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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 Senior Member

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    That perfume thing with the special medical transport schemes around my state, seems to be the norm as I also had that issue with the local transport service (not the red cross but one run by the community health place) in the last area I lved in too.

    Ive tried to explain she needs to somehow slow down. My sister as she's still after 2-3 years, still struggling to just accept that she's got ME/CFS so she's till a long way off of being able to accept that for the PEM all which can be done is better pacing. She's still convinced that symptoms must be somehow fixable. Its very hard for her to pace well too right now as she's got 3 young children to take care of so has to take them to school etc etc. They are around 3, 6 and 9 years old. I know that the kids have missed school due to my sister being in bed and not feeling well enough to take them (Ive no idea how often this happens but know it does as Ive rang there before and found this situation going on). They were/are also ending up being taken to school quite late most days. If my sister had her children in a normal public school, she would of ended up in trouble for all this by now but she's got her kids at a school which is very very lax so nothing is said about kids not showing up or late very often.
  2. taniaaust1

    taniaaust1 Senior Member

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    Ive been up since 4.30am due to feeling nauseus and having a not right feeling tummy. Ive been getting this daily for the past week or two and think I have one of my food intollerances back causing this probably dairy issues which Ive had before for a couple of years (but then found I could have dairy again after avoidance of it for a very long time) or Ive become worst to gluten (something Ive suspected was an issue for me). I dont know which it is right now.

    Anyway it sucks feeling this ill (close to a vomit), I could take one of my prescription anti-nausea pills but Im not going to as too much like using bandaids when this issue is something I need to work out the whys of and change things in my life yet again.. (Maybe feeling so sick every day will give me incentive to do food elimination diet again to figure it out. I cant right now afford food intollerance testing).
    ................

    I had another offical letter come in yesterday in regards to the complaints I currently have in. From this letter "it appears" that my complaint is being taken up to a higher level in the gov complaints commissioners place as Im now being transfered to another person (unless the other working on my case has left?). This letter has left me confused as I dont know which complaint it is over as it doesnt state and the gov dept named in the letter which Ive supposed to have complained about, well I havent reven made any complaint using that name. So they've either stuffed things up (my last complaint was by phone when I was complaining that the things they were supposed to help fix where fixed and I added in other things in that phone call) or the gov dept I have complained about, is part of the other dept they've named in my complaint. (I dont even know if Im under that dept for anything).

    They may of screwed up names due to abbreviations. Ive been very unhappy about my home care agency, CSI (community support incorporated) and this letter puts my complaint against Department for Communities and Social Inclusion which I guess may also be abbrevated by CSI.

    I sooo wish things were easier, anyway, Im confused as heck over the offical letter I just recieved from the HCSCC.
    ............

    Yesterday I got another phone call from Helene (DisabilitySA) (after my last complaint about them, things now seem to be really moving along), they suddenly after the last phone call where she wasnt listening to me (and just trying to do all the things Ive already tried etc) have now done a complete round about face and asked me how much in extra support hours do I think I need (this is being asked after a clear knock back of this before). Well in the new year for funding now so I assume due to that, they may of have changed their mind (unless their about face is due to yet another complaint I'd made to the HCSCC about them and my situation?).

    I replied to her question that I need and would like just one more hour of support per week but as currently have extra support for house unpacking going on, on top of my normal 5hrs support I get, I then asked if the new support (if they grant it) could be put on after the 6hrs unpacking support runs out. I told her I just wouldnt manage it otherwise.

    After I said that, I suddenly realised thou that for the extra support I need, I could be in bed while someone is cooking me up a big pot of soup to freeze (so I stop the missing meal things at times), so changed my mind about having to wait for the extra support I need and stated this and that it would be okay afterall as I could be in bed while I was given this extra support. She goes "we expect you to be up and helping while the support workers are there". :eek: What!!! what part of how sick I are dont they get?? They do not understand that I have "LIMITS" and then need to go to bed when I need to go to bed and cant do things more then a certain amount. They do not understand that I really dont have a choice about this (or I'll be on the floor unable to even sit etc).

    Im going to try to contact someone (someone Ive spoken to once before recently who tries to help housebound ME people in my area), to see if she can advocate for me with this and ring DisabiltySA and talk to Helene and try to get throu to her about how ME is and that I just cant do things past a certain limit. I cant use the extra support I need (for my meals etc) if I cant be in bed during it!! (having the support workers here for the time they already come, leaves me not well). I think Im going to have to do YET ANOTHER letter, which includes references to her to try to get her to understand this situation that we need to pace and have limits we have to stick too.

    re transport for medical appointment issue, she said she's still waiting for the red cross to ring them back.

    Im feeling quite run down right now, the gov depts have me under constant stress with there stupidity over my situation as they dont have a clue about ME/CFS. My throat is also sore right now (which to me is a sign my immune system is running down).

    oh I do have some good news too. Helene told me that she had rung Dr Mitchel and he is supporting my request for a wheelchair and he did a letter saying that. I had thought he wouldnt support this as he hadnt been understanding at all in my visits to him eg when I told him I was missing meals due to often not being able to cook, his response had been "try harder". :alien:

    Maybe that letter I sent him by registered mail a little while back helped things with him supporting me now in getting a wheelchair? (thou it wasnt sent for that reason, it was sent to him after his ignoral that I wasnt managing to get all my meals. I'd actually even not been able to walk back to the car from his appointment, ended up crawling up his driveway.. a situation which really upset me as drs only get to see how you are while sitting in their actual rooms and dont see the consequences of just what the effort going to that appointment causes and if they wont listen, you are absolutely screwed, left without the needed help, being told to try harder (Im still upset about that stupid comment by my Dr).

    Im so glad I sent that very upset registered letter to him now, which made sure he later couldnt deny knowing just how sick I are. (sad, you need to try to cover all bases with doctors which has one using up ones valuable energy). I suggest others who have doctor issues do the same, that way you have come back on things and a doctor can never say "well I didnt know about that" in excuse for not helping you when he should of done, something which has happened to me with some drs in the past.
  3. taniaaust1

    taniaaust1 Senior Member

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    I really need to do a letter to state Disability Service (DisabilitySA) over this belief they have there (Helene's comment) that they expect me to be out of bed while I have support workers helping here. I NEED to get throu to them that if I need to be in bed, I need to be in bed. (this expectation of the disability service, does it mean that if I get a little bit worst and are in bed all the time when workers are here.. I'll get my support hours cut off?). Im very stressed over this comment which was made as they are expecting the impossible from me (I need to go to bed at times or I collapse.. my support workers have seen me collapse lots of times when Ive over done but they dont make the Disability agency rules, they dont have any say in how much time Im given or the rules set upon my support care).

    I need to get the state disability service (the ones which grant my support needs and lay the conditions down on them) to understand ME/CFS better not just for myself but for any others who have severe ME too who are right now not being fairly assessed for needs etc. (How could the states disability service currently fairly assess people when they dont even understand a ME/CFS persons NEED to rest when needed!!!! :eek: (I previously thought they at least understood that). It would be impossible for a fair assessement when one has no idea on this illness and the issues it causes

    Has anyone get any good links on severe ME in which are suitable for the state's Disability gov org? Ive already in the past gave the link to the International ME consensus defination but I dont think they even read it at all due to its length).
  4. Lynne B

    Lynne B Senior Member

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    Hi, Tania,

    Sorry I don't have any practical advice or information to answer your requests. I just wanted to say how much I admire your fighting spirit and the way you persist in trying to spread understanding among these government and community services organisations of the specific needs of people with your level of disability. I admire in particular your effort to persuade them that if they don't apply certain conditions on their helpers like turning up on time and when they're expected, without wearing perfume and so on, that their 'help' is worse than useless. Also they should realise that their rule that the person they're helping has to be up when they're there cuts out precisely the people with the greatest need for assistance. Do they really apply this rule to those who are so sick they are bed-bound, quadriplegic, etc? If not, why are they applying it in your case?

    While you are fighting for your right to the appropriate services that should be yours by right, it might help to realise that the work you are doing now will most likely help others with similar needs who aren't able to fight on their behalf.
    So best wishes, Lynne
  5. Lynne B

    Lynne B Senior Member

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    Hi, Tania, I finally had an inspiration about parking close to places you need to visit. Do you have a disability parking sticker? We have them in NSW and they can really help( although there often aren't enough of them). The other possibility is a community driving service that takes you to the doctor, dentist, and so on and then takes you home again—although you may have to wait for them to get back to you while they drop off and collect others with disabilities.

    cheers, Lynne
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I find the requirement that you be up and working with the support workers incomprehensible. If they will not read the entire International ME Consensus definition, could you cut and paste relevant parts and send it to them? (Yes, I know, more work for you. :( )
    taniaaust1 and Valentijn like this.
  7. taniaaust1

    taniaaust1 Senior Member

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    My printer stopped working a week or so ago, so I cant even go throu that right now and pick out the bits of it which could be used. (Im not sending an email as Im going to send a registered letter as it helps with the paper trail Im leaving behind me re possible future court case).

    Fortunately I have found something, a page from it which I printed out a few weeks ago for Adam (the complaints person from CSI) but he didnt take it away with him thou I'd given it to him to take and read so to gain more understanding (I dont think he even read it while here.. Im trying so hard to educate the people Im having to deal with). Anyway.. I have page 15 of it here about the energy budget/bank. So that will be useful to staple to my letter.

    Ive done a letter now. This is the one Im going to send to the Complaints Commissioner to add to the complaints I already have there which are currently trying to be sorted. I know this letter is a bit of a rave.. is it too much of a rave thou? (I really want to get throu to them about how bad things are around ME/CFS and that I have problems with basically every gov dept Im having to deal with re lack of understanding etc).

    Anyway.. here's my letter I plan to send re my complaint and new issue. Comments on it welcome.

    merylg and Little Bluestem like this.
  8. taniaaust1

    taniaaust1 Senior Member

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    crap. Im so wiped this morning (very tired) from all the bullshit Im having to go throu that I just walked out to the kitchen to make myself a hot drink and made my drink, forgetting to make a hot drink one actually has to boil the kettle **sighs, I didnt even think about boiling the thing** and then was standing there just staring at it, trying to figure out how water becomes hot. Once I figured that out, Ive just poured my drink, sugar and all back into the kettle **sighs** forgetting I could of used a microwave at that point. Makes me think of the day a long time back where I couldnt make toast as I'd forgotten what a toaster was or how they work, didnt know how to cook bread. I went without breakfast that day, cause I couldnt figure it out. My brain is worsening again :( hopefully not back to that. (im slowly steady regressioning due to all the bullshit in getting my needs meet).

    I think Im in for one hell of day today with my brain as Im too tired to function well and my boyfriend is coming as we need to try to fix my washing machine. Due to costs I cant really afford and discovering from the company who made it (its a good brand) that its only 3 years old and only just out of warrenty, Ive decided to attempt to fix it myself once we have the part, I think Ive worked out what part it needs (its an electrical fault) which will cost $115 (to get a washing machine person in..that would be a further $145 on top). So today, we'll take it apart and take a look and see if its something we think we can do (him putting in the muscle and me putting in the brain.. sighs..with this currently crappy brain. The worst which can happen is I could blow up the washing machine connecting wrong wires or something).
  9. Lynne B

    Lynne B Senior Member

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    Hi, Tania, I used to work in a government anti-discrimination agency and I remember it can be hard to know when a complaint is genuine and when it is not worth trying to sort out. A lot of it revolves around presentation. Give me two or three days and I'll edit your letter down so your problems with government agencies can be understood quicker. I'm not sure how to get my edited version back on this site but I'll work it out.

    In the meantime, take it easy and that will probably help you cope with the smallest things. However, I must say that I wouldn't be at all sure about trying to fix a washing machine at the best of times, let alone when I was having trouble working things out.

    cheers, Lynne
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It there some place you could make copies of that page from the International ME Consensus before you send it off? Then you would have some to give to other people if needed.
  11. taniaaust1

    taniaaust1 Senior Member

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    My boyfriend managed to get my printer going again for me yesterday :) , so that is fine now (and one less stress thing off my back). I tend to use my printer a lot.

    The washing machine.. I pulled it apart but unfortunately the part which needs replacing when I looked at it, I cant work out how to get it out and with all the wires and pieces everywhere, it does look too confusing for me to put the part in myself if I get it **sighs** so I will pay the $260 or so to get it fixed. It sucks when it cost so much for more for the repair guy then it does the part. I will try to get a free washing machine from freecycle first but have to wait before I can put my wanted ad in due to the rule of a week between wanted ads, I'd only just put a wanted ad in for red paint to fix my bookshelf up (and got a reply back :), so will be picking up 2 Litres of free paint which is coming from a close by hardware store on Monday, boyfriend will take me. Some things are actually working out right).
    .........

    Ive accepted Lynns nice offer for help with making my letter sound better.
    merylg, Valentijn and Little Bluestem like this.
  12. Lynne B

    Lynne B Senior Member

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    Hi, Tania,

    I just wanted to let know I got your email and I've started on your letter. I'll get back to you in the next couple of days to get some precise information from you.

    cheers, Lynne
  13. Lynne B

    Lynne B Senior Member

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    Tania, I just sent you my draft suggestion. In case that doesn't arrive, I'll also post it here. I left out all the detail you gave because I thought it would have greater impact if you just focused on your present problem. Feel free to make any changes you like. cheers, Lynne

    To…,

    I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome which, as stated in the ME/CFS Australia Working with your health care team, Fact sheet 1, is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems.[1] Further, the Fact sheet states that ME has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases (ICD 10 G93.3) since 1969. For those not already aware, ME/CFS Australia is supported by the Australian Government Department of Health and Ageing.
    I have been a client of Disability SA for several years, previously at … and now here in … When I first came to my present address, I learnt that my Disability SA file had been lost in transit and it was only with difficulty and after several weeks of ringing the local office of Disability SA before my file was located and services were at last resumed. This difficulty adversely affected my health to the extent that my condition deteriorated and I now need a greater level of support to meet my present level of disability. Unfortunately, I am having problems gaining this support from Disability SA.
    I am currently seeking some additional carer hours involving some cleaning services. I have spoken with Helene from your office about the possibility of gaining this support, which would include services such as washing up and cleaning where needed. However, it appears that a condition attached to this service is that I should remain accessible while the service is being provided. This I cannot guarantee, given that I must lie down promptly and even sleep whenever I need to. Failure to do so brings on a collapse, whether at home, out shopping, or even trying to cross a carpark to reach my car. As my present carers can confirm, I have had several such collapses this year after exceeding my energy levels within the two-hour period they have been supporting me. This pushing beyond my energy levels also leads to a worsening of my condition, a fact confirmed by the emphasis on the need for pacing and not going outside one’s energy level, as outlined in the 2012 update of the Canadian Guidelines of the International Consensus ME document to be found via the ME/CFS Australia webpage.[2]
    For this reason, I suggest that is not appropriate for Disability SA to seek to apply such a condition to support services to meet my needs and is due to a misunderstanding of my level of disability. Accordingly, I ask you to reconsider this condition and provide the service without it.

    Regards,



    [1]ME/CFS Australia, Working with your health care team, Fact sheet 1,http://www.mecfs.org.au//media/files/factsheets/English-Sheet1.pdf
    [2]http://www.mecfs.org.au/documents-for-medical-practitioners
  14. taniaaust1

    taniaaust1 Senior Member

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    Hi Lynn :) . Some how I'd missed your messages back so only just noticed them now.

    That does sound far better then the letter I did, thank you for doing that (quite a few mistakes in it about my situation but I can change those, my DisabilityService stuff wasnt lost in transit, that was stuff in my file for getting Disability pension when it was being accessed which "disappeared" out of it. Part of the reason things were slow to happen was that they pulled the agency they first put me with (Cavery Silver Circle who were prompt and interviewed my promptly after DisabilitySA contacted them but before the support started, DisabilitySA deciding it costed too much from that agency and hence they pulled the support the day before the worker was supposed to come from there.

    and then when they put me with a new agency DisabilitySA didnt follow up and the new one didnt start giving me the support for ages. I kept ringing them but they kept on saying they didnt have my paperwork yet from DisabilitySA but I have strong reaons to suspect now they in fact did . It was the DisabilitySA from my previous location who set up the new support and not the one from my new region I'd moved to, my paperwork didnt get transfered for ages (nothing was lost, things just werent being done and followed up so things all went haywire).

    Right now I have countless issues going on, it isnt just this one issue with DisabilitySA putting that rule on things, NONE of my original complaint to Complaints Commissioner from April has been sorted out yet, that is why I was trying to make it clear that it isnt just this one issue happenig. The fact they dont know much about ME/CFS, I think that is why they arent putting much onus on fixing things up in all the areas Im currently in trouble with.

    I STILL havent had transport issue sorted which was in my original complaint (so STILL arent getting to my specialists I desperately need to get to), Im still waiting to see if I will get a wheelchair, I STILL have an issue with not receiving services for unpacking thou I'd thought that had been mostly sorted out (I just found out yesterday the contract disabilitySA drew up which didnt meet my needs due to not having the support offered to me in a way I could take it up, has now expired so Ive lost 4 out of the 6 hrs I was meant to have for unpacking time partly too due to the support agency itself not putting things in place promptly too), and now more issues are building up as well.. eg I have disability aids which are broken (my cane chair isnt usable and need fixing, my garden is now out of control etc etc.

    Im having big issues with the home support agency due to lack of understanding out there in the support orgs. I had to ring their complaints person yet again yesterday and he's now asking to speak to my case worker (something disabilitySA has refused to give me so I dont have one to speak to him). I was hoping by this letter it would save me having to write many others as I was hoping the Complaints Commissioner could see Im getting issues all over the place right now, issues everywhere which currently do need sorting with all departments (there is still the discrimination thing too over my being rejected or the heating and cooling rebate even thou I can go unconscious in heat thou the Complaints Commissioner said they cant fix that). Hence i was trying to get throu to them that a lack of understanding of ME/CFS is causing big issues everywhere (its not just one little thing).

    Anyway.. a big thank you :) . I'll take a big section of this letter and use it (its great to have it with all those links) and add to it what needs to be added to hopefully get them to understand right now that Im having LOTS of issues going on right now which need sorting due to lack of understanding in the departments, its a situation which NEEDS changing.. Ive been going throu discrimiination now from various depts for over 7 years!!,. (I'll see if my boyfriend can help me to alter it today to get that message across). They can fix the one issue with this one person not understanding things, but the whole issue Im facing all the time with things will remain.. I'll constantly keep running across ones making bad/wrong decisions due to their lack of knowledge. Something more needs doing. They need to set up an advisory thing for the depts on ME/CFS or something otherwise the issues for me and those like me who need a lot of help, will keep continuing.
    Valentijn likes this.
  15. taniaaust1

    taniaaust1 Senior Member

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    I want people to be aware that the stuff Im typing here about the issues Im having with the depts is only a small amount of the issues Im having with them as often Im too sick to post about what has gone on so much of it goes unsaid or I dont end up complaining about as Im struggling to keep up with things.

    eg 8th August I didnt post about.

    That day I was the first day I actually did get some unpacking help (note. Id moved into my house on Jan 4th.. SEVEN months it took to get that support) . Then the new worker arrived thou wearing PERFUME even thou I assume CSI told her not to come wearing it. (this was the second time since Adam and I meeting over the issues not long ago that something like this has happened, the other one had an airfreshener in her car). I smelt it when she was still coming up my driveway 5-7metres from my houses front door. I yelled throu the door for her to stop as there was NO WAY she was going to be able to come into my home like that as she'd make me sick. So we talked with her still outside and me inside throu the door, she was flustered over it going "oh I didnt think you'd notice :eek: " . I ended up having to send her away to shower and get redressed before coming back.

    I ended up thou getting sick just from her wearing perfume outside my house (it was one I reacted very badly too). So when my normal other support worker turned up 5mins later, I was feeling so not well from the perfume exposure throu the door that I had to go to bed. It took me 50-55mins (sleeping in bed as it had knocked me around) before the headspins and feeling ill stopped and I was able to get up again.

    My normal support worker when I had to go to bed due to that others perfume, she rang the home support agency for me to try to cancel the other from coming right back, the normal happened, we couldnt get throu to who we had to to cancel and hence she had to leave a message to be passed on. As per normal left messages didnt get passed on to cancel that worker for that day and hence the worker did came back. Fortunately I was just out of bed by then and able to use her support for 1hr to help me unpack (if I hadnt been out of bed. I'd been asleep 10 mins before, she would of had to be sent away again).

    To top that off, when I'd recovered from the perfume incident (not sure if it was the same day) I rang Adam and left a message with CSI (community support incorp) people as I couldnt get hold of him, for him to ring me back (I wanted to discuss this issue happening again). Anyway.. 2 weeks? later I still hadnt heard back from him. So yesterday after YET ANOTHER issue (no one at all showed up to help me unpack and I hadnt been told no one was coming so was waiting for someone to turn up), I rang him again and insisted I'd stay on hold (thou that often makes me unwell holding the phone for that long) even thou they told me he was busy and they wanted to yet again take a message from me, I finally got to speak to him. It turned out no one at the agency passed on to him my phone message (yet again!!). and unfortunately due to my crap brain, once again I forgot to get the name of the person I gave the message to. :alien:

    The communication issues Im having with that agency are huge. Its very hard for me to remember to get names of people, I try to remember but keep on forgetting. Julie my other support worker ended up ringing the agency for me herself yesterday as well (before I rang Adam to ask once again what can be done to fix the issues), to find out if someone was going to show up to help me unpack or not (she's been very good but she's usually left just as confused as me as what is going on).

    Anyway.. Adam the CSI complaints guy (he's good) now wants to talk to my DisabilitySA case worker but I havent got one (cause they wont give me one). He has come up with an idea which may solve the issue of workers turning up wearing perfume or having air fresheners in their cars even when they've been told not to. He's going to get them to each sign something to say they will not do it. So hopefully that issue will soon be solved (but the issues I have surrounding Margaret remains). I spoke to Adam about her yet again yesterday and he was surprised that once again she's let me down by not keeping me informed on what is going on eg when support workers wont be coming when Im expecting them. Im going to do a follow up letter to yesterdays phone call to try to make sure what we discussed is followed up on. Im fed up being made sick by support workers not doing the right thing.

    oh another thing. I only ended up getting 2 out of the 6 weeks I was supposed to get for the unpacking help. CSI due to screwups (Margaret screwed up yet again or I would of got 1-2 more weeks there, the other screw up with it was DisabilitySA not giving any spare time for the hours and making it so it wasnt usable for me) is now having to try to organise another contract for me with DisabilitySA for the unpacking help, who knows how long that will take. Seeing getting house unpacking help has been an issue since Jan this year.. who knows!! So its back to the waiting game again to recieve the help Im needing. (I arent left with any faith in our system).
  16. taniaaust1

    taniaaust1 Senior Member

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    Yes I do have a Disability parking sticker, Ive had one for quite a while. It does help but it doesnt as when I collapse I cant walk at all so cant even get back to a car (this then causes me then not to be able to get up off of a floor and walk for up to 2hrs), hence why Ive been trying hard to get the wheelchair I SHOULD of got years ago from DisabilitySA if they hadnt discriminated against ME.

    Ive been trying to sort the community driving thing out for years to get to my medical appointments (this issue is why my condition is so badly unmanaged). I moved to the city in the hope I'd have more options available but that hasnt turned out to be the case.

    I was previously living in Strathalbyn (and the Mt Barker Community Health had a transport scheme to get people to appointments but that was not suitable for me to use as they fill the whole car up with people to take to appointments in the city. 1/ I often need my legs up in a car as even sitting with my legs down is an issue with my not properly controlled POTS 2/ The perfumes and they wouldnt tell people not to wear them or deodourants. The other service were I previously was The Strathalbyn volunteer transport one (run by the local council who could take just one person at a time) .. posed limits to how many doctors/specialists appointments they could take me to and also could only take me as far as Mt Barker (so not to any of my appointments in city). They also run out of funding each year so there was no service at all for months at a time.

    So I moved to the city in hope I'd be able to get suitable transport to appointments. Turns out thou that I dont qualify under the local council where I are now as their service isnt for those who have "chronic health issues" (only for those who say broke a leg and are just out of hospital). and the red cross transport service, that too cant tell people they pick up with you not to wear perfume.

    The only way around my transport issues is to get DisabilitySA to allow one of my support workers to take me to my medical appointments (I need that anyway, Ive collapsed in medical car parks just from going to an appointment). That is one of the things Ive been fighting for with them which due to they not understanding the nature of severe ME, they are not understanding at all.
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Liability issues might prevent the support workers from either driving you in their car or driving yours.
    taniaaust1 likes this.
  18. brenda

    brenda Senior Member

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    Tania

    Please don't take this the wrong way - I am only trying to help and am not being critical, but have you considered that the reason why you are being fobbed off all of the time, is because your writings here are being scrutinised by your support agencies? Maybe that's a long shot, though we just don't have a clue as to how much we are all being traced this way or who may be snitching on us. Sometimes we may give clues to identity even despite nicknames. I just don't have a clue as to how much this is possible but being of a suspicious mindset anyway, I sometimes wonder.

    There are just some things that they might think do not add up, like when you say that you are intolerant to chemicals (perfumes) yet you got into a very small space and used paint recently in your garden in that metal container. And you managed to do that job yet have to leave your dishes for weeks and cannot clean up spilled food. You cannot walk from a building to your lift at times yet soon after you moved house (and even managed to do that) you managed to hold a party and cooked a number of main dishes for your guests, about 30 if I remember. You have the ability to care for an animal, with all of the feeding and litter changing involved yet are saying that you cannot even look after yourself. You say that you need to get out for a shopping trip weekly instead of online ordering due to isolation yet you have family calling and even a boyfriend who takes you out. I am just saying what they may pick up on.

    Another point is, that I don't think that you can change things yourself, I feel that you really need an advocate to get through the mess. You say that you have come across the authorities in the past with some law issues and that you have had some mental health issues? Perhaps, if there is no service providing advocacy for vulnerable people in S Aus. maybe you will get further by using mental health services to present a case that you have ME as well and need assistance rather than have them write you off as just crazy and making it all up? Just a few thoughts. If you prepare and have relevant material before you see a mental health worker, with someone with you from a local ME group for example (is everyone locally having the same problems?) to get at least one support work on your side, then you might get somewhere. What you are going through seems to me to be putting you at risk of relapse.
    taniaaust1 likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Ive altered the letter so its now all correct and did come up with a very good letter thanks to your help Lynne :D

    Here's the letter I sent today to the states health complaints commissioner

    As I was worried that they may not read the links seeing they were all on this which was being sent as a postal letter, I also included a copy of the page I was going to include from the consensus primer as well in regards to the importance of not going over ones limits.
  20. taniaaust1

    taniaaust1 Senior Member

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    I do not think that they are reading my posts here but I personally think it would be great if they were as I truely do tell it like it is for me and I personally think it would only make them aware how sick I are and more aware of all the issues Im having here. I have nothing to hide. I refuse to have fear over sharing my life and how things impact me and of what I do and do not manage.

    If someone is constantly going to worry about 'what will others think?" before doing things, that would be a great way to give yourself anxiety. I say people should be themselves and shouldnt have to fear being open about their lives. I refuse to have fear over such an issue. We all try to find ways around the issues the ME causes us.

    If someone read my post on that, they should of seen that it wasnt at all easy for me. I wasnt even breathing inside of there (I think I did say I was breathholding to do that while inside the tank and I kept sticking my head outside the tank to breath) and did not even have the container of the bitumen paint even inside with me either (my support worker kept on moving it away from the outside where I was, so I wasnt even breathing it when I stuck my head outside to get air. I did mention I had to take great care how I did things due to my chemical issues.

    It was only a partly standing job too as most of it was done with me down on my knees (a tank on its side, one can reach half way up it without even standing). The amount of standing I did was only about 5mins standing, it was patching over a few holes.. maybe up to 6 tiny holes, so a very quick job (and not painting the whole bottom of a tank). As I do "some" standing when we go shopping, I dont use wheelchair the whole time for me to do that isnt a far out thing. I think I even did say in my post I hurt myself doing it too (I cant remember, I was covered in bruises from climbing in and out of a tank, I think I said that somewhere?? I hurt myself).

    If anyone investigated anything I said in my posts, they would find out just how hard things were for me to do and those who are often with me would back up what happened.

    I think most from my comments would of seen just doing a very simple thing like that was quite difficult thing for me to able to do and had to really be worked around.

    I did do that tank job but it was a once of thing, certainly not a regular on the feet thing. I think most of us can put in effort maybe to do something once and be resting afterwards. As I currently do more standing when taken out to the shops to do a basic food shop in my week (which I fit into my pacing, I dont use a wheelchair the whole time Im out shopping just some of the time), doing that tank thing where im standing for a few minutes and in the way i did it, doesnt at all conflict to anything Ive said.

    Standing to do dishes is a regular thing and something if I do I do get sick with cause of the time it takes.. its either doing the amount of time I spent on standing with the tank many times in a day or doing it for a lot longer time in which I cant handle standing, ,it really adds up if standing doing dishes, if one can only be on ones feet for a limited time per day or otherwise have ones OI badly affecting (it takes time of laying for me to recover from short OI times standing). Yes I could do my dishes several times a day and be standing but from that, I'd be sick all the time so it makes it not worth it to do as I dont want to be having to spend the rest of all my day in bed cause of it.

    With dishes too, concentration is involved so its a completely different activity, try to concentrate while ones head is spinning. (I often break glasses when doing dishes if I get a headspin or just due to poor concentration due to lack of blood getting to my head when on my feet standing and end up with a sink full of glass or glass all over the floor. Hence that is a bad thing for me be doing). I end up in huge mess when I try to do dishes (actually last time I tried, I droped a big pot I had filled with water, all over the floor), the time before, I broke a glass. That tank job was a easier thing for me to do.

    Yeah. I thou if you read my posts had some help to do the food, my support worker made the soup. I did put on a roast (with the veg not peeled). I did make a simple curry days in advance and freeze (I made some for myself to eat that night for dinner too, just made a big lot up). It took me a whole week to get that food ready with also the support of my support worker.

    I only had that housewarming party as it was suposed to be a WORKING BEE to get others to help me get settled intot his house and help me do the things Im not managing to do but it backfired, I went to much effort all week to organise easier things to cook (and hence did not much else that week) then my familly let me down and didnt help. I then of course had to recover from doing that. Im still trying to get done the jobs in which I'd be hoping my family would help me with when I invited them all over.

    I do manage to do a lot of things but not regularly, its only due to the help I get and I only do what is necessary to hopefully make my life situaiton better. Sometimes one has to go to great effort to try to get the help one is needing which may involved inviting a lot over to ones house to hopefully have them help you.

    "You cannot walk from a building to your lift at times"

    I dont have a lift here so I dont know if you are confusing my posts with someone elses.

    I do thou have collapses after Ive done too much and cant walk then at all. This has happened various places eg in the doctors surgery (she wanted to call an ambulance, that one was probably due to perfume exposure in the waiting room), after getting tests done, in the shopping centre etc are all places Ive colapsed in this year. Collapses only happen to me after exertion or when Im exerting myself, TILL I GET TO THAT POINT I CAN DO THINGS eg like spend 5 mins or so fixing a tank (in which half the time I was kneeling). Of cause it is very unwise for me to be doing things eg dishes, till I get to that point.

    [/quote] You have the ability to care for an animal, with all of the feeding and litter changing involved yet are saying that you cannot even look after yourself. [/quote]

    I may of killed my last cat due to my ME when I became bedbound as I was too ill to care for a cat (I almost died myself). Ive waited or YEARS till I got weekly home support in place before I could get another pet thou I love animals and get very lonely for that reason of my other cat not being fed and ending up dying. So I know if I go bad and cant get out of bed to look after the cat, that it wont starve, my worker will show up and see there is bad issues, (I have people in 4 days per week to help.. my boyfriend 2 of those days).

    I also purposely dont own my "own cat" but rather foster so if I crash and it looks like it is more then a short crash, I can hand the cat back to the foster agency as it isnt my cat. If someone judges me on that, that is very poor of the person seeing I cant even keep a cat of my own in case I crash bad again. EVerything I do, has been carefully thought out.

    [
    Note my boyfriend does not take me out to do fun things, he functions as my carer, trying to sort out things (he's been picking up things for me from all over the place.. in the past week going to my physio picking up special pillows for me to trial, picking up things I cant get but really want or need etc etc.

    I rarely get to visit family members.. I even recently missed one of my grandsons 1st birthday which all the rest of my family went to as no one wanted to go out of their way and pick me up. My family rarely visits (even if my family was visiting more, that wouldnt make me less sick!!). I havent seen my daughter for about 2 months (I was hoping she'd visit the other day but she didnt). My sister vists me about once every 3-5 weeks for about half an hour. I dont think no one could knock me for that. Most of my famiily was only here for that housewarming party which I arranged as it was supposed to be a working bee to help me and havent been back again.

    Yes I do have my boyfriend here a couple of afternoons a week (note we dont get hardly any sit down and simple nice chat time while he's here..today he spent his time helping me alter the letter etc, finding the name of the person I had to address it to as I'd lost all my previous letters and couldnt remember who was dealing with my case etc etc, the whole visit is stressful as Im pushing to get things done in the short time he's here) and other then my support workers who while here who do not have time to even sit down with me to chat (the whole time they spend doing stuff), I rarely do get a visitor. So yes I are fairly isolated . I dont know why that so hard to understand by my post. I stand by that a weekly grocery shopping trip out for less then an hour is good for my emotional health and helps me not to feel isolated.

    I thought I would clarify all these things in case someone judgemental who dont understand things is reading this thread.

    Yes people could, but I think people unfairly "judge" all ME/CFS people due to lack of understanding of the illness. Even if I didnt post here, I have no doubt that I still would be unfairly judged by those who dont understand our conditions, the judgements put on me, started well before I started to post my life stuff here.

    It was in fact that I was being so unfairly judged, that I started to write more about my life here, in the hopes it may help people understand how hard we are trying (we arent lazy/depressed people! I hope my posts show that, I will give things a go that most wouldnt) and how much we have to be altering the way we go about things to be able to do whatever we do manage to achieve..

    Nods that is so true but whre does one usually find ME advocates?

    I currently have no metnal health issues at all, I dont even have depression or anxiety mental health stuff going on, Im not even on any drugs for them either (as I dont have that kind of issue). Even when I did have mood issues in the past (they werent caused by mental health issue but rather from hyperinsulinemia and carbs), I even then couldnt get help as they decared their wasnt help for those who had a mood disorder which wasnt depression or which wasnt something like bipolar. I So thou I was getting crazy mood swings and was going suicial at times due to them (even ended up in the ICU for a week after a serious suicde attempt, I stiill got rejected by the community mental health team. (I couldnt even get counselling from them thou I was in great need of it at the time). Isnt that crazy!! I ended up having to seek a private counsellor myself. So yeah even if I was back like that again, I still wouldnt have an advocate.

    Its the fact I dont have mental health issues that I had such trouble getting a Disability pension., 3 appeals before I did as they were expecting those who have ME/CFS to have mental health issues and they kept asessing me and pronoucing my mental health as good. If anything, I can often be being overly postive for my situation.

    yeah, so true and that IS happening. Ive been solwly progressively going downhill all this year since the house move and still are on a slow gentle decline. Its one of the reasons Im trying so very hard to sort out my situation ASAP, my slow decline could suddenly change into a huge long term crash.

    Anyway thank you. I know you werent trying to be judgemental but I truely hope that those who read this thread are open minded enough to see the hardship in it and willing to ask questions on situations they arent understanding (thou I have discovered that those are judgemental will usually stay judgemental no matter what one says!).

    (I just burnt dinner while typing this post, I just boiled a corn beef dryand forgot about it till my smoke detector went off.. my boyfriend was going to ring me to remind me but he must of forgot too , I burnt dinner last night too, I forgot to phone my boyfrined to ask for a reminder call last night so I wouldnt burn it and also left the grill on all day yesterday morning until late arvo.. i only noticed that when I almost burnt my hand as my xylitol container near it I went to pick up, its side had started to melt)

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