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Tania's journal of drug treatments and other ME things

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

  1. taniaaust1

    taniaaust1

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    Today, the Complaints Commission rang me (the new person Ive been handed on to called Christine) in regards to my letter sent over the situation with DisabilitySA (my states Disability service). At this point it sounds like they arent happy with DisabilitySA in regards to my case (sounds like they recognise at this point lots of my human and disability rights have been breached) and she said she was going to phone them and give them "one" unoffical "warning" and if they dont act in accordance they will be giving then an offical warning, something called a "section 30" order put on them.

    She said she had to be very careful not to do case management on my case as the Complaints commissioner arent there to do case management for people but rather to protect human and disability rights and make sure gov depts are doing the right thing. She did tell me that I need to phone the Disability Advocacy Complaints Service of SA and get them involved too (seeing Im needing a case manager as well, Im get confused on the phone when even trying to discuss my complaint). I have rung the Disability Advocacy service before (not sure if it was the complaints one thou? its probably in my posts on this thread here if I did) and they wouldnt help, but she said to tell them I have an offical complaint in with the Complaints Commissioner over DisabiltySA which needs sorting. So anyway, that is my next step on Monday.

    I doubt she read any of the links or info on ME/CFS given in my letter as she said it was her role to protect rights and make sure other depts were doing the right thing. She said medical assessment stuff was done elsewhere.. forgot now her words but the medical stuff wasnt to do with her but they'd consult someone else if they have to in regards to this illness (some medical person they have who works for them or something like that)..

    umm seeing ME/CFS is treated very poor in this state where I cant even get the heating and cooling rebate as it isnt recognised we have issues with heat, I dont like the chances that that offical person is going to know much on ME/CFS. Its probably the same person who caused us to be knocked back for the gov rebate that other illnesses like MS etc get?? :rolleyes: When I got that looked into. What does one do when the governments own adviser doesnt know much on ME? and he/she could end up being the medical advisor person involved in looking at my case? umm maybe I'll be able to find out the name of that person to at least know who is doing the holding back of things ME/CFS wise in my own state. (We need to call on a ME/CFS committee to be set up here to help advise the gov).

    She was extremely nice thou and well aware that Im having big issues getting my needs met and aware I havent been treated right (she could see that just from the time from my first complaint and lack of things happening).
     
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  2. taniaaust1

    taniaaust1

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    Yesterday I finally ordered a 23andME test. Im very much looking forward to seeing what that turns up.

    My CFS sister was going to order one too, but decided in the end against it as she's still trying to go the dr route to find out what is wrong. She was telling me today how she's had B12 deficiency show up before on tests (she's a vegetarian who doesnt take B vitamins). I keep telling her to get copies of her test results but so far she hasnt and just goes "they told me all the other things was in normal range". I dont know how to get throu to her as one can still tell some things at times from within range test results and that it can be very important to get test results and look at them oneself... she still trust doctors would tell her if something is abnormal.

    Anyway.. she's been quite sick with the CFS (spending a lot of time in bed and with pain issues too) and she's finally doing something about trying to get fixed again, so going doctor to doctor rather then just trying to ignore she's sick and making stupid excuses for herself each time she is ("I must of ate something bad") . I do hope her issue just turns out to be the vitamin D deficiency and the B12 deficiency (she takes iron tablets as she did have iron deficiency).
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    :alien: <-- That's my bet!
     
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  4. taniaaust1

    taniaaust1

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    lol. Actually i dont think I will shocked unless not much shows up. I already know I have double copy of MTHFR and already know I carry the celiac gene. Im expecting possibly a lot to show up. I hope I are shocked by very little showing up! I doubt that thou.

    I know there is a gene which is found in Aspergers so will I have that show seeing I have that? Will I have the gene for my uncles condition systemic mastocytosis show? Now that would be interesting (scientists found a gene for that not too long ago). I have breast cancer in my family (2 sorts).. so maybe more genes there and also another rare obviously genetic kind of pancretic? cancer that all 3 of my grandfathers siblings died from.. I hope they know the gene for that. I also have bowel cancer in my family. My daughter seems to have EDS (that's gene isnt it? maybe I carry one gene?)
     
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  5. taniaaust1

    taniaaust1

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    3am . Have woken up again due to my bad throat, slight cough and blocked nose so now up are sucking throaties :mad: (Im very tired so this really sucks) . Thou my viral reactivation stuff has settled and was good yesterday during the day, the viral symptoms are flaring at night now when its cold and damper. Im having to take my asthma puffer in the middle of the night too, tonight that has helped a bit, last night it didnt and I had breathing issues with my chest which felt as bad or even maybe worst then when I was last time in hospital with double pneumonia on a drip for it, so my chest was really worrisome (I truely last night throught I was getting pneumonia again as an after affect of the ME viral flare).

    Tonight I also seemed to wake up due to lack of oxygen (it felt a bit like POTS when my brain isnt getting enough of it but not just that, like the rest of me may of been short of it too. I really do wonder if my oxygen level ditched while I was asleep causing me to wake up feeling like that)..

    Is there anyway to stop this kind of night time flare up which sometimes wakes me when ones body is probably also reacting to dustmite too in mattress too as well as still to do with the ME?

    **sigh** I just finished sucking the throatie and it hasnt helped one bit so it looks like I may not be getting any more sleep tonight as I cant sleep with my throat like this. I can do nothing for this symptom that I can think of :thumbdown: . Ive been back on the larger doses of Vit C and also taking echinacea again since Ive gone back into this kind of flare. I guess I maybe should of brought more olive leaf extract too but that doesnt seem to do much either for the ME viral flares thou if I have a normal cold the vit C often can normal cold virus for me but just not the ME virus thing, whatever this is. (Normal colds and flu tend to be rare for me but not this ME viral PENE thing, triggered by some kind of immune system crash when I overdo it)

    I cant take lemon and honey due to my insulin issue.

    edit.. just now adding garlic and horseraddish supplements and also an indian herb Andrographis panicculata (something new Im now trialing) to what Im taking due to this. http://en.wikipedia.org/wiki/Andrographis_paniculata

     
  6. madietodd

    madietodd Senior Member

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    I've got plastic dustmite covers on all of my mattresses and boxsprings......2 of my kids have asthma.
     
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  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    How about a shot glass?
     
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It sounds like your short and to-the-point letter did its job!
     
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  9. Lynne B

    Lynne B Senior Member

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    Hi, Tania,

    I've been thinking that maybe living in a house independently is not such a good idea for you. Maybe you need to apply for some form of group home or assisted living where you don't have to shoulder all these responsibilities. Your continual collapses while trying to shop indicate that this is also too much for your existing energy levels. In fact, given you need to sleep so much during the day, I'm wondering just how often you are able to stay within your energy envelope. This makes the disability department's requirement that you should be up and sharing the task with your helper seem ever more ridiculous.

    What do you think?

    Lynne
     
  10. taniaaust1

    taniaaust1

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    Hi Lynne,

    Im confused, is assisted living different to what Im getting now with some home support? (I thought what I was trying to do now is assisted living??) .

    A community living thing in which several people are living in the same home, wouldnt be suitable for me as when I crash I can become completely noise intollerent eg the beats of music can be overstimulating/overwhelming on my brain, also due to issues I have to chemicals. I cant be around others wearing them in enclosed spaces eg I react to many perfumes, deodourants etc. My support workers cant even wear those things. (My current home is extremely quiet, away from main roads etc).

    My ME/CF should stabilize if I can get the support Im needing but without my boyfriends help on the other two days a week, I dont think i could survive. (if we brokeup, I'd be in huge trouble). As long as I can get the bit more help and still have his help, I should do "ok" and hopefully start to improve a bit again rather then going the opposite way like I are now.

    (I only sleep all day when Im crashed like I are this week, I still have major viral reactivation from last Tuesday :( (been very sick a whole weak and my chest hurts from all the coughing) cause I over did it then by the shopping trip I wasnt well enough at the time to do), often its thou just needing to stay in bed al day as anything can be too much when Im that crashed, even cant watch DVDs when Im too crashed as its too much. Sighs.. a whole week of fevers and bad cough for a shopping trip :eek: (hopefully I can recover soon, the support workers come today and Im supposed to go out shopping again but not at all recovered from last time). Im going to ask the support worker to ring Helene from DisabilitySA to tell her I still havent recovered from the last shopping trip , its clear Im sick due to all the coughing and spitting up Im doing, not sure how my balance is today, I havent tried to do anything yet).

    Yes my energy energy is being often over extended and hence why I keep crashing and why my condition all year is slowly worsening, I cant have good ME management with the pacing I need unless I get the more support. DisabilitySA doesnt understand the "energy envelope" thing at all and that is the issue. They dont understand I should be stopping BEFORE Im overdoing it and getting sick. I wish I had an advocate who understood ME to speak to them about this and make our states disability service aware of how ME/CFS should be managed. (they probably got some idea of GET going on in their heads and how we should be slowly increasing what we do.. maybe they think they can force me to doing that by not giving me enough support? :( I wish someone could talk to Helene about "energy envelopes" and the need for a ME/CFS to pace for their level of disability so they arent crashing.

    Ive been advised last phone call, by the Complaints commissioner to get an Advocate from the Disability Advocate Complaints Service of SA to help me deal with DisabilitySA to help get them to understand, the thing is Im going to end up striking the same issue with the Advocate :confused: as I doubt very much Im going to be able to get one there who understands ME/CFS either and understands limits, pacing etc. So how on earth are I going to get one person who dont understand, help me make another who doesnt understand? I so wish our states ME/CFS CFS society had a social worker or advocate to help people with this stuff.

    I did ring the Disability Advocacy Complaints Service of SA yesterday as I was told to do but got an answering machine and left a message to ring back. No one has rang me back yet.
     
  11. taniaaust1

    taniaaust1

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    Update on the services

    Im currently waiting on the Disability Advocacy Complaints Service to ring me back.

    Yesterday Helene (DisabilitySA) rang me. She needed to talk to me in regards to the wheelchair application which is in so had a few questions for me eg How often do you collapse", Are you trying to manage your condition by resting before you go out? etc etc. I could hardly speak yesterday (I kept loosing my voice yesterday) so was struggling on the phone, by the end of the phone call I completely lost my voice again (so fortunately the Advocacy Complaints Service didnt ring me back yesterday as I would not have been able to speak to them after speaking to DisabilitySA).

    I brought up several times how I'd collapsed last shopping trip but it was obvious Helene wanted to stick to why she'd rang (I was like she was ignoring my collapse and what I was saying there, she kept on giving no responses). I kept pushing (in my very bad sick speaking voice) as I wanted some answer from her about how stupid it is if Im collapsing while shopping due to being forced to go due to her expectations I do when Im not well as Im supposed to assist the home support. On the third time I went on about it and pushed for a response, I finally managed to get a response that if Im too sick then of course I shouldnt go. (I still somehow need to get them to understand that I should be stopping things BEFORE I get too sick as once Im too sick, Im crashed and its too late. I need to stick to my pacing I know helps stop me from crashing but long term which I know improves my health and enables me to end up doing more).

    Helene when I told her I had viral symptoms from the ME flaring in response to her commenting on my croaky voice, she said that wasnt ME/CFS and that I must of caught something **sighs** She has no idea of the symptoms of our illness. Im going to have to do YET ANOTHER letter, trying to get throu to her that this illness isnt just about FATIGUE but has MANY other symptoms too including viral ones and my current bad cough and fever. I havent "caught" something, this is my ME/CFS (and whatever that unknown viral reactivation is). ME/CFS ISNT JUST FEELING FATIGUED AND WEAK!!! (I feel angry and just want to start swearing, Im constantly beating against a wall trying to get our disability service to understand my condition, their lack of understanding just makes me sicker, more work..another letter to write to them with links they probably wont better to read, more stress).

    She then asked me if I'd gone to the local doctor, to which I had to say no. I know she doesnt understand why I didnt (maybe that left her thining Im not that sick?), I dont know how to explain to her once again that I just cant go to ANY doctor but need ones who are ME/CFS understanding. Yes I should of gone to a doctor for this viral activation as its made me so sick (my chest is still being a big issue) but I dont want to go to one who dont understand that Im sick like this cause I over did it, who doesnt understand that Im sensitive to most drugs etc.

    Till I can find out which doctor others who have ME/CFS in my area go to, there is no way Im going to go to one and possibly get a lot of shit from one, I dont need that emotional stress!! (thou any doctor right now is going to say Ive got a virus of some kind when they hear my cough). I also have trouble in waiting rooms due to the perfume and have tried to get a local clinic to take me on and do home visits but they wouldnt (thou this one did do home visits), said I'd have to come in and see them (last two times I was in a clinic, I collapsed, i do not want to be doing that AGAIN if I can help it.. it wasnt thou at the local clinic).

    I wish our states ME/CFS societies would educate the states Disability dept people who are dealing with me and those like myself. The situation is terrible, how are we (the most sickest group) meant to get the services we need when those who are responsible for getting us support, dont only not listen to us but also know nearly nothing except about what they hear about minor CFS and we have no advocates for support in getting the services. (We need some group working with the gov to fix this kind of issue!! Im willing to be part of such a group if it ever forms as Im only too aware of all the issues). Right now I dont think our gov and our Disability services are aware of the issue as they really just are not aware.

    Im thinking now about how I answered the wheelchair questions and wondering if I answered them wrong. I'd replied that I collapse one third of the time I go out if Im not using a wheelchair (as that is how it is). Thing is I didnt think to say that I'd be collapsing EVERYTIME if I wasnt hightly restricting what I do at the shops, that one thing of the time is with trying to manage things well. I wish I'd been asked "how often do you collapse IF you werent trying to do good managament practices and didnt rest up before shopping etc etc". Cause I do very good managment, it makes my condition look far better then it is!!. People dont know how to ask the right questions to guage the extent of our disability and due to our poor brains, we dont think about how our answers to their questions may be misleading them into thinking we are better then we are.

    She mentioned about putting in for more home support for me but said she doesnt know if I'll get it or not (sighs.. probably cause my condition is being trivalised by people who dont understand).

    She also mentioned that they are going to give me (or maybe it was that she was going to apply for for me) for me to be covered for one medical appointment to the city each month). That's probably less then I need right now due to how many problems I have right now out of control and how many different specialists I see but Im happy with that as I'll try to get my boyfriend to take me to the rest if he can (He's managed to get me to two appointments this year in 8mths).
     
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  12. Lynne B

    Lynne B Senior Member

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    Hi, Tania,

    Sorry to speak in such loose terms as group home or assisted leaving without explaining. I was wondering if there was some form of village like a retirement village where you could live independently but leave your little unit and go to the group restaurant for meals if you want, and where you don't have responsibility for general maintenance, the gardens and so on. Perhaps that's a reality for the wealthy frail elderly but a pipe dream for disabled people. (I wonder how old you need to be to be eligible for government support for a service like that.) I just keep thinking you need someone to mow your lawns once a month, someone else to clean once a fortnight, and so on. I keep wanting you to be able to ring up with your shopping list and have your food delivered. And so on. Dream on, I suppose.

    The issue of educating the disability service about our energy level needs to be outsourced as well. What about the SA ME/CFS people? I gather they are all volunteers but they may have some clues about how to speak to the disability service's advocate. Good luck with it all, anyway.

    (By the way, thank you madietodd and Valentijn for liking my emails!)

    Cheers, Lynne
     
  13. taniaaust1

    taniaaust1

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    Update on my undiagnosed CFS sister

    She tried once again going to a doctor the other day and rang me upset after she did (I still havent managed to get throu to her that she cant just go to any doctor for this).

    When she told the doctor that she was ending up in bed all day and couldnt even get her daughter to playgroup.. the doctors response was to tell her she just needed to exercise and build that up. My sister has already tried that (she took up swimming for 7 weeks, only to have ended up with her CFS worst and in more pain, so ended up having to give it up. (Unfortuantely she's now thinking of trying exercise again after that doctor said that). She's also getting OI when she's on her feet.

    She contacted a different doctor who someone has recommened (one who "may" be okay, Ive once heard a CFS person mention him) but then found out he was changing $140 or something like that which she cant right now afford esp since she currently cant work at all. So isnt going to go there.

    Anyway, I see her situation as well and truely stuffed as I think she's getting worst and there is no doctor she can see. (One of my CFS specialists changes heaps, while my other specialist which is covered by medicare, he isnt taking new patients).
     
  14. taniaaust1

    taniaaust1

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    I probably wouldnt qualify for such a thing IF there is that kind of housing set up in this state? All that kind of housing I know about is for the elderly. I know where I lived before, the garden help services set up by the council, I had to be 55 years old to qualify as a disabled person. (non disabled qualified at 65 or it may of been 75 years). Stupidly younger disabled people, didnt qualify (at just over 40 years old I was way off).

    i do pay for a gardener currently but are just going to have to find a new one I think as my current one hates gardening and is letting me down (he did this last time I needed weeding too, avoided it), my front yard is currently BAD!! I cant really afford to pay more there but if I have to for the gardening on top of the usual lawnmowing I already pay for, I will do (thou it means I will be even worst off in paying for other things in my life). Due to PENE, I havent yet looked fully into help in this area Ive been so busy dealing with the other things with DisabilitySA etc. so the garden issue has been put off.

    My out of control front garden right now (Ive been expecting that I'l probably get in trouble with this soon with the housing authorities).

    There would be those online food ordering shopping services where I live now (in my old area there wasnt any at all but Im now living in the city so their should be). I currently do like to go shopping for the social aspect of it and just so I get a break from being in the house (seeing I cant do something like go for a short walk outside by myself and the rest of things people often take for granted, if I had a scooter thou oneday, I'd be able to then get out myself at times). Umm you are right, the other day if I'd sorted out where to order from etc, right now I have no idea at all,, I'd have to investigate all that I could of ordered that shopping that day.

    I dont know thou if one could ring up with shoppping list and then have it delivered?? (I'll try to remember to ask that today).

    Ive tried to SA ME/CFS society people and they have been no help at all.. all they can really offer is emotional support (which doesnt help me as Im needing "practical support", emotional support doesnt help any of my big issues). A couple of years back, one of them thou nice, really upset me when I was almost crying on the phone about my issues as the response back was "We need to wait and just be patient as one day things will change"... at that time I was even worst then I are now and missing many more meals then I do now and truely fearing for my life.. so that response, well was very upsetting that comment.

    One cant just sit back and have patience when life needs arent being met, I was in crisis and still are some. Ive had counsellors, Ive had psychs..and they cant do nothing for me as its not the kind of help I need. The comment the one from the SA/CFS society made to me on the phone, the lack of understanding of severe ME/CFS and what Im experiencing here, made me feel even worst then before I'd rang. (there is a huge disconnect between those who arent that sick and are "able" to get by in life with those who are too sick to get by without support).

    The one from the society who runs the support group in the region Im in (he's a very nice guy who hasnt said anything stupid to me).. has talked about possibly helping me get to one of their support meetings so I can try to find out if there is any okay GPs around my area suitable for me. I thou missed that meeting (they are only every 6 weeks) as I didnt get back to the person with an email so he could put me on the email list (just been too busy and struggling with everything else to have done that, I keep loosing my email password too, cant currently get into my email again). Last week thou I finally did get to email that person back so now are on their list and hopefully I can be helped to get to their next meeting so I can hopefully sort out a local GP for myself. **fingers crossed** its hard to sort out things when I have so much which needs sorting out. I asked him if he knew any others with severe ME who get services etc, he didnt know any severe ME people.

    The SA society was also going to look into the discrimination (the knockbacks I got just cause I have ME/CFS) over my electricity rebate. towards the start of the year (when our gov decided that ME/CFS people dont qualify, they decided we dont have any issues with heat, thou I think FM people do get this rebate).. I spoke to them via phone and also sent them the copy of the letters to me about it etc but then didnt hear back from the ME/CFS society so dont know if they did look into it or not. Not hearing back from them thou may of been my own fault,, I dont know, maybe I missed their email, I often get overwhelmed with emails and miss them (or maybe they didnt reply back, I did thou look for an email back). I'll chase that up too at some point but not right now when Im dealing with all the other crap

    I probably need to try to contact the person from the "pathways" group again and see if she will be willing to advocate or something for me. (she wasnt any help last time I rang her, she just suggested I take potassium to which I now make sure Im having).
     
  15. taniaaust1

    taniaaust1

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    The Disability Advocacy Complaints Service of SA http://www.dacssa.org.au/what_we_do/advocacy_services/index.html still hadnt rang me back so today I rang them again and this time fortunately didnt get an answering machine (not sure if I rang the same number or not as I lost the other number I was given to ring so had to look them up online).

    Anyway.. they said the DACSSA will lodge a formal complaint and that someone will ring me back in about 10 days to discuss it. I guess my biggest complaint at this point is having someone who dont know anything about ME/CFS dealing with my case so hence having no idea how ill I are, hence why I see Ive had so much trouble at this point and are still waiting to get the extra services actually happening. I also are complaining about not being given an actual ongoing caseworker

    One thing the DACSSA said is that they dont provide ongoing support and only temporary support (so hopefully I can use them to help get me get ongoing support).

    Its now been 8 days since I really overdid it with that shopping trip due to what Helene had said and Im still sick from it.. can hardly speak at times (very croaking and loosing voice),coughing (at times now coughing streaks of blood as Ive been coughing so much). At least now the fevers it caused have stopped.
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Your a trail blazer tania. Im sure many others would just give up dealing with all the BS you are going through with trying to get support. You will probably change things in the future for the better for others that follow you.:thumbsup:
     
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  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I would expect the advocate to become informed on the situation of the person s/he is advocating for. Maybe you could point her/him to criteria and/or a treatment guide to read. I do not know which one(s) would be best, but someone else might have suggestions.
    If they get you a wheel chair, sufficient support hours, transportation to medical appointments, and whatever else you need, you should not need ongoing support.
     
  18. taniaaust1

    taniaaust1

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    There hasnt been a time since Ive had this illness in which I havent been getting into issues somewhere (Im probably about to get into trouble over my over grown lawn and cant currently now afford to get gardener to do it as I had another thing break down today (so now I dont just have my washing machine to be fixed). I also need someone helping me advocate with doctors too (I dont have a good specialist, I have okay ones but they are ones which believe in the PACE trial) and others who deal with me eg the support Agency Ive also had a lot of issues with thou hopefully things there now are sorted.

    There is a lot of things on my support contract which arent currently suitable eg my support workers arent allowed to take me out of my suburb even thou it has no hardware store, computer shop or a ton of other shops I sometimes need (those things are actually not far away from me but rules on my current contract are stopping them being able to take me). Im focusing on one group of things at a time.

    They say they will allow to take me out of suburb to the city for medical appointments now (ONCE per month) but that other thing will have to be brought back up again. (at the once per month rate, its going to take SIX months to just catch up with one appointment with each of my specialists, some of them like to see me every few months as we need to get my treatments and dosages right). But at least I will be able to get to appointments I need to go to occassionally thou its going to be hard to get all over current way out of control health conditions in check at that rate.

    I often run into trouble with basic life stuff which I need support for eg This year I ran into trouble with electricity company (my boyfriend had to sort out as I was too sick to deal with them) etc etc. I really cant deal with much stress (my adrenals are shot, Im on adrenal adaptagens but they dont seem to be doing much). When Im too stressed, I emotionally melt down with my Aspergers.

    While my boyfriend is around yes he can deal with those things but I dont know how much longer we are going to be together as Im trying to leave him due to him being married but cant do unless Im able to manage or have all the basic life stuff managed in some way. This kind of management isnt something my home support workers do but something I need an ongoing case worker for so I can get some help when something is being too much (or otherwise I end up in huge shit!! eg in the past I had the tax dept come down on me cause I wasnt able to keep records and I had such a melt down due to them threatening to fine me for things I couldnt help, I melted down to the point that I actually threw things at them.. I completely melted down cause I was feeling so sick and couldnt get them to understand and just couldnt handle that level of stress with the threats I got due to lack of understanding).

    Ive also had issues with the housing trust this year (the gov agency my house is throu) which I wasnt capable of sorting myself and needed an Advocate or case worker for, I wasnt even managing to talk well to the lady on the phone so in the end she had to deal with the issue throu my boyfriend (she actually refused to continue speaking to me as I was having such trouble understanding on the phone and had to get her to repeat herself so many times (I have central auditory processing disorder which if flaring makes it extremely hard for me to focus on a phone on top of the other things the ME has done..she had no patience to deal with me and just got to the point where she wouldnt ring back and explain).

    Whenever I have to deal with the gov depts, I need advocate as Ive found time and time again they dont listen, they expect me to get in for appointments or place other demands on me which Im unable to meet. My disability allowance could also come under review at any time (I was told that would happen in two years and its overdue for a review).

    When Im having to deal with so many different agencies all the time, none who understand our condition and while I dont have good doctors really supporting either, I cant imagine going a long time without needing some advocacy or case worker support. (there is also the huge risk I could get completely bedbound again too and hopefully I'd have a case worker in place if that occurred as I'd sure be needing it as all my current contracts would need changing etc. Overdoing it or say if I catch somthing which triggers my illness off more, easily could do that to me and possibly for very long term. My body is like a walking time bomb, I know the health I have now, I may not have tomorrow.
     
    Little Bluestem likes this.
  19. taniaaust1

    taniaaust1

    Messages:
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    Sth Australia
    Update

    Things are moving along today, my test kit from 24andME has arrived.. WOW!! that was fast to Australia (I thought it was only 6 days ago? I brought it).

    I just received a phone call to do with the ME/CFS study Im in, they are going to come and pick me up Monday to take me to the hospital to interview me, to make sure Im suitable for the study (umm that may be good as if Im still coughing badly by then I may be able to get something for it, from the CFS specialist who will be seeing me then).

    My support worker rang DisabilitySA (Helene) on Tuesday and left a message as she wanted to discuss with her about my collapses and the trouble they are having with me at supermarket due to them and of how Im sick now due to that last week, Helene thou still hasnt ring her back yet (2 days later).

    My gardener hasnt rang me back either (Im going to have to try to get another one), thou now Im not going to have the money to be able to get my garden done as something else important has today broken down at home (so now I have that on top of the washing machine to get fixed)..

    Here's some photos of the current bad state of the garden which Im expecting Im going to get complaints over soon and in trouble with the gov housing authority if I cant manage to somehow sort it out. Things are out of control. Today is the first day for the past 9 days in which I have been well enough to be doing anything about the house again (thou Ive been up since 3.30am due to all the coughing). It felt good to be able to do a couple of things again even if they were small things and I managed to cook myself a meal (first time Ive been able to cook a proper meal since this crash starting 9 days ago)..

    [​IMG][​IMG]

    the yellow flowers arent flowers but weeds. the weeds are over knee high. There are full grown rose bushes in that mess which you cant even see due to weeds.
     
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    I am glad that you were able to cook yourself a meal. :thumbsup:
    Could your short-term advocate arrange for a permanent advocate or case worker for you?
    Are there any youth organizations, such as scouts or church groups, that would clean up your garden as a service project?
     
    taniaaust1 likes this.

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