2. taniaaust1

    taniaaust1

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    Nope.. i didnt get to that appointment and didnt get the food!!! I got let down again so was very glad I kept that half rotten food.

    My family isnt really close enough for me to feel able to do that. On top of that.. My sisters have been also struggling with their money too.. 2 of them already have filed with the Salvation Army for a xmas food hamper this year and presents for their children. (Id think of doing that too if it was going to help me but due to my diet I need to be on.. I cant eat much at all in their xmas hampers and had to give away most (90%) of the stuff from them in previous years when the Salvos brought me one.. I'd probably just score some turkey or some ham I can eat).

    I rang gardeners who do weeding recently and they are changing $50 an hour or more .
     
    Last edited: Dec 4, 2013
  3. taniaaust1

    taniaaust1

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    I got an all over sore head right now Im trying to ignore. There is broken glass all over my kitchen floor right now due to my attempts to clean up a bit before my support worker gets here today **sighs**. I tried stepping over it and ended up with glass in my foot again. (I had a spasm while trying to put something in my cupboard and hence then ended up knocking out a large flower vase which shattered everywhere..things arent even safe from me away in my cupboards)

    I have also right now cat vomit all over my toilet floor from hairballs. Having a cat here does help my emotional state but Im currently struggling some to look after it. (I keep forgetting to feed it, fortunately it cries till I become aware of what is wrong).

    The state of my place is so bad that Im actually feeling embarrassed about the support worker arriving here today.

    Ive had to stop as I just with breaking things due to poor ability to judge things today, I was making more mess then I was fixing and at risk of falling on the glass if trying to clean it up. Im also going to be taken to see a cousin who I havent seen in about 7 years after my support worker leaves (and if I kept on doing things today I would not be able to be taken to go and see my cousin who has flown over from WA as it is..right now Im quite unwell..nausea is happening right now too). My sister actually offered to take me to see her (she was of cause going herself to see her but usually she wouldnt have told me or taken me too).

    Im very interested in seeing that cousin as its my cousin who has ME (who lost her scholourship at the Institute of Sport and ended up on disability pension at the age of 18) and Im very eager to find out how she's doing nowdays and if she's recovered enough to be able to work etc

    Ive spoke to the physio on phone on Monday and have been told I should be getting the wheelchair delivered this week.
     
    Last edited: Dec 4, 2013
    Valentijn likes this.
  4. taniaaust1

    taniaaust1

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    Golden.. fortunately I had some tomatoes growing outside (thou I cant eat much of those as they count as fruit as far as my carbs go) and also some garlic.. (Id planted garlic all over the garden to keep away aphids).

    I wish I could get things together so I could at least plant some more things to then just leave to their own devices for when im in situations like I was in last week and the week before. Right now my yard is terribly overgrown and I cant even turn the sprinker on (I have a timer on it as I forget it) as it will just make things worst out there.
     
  5. taniaaust1

    taniaaust1

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    Things still hellish for me as I dont have enough support due to state disabilities dept lack of understanding over ME/CS.

    I FINALLY have my wheelchair but when it got brought out to me and I was shown how to use it but I couldnt get the hang of putting the special foot up support part in (it has special leg raised supports due to my POTS). The lady went over it with me then trying to repeat how to do it, over and over and over again... till I was completely exhausted and my brain wasnt working at all (and I think she was feeling frustrated too at my lack of being able to do it). I just couldnt hold the info in on how to put the parts together. She ended up saying she needs to get the physio out to teach me how to get it together. :( I didnt realise that would be so hard for me to learn (and once Ive got the hang of doing it, I need to not forget).

    DisabilitySA is the nightmare it always is, due to its policies etc which arent suitable for me.. eg the one where I need to be out of bed and helping when i have support here, once again due to that policy, I ended up badly crashed (hence why I havent been here in 2-3 days.. wasnt well enough).

    I was supposed to have a financial appointment which DisabilitySA had sorted out getting me to.. (Helene told me to go there even thou I told her I've already had financial counselling in the past and they said there was nothing they could do as my weekly costs due to my medical issues exceed my weekly disability income). How I was going to get to the appointment was sorted out only the day before the actual appointment, sooo stressful as I thought once again it was going to be an appointment I was going to have to cancel.

    The financial people said they didnt do phone appointments when I'd said I was basically homebound and it was very hard for me to get there. The morning of the appointment (90mins before I was due there), I got a text message from the financial place saying the person I was booked in to see was sick so they were cancelling my appointment was that okay? I responded back "no, not at all!!" (afterall it had taken nearly 3 weeks to work out how I was going to get to that one, with DisabilitySA having to do a contract for it so an agency could take me.. my normal agency couldnt so I then another agency had to be found to do it etc). All the financial counsellors where full so they couldnt squeeze me in with anyone else... so now they've said they will do a phone appointment ***sighs..they would of helped me sooo much if they've done that in the first place when I told them I didnt know how I'd get there due to my disability***

    So then then I had to ring DisabilitySA (helene) to let her know appointment had been cancelled and to ask her to ring the new agency to tell them so they could tell the worker who was probably already on her way to my place by that time. She ended up as the contract was already throu to agency for this.. saying I could keep the time and then proceded to tell me I should use it to go out to a coffee shop with the worker or get the worker to take me down to the beach so I could destress over it all (as I was crying due to the cancellation as its a nightmare getting help from DisabilitySA to get to places).

    Sighs.. she didnt seem to understand at all that I was desperately needing the time for house things even thou I keep on telling her over and over that Im not getting enough home support. Floors hadnt been all washed for probably 2 mths etc.. I wasnt about to head to the beach (as much as I would of loved to been able to do that) when I had a rare opportunity to get my discusting floors washed. (I think its discusting that I only get to get my floors all washed every 2-3 mths esp since Im always dropping things on the floor due to my clumbsiness and falling.. I end up spending time on the floor due to falls so want that area clean).

    Anyway.. due to the extra support time I had to that.. I ended getting my floors all washed on 13th Dec (I'm noting that date down as I wonder how long it will be till they get all that again) and also where I'd put up the blinds finally in my bedroom the other week, I still had sticky tape marks all over the window where the alfoil had previously been stuck so I got the worker to get all that off my bedroom window too.

    Being a new worker from a new agency that I are hoping to get transfered over to to get away from the completely non understanding very bad with MCS other agency (this new agency apparently has someone else who has MCS too so they are far more likely to be more understanding of some of the issues Ive been having), I for the very first time sat down and had a hot drink with the support worker (at home). She thought DisabilitySA and my normal support agency are being ridiculous when I told her what was going on with things, she could see just how dirty my floors were etc.

    By the time she did the floors, had a hot drink with me to help me wind down from the stress DisabilitySA causes me, washed my extremely yucky bathroom basin, cleared all the sticky tape marks off the window.. my time with her was up (bath was still dirty). She also took me down to the drs to drop off some medical results which were sent to me which my GP didnt have. By then we'd completely used the 2.5hrs worth of support time which was meant to have taken me to the appointment.

    I was very stressed out as I knew I'd be really needing to rest after that 2.5hrs of support (I usually dont go over 2hrs as I know Im at risk of crashing after that) and had another support worker coming an hour later at my normal time for a further 2hrs... DisabilitySA if I cancelled it would be saying that I cant complain that Im not getting enough support hours when Im cancelling things (Im currently fighting to get the hours back still which I loose thou no fault of my own if they are missed and the month rolls over to the next month).

    I went against DisabilitySA policy and spent the first hour of the second support person in bed but then due to Helene only the day before, once again going to me on the phone that it is there policy that their clients are up helping the support workers and that I must do that unless Im actually sick at the time ... even when I explain to her that the ME dont hit me if Im overdoing it till later so hence I need to manage the condition and rest before I get very sick (Helene completely ignores that)... So then got up.. all I could do thou is sit in a chair.. the worker several times asked me to do something when I very briefly got up for a few seconds so I had to say a couple of times that I wasnt well enough (it gives new workers a false impression that Im weller then I are if Im being forced to be out of bed due to DisabilitySA policy.. when I really should be in bed resting).

    Due to all this ..of cause I crashed the next day which left me extremely distressed as my sister for once had offered to take me somewhere and I'd been really looking forward to doing that for days but now I was far too sick to be going anywhere. (She was going to take me back to my old country town where she going, to watch the country xmas pagent). The plan was for me to stay at her house so I could be picked up on Monday to be driven home (which my elderly friend was going to do). Note.. this would of only been the second time in 1 year in which I've gotten to go to my sisters house, it would of been the first parade in 4-5 years I would of gotten to go to as I usually got no one to take me... Anyway.. due to DisabilitySA "policy" which is completely not sensible and not in line with this illness.. I ended up far too sick and ended up having to cancel out on taking my sisters rare offer up. (so then spent some of Friday in tears over that). I feel like I really hate DisabilitySA and their policy as its sooo ridiculous when it comes to this illness and the way it needs to be managed!!.

    ohh.. and the other day when I couldnt get to the financial appointment (before it was arranged as she knew I wouldnt get here otherwise).. . Helene (DisabilitySA) had me in tears as she was trying to get me to catch a taxi there while wearing a mask (I'd need to buy a charcol one) and as I said, i'd have to wear goggles too as my eyes get affected by air fresheners too)... she stupidly replied to my MCS eye issue "just wear sunglasses".... oh yeah sure, how are they going to block chemical vapours.

    She didnt at all consider either my issue with collapsing at any time ..another reason why I cant leave my house alone. (and she's the one who's supposed to be my case manager..she dont understand a thing about my issues and just isnt listening). It's like Im speaking to a brick wall.
    ....................

    oh and on Friday after having to push too hard on the Thursday due to DisabilitySA policy of me being out of bed while workers there.. some of Friday due to this.. the effect of it was., was left completely unable to walk.

    My elderly boyfriend was over to help and due to his age, he's now struggling to support me if Im trying to just walk a few metres when Im in this state (I have no balance at all when like this and I was feeling too weak to even crawl). While trying to support me to get to one place to another in my house, he ended up lost grip of me and I ended up having a fall due to it (he said Im now too heavy for him)..so have another bruise. (I already the day before got a sore on my upper leg, I'd lost balance after all that Thursday support which I had to be up for and fell into something with a corner.. taking skin off my leg and making the area bleed.. so then had a bruise to add to that).

    He then got my new wheelchair and helped me onto that, but cause I still have boxes from the house move which are still not unpacked.. he couldnt get me up the hallway in the wheelchair back to bed.. So I ended up for ages laying very uncomfortably in a non reclining back wheelchair at the start of my hallway as he didnt know what else to do with me (as I wasnt well enough to be sitting). (Note the contract is now in place for me to get unpacking support but my hopeless support agency never has a space worker for me to be able to use the support).

    Saturday.. I had another rare family offer.. my daughter who has been telling me for about 10-12 weeks that she'll sometime take me to my nannas place (I dont have a sewing machine and I have a lot of mending to do and hope to use my nannas machine etc nice to see her too, she's quite elderly).. offered to take me actually take me to my Nannas..but being still too sick from having to over do things on Thursday.. I had to say no Im too sick to go.

    (today... sunday..is the first day that Ive been okay since Thursday). I cant seem to get throu the Helene and DisabilitySA how making me overdo things on one day, makes things hellish for me for days or longer. Over doing something by 1 or 2 hrs (or even less if I'd needed to stop).. can make me unable to do things for days. I should never have to push myself to the point where Im getting the after affect of being left not being able to walk from one room to the next the next day. If there is anyone out there reading this.. I really really need some help at getting throu to my states Disability service (DisabilitySA .. the Sth Australian Disablity service) about the needs of ME/CFS people and myself.

    Is there someone high up in ME/CFS Australia who could help me as far as DisabilitySA goes? (ME/CFS SA society, everyone is sick there or not interested in helping someone deal with the state dept. and hence Ive never really got much help with dealing with our states disability service). The policy of DisabilitySA is discrimatory when it doesnt take in account of the illness we have and our need to rest when we need to (when we know we have to to avoid a crash). Please, please can someone out there help.... Im getting sicker.. collapsing more and more easily due to this situation of lack of understanding of ME/CFS and hence how Im being treated.
     
    Last edited: Dec 14, 2013
  6. AndyPandy

    AndyPandy Making the most of it

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    Hi Tania

    Sorry to hear about your struggles. Here are a few ideas.

    I think it would be good to get someone to advocate on your behalf with Disability SA regarding their home services policy which does not seem to make allowances for the specific disabling features of ME/CFS. Hopefully, having an advocate means less stress for you. They will focus on the facts and take the emotion out of it in dealing with the various organisations. This is very important to a good outcome. They will hopefully be able to deal with Disability SA directly and get a copy of the policy to see if it is being implemented correctly and if there is any scope for flexibility in your case. If they don't know what ME/CFS is, then direct them to the SA ME/CFS Society as a starting point.

    These organisations might be able to help with advocacy:

    Disability Advocacy and Complaints Service of SA Inc, 82973500, www.dacssa.org.au
    Disability Advocacy and Crisis Intervention Alliance, 83317067
    Disability Discrimination Service, 83421800, www.unitingcommunities.org.au

    If there is no satisfactory response, the next step would be to contact relevant politicians:
    The Minister for Disabilities, Tony Piccolo MP, 82260322, DSCI.MinisterPiccolo@dsci.sa.gov.au
    The Shadow Minister for Disabilities, Rob Lucas, MLC, 82050255 (can put political pressure on the Minister)
    The Minister's Disability Advisory Council, 84154250, dsci.disabilitysa@dcsi.sa.gov.au (includes people with disabilities and advises the Minister)

    Also the Australian Human Rights Commission, www.humanrights.gov.au. This is the Commonwealth body which administers the Disability Discrimination Act 1992. Section 24 of the Act relates to discrimination in the provision of services.

    I suggest you get the advocate to start with Disability SA first and correspond in writing only.

    If it were me, I would wait until the end of January to start this. You are unlikely to get quality assistance until after the holidays and you don't want your complaint to get "stale" over the break.

    FYI I used to live in SA. I wish I could help you further but I am not well enough. Sending you love and encouragement.
     
    aimossy and taniaaust1 like this.
  7. taniaaust1

    taniaaust1

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    Thanks Andy.

    " If they don't know what ME/CFS is, then direct them to the SA ME/CFS Society as a starting point"

    Thanks for that comment, that has helped me to see where Im going wrong with trying to deal with the Disability Advocacy and Complaints place you mentioned.

    I contacted them some time ago (Ive contacted them a few times over the years begging for help and in the past they ended up saying there was nothing they could do (this was back when DisabilitySA wasnt taking me on a client and kept rejecting me).. they didnt even take my case on .. I thought that had happened due to me having ME/CFS and striking a person who knew nothing it? but maybe things there nowdays are different, thou they didnt contact me back this time either after I applied and got put on their waiting list for help so after 4-6 weeks (it may of been longer) after I was supposed to be off the waiting list.. I ended up having to phone them again.... they said they'd been to busy to contact me back.

    The situation currently is (has been this way for the past 6? weeks) are they are now waiting for me to get all my stuff they've requested and send it in to them before they will (or may.. I'll believe it when I see it) help me (they said they would send someone out to see me but when I ended up ringing back when they didnt contact me well after the waiting list time had expired.. they no longer said about that and instead asked me to send them info).

    The big issue is that I cant stand for long at all and hence cant stand at my photocopier to copy the info they've asked me to send (I have a whole file of stuff to be copied to send them). I basically are needing help to get their help :( .

    You've made me see by your post that what I should do is to give up also trying to provide good info on ME/CFS to back up my complaint and instead ask them to contact the ME/CFS SA society. Most of my letters are never being sent to where they should of been sent too due to me finding I cant keep up with things with trying to find backing things all the time to support whatever Im saying (and that takes a lot of time). As it is, Im very struggling with all my letters due to my Aspergers which makes me keep wanting to change things in them and get the letters perfect (so most never end up being sent).. and the letters tend to just go on and on and I struggle to get to the point. Im often spending one month.. working on one letter when hell is breaking loose in so many different areas around me (I still havent put in the complaint over the shocking treatment I got at the hospital recently due to my MCS.. with the head nurse almost laughing at my issue).

    I think after reading your post what I will do is ring the Disability advocacy place back and tell them i need them to come out to see me due to my issues with being able to photocopy a heap of info they want.
     
    Last edited: Dec 16, 2013
  8. taniaaust1

    taniaaust1

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    I just rang the Disability advocacy and complaints service to tell them why I havent sent the info they requested weeks back into them. Turns out they have given me a case worker there (Leatha Henry, Ive no idea if they'd contacted me or told me this or not before). She is thou currently on leave but wont be back till the 6th Jan and they cant do nothing till then. So Ive asked them to give me a ring when she gets back.
     
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  9. taniaaust1

    taniaaust1

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    Im going to ring Helene (DisabilitySA) as it struck me this morning that seeing she's supposed to be my caseworker that she should be doing more to get the home support agency to send me a person around to help me unpack (and not just going to me when I tell her upset that I couldnt be put back to bed via the wheelchair as was needed, due to boxes of unpacked stuff being in the way.. .. she just says get your home support agency to help you with that... when the home support agency arent in fact giving me workers for that. Ive rang the home support agency SO MANY TIMES, been asking for months (both before the old contract expired and while Ive had the new contact) for help with that to no avail. (When was that unpacking support contact granted? I think back in August.. and Ive only got to use 2hrs of the support).

    So at this point I do think my case worker should be helping to have this situation solved. Sure they've granted me time and funding for the home support agency to give me the worker for it but what is the point if thou everytime I ring they never have a worker to do it and hence cant and keep telling me I'll have to wait till they find someone. Last time a support worker was here to help me with any unpacking was many MONTHS ago.

    I cant remember if I mentioned this.. Fortunately the mix up of CSI (my support agency) has been solved. I'd been told I'd used 4hrs of that support out of the 6 Ive been granted when in fact I knew I'd only got to use 2hrs of it. There was then nothing I could do to prove I didnt so it was looking like I'd loose some of my my needed unpacking support time I'd fought so hard to get in the first place. They since realised throu their own records that they made a mistake and corrected it (but gave me no appology at all for their mistake even thou they insisted it was correct originally. I only found out they had realised they had in fact made a mistake throu Helene from DisabilitySA).

    I want that unpacking support used very soon (I was hoping for it to be used before xmas as I so wanted to be unpacked before then). I also now have a fear that they will stuff up again and say Ive used the support time when I havent (and maybe next time I wont be so lucky to get it back again) so want it used ASAP
    ..............................................

    I do have some good news finally (putting good news in bold as I sooo like good news). ****GOOD NEWS, GOOD NEWS, GOOD NEWS**** I had my counselling appointment via phone and it was in fact helpful as they may be able to arrange some practical help for me eg my back garden. A once off thing to weed and mow my yard and then they are going to see if the Rotary club volunteer members can help maintain it for me (so hopefully no more dangerous snake hazzard soon!!).

    They also said they would put me on a list to get given a gov computer when they update their stuff (my computer is so stuffed, I cant even often get online as its modem is tempormental .. it can take hours or even days at times to get online if it gets disconnected.. it drives me crazy.. having to have 20 or so attempts to connect). It was a nightmare gathering all the info I needed for my financial counselling appointment the other day as my computer kept crashing and then i couldnt get online again (and I needed to know the costs of all the supplements etc I order etc). I was just about to put one on hire purchase which would of just dented my budget around worst.
     
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  10. taniaaust1

    taniaaust1

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    good and bad news

    Got to use my new wheelchair (crazily me and workers forgot I had it the time before even thou it was right in front of us.. I guess cause we are just so used to me not having my own). It was great.. I came home from shopping due to using it and able to have my legs up the whole time, not tired and needing to go to bed right after for once. I felt soo good I wanted the support workers to stay an extra half an hour and use up some of my unpacking time (1 hr between them).

    After some stress with trying to get hold of the person I needed to do so which had to happen fast, I finally got the approval for them to stay the extra half hour and allow a bit of that time Ive had granted to be used. (The support agency actually were more efficent then normal and I got a call back 5mins before the workers were due to leave so just in the nick of time),

    Went to go out to the shed to sort that with the workers, as previously when Ive had unpacking support, we've been dumping boxes of stuff from my lounge room to the shed and the shed now hasnt got much at room to put anything at all till things are sorted out there (till Ive actually put everything where I want it to go). Turned out thou now that weather has warmed up, the shed was too hot for me to even be in, I couldnt even stay out there a few minutes, so I had to get them to just somehow make room to shove more boxes into the shed.

    This has really screwed things up as it means next time I get workers in to help me sort unpacking stuff, means we will have to sort the shed out (and now that there is no room to move in there as it was too hot for me to sort out the other day, means everything now is going to have to be pulled out before I can get to shelves, cupboards and stuff in the shed to put shed gear away, before anything else can be put there but now with summer here. There is only going to be very few days where I'll cope with the heat out there with summer (anything 25 degree celicus and above makes me sick)

    This is going to make it even more of a nightmare for the support agency to arrange unpacking support for me as now they are going to have to also time it with the weather!!!. ***sighs.. if this all was done when it should of been instead of the support agency and DisabilitySA stuffing me around, it would of been done way way before now, well before summer** (I moved into this house last summer so its been almost a year).

    (I only have 3hrs left of unpacking support, I can see Im not going to get it finished with the unpacking support time I got given esp since now we also will need to be double handling things due to this heat issue now).
     
  11. taniaaust1

    taniaaust1

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    Last night.. I embarrassed myself soo much.

    I'd gone outside to check my xmas lights (someone last week stole one so everytime I hear a car outside engine running parked, I go and check).

    I saw my hibiscus which one set of fairy lights is over, had snapped (a third of it) so lights were dangling and laying all over the ground ,so then went outside to fix the situation immediately as lots of people are driving throu my street to look at the lights here (this street won the award for best xmas lights in Adelaide I think it was, last year). Quite a few people drove by and several families walked by as I was doing this. I then was heading back inside when I noticed something.

    I'd had a bit of a mind blank and forgotten to do up half my dress when I'd put it on. I remember now that I started doing my dress up from the bottom, changed my mind and started doing it up from the top..then I must of just lost my focus and walked out not properly dressed.

    I was completely exposed in my panties, the whole time I'd been outside!!!...buttons going all the way down the front of my dress undone from just under my chest to my knees leaving a HUGE gaping exposed area as Ive put on weight, my dress is usually pulled over me tight in this area but it was all undone . OMG.

    OMG.. one family who was walking by actually stopped at my place and was just standing there looking (about 5mins, which confused me at the time as my lights arent at all that exciting)... now I think I know why. Now Im trying to remember if they had a camera out, I think they did.. as at one point they appeared to line up their kids for a photo and I would be in the background.. trying to fix the lights.

    The more Im thinking about what happened last night, the more Im freaking out. I think they may of got my exposure on camera.
     
    Last edited: Dec 21, 2013
  12. taniaaust1

    taniaaust1

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    DisabilitySA

    Helene (my caseworker) from my state disability services came out to my home yesterday as she needed to get me to sign some paperwork. We had quite a discussion (until I got too wiped out and had to go to bed, her visit exhausted me).

    Helene told me it was my Aspergers and not my ME/CFS which was what got me accepted for support (that makes me so angry cause my Aspergers is such a minor issue and something I could cope with well before the ME/CFS.. Aspergers doesnt leave me bedbound or homebound. So this once again just proves to me just how much in Sth Australia those who have ME/CFS are discriminated against.. you'll get state disability support for Aspergers but it matters none to them if you cant walk due to ME/CFS!!!). So know I understand more why they have been ignoring the fact my ME/CFS is worst due to my house move. Our illness just doesnt really matter to them!! We soo need a group legal case over here in SA over the Discrimination of our disability services in this state. Seriously.. if a few others in this state would stand by me and were willing to do a group legal thing.. I think we'd change things over here. We should be standing together to stop this discrimination against us.

    I asked Helene if she'd asked her manager yet if I can have a copy of their policy around me having to be helping the support workers when here due to their policy. She's suddenly thou since Ive now started insisting to see this policy and saying Im going to fight against it, she's now suddenly backtracked on what she's been telling me before and now saying she never used the word "policy"in regards to me having to help the home support workers. This is untrue as her tellling me I need to be helping the workers and that is policy.. has been said by her to me several times. Sighs.. as they dont put in things in writing.. of cause now I have no proof of exactly what was being said to me. I still want her backtracking stuff put in writing (but getting things in writing.. well its hard to do.. she's now saying she'll look for something she can copy from online to give me so I know where I stand with things).

    Anyway.. the visit did go well.. she was very nice thou I was bothered a bit by the letter I had to sign. She insisted she put mention in the letter to my new support agency of my previous borderline line personality disorder (she's FINALLY after 6?? months of me pushing her to change my agency over as the other one is highly unsuitable and ignores my MCS). I told her that its wrong as I was rightfully diagnosed with Aspergers which had been missed after that but she insisted as it was mentioned by me when they first took me on (I cant remember mentioning it so dont know if i did or not), she said it has to be written into the report to the new agency cause I'd mentioned it in the past.

    Does that make sense?? (it isnt to me.. just if i had mentioned it in the past and then later said it was a misdiagnoses.. why would she need to go and put it into a new application for a new home support agency?). Anyway.. Im upset it's been put into the report thou Ive since got her to add in the report that Ive told her it was a misdiagnosis (I was going to refuse to sign it otherwise).

    Im sooo sick of state disability crap which wants to focus on that we all have mental health issues rather then really listen to our physical disability. Im so sick of the ME/CFS discrimination.

    One good thing about this is that due to this application to new home support agency, I got to see my doctors letters to DisabilitySA (and insisted I photocopy them seeing she had them at my place and I had them in my hands). They are very good letters.. no bullshit diagnoses stuff on them and actually back how sick I are... in fact one of my doctors has on his letter that I cant walk anymore then a few metres (which is more then true at times as when Im bad I cant even walk 1 metre.. Im not capable of even standing..thou if Im pacing right and havent been over exerting, I can walk a lot further then a few metres).

    This is how the referal from Helene (DisabilitySA) reads even after my specialists letters to her (so you can see from this why I'd be upset about it some)
    "Client's disability (s) Multiple health issues - see attached summry from Dr Del Fante dated 2/8/2013 and Dr David Mitchell dated 6/8/2013. Tanya previously reported a diagnosis of Borderline Personality Disorder, but has corected this and stated this was a mis-diagnoses, prior to her being diagnosed with Asperger Syndrome"

    (as I said the dr letters/summaries are good ones but she just wouldnt write in ME/CFS in that part.. and wouldnt not write in the BPD even thou it was wrong.. why would they do that? its like the state service WANTS to push the idea onto people that I have mental health issues instead. Why even in a brand new referal, write in a past diagnoses which was wrong?). I asked how can I get this removed from my records and she said I cant.

    "Current situation summary: Tanya is a 42 year old woman who lives alone in Seaford Rise. Tanya reports allergies and multiple chemical senstivities that are not on the enclosed medical summaries - please obtain details from Tanya. Tanya reports that she currently collapses once in every three times she leaves the house from Postural Orthostatic Tachyardida Syndrome (POTS), ME/CFS and/or chemcial sensitivities. Please discuss Tanya's preferred response following a collapse with her while planning her support"

    At least its wrote about in the summary but the state disability service are doing their best to make it sound that everything is coming from me while making a big thing about past wrong mental diagnoses. I feel angry that mention of BPD and Aspergeris in the first paragraph of the report (the section under clients disability) with no mention of the name ME/CFS and my dysautonomia, the things which are greatly affecting me!

    I cried after she left due to this... and cried that she wouldnt remove the BPD when she phoned me to say what she was writing before she brought it to me to sign. I said to her that surely if mentioned BPD when I first got put onto their service 2 years ago and it was on their records due to that, surely now that Im making it clear it was a false diagnoses due to missed aspergers, sure it doesnt have to keep being put onto new forms..but she said it had to be. Im finding this hard to believe! Its the disability service which is determined to make me sound like a mental health patient, they arent willing to accept ME/CFS. (sorry im going on about this.. its quite upsetting.

    Upsetting they are ignoring the fact that BPD isnt even on the doctors I see records and letters so what right do they have to be putting it into my reports?? Im going to be tained due to a false diagnoses FOREVER due to doctors who didnt believe in ME/CFS and who had no idea what i was going throu and too stupid to see I had Aspergers)
    ....................

    I also run into this issue all the time.. as I get over 90 different symptoms with my ME/CFS and of cause the drs dont go listing all my symptoms and just say ME/CFS.. when I then have to deal with government services and people in their reports its always Tanya is saying this or that (and when BPD then gets wacked onto one of my reports too.. many people dont believe BPD people as its beleived they stomatize)... I really really wish my drs would go and list ALL the issues I get with my ME/CFS onto their reports so others are dealing with me they dont just see ME/CFS and then often go not believing that Im experiencing a ton of issues with the ME/CFS.
     
    Last edited: Dec 23, 2013
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  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Good for you!

    That is very good news. I hope that with better information, your new agency will do a better job of meeting your needs.
     
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  14. taniaaust1

    taniaaust1

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    Unfortunately they've had those letters for many months and it didnt make them do a better job at all. The only reason I think they are putting things in place is due to my complaints to higher up gov depts about them. Its always been the case that my doctors letters basically get ignored. (It was the same case when I went for a disability pension.. I had 3 doctors/specialists backing I get it but kept being knocked back for it.. appealing time and time again.. only winning my case when it got taken interstate). It seems gov depts can ignore doctors.

    Ive recently said a couple of times to Helene (the state disability service) that what they are doing is illegal and Im seriously been thinking about seeing a lawyer for their discrimination.
    .....

    edit.. oh sorry.. I misunderstood your comment and thought you were talking about the state disability org. but now have got my head around the comment was about my home support changeover. Actually unfortunately as they have written the same illnesses into the diagnoses area.. the paperwork isnt really any different then what my other home support agency would of had early this year with that swapover. It only basically says that I do not believe in that other diagnoses but the fact she wrote it in my diagnoses area.. I guess it means they are pushing that wrong diagnoses may still stand.

    Anyway.. what I do know if that this new agency is supposed to be a lot better then my old one..so fingers crossed.
     
    Last edited: Dec 28, 2013
  15. taniaaust1

    taniaaust1

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    :rolleyes: Wheelchair Issues

    I know now it isnt just me as far as having trouble working how to put my new wheelchair together goes.

    Today the support worker took off the foot part to put it into her car easier and when we got to the shops, she couldnt get it back together. After almost 10 mins I found my second support worker (who was waiting for us in the shops as we were meeting there) and had to get her to go to the carpark and help my other one who was still out there struggling to put it together. It took them almost a further 5 mins before the other had done so and got the wheelchair back to me inside (I couldnt stay out in the heat so had gone inside and was sitting on a bench legs up).

    Then when we went to leave.. worker folded it down (cause of all the trouble getting the thing together, left it together) and put it in car only to find that it wouldnt fit and part for my legs couldnt be taken off once it was already folded, so she had to get it back out of the car, unfold it all to take the legs off before putting it back into the car again.

    All this made my 2 support workers end up going 15 mins over time each (so I used up 30 more minutes time then I was supposed too) and ended up making it so one of the workers wasnt going to be able to properly fit in her client after me so she ended up having to ring the agency to cancel out on the next person she had.

    I wish I could say that Im liking this new chair (well it is great when Im in it!!) but why on earth does it have to be so complex that we are all struggling to put it together (one of my workers told me she just cant do it and will get another worker to do it in future). Im still waiting for someone to come out and try "again" to teach me how to put it together after I dismally failed with that when the person who brought it to me found I just couldnt get the hang of it. I guess I may be waiting for a few weeks or more before someone comes out about this issue due to xmas and the new year.
    .........................

    (became my last support time fell on a public holiday and I dont get it then, so dirty dishes siting around for a week.. I now have a huge ant plague here again too.. ants everywhere. I had my support workers having to step over ant baits Ive made up and put all over my floors as these ants refuse to eat the shop baits)

    I did have a good xmas thou at my sisters (thou I made my leg bleed due to the wheelchair and trying to get it up some steps.. the bolts sticking out scratch.. I need to find out what to do about that. Its also got some parts sticking out which are supposed to stop it from ever being tipped over but that made it extremely difficult to get it up steps without hurting myself so Im going to find out if that part can be removed).
     
    Last edited: Dec 31, 2013
  16. Lynne B

    Lynne B Senior Member

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    Hi, Tania,

    Nothing is ever simple, is it! Can you contact the organisations Andy Pandy mentioned, to help you with the Disability people? What about the state Ombudsman (or woman)? It's insane that they won't discuss your ME/CFS issues. Here in NSW it's called post-viral fatigue—although I can't help wondering about the 'post' part of it. I notice my GP doesn't categorise it properly even so.

    I don't know about you, but this sort of treatment gets my back up and I become determined to keep fighting till I win! So hang in there and happy new year to you. Now I'm going to read a book for a while and go to sleep at the usual time of 10pm and to hell with fireworks over the Sydney Harbour Bridge. I feel like a curmudgeon, but why don't they give a light show rather polluting the air with fireworks?

    Cheers, Lynne
     
  17. taniaaust1

    taniaaust1

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    I have been trying to deal with one of those orgs.. my issue is with any org you need to be advocating well for yourself and Im being not good at that.

    They want details of everything and evidence etc and as I cant even stand at my photocopier to photo copy my medical files which the the first one on Andy Pandy's list wanted (and Ive been coming across that with other orgs Ive tried to reach out with too).. its a huge issue. Im not even managing to keep my paperwork in order. Im currently waiting for them to ring me back to discuss that issue of me not being well enough to even get together all the info they ask for, (the person who is dealing with my case is on holiday and they wont give me another in the meantime).

    Cause Ive been trying to deal with so many orgs at once, Im now completely lost on who has what info and who needs what info..to the point that I now need to request my case notes from them all under the FOA (freedom of info act) to know what I havent sent. Its got me all completely confused and now such a mess.

    .............
    Its just all too much.. Im currently already trying to deal with 3 different orgs, actually 4 if one counts the higher up org which I feel has abandoned me (which I probably thou should try to contact again and tell them Im having issues with getting the stuff together for the Disablity Advocacy and complaints place they recommended me contact. Im really needing someone to advocate for me (do all the photocopying of the info I need to get together to send places), when Im doing too much of this.. I end up crashing and then Im really stuffed (as I have then no one to help me when I end up stuck in bed even unable to walk).

    I dont feel like I can deal with Ombudsman currently and trying to advocate for myself and ME/CFS and what is going on while Im struggling to deal with the others and cant already deal with it all. Cause Im not up to really advocating well for myself.. all my issues just end up dragging on and on. I have unreplied letters from one of the orgs going back since April with stuff they said and got wrong about me and ME/CFS going uncorrected (as Im finding I can only deal with one org at a time as otherwise its all too much for me and I get completely overwhelmed and my health starts crashing faster).

    ..........

    Post-viral fatigue is a very old term for CFS. I rarely hear that term nowdays.

    I really got no other choice but to keep fighting to get my needs met (even if I are doing a dismal job of it due to being too sick to be doing this well). Life for me is not nice at all till I do due to even bare life essential things being affected in my case eg I still miss meals due to being too unwell to cook.

    Thanks for that.. I hope you have a good new year too.
     
    Last edited: Jan 1, 2014
  18. taniaaust1

    taniaaust1

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    I'd like to wish everyone who has been following my battle with orgs thread (supposed to be treatment thread) to have a much better new year.

    In the new year I hope to get back to medical stuff seeing DisabilitySA is starting to help get me to medical appointments. So hopefully everyone will see more treatment posts and hopefully things for me improving.
     
    Ritto likes this.
  19. taniaaust1

    taniaaust1

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    Update of my sister

    Ive brought her up a couple of times in this thread before and want to say that her husband has finally managed to drag her back to his dr over her ME/CFS symptoms. She's had several very bad incidents with drs over the 2-3 years shes been sick in regards to her symptoms eg being told she must be depressed, being told to just exercise when she cant etc that she was refusing to see another dr. I told her husband she needs to go to a specialist but he wasnt listening and insisting she got to his dr.

    Anyway.. his dr gave her the following diagnoses.. "irritable bowel, irritable stomach, irritable brain". :confused: Has anyone here heard of "irritable brain" or irritable brain syndrome before? Its so pathetic this inventing new illnesses up as doctors dont want to recognise ME, some dont even want to recognise the existance of CFS here!!!.

    My sister is desperate to get well right now, finally is out of her denial of how sick she is (as her husband is getting fed up that she cant look after the house and kids and isnt about to let it drop) and she's crazily applied to do Midwifey in March (or will be loosing her nursing certificate as she needs to do so many hours study or practical working at hospital), so is determined to find a way to get better before then.

    In her desperatation she did a massive order of supplements the other day, half of them things I havent even tried... Unfortunately she's ignoring my advice and didnt get a couple of the things which I thought were most likely to be able to help her. I hope her disappointment is going to be huge when it probably doesnt help much.

    She's heard about lyme so now thinking she may have that so Ive given her the name of the nice lyme specialist I went too and hopefully she'll follow that one up (maybe seeing she hasnt been sick as long as me, maybe something for her will show up on a lyme test???). She'll be able to get a lot more tests there.

    ................

    Today I got an interesting pm throu this site from someone in my own state describing all the drs she's been to here. Turns out she's tried a few I have but she has found a good one who thou not a ME/CFS specialist but is open and actually diagnosed her with ME when she presented all that info.. yes that is right, a ME diagnoses in Sth Australia!! and not CFS. She's now fighting the system here to get her ME recognised but as Ive found out, she's found out too there isnt one ME specialist in this state.

    Its great to have a GP option who believes in ME even if I are having trouble getting to drs. I would like to get my stupid CFS diagnoses changed to a ME diagnoses and as soon as I have the out of control things (abnormal test result stuff) in control.. I want to do away with the "CFS" specialists Ive been having to see due to no ME belief doctors. I'd like to boycott those CFS docs.
     
  20. taniaaust1

    taniaaust1

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    Its 3.45am and Ive woken up due to stress. I went to bed not thinking about my issues but then start thinking of them while asleep and it ends up waking me up. Its the DisabilitySA (states disability service) Im feeling stressed out about and things Helene (my case manager from there) has said to me on the phone at times.

    What's stressing me is she says one thing and when I try to get something in writing about what she's said, she goes and says something else to me. Without having what she's said in writing, I have no proof of the stupid or not right things going on. I feel like Im in a constant battle with that agency due to their lack of understanding on my condition.

    I want to get in writing her latest she's said ie that she couldnt do a referal for me to a new support agency without mentioning "borderline personality disorder"on the referal form as she said she had to do on the phone as she said I'd mentioned that in the past.. (the diagnoses for me which is wrong) under the section of my diagnosises. I personally believe that it's bullshit someone would have to put a wrong diagnoses from years ago, on a new referal.

    Im stressed out as I believe due to what has happened with other things that she's going to deny she said this to me when I ask her to put what she said in writing. (I wish I had a tape recorder but I dont.. as I feel like all our conversations should be taped for evidence of what is being said to me).

    The higher complaints place told me to get everything in writing but how does one do that when the Disability service phones (thou I have told them I want everything in writing) and all the convos take place by phone including being told over and over they are doing something which then I end up getting another phone call about months later to say exactly the same thing and find out they didnt (this happened with referals the Disability service said they were doing for me.. so now Im at the point where I dont believe anything Im told by phone).

    Anyway..this is waking me up in the middle of the night. By Helene mentioning a wrong mental health diagnosis on my new support referal, this could help lead others to thinking I have mental health issues which could alter how others treat me.. as it is as we all known many out there think ME/CFS is a mental health issue so this is the very last thing I need to be going on.

    ps when Ive asked for certain things said to me to be put in writing.. Ive been told just cant as she needs to "get approval" first (and then nothing happens).

    Hardly a day goes by in which I arent dealing with stress that dealing with the Disability agency gives me (with them seeming to put more empasis on mental health stuff then they do my physical disability).
     
    Last edited: Jan 1, 2014
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