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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    That is what your support workers are there for. Why not rely on them as much as you can and give your brain a break. Have the carry your shopping list, prescriptions, and such. You could even have them carry your purse and give it to you just when you needed to get something from it. Let them keep track of the car. Your brain will thank you.
     
    taniaaust1 and MeSci like this.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    So true. I have to write down what I am going to say to the doctor as my mind goes blank when I walk into the surgery. Then there is the problem of remembering what they say to me! There must be a lot of people with similar problems, such as the elderly, and I think that doctors should offer to write/type things for people instead of expecting them to remember everything, especially as many people are stressed at the doctor's, which impairs people's ability to think.

    Re shopping, I always take a list but will often not see everything on it even if I am looking straight at it, and end up forgetting things.
     
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  3. taniaaust1

    taniaaust1

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    Yeah, I do that too, my support workers have to check I've got everything on my shopping list as I can be sure that I have got everything but then end up still missing getting a couple of things on the list (even with things like crossing out things when we grab them, I can end up accidently crossing out the wrong things off the list).

    Not long ago, thou it was expensive.. it was $89? (but it was all I could get at short notice as I urgently needed it to record a meeting to make sure after it there would be no lies at what was said there).. I brought a dictaphone thing to record in which then can be put onto a computer and the recording put into a file. It was very good I did that as my elderly friend (who couldnt be at the meeting), was able to take it home (he put it onto disk for me too) and listen to it and take notes of the meeting I had.

    Im slowly buying aids I need re the issues this illness causes. People when they think of the cost of this illness eg supplments, doctors, tests etc, I think they often forget how much it also may cost us in aids and things.
     
  4. taniaaust1

    taniaaust1

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    My doctors do tend to write some things down... thing is they cant write down everything said at an appointment and that is where I afterwards end up confused.

    I should of took the recording device to me to my appointment but I actually forgot I had it so didnt take it. Im going to have to ask my support worker to clear up to me some of the things said to me at my last appointment.
    ................

    Im up before dark again, layed in bed for an hour trying to get back to sleep before giving up.

    Bad dreams again, tonight it was over tilt table testing. In my dream over and over they were trying to tilt test me but didnt know how to test and hence kept on going to do it wrongly eg trying to do it on a stretcher which was too short with my legs hanging over it, trying to do it with me in discomfort due to a piece of wall sticking out and into me etc etc. (so many ridiculous ways to screw up a tilt table test are coming into my dreams). Lately I havent been having normal dreams as its all over the issues Im facing but in screwed up weird dream ways.

    No one rang me back again yesterday. So now Im waiting on phone calls back from three different gov services including now waiting on the return call back from Disability services which I'd rang the day before and they said they'd get the person to ring me back the next day but not to my surprise.. no call came back... so I still dont know what to do about the doctors appointment which I have booked but may have to cancel over needing the referal but not knowing if Ive used up already my 2 supported trips to my GP. They arent just causing things to screw up with me but they are also impacting upon my doctors!! (cause of me then often having to change things last moment due to people not getting back to me and helping me know what is going on).

    Today.. I'll try to ring my advocate again (who's office keeps on not passing messages onto her) and if I can actually get hold of her, I'll try to get her to ring the others who arent returning calls back.
     
    Last edited: May 14, 2014
  5. taniaaust1

    taniaaust1

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    Update

    Ive lost my diary today so cant currently find the phone number for the equal opportunity commissioner people (my friend reminded me on the phone today that Ian Law the person I was dealing with there is gone as he's been transfered depts so now I have a completely new person again to deal with!! The last thing I need, constantly trying to advocate my case to person after person).

    Im completely stressed out to the point where Im actually shaking right now (making it very hard for me to type) and trying not to cry, after doing phone calls to places re trying to sort all the mess out.

    I just got off the phone to one, one of the letters I have is addressed as being from (Sandy Edwards) from HCSCC. She told me that Christine is dealing with my case (that is someone who I thought had left my case some time ago). The HCSCC said they cant send all my file to me and wont as its not up to them to help people with legal cases against disability services.. but what they will do is to send the letters I sent to them and the ones they sent back. (so that will do.. the lady there was nice).

    I found out that they did try to ring me back.. but it would of been the day I was in hospital. They also told me that Christine had done an email to me (Im too stressed out to read it right now so will look at it later).

    I dont check my emails as its one of the things I limit as I cant handle going throu all that mail and find it very tiring and wears me down. I would of gone there thou and tried to find the email had I known they would email me but I didnt.. they said they would ring and there was nothing to make me think they'd try to email.

    Sandy has told me to not give them my email if Im not reading my emails.. people thou often expect me to give them my email and I even at times when I havent wanted to give it out.. been treated by people as if Im being difficult... Im not sayign their service did that to me but it has happened with others. I'll take her advice and not give it to people in future when they are wanting my email. I only check email about once a month (sometimes not even that) and only the first page of them. I used to check it a lot more before I was as sick as I am now but now its one of the things which has gone to the wayside.

    I spat the dummy on the phone at bit as Im so very upset over it all as once again I was reading the HCSCC leaflet about my charter rights and realising DisabilitySA have breached nearly every single one and possibly the HCSCC too by not getting DisabilitySA in hand with my case after I complained (is that their job?)... a department which comes under them and which they could of had doing the right thing.. but I just was left without enough help to sort this whole mess out and things werent looked into well and now Im much sicker.

    Charter Rights which on every time I read make me so angry as my rights are breached by the gov services (DisabilitySA)
    1/ Right to access health and community services which meet my identified needs.
    2/ Safety.. Right to be safe from abuse "I have a right to recieve services free from discrimination and harrassment"
    3/ Quality .. right to quality services .. right to recieve services appropriate to my needs and provided with care, skill and competence.
    4/ Respect .. right to be treated with respect
    5/ Information .. right to be informed .. I didnt even see the stuff DisabilitySA wrote and my needs assessment till recently! a couple of years later
    6/ Participation.. right to actively participate. umm seems a lot of one sided participation happens when DisabilitySA tends to ignore everything one has told them.
    .....

    The only right which havent been breached is the right to complain .. On deeper thought the my privacy right got breached by DisabilitySA too. When I was under Helene she made me sign a form to the new support agency which mentioned that in the past that I'd said I'd been wrongly diagnosed with BPD. I did not want to sign that form like that as I didnt want the new agency to know that as it just makes people think wrongly of me.. but she said it had to be on there.. (and without that form sent I wouldnt be able to change away from that home support agency which was very bad.. so I had no choice but to sign something I didnt agree on and anything said in the past (esp something which was irrevelent) should of been private anyway.

    Anyway.. right now Im so angry and upset that Im shaking even thou the one at the HCSCC (Sandy Edwards) was nice on the phone and completely reasonable (as they are there protected from the FOI so actually dont have to send me anything at all). Ive just been throu too much bullshit now to be able to handle phone calls well anymore over all this crap... just the thought of what Ive been throu is upsetting me. I think Im too the point I could now really do with some counselling over what gov depts have put me throu.
    ..........

    Before that call, I'd rang my advocate again.. and found out the reason why this time I havent been rang back. She's been sick for a week and still isnt back I really needed her to ring DisabilitySA re the issues I have with the referal so I can go to the specialist appointment next week, seeing they arent ringing me back (another thing which has upset me.. Im sooo sick of people not phoning me back when having to ring in the first place and deal with them stresses me out).

    At this point as I cant handle another phone call today.. too distressed from doing the ones Ive already done .. and I just couldnt emotionally cope with trying to call DisabilitySA again. shit I need a socialworker or something doing all this. My elderly friend sometimes does phone calls for me but if I get him to do that too much, DisabilitySA will just expect him to do it all the time.. something he cant do!! He's currently got too many issues of his own.
    ..............

    part of our phone talk
    "Sandy from HCSCC: "are you wanting to make a new complaint?"
    Me: NO!! Im still trying to sort out the one from the start of last year."


    shit.. Im sooo in need of counselling over all this crap they are putting my through. I cant cope with phone calls now hardly at all to try to sort it. It no longer matters if the person on the end of the phone is being nice to me as the situation is still highly disturbing to me so I still get very upset.
    ...

    There is noone currently in the chat room and Im feeling quite distressed still from doing those phone calls. Im not going to ring Alex again as he propped me up some emotionally last week.. I think I'll ring Lifeline so I have someone to chat too seeing Im feeling so distressed over it all right now but what is the bet that service will be engaged and I wont be able to get hold of someone there either!!.
     
    Last edited: May 14, 2014
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Would it work to open a new e-mail account and give the address only to the people involved in your care? That way you could have them write to you instead of phoning you and there wouldn't be a bunch of other e-mails.
     
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  7. taniaaust1

    taniaaust1

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    Ive having enough trouble dealing with what accounts I have already and often already are loosing passwords for my accounts a lot etc etc.. its going to complex things even more for me if I open up another account and it would too only leave just another thing/task I have to try to remember to do every day.. what I really need to do is to be simplying things more. (I dont do much online at all as I find it all mentally over whelming and tiring.. its just mostly this site I go to (and I leave myself signed in all the time or I'll get overwhelmed with this site too, when Ive lost my password here one time.. I didnt come here for months as it was too much to be trying to sort out the password issue).

    I wish online stuff, accounts and stuff wasnt so complex for my brain.. (its one of the reasons why I dont do FB or anything like that, more is just too much). The email account I have now.. Ive probably had for five years and I still at times struggle to remember that my email address to give out to people. I just cant cope with more. If I open another account, I just end up confusing stuf together.
     
    Last edited: May 15, 2014
  8. taniaaust1

    taniaaust1

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    Today I tried to ring the National Disability Abuse and Neglect Hotline to see if there was counsellors there I could speak to re the neglect Im having and how I feel about it.. but they told me they dont do counselling and to ring lifeline.

    So I then rang lifeline for a councillor. There was quite a wait on hold to get one and by that point my arm was hurting from holding the phone. I pushed throu it and still spoke to her for about 20 mins .. she was good and did calm me down some and didnt try to get rid of me (like Ive had some lifeline counsellors do before). I ended up asking her for a list of counselling services in which I may be able to get someone to come out to my home as I think Im needing a bit of ongoing counselling support till things with disability services are sorted out. She gave me four places I can try and see if they do home visits.

    Out of business hours .. 5.30??.. strangely DisabilitySA rang me (I wonder if they are still reading my posts)... they appologised for not returning my phone call and said she'd been sick and said that the other who is dealing with me has been sick too.

    (must be some plague going throu the disability support services!! .. three of them in the same day have this as a reason for not returning calls back).

    She said they are about to hold a big meeting over my case. (I didnt think to ask who "they" are.. seeing the Disability services district manager and just another are another dealing with my case there and no one lower.. so by "big meeting" it sounds as if other services will be involved too in discussing me).

    This is concerning me esp since Ive discovered I posted the wrong stuff back to EOI and havent disputed a lot which was said in a letter from (I forget who..forget which service right now) due to that. Also concerning since I know the repat hospital said some aweful stuff about me according to my GP who was annoyed at them over it (I believe theyve made me out to be a psych patient!!!) and no doubt the disability service has a letter from the repat hospital saying the same thing... so this meeting..Could well be a big meeting ridiculously over my mental health? Instead of about my physical issues and them getting the support Im needing, so Im not going to my limits and often going over? Very very concerning.

    Im back to feeling scared again about the disability services and the hospital due to them not having a clue!! They do not have any knowledge about ME.

    I have a headache tonight due to all the stress and no doubt cause I have waves of fears over this upcoming meeting which will be held without me (when I know that none of them understand, there needs to be an ME advocate at that meeting over my case but of cause there isnt one here anywhere). No doubt Im going to have another night of nightmares tonight too.

    No ME advocate.. I think Im screwed. For all I know, they may send around the men in white coats and have me locked away for having ME. So right now I have that fear playing out on top of my fear that this illness may end up killing me. If I end up disappearing.. it will be probably be cause they have locked me up in one of their mental wards. (Irronically I can just imagine them using this post to support that Im a mental case and paranoid).

    If I disappear.. we have several hospitals here in which they probably would send me too.. the state mental hospital is called Glenside Mental Hospital (if that still is open and hasnt been shut down). Then there is the Flinders Medical Centre (which is the biggest hospital near me).. also the Adelaide Hospital (which is one of the two states big hospitals). and my local hospital Noarlunga (but I dont think they'd lock me away there).. and the Repat Hospital.

    Im getting really scared over them and the fact there is no ME advocate here and my GP thou she'd try to stick up for me..she'd just a GP and I know a hospital would over ride her..same with my two CFS specialists.. who are just GPs (and at least one of those does believe in CBT and the PACE trial). I'll ask my family if I can leave a couple of their phone numbers in my thread in case I go missing so people can call and find out what is going on and what has been done to me.
     
    Last edited: May 15, 2014
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think you are borrowing trouble. A 'big meeting' would not have to involve other entities. It could just be everyone at DisabilitySA that has had contact with you and maybe their supervisor(s). The person who phoned you may have been trying to reassure you that your case was being taken seriously and acted upon.

    I don't think it likely that they will put you in a psych ward. If you put some family phone numbers on the forum, it might be better to put them in a members-only forum.

    I know it is difficult, but try not to worry too much until you hear from them. :hug:
     
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  10. golden

    golden Senior Member

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    @T1,

    I didnt see your post from yesterday - i wouldnt have posted my own fears on another thread had i.

    What they have done is keep you in the dark again and they have caused you anxiety.

    They said they are having a 'big meeting' about you. I am not suprised you are hoping for the best but preparing for the worst!!

    They should be including you - you could be included via phone.... They shpuld have said what and why the meeting was over. They should be reassuring you this is to rectify their cock ups and poor treatment so far.

    Thankyou for the details should you be forcibly removed from your home. It is a possibility especislly because you have valid complaints against them

    whilst hopefully in their 'big meeting' they can discuss their failings and reach into the depths of their hearts and do their utmost to start giving you the physical help you need so you can start to recover and nourish....

    It also never ceases to amaze me just how far the ego will go to protect and defend itself in these types of meeting and instead of being interested in truth, they are concerned with layering error upon error.

    It was only the 1950s that Doctors believed morning sickness to be psychosomatic!!!

    That was why they were given a sedative - thalidomide - the irony is that doesnt even help morning sickness. 100,000 babies effected and perished, suffocated and left in cold rooms unattended to die in hospitals by Doctors and Nurses.

    We are still very much in the dark ages of medicine.

    You are doing all the right things in my book - getting yourself a counsellor, trying to correct past mistakes, trying to get the help you need now.

    I do hope they see sense and give you the physical help you need.
     
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  11. taniaaust1

    taniaaust1

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    My elderly friend told me not to stress about it and that they wouldnt lock me up in a psych ward, he too thinks Im being overly anxious about this (its hard for me not to be anxious seeing they havent listened to me about my issues at all).

    Im jumping to all kinds of assumptions about "big" meeting as there is only two in DisabilitySA now dealing with my case (Helene has been off my case for quite a while now so I cant imagine her being involved).. as my issues went to the top level. Ive been dealing with the distract manager and also one with some medical knowledge there (I think she's a nurse ..she was helping advise the district manager but dont know her role there).

    These both were at the last meeting Ive had with DisabilitySA (them and m advocate) and I havent had any dealings with any others lower down at Disability for a while (maybe since last year)..so there is no one else has been dealing with my case. So who are they going to call in in their dept? (these two people meeting between themselves about me, well I wouldnt call that a "big" meeting). umm maybe the state head is being dragged into my case now I guess that then would be called a big meeting.

    Yeah I know Im stuck on terminologies due to my Aspergers.. maybe some would call a heavy or important meeting between just two people "big".
     
  12. SOC

    SOC Senior Member

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    I'd go one step farther and suggest she doesn't put phone numbers in the members-only forum either. If Tania needs to leave phone numbers, she should probably select some members she trusts and send the phone numbers in a PM
     
  13. taniaaust1

    taniaaust1

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    I'll have to read the other posts later.. I arent able to right now.. support workers will be here to take me shopping soon so can only be here for a short time more.

    DisabilitySA thou told me the other day when they finally did ring me back as she couldnt answer my question on if i"d already used up my support to get me to two GP appointments or not and said she'd have to look into it to see and would ring me back. Well days later.. they still havent called back, so Ive had to cancel out that Thursday specialist appointment as I wont now have the new referal I needed. Third time I think now Ive cancelled on this specialist!

    When I rang to cancel it.. it was right at the end of the working day and my specialist secutary (oh my brain cant spell today) must of just already left as my specialist Dr Gale answered the phone himself. He was understanding over my cancellation (he's a good doctor) and asked me how things were going. I told him Ive been ending up in hospital but other then that wasnt thinking straight to say anything more of my issues.. sighs.. I cant answer questions on the spot.. I really probably need to put all the issues Im having down in writing to him but its too much for me to do right now due to the other letters Im working on.. (he wouldnt know about most of my problems as I go brain dead and always have trouble expressing them on the spot).

    He told me to get the reports from the hospital to bring with me next time and also wants me taking my blood sugars .. before I eat, half an hour after I eat, an hour after I eat, 2 hrs after I eat.. for a breakfast, lunch and dinner once per week.

    He's going to post me a form to record my levels on.
     
  14. taniaaust1

    taniaaust1

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    It does help me emotionally a lot to get it out and not bottle up with is going on and suffer in silence over what is going on (which is something I did do with things for years).

    I'd like to point out to people who read this, this blog here also is supposed to act as my memory, its my notes on what has gone on.. so also is supposed to aid me in remembering dates and what has occurred. (the only issue is its usually too much to go throu for me to find the stuff later when I need it).

    Before I started noting things here in this thread.. so much of my past and what has gone on, the hellish stuff Ive been put throu by gov depts etc, has been lost (and now couldnt be brought up in any court cases due to my confusion with things.. I have no idea of dates and whos..). So yes thou doing these posts does dig some into my daily spoons one could say, its really necessarily for a record to be kept (thou a lot of stuff which does go on.. still I forget to record or at times are too sick to do so so never gets put down.. but I try to prioritise noting here so I have a record of events in case I need it).
    .....

    thanks for your posts golden.
    ........

    This afternoon my advocate has finally rang back and so its getting sorted now more about what happened weeks ago when physio arrived wearing chemicals after DisabilitySA person had told me that certainly wouldnt happen as she had rang them to make sure she wouldnt arrive that day like that...

    My adovcate is doing an email to DisabilitySA getting them to affirm that it is in their notes that I cant have people arriving here with chemical deodourants or perfume. (I said to her its already in their notes but she said its important to get them to confirm it in writing). I myself have sent them letters on this in the past.

    I also spoke to her about how Ive had to cancel the specialist today re DisabilitySA not getting back to me with the info I was needing re transport. So she's going to put that into the letter too.

    She wants copies sent to her of the wrong letter my friend helped me do, a copy of the letter Im trying to currently reply to (which is half down as Ive been working on it) and also a copy of something else **sigh, I forget, I hope I can find my note I took while on the phone** . I'll have to find and send the 3 things she wants me to send tomorrow (Ive had enough stress for today so now trying to be calm and relax and rest).

    Im also right now thinking about how my GP wants me to contact the patient advocate at the hospital.. but I really dont feel up to doing that currently.... I already have enough to focus on, a couple of phone calls a day is more then enough for me. I couldnt currently handle dragging yet another person into this mess and then having to try to advocate ME/CFS to a patient advocate as well. Its a nightmare already how many naive towards ME/CFS people are involved now.

    Today I had to hang up on my advocate today and she ended up having to ring back.. as she left me holding onto the phone for too long while she went off to deal with an issue she had with something else.. and my arm started to hurt while left waiting). So I pointed to her today, I cant hold be left holding a phone.
     
    Last edited by a moderator: May 20, 2014
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Most of my perfume problems arise from what people use to wash their clothes, as most laundry products are now heavily infused with stinking artificial chemicals which are being increasingly designed to last a long time on the fabric and/or to be released when the fabric is touched.

    So asking people not to wear perfumed toiletries may not solve your problems. It may be their clothes that stink.
     
  16. Kina

    Kina Moderation Team Lead

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    Moderator's Note:

    We have removed quite a few posts from this thread in order to get the thread back on track.

    If you would like to discuss any removals, please contact me via Conversation so we can keep the thread on-topic.

    Kina :)
     
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  17. taniaaust1

    taniaaust1

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    Nods, Im aware of that too. When my MCS was more of an issue years ago then it is now.. peoples clothes were at times starting to become an issue, nowdays they are usually ok as usually their clothes arent fresh on ( I tend to keep my dealing with people to the afternoons and by then, the soaps they've used when showering, shampoos used and clean clothes put on still strong in the washing powder perfumes etc.. most of the issues have gone by then for me.

    One needs to be very careful when buying clothes to as they can be infused with all kinds of chemcials even before they are worn. We just had a big recall of some clothing out of our main dept stores recently which made the news, as it was found they were very toxic.

    Ive known thou about that issue for years thou as Id previously read the greenpeace independant testing on clothing and stuff which found some of them very toxic. It was something I researched after my sister and her family got sick after she brought her young son some clothing which made them all ill after she washed it in warm water.. it was terrible.. she ended up taking the article back to the shop.

    You just cant trust anything nowdays, they use dangerous chemicals everywhere. Im surpised that more people arent getting sick from this. Its sad that a lot of this stuf is going to end up in the environment for a very long time. We'll go down in history as those who polluted the planet and affected the health of everything.
     
    Last edited: May 21, 2014
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I suspect that many people are getting sick from these artificial chemicals. It's just that, unlike chemical sensitives, who could perhaps be thought of as chemical sentinels (some use the analogy of canaries in a coalmine), most people take some time to develop the illness and symptoms. Some commonly-used artificial perfume chemicals are significant endocrine disruptors.
     
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  19. taniaaust1

    taniaaust1

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    Update

    I still havent got together (found) and scaned and emailed in attachments (my computer is such that it cant cope with adding more then one attachment if that to my email and it often crashes doing that) the stuff my advocate is currently waiting on.

    She rang and asked me to do this on Tuesday but as that was my shopping day and I didnt want to end up overloaded and hence sick by doing that too, so I told her I'd organise it Wednesday (which is actually meant to be my rest day to help me get throu the rest of the week!). Turned out on Wednesday I wasnt all that great.. spent most of it very wiped out with very low energy reserves so didnt do it and planned instead to do it today (as my friend couldnt come today to help me with the other things so I thought I couild focus on that). Well that screwed up too as Ive ended up having a very busy day doing other things (and now I just need to rest and not be doing more stessful things, Im starting to get close to crash state)

    Just when I got up this morning, I got a phone call from my ISP and phone company which sent me into a tizzy all day, saying they wanted to arange to have me connected to the NBN (national broadbroad scheme) within the next 24-36hrs!! and wanted me to sign a 2 year contact with them or tell them who I was going to change too on spot. (my current plan Im on, will no longer exist as soon as Im switched over as noone will no longer be getting dial up)

    I couldnt even get into my head on the phone what that entailed (I wasnt even managing to write what was in their deal), the person kept speaking way too fast. After being on the phone for 20-30 mins with them (extremely difficult for me) and still not understanding it all, I ended up in tears as they were saying they needed to know right away as Im booked as a priority with my phone company due to my health problems and they are doing us before they do anyone one else. I'd been planning to change phone/internet company but hadnt had a chance with all the other stuff going on with DisabilitySA etc, to look into with company I was going to change too.

    As I was as very confused about what they said (its no good trying to tell me plans on a phone!), I ended up having to go to their website to try to understand the deal they wanted to put me on but couldnt find it (turns out it wasnt even there as it was a special one) so ended up then having to chat online to one of their consultants for nearly an hour (I was soo confused about what the NBN meant for me and my computer and everything to)

    So today instead of getting the stuff together and sent on to my advocate.. I ended up having to spend all day trying to get my head around phone and internet plans! .. as I then looked at others too. Ive done nothing else today.. between rest breaks, its taken me all day. (I hate how everything here ends up being left to crisis point as I cant fit in everything). But yeah it would of been good if they had not contacted me without any real warning, saying they needed to know this stuff right way!

    Unfortunately Im only too aware that others.. eg DisabilitySA (maybe even my advocate who Im sure doesnt get my illness yet) may judge me and probably not think Im trying much, as they look at things like me not getting back to my advocate or doing as Ive said I'd do and probably think Im responsible that things arent getting sorted out. ***stress, stress, stress**
    ...................

    Tomorrow my support worker comes so I probably wont be doing the stuff for my advocate then either, it will have to wait till weekend.. probably Sunday (as Saturday usually my rest day to get over Thursdays and Fridays in which I do stuff).

    DisabilitySA STILL hasnt rang me back!! Ive been waiting 6-7 days now (it was last week I spoke to them) for a response to my question in regards on if Ive used my transport up already to get two GP appointments they granted, , so I still cant book an appointment back to my GP to get the referal so I can go to my specialist (now why arent I surprised by this.. no good communication with me seems to be the norm, these places so often end up forcing me to have to ring several times as if I dont already have enough to do).

    Maybe they are purposely not ringing me back?? maybe they are waiting to have their "big meeting" first? but Im only wanting to know an simple question on something I NEED to know... Do I have one availabe trip to get to my GP or not?
     
    Last edited: May 22, 2014
    Valentijn likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
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    Cornwall, UK
    Replying to myself here as I forgot to say - the perfume chemicals are designed to last for days at least, and I have known them to persist in some fabrics for months, even more than a year. I buy most of my clothes in charity shops, and most of them have obviously been washed in perfumed laundry products. I have to soak them in dilute vinegar and put them out on the washing line usually for days or weeks before I can even have them indoors again, let alone wear them. Sometimes the colours fade before the smell does.

    The worst are those with rubberised or plastic components, as it is almost impossible to get perfumes out of these.

    I sometimes have to take the items back to the shop to re-sell as they are completely unusable for me.

    Natural fabrics like cotton are relatively easy to decontaminate.
     
    taniaaust1 likes this.

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