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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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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    The other since the disability adovacacy place and also my case worker Helene from DisabilitySA ring me, they've both rang me back again since. Ive thou confused both those phone calls so dont know what was said to me (I just cant keep up with it all, the calls back and forth). I "think" Helene told me to hold off again ringing Gale to make an appointment but Im not sure :alien: . Ive no idea what the other told me either.. so now Im confused if she made a time for a home visit or not and dont have a clue what is going on (Im often struggling to take in the info while people are telling me on the phone, I dont think noone is realising just how hard phones are for me. I know I have a home visit sometime from someone..either Friday or Monday (cant remember which).

    It would be impossible thou right now with all the constant phone calls back and forth between different people and me and with each other, to keep track of it all by letter writing as that would just slow everything constantly going on more. Being housebound, I also cant just get out to mail something but have to wait till my next support time is (and often loose the letters Ive done in the meantime!). We also often run out of time when Im taken out shopping to have time to post a letter that's if Ive remembered to bring the letter I had to post with me. Im currently confusing tons of letters I have here I've typed, I must currently have about 10 or so here, not knowing what has been sent and what are copies of ones which have been sent. Its a complete shambles. Im not capable of doing all this. I can not keep up with it. I cant even keep my head up with the phone calls let alone the letters.

    My elderly friend used to do all this organisation for me as I couldnt do it, he'd keep records of what was going on where, who'd I'd spoke to, what had been said (I used to get people to speak to him) but now due to his age, he's developed memory issues too and its just as hard for him!! He's just as bad as me now. (I havent seen him for a month as he's been away with xmas and now has family from interstate over ..so things are really fully apart here)

    Anyway before I loose the note Ive just done about a phone call I got an hour ago.. I have an appointment on the 23rd Jan Thursday at 2.30pm with Dr Allan Gale. His secretary rang me and said he'd told her to get me to make an appointment with him. I was like "you sure? I think Ive been told to hold off of making any appointments till an getting to an appointment application has been approved." I know its been or should of been put in as Helene was doing that. She just said again that that is what Dr Gale had told her to get me to do.

    So anyway I made the appointment as he wants (and Ive been wanting) and hope he's said that due to he's spoken to Helene (if so he knows more about what is going on then I do) ..or not.. its going possibly end up being another appointment I wont be able to get too. (It makes it all the more harder when you are dealing with someones secretary and they cant tell you what is exactly going on and couldnt tell me if he'd been told to do this with me by Helene/DisabilitySA).

    One problem thou with the appointment was the skin testing I need done is only done by his nurse on a Tuesday and Thursday which is when I get my home support for my dishes/shopping. So this is going to mean that all my home support stuff is going to screw up once again as usually the home support agency who doesnt have enough workers in my area *, cant refill my time before the end of the month and hence I then loose my home support hours due to DisabilitySA having this ridiculous rule on them in which I loose them if they arent all used by the end of the month. So a doctors appointment in the last two weeks of the month means I loose home help time. Who in the heck makes the ridiculous rules at DisabilitySA? Im coming under). I'll see if Dr Gale can talk to DisabilitySA about this to stop me from loosing my support hour time.

    I'll also ask Dr Gale if he can talk to DisabilitySA again as thou he was going to ring them and tell them I NEED to go to him, I doubt very much that he knows that they've turned around and made me use my needed Dr Del Fante appointment to see him instead. I wonder what he's going to think/say when he hears they've taken my other needed appointment away.

    * Im still awaiting for DisabilitySA to sort changing over my support agency to a better one (something Ive been trying to get happen for past 6 mths) .. one who has more workers where I are so more able to deal with when I have no other choice but make changes to my support times. Helene was supposed to put in the application for that a couple of weeks ago if I can believe what I was told (thing is I think Im having issues with the unseen and unnamed person who is her superior who has to approve all the contracts she applies for).

    Please Please DisabilitySA start being reasonable with enabling me to get to my medical appointments. If someone reads this and hasnt seen my petition about the states disability org neglecting the disabled eg me as far as medical appointments go http://www.thepetitionsite.com/802/...bled-patients-to-needed-medical-appointments/ Id appreciate it greatly if you'd sign.

    Irronically cause I cant get to my appointments, my doctors due to not seeing me for so long cant then do vertifications on how Im going to DisabilitySA, so I then cant get the professional backup I need eg Dr Gale and Dr Fante etc cant write a report on my health right now as he hasnt been able to see me for over a year etc. I not just need managment on my various conditions from my various doctors but I need letters from all my doctors on how I are right now if I have any hope of getting the home and care services from the states Disability org.

    By stopping me from being able to get to my doctors, the disability service can use the excuse of "we didnt have enough info to have put things in place earlier" when I complain about not getting the services I needed sooner. I know they are going to use that excuse and get away with all the bullshit and bad treatment Ive had fromt them but its them who have caused that to happen by depriving me from able to get to my doctors to get the info they expect from me (seeing they wont just believe me). How's someone not getting to doctors going to have full current, up to date medical documentation? Their expectations are illogical!

    If the states disability org cant even get their head about someone being too ill or disabiled to get themselves to doctors without help.. what hope is there.
    ....

    I have a massive headache right now.. Im tired and probably also partly due to stress too over all the DisabilitySA crap (its certainly impacted my health negativity). Due to the bad headache, Im wondering and stressing on how Im going cope with the support worker here with it if its not gone by then. The thought of someone in my kitchen sink banging dishes around is quite terrible to me right now (the noise of my fingers hitting keys on my keyboard are bad enough).
     
    Last edited: Jan 8, 2014
  2. taniaaust1

    taniaaust1 Senior Member

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    I was quite sick today as if I'd over doing things but I dont know why as I didnt over do it yesterday or today. I KNOW I didnt overdo it. This is a big worry as this could mean its now worsened to the level in which I will no longer have any control over getting very ill or not.

    I had headache and felt very ill all morning and was still very sick when my support worker arrived (her first comment was on how bad I looked!). I ended up dosing myself up on panamax (panadol) and asprin and sent her down the road to buy me a subway salad (with double meat) and strangely after doing all this I suddenly, strangely very suddenly, it happened before I even finished the food was feeling better as far as feeling all over ill goes and the nausea went (still had a bit of a headache thou).

    I'd already taken my BP (as Id been wondering if that was up to high so making me feel sick), taken my blood sugars but they were fine too and I'd already eatten an hour or two before she came but that hadnt helped me to feel any better (thou I was in breach of my diet as I had 3 small crackers.. which I had with cheese and tuna), so I dont know what in heck was causing me to be soo ill and why I picked up so fast after starting to eat, I wouldnt thought those pain killers would of fixed up all over sickness either. (Maybe my two specialists are right and I shouldnt be taking things like crackers but surely the 5g carbs that had wouldnt have affected me THAT MUCH?.. I was sick before that anyway..but just was getting worst and worst).

    Thank god my support worker was coming (previously been dreading that due to my headache) and got me that subway salad (that may of been what fixed me?).. anyway. its a mystery. All I know is I was dreadfully ill. I thou wiped out within half an hour of her leaving from her two hour home support visit (so only got 1hr of enjoying feeling better) and then was falling asleep trying to read posts on this forum so then had to go to bed. I ended up sleeping for 6hrs (3pm-9pm) so have now only just woken up.. **sighs** I hope that doesnt screw with my sleep tonight but I just couldnt stay awake.
    .................

    Ive just started looking throu DisabilitySA policies I found online http://www.sa.gov.au/government/entity/1856/About us - Disability SA/Disability SA - what we do/Policies and guidelines#transport for stuff I can use or which could make more sense of the trouble Im having with them.

    One statement in their policy which has caught my eye is "Some conditions are not considered to be permanent and therefore not considered to be a disability". http://www.sa.gov.au/upload/entity/1646/DAC documents/intake/sector-wide-policy.pdf This statement got me wondering seeing I never got granted disability for my severe ME/CFS (thou ME/CFS specialist letter which got me onto their service) and rather got granted it due to my Aspergers which is mild (does that make sense? nope).

    It makes me wonder if they've got ME/CFS on their list of conditions not considered to be "permanent" so cant qualify for disability services here? Is this what happened? and hence my ME/CFS issues arent counting much with them? and why noone else with ME/CFS can get disability services. (Dr Buttfield, previous CFS specialist told me that in the past, it was useless trying to get support from state disability service as he'd tried to help many others with severe ME/CFS get this support in the past but they were all knocked back. It was like a miracle at first when I got the support.. it annoys me to know now that it wasnt due to the ME/CFS I got it.

    This needs to be found out and if its correct.. someone needs to make them (state gov disability org) change their policy in regards to ME/CFS or those with this will never get services. This org is the one you need to go throu to go funding for all the other orgs in the state for services, so without this orgs support, you cannot access others eg home support services etc




     
    Last edited: Jan 9, 2014
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    You can keep a pad of paper and pencil or pen beside your phone. When someone says something that you want to write down, say "just a moment while I write that down". When the convo is over write down who you were talking to and the date (and the time, if you think it matters).
     
  4. golden

    golden Senior Member

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    Clear Light
    I have been unable to get any medical help. So you are way ahead of me.

    Tony looks like an honest guy on his photo ..... i expect
    he has to be .... and he seems to be cutting edge?

    Hope someone 'professional ' can back you up and support you.

    Excellent ideas with the petitions. :)
     
  5. taniaaust1

    taniaaust1 Senior Member

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    "When the convo is over write down who you were talking too".. Ive usually usually forgot the name of who I have on the phone even if I go to write it down immediately after the call. (At times I have to ask 2-3 times for names again while speaking to someone).

    My brain is so bad that I need to be writing EVERYTHING down while the convo is still going on and Im not fast at writing things by hand (always been a slow writer who struggled to keep up at school and couldnt keep up with writing my notes with lectures in collage either.. before I even got sick).

    People have in the past got annoyed at me at the convo becomes all disjointed if I'm stopping them to write down every sentence they say. (The gov housing people last year got so fed up with how much trouble I was having with them on the phone that they even left me out of what they were trying to sort out with me one time and just asked for my friends name so they could deal with my stuff throu him instead.. I was annoyed with that one as I'd wanted to know what was going on and my friend didnt then explain it well.. so in the end.. I was left confused and just had to leave the whole thing and just then hoped that whatever my friend had worked out with my rent people was something I'd agree on).

    I find if I just take short note (so not to have people waiting for too long).. like just reminder words while on phone..after phone call I usually dont know why I wrote what I did after the call .. I need to write every detail of a phone convo down. Its a nightmare. I also when Im writing things.. I write in completely wrong words so so on reading something back it then doesnt always make sense (I do this when I both type and when I write by hand). eg I even have trouble writing my shopping list due to that.
     
  6. brenda

    brenda Senior Member

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    Tania

    You can buy small recording devices which will enable you to record official calls (after asking them to wait till you put it up to the earpiece). Then you can take your time to write down who and when the call came from and listen at your own pace and reply when you are ready.
     
    Valentijn and taniaaust1 like this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Today.. Heat, collapses and a now a dangerous broken shower screen

    Today was very heat here, a day in which I knew I shouldnt at all be leaving the house but if I didnt today, it would of meant my shopping didnt get done at all as today was the day both my workers come to take me (and the agency and my contract isnt all that flexible with things).

    We get to the supermarket (after a battle to get me organised, I forgot shopping bags and had to be reminded as per normal, couldnt find the important thing I had to post so had to give up on that and was forgetting to put things on my shopping list).

    I thought I was okay to walk the 15m from the disablility park into the shop while my support workers were organising my wheelchair. It turned out to be the completely wrong thing for me to have done.. I collapsed right in the supermarket doorway and couldnt get back up.. I couldnt even be sat up. So there I was..blocking the main door.

    When I finally was okay enough to sit up and try to drag... pull myself into my wheelchair.. I collapsed again and got all caught up in the feet part of the wheelchair. I had bits of me stuck under the feet part and bits of me stuck under it.. I was tangled mess. Im not sure how my support workers got me out of the mess (I wasnt with it) but they may of had to dismantle parts of it to retrieve me (while at the same time trying to fend people off who all wanted to try to help).

    I wasnt in a good way at all but we had to get my shopping so once I was in the wheelchair my support worker helped wet me all down with the drink I'd grabbed out of my fridge just before leaving home (must of almost looked like I was having a wet t-shirt competition in the supermarket). After half an hour being all wet.. I was more back to normal.

    Anyway.. after all that .. we ran out of time to do all my shopping. Fortunately I hadnt used all my support hours this month due to the public holiday which had fallen on one of my normal support days (my workers dont work on public holidays), so I was able to ring the home support agency and for once they (they are getting more efficient!!) put me onto another cause the person I usually deal with wasnt there, who then granted permission for my support workers to stay an extra half hour and use up the time owed to me. So we ended up being able to do all the shopping.

    I got home and a short time late was falling asleep due to being wiped (it was only about 3pm). I ended up waking up sick as I'd got to hot where I'd fallen asleep (my aircon is at the other end of my house then my bedroom.. and where the aircon is..is the room that's got boxes in it still from my move). So I headed to the shower to try to cool down but as I'd got overly hot while asleep I ended up collapsing before I could get under the cool water and slammed in the collapse into my glass shower screen and broke it.

    So now its very dangerous and I have yet another problem now to deal with :( .. its never ending. Today I havent been dealing emotionally with things well either.. the constant strain Im under due to being so ill is really starting to affect me greatly emotionally. Today I wanted to hurt myself and wanted not to be here. It really feels too much trying to deal with all Im trying to do with and going throu so much without enough support.
     
  8. taniaaust1

    taniaaust1 Senior Member

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    Nods yeah..and that is exactly what Ive wanted to buy for years and really do need. I havent seen one yet in a shop.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    I forgot to add that I have concerns for my ME/CFS sisters primary school aged children (and a preschooler) now too... they've all been vomiting on and off for 2-3 of weeks and we dont know what is wrong with them (one of them threw up in church in xmas day and the other did one the way home but they'd been having trouble for a week or 2 before that.. the rest of the time they are healthy except these sudden bouts of vomiting.. its strange). Ive told my sister to take them to the doctor as this needs to be figured out.

    My sister thinks they may of caught some kind of unknown stomach bacteria thing with her ME/CFS. (Her husband thinks my sister has given him something too.. as he is now getting allergies, something he never previously had).

    We really need to work out what is going on in my family...what the reacting virus which affects me and gives me a cough is?, what bug my sister is carrying which affects her tummy and has given her food issues? ... and now what can be affecting the younger kids?. Im worried we may be soon having the next generation of my family come down with this illness (we already have 4 affected family members with ME/CFS)
     
  10. brenda

    brenda Senior Member

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    @taniaaust1 search for Dictaphone on Amazon.com.au
     
    taniaaust1 likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    Thanks brenda. I didnt know what they were called.
     
  12. taniaaust1

    taniaaust1 Senior Member

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  13. brenda

    brenda Senior Member

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    No that one is for an android.
     
  14. taniaaust1

    taniaaust1 Senior Member

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    ohhh.. I cant my head around what im needing.

    This is why I dont like ordering things online as Im so often screwing up things.. right now I have two purchases here in which something has gone wrong with and I need to sort out (try to get my money back on if possible..one of those was a $50 purchase other was a $20-25 purpose). Ive already had to try to get another involved to sort out the mess with the $50 thing I brought and its still not sorted out, with my friends email to the company they said they'd sort it out but still havent and its been a couple of months. (I may have to contact consumer affairs again and see if they can sort out my mess).
     
    Last edited: Jan 14, 2014
  15. brenda

    brenda Senior Member

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    An android tablet like an iPad.
     
    Last edited: Jan 14, 2014
  16. taniaaust1

    taniaaust1 Senior Member

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    Im not up with tech stuf brenda.. my brain isnt taking in new info well. Im not even sure what an iPOD is .. I just know its some kind of phone thing and didnt know what an andriod tablet is either.

    I'll try to sort it out tomorrow as I had far too much stress yesterday and need to give my adrenals a rest today.. its stressing me out just trying to work this recording thing out and what I need to get, worried I'll buy a wrong thing again.
     
    Last edited: Jan 14, 2014
  17. brenda

    brenda Senior Member

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    A tablet is just like a big cell phone that accesses the internet but doesn't make calls usually. I use one as well as my PC. Its great to use in bed like now.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    So a tablet is a computer?
     
  19. brenda

    brenda Senior Member

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    Yeah, but it does not do some stuff a pc does. It is a bit harder to type on as well but the auto correct can be quite funny as in dire rear on the puppy thread eh emma:)
     
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It would be good if you could get a campaigning journalist to do a piece on your situation. Have you tried writing to any TV or radio programmes that do investigations/exposes of abuse/neglect of the disabled?
     
    Little Bluestem likes this.

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