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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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    Update

    Kerry from Disability services (DisabilitySA) rang today. Its the first time Ive spoken to her since she made up that lie about seeing me walking down at the shops with my friend. Turns out the lies go on.

    Todays lies to me, she told me that I told them at that meeting I had ages ago I didnt want any more support!!!! (how ridiculous is that lie, when Ive been fighting the whole time to get that). To that I said to her well I have that whole meeting on tape (as that was the one I taped cause I dont trust them!!).

    She then goes "that's illegal". (well I got to darn do something to protect myself from their lies, sighs thou seeing I illegally taped the meeting, it probably cant be used in court to prove the bullshit they are doing). Anyway, that seems to be the their latest plot to say I knocked back the support!!

    She also told another lie but unfortuantely I couldnt keep up with what she was saying as I tried to note things she was while on phone, so have forgot what the other was. But anyway, this lying of Kerrys from there (trying to make everything out to be my fault, eg you knocked it back), is shocking.

    This being said, she actually was listening to me some for the very first time today (thou still struggled but maybe I got throu to her at the end as she had a few pauses). I dont know but I may of got throu to her today how they are responsible for me being so sick now (she kept on misunderstanding my health stuff but I thnk we cleared up some (I was so exhausted after this phone call which was probably an hour long, that I ended up spending the rest of day in bed and only was able to get out of bed tonight to come here to post).

    What was very strange as I know Ive given it to them before, she said she had no record of my dietitian Franke who specialises in the field of my insulin issues and is wanting me to see thier dietitian (Im so fed up with them vanishing all the stuff Ive given them, vanishing what doctors and specialists I see, so anyway, Ive had to give them the name and the phone number, YET AGAIN). And Im going to make sure I phone my advocate tomorrow or next day and tell her that Ive had to give disability services this yet again (I do not want them lying and later on saying, they didnt know and I didnt do this)

    She read me out what ones they did have and it was ones from 3? years ago when I first joined their service (but was at different branch). Helene and her as Ive sure I gave a list of ALL my specialist at that last meeting, vanish or loose so much of my stuff. I think that is done as they want to ignore everything except my Aspergers!!! (then they can turn around and lie, saying she didnt tell us that).

    I now have a sore throat, one of my real ME warning symptoms of possible impending ME crash coming on (something which dont happen often as I usually crash with the POTS side of it). (I probably shouldnt be here).

    She's suddenly wanting to help me me more and FINALLY trying coming up with some options which sound more suitable for me.

    - She told me it could help me financially if I got the state concession for disabled people on my electricity from the gov. (Im confused about that as I do get a special concession for having a health card and being on disability pension but she's made it sound like there is another concession on top??? ***confused***

    - She's told me they have a Tenancy support person who she wants to come and see me, so I said that is fine. (Im still a bit confused what that person does, she was going on about house organisation cause of my Aspergers. Sighs, its my ME memory issues and just simply not being able to do things which is causing me the big issue so I dont know if that person will be any help to me at all. ah well I'll see.

    - She wants me to contact the adult manager for the Autism Society, Lesley Cutts (Ive not a clue how that person is supposed to help me).

    - One thing she said which I know would be an actual help to me is an organisation called "Sorentocare" who does meals and delivers them for a small fee of $7 per meal and apparently can cater for special diets.

    - After I told her of my latest health issues eg the very high BP of over 190 I had in hospital last time (I thought my advocate had told her all this?? I dont understand why my advocate hasnt in her letters to disabilitySA).. she this time agreed I need to go back to my GP and has given me 3hrs of extra time to do that. (its like getting water out of a stone, my health has to be at SEVERE risk/ life threatening risk before they agree to help me get to a doctor for a ONCE OF appointment).

    - She's talking about me getting an electric wheelchair or scooter so it would only take one person to take me shopping. (Now that would be a very good idea!). FINALLY they are thinking of some sensible stuf to help me.
    ................................

    Anyway right throu the phone convo, she kept on bringing up the Aspergers!! over and over, Im so fed up with it, another thing she brought up was me having anxiety.. she completely ignores the fact that the only anxiety I have is over these services which are screwing me around and due to not getting my needs met.

    oh another is she asked me if I'd used my 4hrs extra unpacking time yet. Im like "what?, do you mean the 4hrs which didnt get used from my 6hrs cause of me changing agencies and hence got just transfered over from the other agency?" . She's like no, we gave you more and Im "what!!" well if that is so, no one has told me at all! She goes, "the home support agency were supposed to tell you".

    OMG, Disability services if they've granted me extra time they could of at least told me or sent me a letter about it or told my advocate who is emailing them all the time over me. (anyway, its another thing I wonder if is true or not, she's probably refering to the 4hrs from my original 6hrs, the only time Ive had all up for unpacking).

    oh another comment of hers today "Have you looked at psychology?" sighs, I suppose that one is over me keeping on bringing up that I have ME/CFS which is causing me issues.

    Anyway, I'll now wait and see what forms I get in the mail to apply for things.

    oh and she wants to come shopping with me as she doesnt understand why it takes two workers. To that I said, "no way do I want to be alone with you due to the things you make up!", to that she said she'd only be there when my support workers are. (Im truely still not wanting to be anywhere near this woman after the things she's said to me in the past).

    Now this has put my head into a spot as Im still not eatting and if I dont eat, there will be no shopping to get done and hence all Ive been saying about we having to buy a lot when we go shopping, will look like a lie amd she wont see the issues we've been having all along. Im going to have to figure out what Im going to have to do. Also for my insulin test Wednesday, usually my insulin doesnt come down properly from the meal the night before (so my fasting level is usually high before Im even given the glucose or tested on something I eat).

    Im thinking Im going to have to eat otherwise I could screw up all my insulin and sugar test as it wont be truely otherwise representing what is going on in me and I need those results to be correct (I dont want my specialist to miss diagnosing diabetes cause of me not eatting). I did do a sugar reading tonight expecting it to be very low maybe even hypoglycemia (as I used to get that) as Ive only ate once since I stopped eatting (has it been a week yet?), to my surprise my sugar level is at nearly 6 still. (Ive lost 4kg this week throu this, Im still a bit overweight though).

    anyway, Im having to do some hard thinking here. I do not want ot cause issues for myself. I really, really need to think about things. The disability service make me so angry with todays phone call going on about mostly Aspergers, psych stuff etc that it's also grating on me right now to do something which will to them prove them right and that all this illness is is a mental health thing. I do not know what Im going to do.

    oh with that phone call, they are once again saying my issues arent their responsibility and rather are the responsiblity of the health service and doctors. (so I had a big arguement with her saying, well how can the doctors be at fault if you are responsibe for findin a suitable way to get there but dont help). They will strongly attempt to lay the blame elsewhere for my decline. I guess its good to see what they will try to say to get out of a court case (forwarned).
     
    Last edited: Aug 4, 2014
    golden likes this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder if the bit about taping the meeting being illegal was true? If she tends to lie, maybe it isn't.

    Sounds like you have some promising changes anyway - hope they come to fruition.
     
    taniaaust1 likes this.
  3. Valentijn

    Valentijn Activity Level: 3

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    taniaaust1, golden and MeSci like this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    This is SO ridiculous that I can't imagine anyone would believe it. I would not worry about it.

    Tell the Tenancy support person that your problems are caused mostly by the memory issues and low energy from the ME.

    Take help anywhere you can get it!

    Call the home support agency and asked if you really do have 4 extra unpacking hours.

    As long as your support workers are along, she will probably behave herself. If she does not, the workers will see and hear it (witnesses!).

    Why are you not eating?
     
  5. taniaaust1

    taniaaust1

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    That's great to know, thank you. I wish I could get her calls on tape, issue is there they hardly ever ring me (I hadnt heard from her for many weeks) and of cause being a gov dept calling it doesnt say who's ringing when she calls. (I dont even know where my recorder has been put, its another thing which needs looking for).

    I'll check that page out to see if it says anything about recording actual meetings without anothers consent (as it was during a home visit meeting I got this recording).
     
    Valentijn likes this.
  6. taniaaust1

    taniaaust1

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    Ive actually tried the Autism society before (2 years or so ago) as I are a client of theirs due to having offical Aspergers, for help and was just told by them if I have issues that I can use their library (yeah right, I dont drive) as they said they have good problem solving books and stuff for Aspergers people (I also do not have the energy to be sitting down with books).

    They also discriminated against me there back when I was well enough to attend Aspie support meetings just after I'd got diagnosed. They said they I couldnt attend their support group as I had multiple illnesses I was dealing with (this was back when I was suidical in the past and was really needing support and at the time was rejected from getting help anywhere eg my local mental health team said they didnt take on people with the illnesses I had.. and knocked me back even thou I was suicidal and had tried to suicide. They said they didnt deal with Aspergers, didnt deal with ME/CFS and didnt deal with that stupid diagnoses I had lumped on me of borderline personality disorder). Im too sick nowdays to attend any support group even if I'd wanted too.

    Anyway, my past dealings with the Autism society havent been good (I rang them one day bawling and they said they'd get their counsellor to ring back but I never got a call back). That was the last time I ever had any contact with them.

    but yeah, I'll do all Ive told to do and will make that call when Im feeling up to it.


    Im going to when I next get a day when Im up to phone calls. Im finding very tough doing these calls, they knock me around, Im still sick right now with a sore throat and very run down from that long phone call yesterday Im so drained that I keep falling asleep since 3.30pm today

    Ive fallen asleep about 5 times so far while posting on computer, about an hour ago I got a scare as I almost fell off my chair as I fell asleep. Im right now forcing myself to stay awake cause if I fall asleep now I may be up at 3am in the morning. Everything Im doing is wiping me out. (I have the blood tests tomorrow, things I got to sort out on Thursday and then Friday support day again. Im doing way too much, Im hoping I dont have a big crash by the weekend).


    Im trying to kill myself by not eatting. I do not feel like I can at all handle anymore more this situtation Im in with not getting the support I should be, being abused all the time due to how sick I are and being extremely upset about how much the state disability service has damaged my health due to their ME/CFS discrimination. Its caused me to not want to live anymore. Its making my life too hellish so hence I do not want to be here.

    I just want peace. (Its taken an incrediable amount of energy to stay strong and I dont have it anymore, Im tired, I have had enough, I just want to go). I think I know just what a cancer victim feels like when they've gone throu all they do but then reach the point where they just want to leave or an elderly person at the end of their life.

    People tell me things will come fine with disability services etc but that isnt true, its just gone on and on and one with my ME/CFS getting worst due to the lack of support, something which may not be able to be fixed. Downhill turns for me take YEARS to recover from and month by month, I watch the ME/CFS gain a stronger grip over me due to the lack of support.

    I have NO HOPE at all as Ive been bashing my head against walls for so long, over excerting, to try to get the support I need. I cant even get to my specialists appointments for treatment of things I have which should be treated and should of been so 2 years ago but I cant get places with my health as it is.

    Ive gone throu hell with having to miss meals and everything else they've put me throu by not sorting this out (I crashed right at the start of last year due to not being given support to unpack when I moved and that is how long Ive been in an urgent situation and consistantly going downhill from there which will continue without change happening here. Being able to pace well is the foundation to controlling my ME and there is no way I can live properly with the pacing I need to do with not enough support).

    My life is better if Im dead. (Im feeling extremely traumatised by what they've put me throu). This is why I now do not eat. (Im going to eat tonight and Im going to eat a yogurt in the morning so I dont screw up the glucose/insulin blood test and then Im going back to not eatting).

    I do not expect anyone who gets their basic life needs met to understand this post.

    Have I now got depression over this? I dont know but maybe, Im to the point now that I can hardly see the world as other being a bad place for anyone with ME/CFS (my Aspergers mind bases things on logic and experiences and this fact has been proven to me over and over), so even if I get the support help Im needing now, I do not know if this situational depression thing brought on by how Ive been treated by gov orgs is going to change how Im feeling. I just want to get away from bad people (those who do me harm or do not care if Im harmed)

    A couple of serious questions.
    How does one get a do not resusitate order put onto themselves?
    How does one donate a body from Australia to ME research? I want my body donated as it would be a waste of a body otherwise.
    ..................................

    I found out today why the Disability services may of been starting to listen to me on the phone yesterday. My support worker today (she's upset cause Im not eatting, its a bit obviously when there is hardly no dishes on my sink and no food shopping at all to be done, she said I was thinner and had a thinner face), told me that her agency had put a question list to her re me and over the fact we keep going overtime, wanting her to explaination in writing.

    She did that (she apparently did quite a letter explaining just how much trouble i have here) and she got that to them on Friday. She thinks that that info may of been sent to the disability services and hence why I noticed they were actually trying to listen to me for a change a bit (thou they are still on about Aspergers).
     
    Last edited: Aug 5, 2014
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I cannot believe that there are any laws preventing you from recording in your own home.
     
    taniaaust1 likes this.
  8. taniaaust1

    taniaaust1

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    ahh cool, hearing that has made me feel happier. I will ask a lawyer about it next time I get to speak to one.
     
  9. taniaaust1

    taniaaust1

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  10. Valentijn

    Valentijn Activity Level: 3

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    I don't know what to say @taniaaust1 - I agree that you don't seem depressed or irrational, but you are in a very bad place with regards to a lack of support.

    You're a lovely person and you have a right to exist without the "support" systems being so unhelpful and causing you so many problems. I want you try and keep fighting them, because I don't want us to lose you.

    Can you stick it out long enough to at least try fighting this through the courts? Even the threat of it might be enough to make a real change.

    And definitely talk to your family and every one who is supposed to be helping you before throwing in the towel: doctors, support people, your advocate-type person, etc. They should be able to help you get the support they need, but some of them at least are in denial about the help that you need.

    Killing yourself is irreversible, and it is a decision which can always be delayed. Try everything else first, even if it seems hopeless.
     
  11. AndyPandy

    AndyPandy Making the most of it

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    Good idea to check with your lawyer. In Australia, I think there are some legal issues about tape recording conversations without the knowledge or consent of the other party.

    Best wishes Andy
     
    merylg and taniaaust1 like this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I know you said that you had made up your mind, @taniaaust1, and that nothing anyone said would change it, but I will try anyway - what do I have to lose?

    I felt that life wasn't worth living in 1996 as my world had collapsed around me, and the early stages of ME involved vomiting every day and without warning, I was in dire poverty resulting in malnutrition, had had to give up driving due to lack of money, and was now having to give up my house due to not being able to pay the mortgage. There was no point looking for work any more as I was no longer able to work. So life seemed hopeless and I was just going downhill physically, mentally and financially.

    So I had decided to kill myself if things didn't improve. I kept hanging on, and studying (there was even less hope without that), and trying to find ways out, but eventually took a huge overdose.

    It didn't work, and instead I ended up in hospital with liver and kidney
    failure, and stayed in hospital for a month.

    I was dismayed at first that I had failed. After a couple of weeks I regained my will to live and decided to try living again. And soon I was glad that I had failed at dying.

    I know that things are incredibly hard for you. Someone less strong might have given up long ago, but you ARE strong.

    I realised this about myself when a good psychiatrist saw me 6 months after my overdose - that's how long I had had to wait - and by then I no longer felt the need, but went anyway.

    The psychiatrist said "You are a survivor!"

    And so are you, Tania. A lot of people care about you and would be very sad to lose you.
     
  13. AndyPandy

    AndyPandy Making the most of it

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    Hi @taniaaust1

    Would you like me to make some enquiries on your behalf about assistance through Uniting Care?

    When I am well enough I do a tiny amount of voluntary work with them through a disability volunteer program. I have found them to be an incredibly caring and non judgemental organisation. They are associated with the Uniting Church, but in all the time I have spent with them they have not once pushed religion. Part of their core values is helping others in need. You don't have to be religious to receive their assistance.

    Through my voluntary work here in another state I have a contact who might be able to link you up with Uniting Care in South Australia. At the very least they might be able to sort out your garden. Who knows what else they might be able to help with.

    I understand that you have many unmet needs and that the assistance they might be able to offer won't cover all of them or even the most important, but it might be a start on making life a bit easier.

    Let me know what you think. You can always PM me.

    Thinking of you and sending my love.

    Best wishes Andy
     
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  14. taniaaust1

    taniaaust1

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    Your past is like mine thou I havent got kidney or liver failure from my past attempts. When I was very young, 16 or 17years old, Id moved out of home (to excape a horrid homelife) and had an alcoholic boyfriend, he set me up to be raped by his mate while he listened in the next room, our relationship was very rocky.... during this relationship, not surprising I became suicidal and twice tried to kill myself.

    This included trying to hang myself in a shed, the rope broke or came untied or something (I cant remember now it was too long ago, I think it broke when it got suddenly all my weight onto it) but what I do remember is the extreme despair of what I felt when I'd failed at suicide.

    It was like everything was hopeless and I was too hopeless to be able to successfully kill myself. A suicide attempt with taking all the drugs in the house at that time just led to knocking me out and me peeing blood and chunky bits for days (I still wonder what those chunky bits were). I never tried it again in my young days as it was let something was against it succeding.

    I guess I need to find my will to live again, its burnt out. If a psychologist said to me "draw your will to live", I'd draw it as a tiny piece of charcol on a white plate (white for the spiritual place I see myself in, I see myself currently more as an everlasting spirit then a physical person with a horribly disabled body (I do not want to think about that).

    Ive been told by psychologists so many times in the past that "you are a survivor", they love to say that. Thing is i do not care anymore at all if I have been a survivor, my ego self does not care about it at all That doesnt make what Im going throu now go away, nor does it take away all the emotional pain of what has been done to me, I feel sorry for that survivor and all its been put throu and all I see is a ton of unfairness when I think that now.

    I cannot see myself as a survivor right now, I just look upon my survivor self in pity.

    I think at this point Im really needing a very good ME psychologist (who has also a spiritual kind of slant as that's where my head is too) to get me out of this mindset Ive gone into due to what Ive experienced, unfortunately none of those around me. (no normal psychologist is going to be able to understand me).
     
    Last edited: Aug 5, 2014
  15. taniaaust1

    taniaaust1

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    ahh thanks Andy. You just jogged my memory of the org who I couldnt remember the name of and who wasnt properly followed up. Wessely Uniting Care I think they are called, is this the org you are refering too?

    I had a phone appointment with them as I couldnt get in to see them. They were going to do referals for me to the Rotary Club and other places to see if they could get some garden help for me. They where also going to put me onto a list for gov hand out computers (when government depts upgrades theirs).

    Thing is after I had called them a couple of times and also had that phone appointment with them. I never heard back from them, they never contacted me again. I tried ringing them a couple of times since but no one got back to me about what was going on. I gave up with them at that point due to the amount of energy I'd put into this without nothing happening. So this is something which could be more followed up (I do not have the health to keep trying and trying with places to get somewhere).

    Ive made myself sick in the past trying and trying to get somewhere with places and in the end it was all for nothing (this has happened to me with LOTS of places). So if people arent getting back to me or reasonably following up after I've had appointments with them etc, I give up now at that point.

    Following that one up seeing I was having issues with it, would be something I would ask a caseworker to do for me if I was able to have one. So if anyone wants to try to follow up what happened as far as me with that, please do so as I never know what happened there as they didnt get back to me. Did they ever do those referals? What happened? Did they ever put me onto the list for a gov computer?

    For anyone who wants to try to make enquiry on my behalf to try to find out.. my name is Tanya Selth and my address is 23 Nautilus Square, Seaford Rise, South Australia . I cant remember where the location of the closest Wessley Uniting Care was.. Christies Beach? Noarlunga?
     
    Last edited: Aug 5, 2014
    merylg likes this.
  16. taniaaust1

    taniaaust1

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    Just a whine about this morning and people ignoring me

    Why does noone ever listen. Whenever places are dealing with me I get them to write down DO NOT CONTACT ME BEFORE 11am (cause Im not always out of bed and awake by then and in the morning Im trying to focus on things like rehydrating myself so do not want to be stuck on phones instead of doing what I need to be doing to get myself the best I can be after I wake up).

    This morning early, the phone woke me up. I ignored it trying to get back to sleep, the person thou rang again, Im fully awake by then but very dazed out and very tired as I havent got the sleep I then needed. I didnt answer on the second call as I do not want to be encouraging people to be ringing me at a time when Im often still asleep. I'd only got 6 hrs of sleep due to this thou I'd been extremely tired when Id gone to bed (had been forcing myself to stay awake from 3.30pm), I didnt sleep well (I didnt take my sleep drugs last night as their shouldnt have been any need to do so as long as I was able to sleep as much as I had needed, being till I naturally woke up this morning).

    Half or hour later (9.30am?), someone is knocking at my door. Turns out to be the HealthScope nurse (from the blood place).

    Blood nurse from Healthscope: "Ive been trying to contact you as I think there has been a mistake made when making your appointment. It says this test is meant to be done 30mins after your breakfast."

    Me: "Did you not see the DO NOT CONTACT ME before 11am which I told them to write down, didnt they do so?"

    Blood nurse "yes I saw that but I didnt think it would be a problem"

    Me: ****sighs***** ( while thinking something worst then.. for goodness sake!!!).

    Me: "Was it you who rang twice very early?"

    Blood nurse: "Yes I rang twice" .. "Are you okay?" (Ive squatted on the floor while having this convo and now have gone into swaying about to fall over, my eyes are bugging out with tiredness, this convo is being a huge strain on me as Im still trying to wake up properly and havent got hydrated well yet).

    Me: "Well you've woke me up with your calls, I sometimes have insomina and hence the DO NOT CONTACT BEFORE 11am and I wasnt able to get back to sleep and now Im wrecked due to this and wont be as good for the rest of today".

    Blood nurse: "oh, Will u be okay?"

    Me: ***probably giving her the evil eye by this point, really struggling at the door, still squatted and swaying, holding myself up now by the things around me**

    Blood nurse: Can I take the blood now? I have 3 others in this area to do and then are going elsewhere and I dont want to have to come back.

    Me: Well that time I made for you to come and do it was made at that time for a reason, I dont eat till late, usually after 12pm. I eat brunch.

    Blood Nurse: Can you eat now then and I do it in half an hour?

    Me: no you cant as I ate about 2.30-3.30am and as you know this test is a fast. (I ate something last night to make sure this test would be as if it would be if Id been eatting properly like I would usually do, my insulin is usually still up after fasting)

    Blood Nurse: ***silence*** (she can see she's screwed now). I guess Im going to come back at the time you arranged at 1pm.

    Me: Yes but now you may have an issue. Cause Im so tired now due to not getting enough sleep, there is a chance I may fall aleep before that and not hear your knock at the door and when I really crash out, I miss alarms

    Blood Nurse: Oh. Is this test important and does it need to be urgently.

    Me: The disability service wants reports from my doctors and my doctor wont want to do a report without this.

    Blood Nurse: **silence**

    Blood Nurse: I guess Im going to have to come back at 1pm and hopefully it will sort out as I dont want to bother your doctors.

    Me: That would be a good idea, make sure you bang very hard at my door to wake me up if Ive fallen asleep.

    (umm thou if that happens now, I dont know what she'll do as I will need to eat for the test which has to be done half an hour after food).

    Then she left, I was stuck on the floor and unable to get up as I wasnt hydrated enough yet at that time of the morning, so I ended up having to crawl back to where my water was. I would of asked her to give me a hand getting back on my feet but she was covered in perfume so I couldnt have her near me. We were talking throu the screen of the door.

    When she comes back, im going to have to get her to do the blood taking while outside (hopefully she isnt going to object to this, Im right now in anxiety as I do not know how she's going to react at this when she comes back later today and I cant stand any abuse right now. I feel very tired right now, very weak and very vulnerable).

    So my day hasnt got to a good start (the issues Im having with others who do not listen are never ending, I almost feel like its going to drive me insane).
    ........................

    sighs.. anyway .. Im so fed up with the attitude of people who ignore what I clearly make sure is stated to not contact me before a certain time, surely if someone has specifically got that put down on their notes it should be obviously its there for A REASON. Healthscope people too yesterday rang not once but twice to check on this time I had booked.
     
    Last edited: Aug 5, 2014
  17. AndyPandy

    AndyPandy Making the most of it

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    Australia
    Hi @taniaaust1

    Hi Tanya

    I am not doing very well myself at the moment and am preparing to travel interstate to the CFS Discovery clinic so I don't feel able to take on finding out what happened in the past with Wesley Uniting Care.

    What I am able to do is get in touch with my contact here and try and arrange for Uniting Care in Adelaide to contact you about arranging assistance for you now.

    How would you prefer contact by Wesley Uniting Care? Can you PM me your details eg phone or email that I can pass on to Uniting Care? What is the best time for them to contact you if they telephone?

    Do I have your permission to disclose that you have ME, POTS, MCS and Aspergers or would you like me to just say that you have serious health issues and are wheelchair bound/mostly housebound. Or just say that you need assistance and leave it up to you to explain?

    Best wishes Andy
     
  18. taniaaust1

    taniaaust1

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    Sth Australia
    Hi Andy, wow @ you going to go to CFS Discovery clinic soon. I assume you are refering to the new clinic??? or is this one something else? Let me know how it goes for you.

    oh so Wessley Uniting care isnt Uniting Care? sorry if Im confused. (Wessley Uniting Care is a Christian org and I'd assumed it was throu the Uniting church or something).

    I do not care at all who it is as long as its possible that they could give me some of the help I need. (I dont have the health for more goose chases (theres been too many of those) and those contacting me who cant help cause Im a DisabilitySA client. too young etc

    I dont use my email, Im not well enough to be focused on that too. (so it just builds with messages and floods and gets too overwhelming for me). I'll pm you my phone number (people can contact me anytime after 11am by phone or phone text message after that time). You can tell them my medical issues (maybe they will listen more coming from another, too many when I start to list my medical issues just shut down on me). Thanks greatly.
     
    merylg likes this.
  19. AndyPandy

    AndyPandy Making the most of it

    Messages:
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    Australia
    OK @taniaaust1 I will wait for your PM about the phone contact. I think Wesley Uniting Care is what Uniting Care is called in SA. I will find out when I get in touch with my contact.

    I am going to the CFS Discovery clinic in Melbourne.

    I will do what I can for you, but I am very fatigued at present and will be away for a week and then will need to recover, so it may take a while. I will get to it though and do the best I can for you.

    Best wishes Andy
     
  20. taniaaust1

    taniaaust1

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    Sth Australia
    I completely understand, look after yourself first.

    ahh I understand where you are going now. Dr Lewis's clinic. Is this going to be the first time you've been there?
    I tried to get him to take me on but he said I'd have to see him once first which isnt possible as I cant fly alone and probably would need another to push the wheelchair at times too.
     
    Last edited: Aug 5, 2014

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