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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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    Phone call from a high up in the States Disability Service.

    DisabilitySA regional manager I think it may of been (Ive forgot her position but she was high up and forgot her name thou I did ask her 2-3 times while we were talking) rang me today.. she woke me up actually, I was in bed asleep after the doctors appointment as I needed the rest. (been feeling hyped up since her phone call which is bad as I now cant get the rest I need and may end up being too ill to go shopping with the support workers tomorrow).

    She told me I had an appointment with her and the other one there tomorrow.. I was like "What!!" as it was the first I'd heard about this, the temporary case worker person on Friday said she'd ring this week to arrange another time with me. I had to tell the regional manager? that we cant do it tomorrow as that's my support day to take me shopping (and I can do nothing else that day). We've up making the time in two weeks on the Monday to have a meeting.

    I was actually shocked that a meeting between just her, the case worker from the same place and just me had been arranged as I only told the caseworker the other week that I didnt at all feel comfortable with my Aspergers to have like 2 from DisabilitySA against 1(me) after all the bullshit they've put me throu etc Im sure I'd feel very ganged up on (and with the Aspergers that would be hard for me too). I told the other that I wanted my advocacy complaints person there with me for support. So it appears once again Disability services completely ignored what I'd said or their temp. caseworker hasnt obviously passed on that info and what I'd said She seemed surprised that I had no knowledge of this meeting as I hadnt been told (I know I certainly wasnt, it isnt something I'd forgot as I remember the last convo part about it).

    To add to her expectation that I was to attend an appointment with just me and two from DisabilitySA.. she goes "you can catch a taxi to it". WHAT!!! how many times have I told the disability services that Im too ill to catch taxis with MCS and alone when I collapse. And this was the so called higher up who I'd been told by the temporary caseworker only a week or two ago that would know all about my case!. From todays convo, it was obvious in fact the higher ups in DisabilitySA dont know a thing at all about it and havent been passed on anything which has been told or said.

    The convo from there just got worst. She doesnt understand at all my need to be seeing my doctors and specialists, she thinks I should see doctors at the hospital as "hospitals provide the transport to hospital appointments". I couldnt get throu to her that the hospital doctors know nothing about ME/CFS and cant help me at all and I need specialist doctors who arent hospital ones for it.

    Dealing with Disability services is like dealing with a big black hole of complete lack of knowledge.

    To top that off she said went on about getting me diagnosed (or something like that cant remember her words)... so I once again had to state that my diagnoses are ALREADY KNOWN and I need to get to my specialists for them. Then she said something about how no POTS test has been done so I once again had to tell a disabilitySA person that this test can be done in any drs office and has been done before (poor mans test). I felt like she couldnt get her head around it all at all (Im positive she didnt).

    Then she mentioned something at Flinders Hospital so I had to tell her that Ive already tried that and their "pathways program" or whatever it is called (she didnt name it but I knew right away what she was refering too) but its is only for educationing drs who are interested in ME/CFS and not rather to provide help to ME/CFS people, people keep on refering me there but that service cant help me and told me when I contacted them that I already have the best doctors in this state.. which I already knew (so once again Helene obviously didnt note all this down as otherwise the higher ups Im dealing with now would know all this).

    It's like Im having to go throu everything over and over and over again every time a new person at DisabilitySA gets involved. Why in hell arent they keeping good records of what has previously been suggested to me and tried and ruled out. Im feeling so frustrated with the states disability service who is supposed to be helping me, not knowing even basic ME stuff and constantly think I can do much more then Im capable of doing. ***rolls eyes at the "you can catch a taxi there" statement** They cant seem to be able to get their heads around that I collapse a lot so its not safe for me to be leaving my house alone ANYWHERE (Ive collapsed sooo many times in carparks just trying to go from a car to a door). I guess that is one way to get me out of their hair by getting me to do unsafe for me things so I possibly end up being hit by a car (that's if I could even handle taxis with the deodourants which make me ill and make my symptoms far worst).

    ps.. probably the most ridiculous comment she made during this phone call was when she mentioned about getting me proper medical help ie she means hospital help.. so I can have a "recovery". Yeah that is right.. the word recovery was actually used as if she believes ME/CFS is a illness we recover from. She has no understanding at all that the relapse Ive had throu lack of support, isnt something in which is easy to recover from at all. No understanding there at all that relapses in my condition, that getting back to my previous baseline usually takes me YEARS of the best treatment I can get, to actually recover from (if it can be done at all). They have no idea of the severe damage they've caused to my health due to their neglect/discrimination.

    Im feeling quite tired today (on top of having all my normal ME/CFS symptom stuff).. was up very early as Im feeling "wired" over all the problems Ive got with Disability services.. I can feel my adrenaline is way up so affected my ability to sleep.
     
    Last edited: Feb 17, 2014
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  2. taniaaust1

    taniaaust1

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    More proof my baseline has gone dowhill more just in the past 3 mths.

    Yesterday's shopping trip showed me that I have gone downhill more (more then I'd realised) on a baseline level

    I used to be okay to go without a wheelchair if I only needed to go shop with a support worker and grab 3-5 things at the most (I could still do that up till a few months ago). As I'd ended up doing a big shop on Friday last week (due to the weather stopping me being able to shop on my normal weekly shopping day)..so on my normal shopping day this week, there wasnt much at all for me to get. 4-5 items with the 3 of us to get them (me and the two workers allocated to take me shopping) so I thought I could do that without the wheelchair esp if each person grabbed just one or two items and then we quickly left (I planned to wait on a bench if their was a queue out at checkout, as its standing at checkouts which really do me in). Turns out that I now arent even up to grabbing just an item or two without a wheelchair.

    I started getting sick just after I'd grabbed the first item... my support worker must of noticed as she started to suddenly ask me over and over if I was okay (she said afterwards that I was very dark under my eyes and didnt look well). As I was at the back of the shop at that point, I felt there was nothing I could do except reassure her so she wouldnt panic and tell her I was okay (by that I meant.. Im not about to collapse RIGHT NOW, this second, I felt so ill thou) and quickly grab the last thing on the way out.

    As luck or no luck would have it, the three of us headed in different directions over a shop couldnt find that last thing I needed so this shopping trip took 2mins more then I'd expected. Its dreadful when we knew we only have a minute or two before we could be on the floor of supermarket).

    No wait at checkout so I was able to go right throu (by this time I was very dazed out, felt stoned like I was on another planet, vision all blurred, dizzy and nauseus). I was wonky by this time..wondering if I was going to make car. A support worker went and got the car and put it right at supermarket door for me in non standing area (while I sat on bench with my other worker). I then on the way home.. almost vomited all over her car. I started reeching and swalllowed a big mouthful of vomit so I didnt do it all over the car. Worker started panicing at my reeching and the swollowing of vomit (I guess its not a nice knowing ones car is about to be covered in vomit) and her driving then started to scare me (she wasnt concentrating well on the road by that point). I then had to hang illegally out of her car window all the way home (wasnt going to cause a disaster in her car if I could help it)..

    **sighs** so much for being able to go to the supermarket and just grab a couple of items now without having to use the wheelchair. My OI issues when Im on my feet are so bad. Im upset today as this incident showed me what I already suspected, that I are on a slow downhill slide of my baseline... every few months.. I notice Im sunk even lower. By the time all my issues are sorted out with the disabilty services.. its probably going to be too late. By the time they give me the support I needed 12 mths or 6mths ago.. Im so much worst and hence then needing even more.

    ...............

    Makes me all the more annoyed the doctors put "fatigue" on my letters to DisabilitySA .. fatigue? truely does this sound like fatigue!! Its not fatigue which usually stops me doing things, one can push throu "fatigue".. one cant push throu the other stuff. I was not affect by FATIGUE on my shopping trip, I was so plagued by my other ME symptoms that I dont even remember if I had any fatigue or tiredness. My OI prevents me from being able to do much so prevents "fatigue".

    How can ones "CFS" specialists advocate well for a person when they dont even understand ME and how it can affect a person?
    ..............

    Im in some anxiety today.. wondering how on earth Im going to get to the DisabilitySA appointment in a couple of weeks (will the adovate pick me up? can she pick me up seeing she has a motorized wheelchair?.. maybe her car is specially designed for her or maybe she catches disability taxis). If she plans to take me.. has she got air freshener in her car (I can collapse with that, it can make me very sick). On top of the "how are I going to get there thing"..

    Im also very concerned if the ones Im having the meeting with will be wearing perfume. Seeing the state disability dept ignores all my medical problems. I doubt very much that they wont wear chemical deordourants or perfumes the day Im meeting them. I often cant even wait in a doctors surgery due to this issue... so how are I going to do this meeting I need? (I do not want to come home from the meeting dreadfully ill or with worst ME stuff and I NEED to have a clear head and not be dazed out due to perfumes at that meeting).

    I dont know what to do. There is a chance I "may" be okay to their perfumes.. it would all depend on what is in the things (thou i still dont know which chemicals in some of them I react too as the manufactors wont tell the ingredients when one rings to try to find out). I dont want the appointment to go all wrong.

    My elderly friend may be visiting tomorrow to help me with things so I'll see if he can witness a phone call I have to them (as I dont trust that they will stick to whatever they say either).

    Im also very concerned as Ive never got to meet with my advocate as what I think is the usual thing done. I set up the meeting at the disabilitysa place as she couldnt come to my house to discuss my issues with me due to me not having a wheelchair ramp. After that first discussion I thought we were going to have, helping her understandng ME and my issues more, I thought a second meeting with the disabilitysa would be arranged. As there has been no sit down together discussion about how I am and only some phone calls (and I do do well talking on a phone with my Aspergers etc..hate speaking to someone I cant see.. it gives me anxiety) and how its going to be a straight meeting with disabilitySA and my advocate (with no previous meeting with my advoate)

    Im wondering how in the hell is she going to be able to advocate well for me. I dont even know if she's seen my doctors letters and reports as I couldnt stand at my printer and print them all for her..so dont know what disabilitySA has told her they have there. How will the advocate advocate for all my health issues when she dont even know what they are?

    The system is a mess.. I really needed that meeting with just her and I first to be able to explain my complex illness better to her and dont understand how our first meeting is going to be now with disabilitySA there too. (Im feeling like its doomed for failure before even its held due to this..how can someone advocate for a person with complex issues when they havent even sat down first and talked together). I really need to ring up and express these concerns but on the other hand.. I dont want to look like Im being difficult.
     
    Last edited: Feb 18, 2014
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  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I like that he capitalized 'all'.
    I don't think MALAISE gets much respect either. I'm not sure what would. Exhaustion, low energy?
     
  4. Valentijn

    Valentijn Activity Level: 3

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    How about "Disability"? :p
     
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  5. taniaaust1

    taniaaust1

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    Yeah Malaise doesnt describe P.E.N.E. well either. I wish they'd just write "Severe Symptoms" ..and leave the exhaustion, tiredness, malaise out entirely.. as our multitude of symptoms other then P.E.N.E which people would go "what in the heck is that".. there is no other way to describe them.
     
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  6. taniaaust1

    taniaaust1

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    Ive been stressing out for days since that phone call from DisabilitySA which showed their high up knew little about my case and hadnt been passed on the info. Im so stressed about the naivity there.. that Ive become almost phobic of having to ring them. With my Aspergers I find making phone calls to people hard to start with, without me having to ring people I have issues with.

    Ive been quite unwell too as in I cant stay awake for long and just fall asleep (like narcolespy). Ive been sleeping 16-18hrs per day since Friday and due to this have been only eatting about once per day (hard to eat when one is asleep). I felt physically and mentally exhausted.

    Today.. finally almost back to normal, well enough to be able to do a couple of things (thou I still had to have an an extra sleep and go back to bed for a time just after being up for 2hrs), all that sleeping 16-18hrs, was over just having a support worker here on Friday which usually causes me to overdo (I did too much while she was here so ended up in bed due to that before she left) and the post excertional fallout of that and probably caused too by the stress Im under with the Disability service people. Scary how much Im declining... if this keeps up I soon may not be able to come here anymore.

    Anyway.. Ive just sent an email to my advocate over my concerns.

    "Leatha,

    My condition is still deterioriting due to lack of support and Im now sleeping 16-18hrs per day on most days (just fall asleep cant stay awake after a short time up).

    DisabilitySA has made an appointment for me next Monday at their office as I said I wanted you (an advocate) to be there too and told them you couldnt get in my house due to your wheelchair so we arranged at thier office. Sorry I forgot what time (they rang when I was in bed from my condition, so had been asleep so wasnt in a state to get up and get a notepage... so will have to ring them again and find out and find the time out. Will you be able to make it on Monday?

    Ive been very concerned about several things

    1/ How are I got to get there? (my elderly friend who "may" of been able to take me there is away interstate again).

    2a/ My condition with some perfumes/chemicals/artifical fragrances. If you are picking me up... I will be needing you to wear no chemical deordarants nor have air freshener in your car (that applies to whatever is picking me up, DisabilitySA hasnt granted me extra support for one of my support workers who dont wear fragnances etc to take me to the meeting)...

    b/ Im worried about the waiting room of DisabilitySA..whether they have air fresheners in there. Note I cant attend some doctors surgeries due to those and I often have to wait outside if another room needs to be provided to me to wait in as I cant always wait in waiting rooms if others are there with perfumes/deorderants Im reacting too. Im extremely worried that DisabilitySA may not met my needs there esp since they keep ignoring how sick Im anyway.

    c/ Im worried about the meeting may screw up if one of the ones Im meeting with is wearing artifical frangrances I react too. I cant be in a room with anyone wearing things which are making me sick. It not only gives me MCS reactions but also affects my ME/CFS. (If Im feeling very sick it will make it very hard for me to focus on the meeting). Due to their ignoral of my health issues, I do not feel like I can trust the disabilitySA people not to wear things which may make me feel worst.

    For the above reason, Ive come up with the idea of that maybe we should have the meeting at my place but out in my backyard where I wont be so affected if they are wearing things I'd react badly too.. your wheelchair can go there. Its a real mess out there but its the best thing I can do with my condition the way it is. It was kind of stupid for me to try to arrange a meeting out of my house with all the issues I have but I was trying to do something which would be okay for you and the yard thing should solve this (as long as it isnt raining or too hot outside for me in which we'd then need to cancel the meeting).

    The DisabilitySA regional manager? I think it was, sorry I forgot name..when she rang.. Friday??, she stupidly suggested I catch a taxi to their meeting. So once again info, thou I was told this person knew all about my case, it shows that she hasnt been told much at all!! as otherwise she would know I cant catch taxis due to my disability and health issues. She obviously by saying that that isnt aware that I collapse a lot nor aware of my perfume issues. (the more I speak to DisabilitySA people, the less faith I have in them as so much of what they say is mistruth.. lies about how the regional manager knows all about my case.. the temp case worker had told me that).
    ..........

    Another problem Ive currently got is that thou I told the disability person I have now that I get overwhelmed with too many people (with the Aspergers). It's still being arranged for me to have TWO from disabilitySA at the meeting. So that will be me and three people I dont know well (Im still not fully comfortable with even you as we havent met yet..so its like you are still a bit of a stranger to me too). Just the thought of this is stressing me out heaps.. This is likely to leave me feeling so uncomfortable that Im not going to be able to express myself well at the meeting and may prevent me from saying what I want to say at the meeting (which defeats the purpose of a meeting in the first place).

    Im wondering if you can advocate for me and tell them due to my Aspergers that Im not comfortable at all having so many people I dont know at once in meeting with me. I'd really like the meeting just to be with one person from DisabilitySA and with that one person being the person who is going to be able to answer my questions (something the caseworker person one hasnt been able to do and keeps saying someone else is responsible for things).
    .............
    My other concern is currently over you. Im wondering how you are going to advocate for me when you dont know much about my complex case and I assume you dont know much about severe ME and we've never met and discussed things properly? (I dont talk well on phones as Im not comfortable with them).

    Im highly uncomfortable as I dont even know how much DisabilitySA has told you about it, if myths were told instead of facts and even if all the info Ive presented to them via Helene on my condition and my issues, if it's been put into their file (thou I gave it to her to do so). I'd wanted to see what you saw so I knew what you had seen so I knew if you knew all my info to be able to advocate for me well.. so I would then also know if things were missing out.

    When I was going throu getting a disability pension and having to appeal.. due to biased there on ME/CFS, it turned out that a lot of the info I'd given which was supposed to back up my case had not even been put into my file like I was told it was. Due to I could tell their was biased going on and decisions being made which made no sense at all eg me being knocked back for a disability pension when I couldnt even sit the whole time in their office and was on their floor.. I applied under the FOA to get a copy what was there I ended up having to resubit everything again and I only found out about the missing stuff after (if I hadnt found that out much of the info I'd provided for my case had been removed from my file or not put there, I probably would of ended up with yet another rejection).

    I know this is a different gov agency but what has happened in the past has left me with lack of trust of gov depts and their ability to deal correctly with ME/CFS people.. and throu time Ive had this thought strengthened as they have certainly not shown any understanding towards ME/CFS. I dont know if you've seen all my medical stuff etc etc as I dont know what they showed you. I'd like to make sure you have all the facts so I can feel comfortable you have all the info to advocate well.

    Im further feeling freaked out by the situation re your letter as its like there is only one change to get this right. You tell them stuff and ask and they have every right to just say no and leave me then without the extra support Im needing... You wish me to sign something which is one chance only so hence I need to make sure you have all the facts so you can advocate for me well. Im needing to know if what DisabilitySA info gave you was correct etc and all there.

    . I need to talk to you about this letter as Im needing advocacy not just for those things but also to stop the ME/CFS discrimination towards my case too by DisabilitySA. I have constant issues with them over it cause they arent educating themselves in severe ME so dont at all understand my case (they seem to think its just about fatigue or something like that and dont understand that severe ME people get tons of different problems which affect them eg MCS, dysautonomia and other issues I have).

    I find it hard to speak to people and get the info Im trying to get across across (except in letters) and as I said the issues Ive had with DisabilitySA have been CONSTANT.. lots of different issues as they dont understand my medical issues. Im in need of a permanent advocacate from somewhere (and not one who is going to change on me all the time as with my Aspergers I arent comfortable dealing with a lot of people and my total conditions are so complex that it can take quite a time for someone to understand them). Like many who have complex severe disability, Im very sick with lots of problems and in need of a caseworker but how can disabilitySA casework for me when they dont understand my condition and just give me problems so I need someone to help me deal with them?

    eg Another issue which needs to be dealt with ASAP (esp since Im getting worst) is the fact that Im often not able to go shopping so are at times left without food..that happened last week yet again (or it may of been week before.. I was left 4 days without food as I was too ill to go shopping) as DisabilitySA will not allow my support workers to take my bankcard and get my money and shopping for me. (my computer is very old and cant download sites which have all those pictures eg the shopping sites it doesnt load the pages, I dont do online banking as I find it too complex.. I often loose my passwords and cant get into my email etc etc.. every time my elderly friend goes away.. by the time he's come back, Ive confused all my accounts again. I still cant currently get into my photobucket and havent been able to do so all this year).

    Ive taken up all disabilitySA suggestions but they have failed to help eg tried to use the home delivery service my shopping centre (Foodland) has..but they dont do it unless one has cash on one and wouldnt allow me to do it using my bankcard over phone (DisabilitySA is going to talk to them but Ive already spoken to the shops manager of their home delivery section without luck). My local Woolworths dont do deliveries. Last year I got into an arguement over rotting food a support worker throu out, its all I had and I was too unwell to go shopping myself.
    Anyway..once again I was in tears over not having food here and not being able to get it due to not being able to get the level of support Im needing at times.

    Anyway.. could you please give me a ring after 11am or today so we can talk about all these things. Dont take my discomfort personally, it takes me time to feel comfortable with anyone. Im currently struggling to ring DisabilitySA on the phone and getting a lot of anxiety over having to ring them and tell them I have issues with their arrangment which doesnt take my condition into account enough (I also hate phones) .. wish I had their email to contact. I'm going to post them a letter tomorrow asking for the appointment to be held here with you in my backyard so I dont have to stress about everyones perfumes/deorderants possibly making me illner.

    Thanks
    Tanya "

    I hope it went throu, its in my sent section of my email so appears to have gone throu but I got a message come up saying there was a problem. That's been happening to me a lot lately with my email.
    .............

    I tried to write to the new national ME/CFS centre/clinic at griffiths university the other day http://www.meassociation.org.uk/201...ens-at-griffiths-university-30-november-2013/, trying to find out if I could get an distance appointment throu there and to see if they could help educate this states disability service on ME/CFS but really messed up the letter so much that I deleted it so need to try to write another one (if my health holds up enough I'll do that today/tonight). The patient clinic part is meant to be opening very soon.
     
    Last edited: Feb 23, 2014
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Do you have a chemical mask, Tania? I have to wear one in my garden due to almost all my neighbours using perfumed laundry products, air 'fresheners' and cleaning products. I can tell if someone has just opened a door or window as the smell is overpowering and I start hypersalivating, so that I often have to wear the mask as a precaution when going outside, or even in my extension as it isn't airtight, because once I start hypersalivating I have to spend about 5 minutes spitting out the foul-tasting saliva (tastes like soap) which I can't do with a mask on!

    Some crap still gets through the filter, but it really helps. This is the one I use. You need to get the chemical filters as well as the mask, as the mask only comes with particle filters.
     
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  8. taniaaust1

    taniaaust1

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    No I dont have one right now. I have researched them thou (I'd need a decent one if I was to wear one eg one of the charcol activated ones which removes the actual toxins so yeah with my past research I saw I'd need one with the chemical fiters and not particle.. not cheap). I also have the issue of chemicals making my eyes burn so would need those covered too.

    With my Aspergers I really cant handle people staring at me, I really dislike being looked at (someone staring at me can make me cry as it just makes me want to run away..it really unsettles me) so I cant see myself wearing a mask while out in public. (I used to be able to like block that out but due to being sicker again and the issues Ive been throu with DisabilitySA.. I now feel even more vulerable and I believe that has played an impact and worsened for me what already was hard with my Aspergers.. people looking at me). Yeah I know what you mean about getting a foul taste in the mouth too when chemicals hit but to me it doesnt taste like soap, I swear sometimes I can actually taste the chemical as if someone put in my mouth!.. thou that happens to me as well thou its not really a symptom I worry about thou it is yucky.

    Ive really had some severe affects with chemicals including they at times seem to have been responsible for me collapsing (they can also very badly affect my brain.. I got hit with someones perfume in a petrol station one time back when I was still driving.. it left me not knowing how to put petrol into a car and not knowing my address thou I'd lived there over 19 years).
    ...............

    In the past I was worst with chemicals .. avoidence has greatly improved how badly I react to them when I do get an accidental exposure. In the past I was having trouble when my neighbours just washed their clothes and hung them outside (used to make me dizzy) even from inside my house (with doors/windows closed.. my sensitivity used to be at a crazy level). I could always tell when she did hung out her clothes. I also had got to the point where I was getting symptoms from the laundry powers on the clothes of people who entered my house (fortunately Im currently fine there as long as someone hasnt only just washed their clothes and put them on..Ive only had issues with that once in the past year).

    I need to make sure I dont flare the MCS up to be that bad again...there is a real danger that it could get that bad again and then I would have my life even more greatly affected (as then my support workers with their washing powders would become an issue).
     
    Last edited: Feb 24, 2014
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I do understand the self-consciousness thing. I don't wear my mask when I go out except in my garden, and don't like visitors seeing me wearing it either.

    I have had some bad effects from perfumes too. On two occasions I was just sitting doing normal things, in a normal mood, when I caught a whiff of something and instantly started sobbing, with tears pouring down my face, in a state of severe, acute depression. It stopped again within minutes almost as soon as the smell disappeared, leaving me shaking and wondering WTF had just happened.

    Re affecting your ability to think, research reported in 1991 found that galaxolide, a chemical in widespread use in artificial perfumes, significantly increased the time that healthy young adults took to solve a problem, and that effects occurred even with concentrations so low that they could not smell it (Lorig et al., 1991).

    Reference Lorig, T.S., Huffman, E., DeMartino, A. and DeMarco, J. (1991) The effects of low concentration odors on EEG activity and behavior, J. Psychophysiol. vol. 5, pp. 69–77.

    I found this alarming, thinking about the potential effects on drivers, and children in schools, and have emailed my MP about it, but it seems that all attempts to raise the issues about perfumes fall on deaf ears. People just can't believe that a perfume can be harmful, despite scientists being well aware that the nose provides direct access to the brain.

    I can tell when my neighbours have hung out their washing too, especially in my leaky extension. Sometimes I have to stop using the downstairs loo for hours because of that, and have to drag myself upstairs instead, which can be exhausting.
     
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  10. taniaaust1

    taniaaust1

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    Today Im getting tons of anxiety over the coming meeting and all the issues currently around it. What has made things even worst for myself this morning is that Ive now forgot my email password again and just spent several attempts playing "guess the password" so are now so frustrated about the problems Im having that I just want to cry (I'd usually would ring my elderly friend at this point as helps me when things like this happen but he's still away interstate with his daughter and family. So right now I cant even access my email to find out if the Disability Advocacy and Complaints persno (Leatha) replied to my email on my concerns etc.

    Im so stressed out over the whole situation of dealing with DisabilitySA naivity and discrimination that I cant currently even stand the thought of ringing to try to sort out things out over Mondays meeting. I dont feel like I have the strength to be dealing with them (well I know I dont!!!.. I feel too sick to be dealing with all this stress and the issues Im receviing from the Sth Australias disability service.

    I had a very bad day yesterday and actually collapsed while workers were here even before we could leave the house to go shopping!! I then felt far too ill to go..but once again I would of gone without shopping if I didnt do something.. so yesterday thou i couldnt walk, I actually ended up having to CRAWL ON THE DIRTY FLOOR throu my house and outside to the supportworkers car as I couldnt walk!!!! (no ramp in and out of my house to take me straight to the car in the wheelchair). Its horrific.. having to go out when Im that sick (I felt like bawling at this situation)...and then once we got to the shops, I was so dizzy that the movement of being pushed in the wheelchair once we did get to the shops.. made me feel like vomiting as everything when Im feeling that dizzy, its like everything Im being pushed by is moving too fast past me (like as if being on a scary fast ride at the showgrounds.. i hate those rides..,so I was clutching the sides of the wheelchair as it felt so uncomfortable feeling like everything was whizzing very fast past me, it made me actually feel like I was going to fall out of the wheelchair and hence it became scary). It also made me feel as if I was going to have a seizure, I started shaking a bit.

    I ended up getting the money out, giving it to the worker and getting the other worker to take me straight home. Their is NO WAY I should be forced by the disabilty services into having to be even be taken out in that state, I desperately NEEDED to be in bed (I nearly melted down and started crying in the shop where I was gettin money out for the support worker as I felt that ill). Today.. Im upset about all that on top of everything else happening here.. every time one of these events happens.. emotionallly I feel worst and worst. Its not much different to being injured and then kicked by the disability service. Its ABUSE!!!

    I then was in bed for the rest of the day and all and night due to it (sound intollerence came in a bit again, something I hadnt had for while but its the second time Ive had that bad again in past couple of weeks. I was soo relieved when my support workers left as having them banging around the house while I was in such a bad way in bed, was almost intollerable to me and I was in no state to try to explain it to them)..and today not surprisingly after that,. I feel very vulerable and not myself and still not physically right.

    Im feeling so fragile and vulnerable today after this abuse that I cant even bring myself today to ring the disability service about the issues with Mondays appointment. I cant bear the thought.
    ..........

    My support worker who has been with me for a few months (she was my other at the other agency too) made a comment just before she left yesterday. That being "I think you are getting worst"..so it seems that even workers only being with me a few months can notice Im declining. Pity the state service doesnt realise this!!. (she tended to think its been since I had the collapse which put me into hospital but its been the slow gradual decline of my condition.. happening before that and still ongoing as I can not get the rest I NEED and without I have no hope of improvement).
    .........

    Im also upset and frustrated today over the loss of my email password, I was also hoping to hear back from the new Australian National ME/CFS clinic interstate and if there is a way I could have a distance appointment and they may of replied. (I sent them an email yesterday or day before).
     
    Last edited: Feb 25, 2014
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Doesn't the site give you an option to be sent a password reminder if you put in your email address? Most sites I use will do this. I use a lot of sites and sometimes have to use this facility due to forgetting my password.
     
  12. taniaaust1

    taniaaust1

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    Most sites when one looses a password, sends a new password or the reminder password to an email account. I dont know how "outlook" where my email is, works.. does anyone here know what happens if one does the lost password thing for outlook? Ive permanently lost passwords for things in the past when Ive gone the lost password route for an past email account and they sent the new one to another email I used to have but had forgotten about (I dont remember if I had to put in a second email to sign up at outlook.. I assume I would of had as isnt that how most email accounts when one joins up nowdays work?? -that is unless one give them phone number for security and password retrievals). Ive lost emails with the CDC and other important irresplacable things due to this kind of issue and accounts I couldnt get into in the past.

    .....

    Anyone.. Does outlook show the password on the screen without having to retrieve it in some email somewhere or to get the lost password would it to another account I may of had to open to join up? (then noone would be able to help me re the forgotten password.. that was the very reason why I lost my last email account I had elsewhere, then to resign up it wanted phone numbers etc as it had changed its system so I ended up having to then go to outlook)

    It would be terribly bad if I lost permanent access to my account as stuff in my emails and folders there, I couldnt replace .. I cant afford to risk that.
     
    Last edited: Feb 26, 2014
  13. taniaaust1

    taniaaust1

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    Im feeling relieved today. My Disability Advocacy and Complaints person phoned me.. Leatha .. she found my email in her "junk box" and said she'd been having some issues with her emails (my emails to her going directly to her junk box explains the weird messages I was getting when sending emails, leaving me not knowing if she was getting or not..being shown they werent going throu while at the same time showing they were).

    She's good as she's listening to my concerns re fears about how can she advocate for me with DisabilitySA when we've never met physically and discussed my case properly?...so we've now set up a meeting with just me and her outside (re the issue that she cant get in with her wheelchair when I dont have ramp and the house is raised a little).

    As we need to hold the meeting outside (in my very messy backyard! the people STILL havent rang me back in regard to what is being done about my yard thou the person now would be back from Holiday and would of got the message again on Monday requesting them to ring me to tell me what is going on), we've checked on the weather and its going to be 29 C so that should be fine for her and if its still too hot for me to be out there for long .. I can sit inside and talk to her outside throu the screen.

    Then we will have another meeting soon with DisabilitySA (so she's ringing up now to cancel out the appointment they arranged and booking another time for us with them, so her and I can sort out the advocacy stuff first).

    So I know I just need to get together my doctors letters, test results etc and good info to give her re this illness (and I'll also get her to bring with her any info she's already got about my case with DisabilitySA to see if its correct etc etc). So I'll be focusing on getting this info together for the rest of the week till our appointment on Monday.

    So if anyone has any good links for ME info.. please share them as I want to make up a list of good links where she read for more info on the issues and health problems Im dealing with. (I dont know if I mentioned it but I managed to get some inks for my printer so that is going again so I can currently also copy things, thou another one of my inks is now about to run out.. Im always doing a lot of printing, I know I'll end up running the inks out again getting ready for this appointment)
    ..........

    Im glad this stuff is sorting out but while doing this.. Im having to drop my focus on getting to my allergist as I cant do everything at once.. thou getting back to the allergist and working out what food I had my last major reaction to is important (protentially a life threatening allergy)., getting myself set up so Im getting the support I need is also extremely important to stop my current ME decline. One thing at a time.. current focus Mondays appointment with my advocate.
     
    Last edited: Feb 26, 2014
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  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Could you give your password(s) to someone else besides your elderly friend, perhaps some family member(s), so that someone would be more likely to be available when you need them?

    It sound like Leatha is a capable advocate. I hope she is able to accomplish what you need. I would not worry about the condition of your backyard when she comes. That will just demonstrate that you are not getting the assistance that you need.
     
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  15. taniaaust1

    taniaaust1

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    For anyone wondering how my meeting went with the advocate yesterday.. well the meeting ended up not going ahead :( (with a slowly declining state Im wanting things to sort out ASAP but sometimes it feels like everything is working against me). Its frustrating

    She canceled out yesterday mornings meeting on me yesterday morning. I only found out the meeting wasnt going to go ahead after I'd unnecessarily showered and dressed for it!!!.. if I have nothing on I usually stay in my sleepwear all day to conserve my energy etc so it was annoying I'd used up energy on those things rather then doing something else.

    She was the only one in her office so couldnt get away to have the appointment with me (I wish she'd closed the office and attended the meeting with me instead of last minute cancellation seeing things like that do impact my life and made me unnecesssarily waste energy). My time in doing things is very valuable as Im so short of available time to be able to get things done with the way I need to pace my life out.

    Now Im concerned that it may be too warm to hold the meeting on the next date she is available (which is over a week away so I cant check the 7 day weather report). It needs to be 30Cor preferable under that seeing the meeting needs to be held outside. If it turns out that the meeting cant go ahead due to weather that will then mean that my appointment we have with DisabilitySA will have to be cancelled too as we need this meeting between me and advocate before we have the other meeting. (and in the meantime while this is all dragging out due to the issues, means I arent getting to a specialist appointment Ive been granted.. which I also really need to get too as these meetings are being put on free days when I would otherwise be going to specialist).
    ......

    I was upset too yesterday... ants got in the air hole of the container I had baby crickets in for my frogs which was up on one of my cupboards (ant yesterday also once again got in my ear.. third time in 1year!). The ants killed all the crickets so then I had nothing for my frogs.. I dont like ordering online baby crickets as they could all die (or some of them) in the transport and I cant buy crickets in my local suburb and need the big supermarket complex not far from me but which DisabilitySA wont allow my support workers to take me too).

    I was so stressed over this that I ended up releasing the one I had inside to keep as a pet due to not then having this food for it (and Im not really well enough to be out in the garden all the time hunting for insects). Crappy discriminating (my support workers all wonder why they've put that stupid rule onto my support contract, keep affecting me.

    My elderly friend has got back from interstate but he hasnt been able to come here at all to give me a hand with anything and cant do so till next week. (it turned out he could of came yesterday but he then made other plans seeing I had the appointment arranged to see me at home and couldnt then change his plans when my appointment was cancelled). He could of got the crickets otherwise and also got stuff Im also needing to get from a hardward (no hardware store in my suburb). So this is yet another week in which the only support Ive been able to have is the 5hrs I get per week (lots of missed meals this week thou I tried to cook most of my meals this week... Ive burnt 2-3 meals in past week including dinner last night which I as Ive often been doing, fell asleep while it was cooking. Ive been doing that more in the past month then forgetting its cooking).
     
    Last edited: Mar 3, 2014
  16. taniaaust1

    taniaaust1

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    ummm I guess I can try that and ask them. Not sure how I'll go, one of my sisters i think? passed up her power of auterney over not wanting to be bothered with my fathers health issues or maybe she is still involved in that? I know my fathers health issues and having to watch out for him, was running her down.

    She's the sister who told me when I moved in.. to not visit her much as she has a too busy life and only gets to see her friends once every couple of months.. sighs.. she didnt even think about how on earth would I visit her when I dont drive!). I could try thou (I get very upset with the knock backs I get from my family when Im desperate for help and ask..makes me feel depressed when that happens.. sometimes I feel its better not to ask them as they so rarely help me with anything even once of things. I have huge issues with rejection due to how bad my family has been with ME/CFS .. it the past it used to make me feel suicidal. Ive come to not asking my family for any help unless there seems a fair chance of them saying yes.. to protect myself emotionally.

    Another of my sisters has CFS so looses her passwords and my third sister thinks that people with disability eg me ..should be in a home and family not having to look after them!!! She actually refused to allow me to stay at her house one night after I had an appointment in the city and couldnt get home.. so I ended up having to sleep the night on the street. (I will never forgot that rejection of making me how to sleep on the street, that hurt!).

    I could also try to ask my daughter who hates being hasseled by things (so recently moved far away from rest of family and wasnt telling people as she doesnt like hassels). My daughter was my carer when she was a young child and lived home I think this left her with resentment or something of having to help me. She really really hates any hassels put onto her, she got really annoyed at me over me not being able to work my phone and having to ask her a few times to show her..she got very frustrated with me. (I fear if I ask her if she can help me with passwords and ringing her about those, she's likely to stop answering the phone when I ring). I really think having to look after me when she was so young... has affected her.

    All I can do is ask I guess (but so far my family hasnt helped me at all with my disability.. in fact many of my family members ignore my issues.. eg uptil recently (only this year).. my mother ignored my MCS and wore perfumes at every family function and made me sicker..she also ignored my POTS and wouldnt even let me have my legs up on a chair the one time I was at her house.

    Recently I was hoping she'd advocate for me..but all she did was say I should be contacting this and that person about how badly Im being treated (she's aware Im being treated bad by disability services) re not enough support and doing this and that. She actually now goes and changes the subject whenever I bring up anything about my health (so did that last phone call I had with her.. she was quite rude actually.. I was quite upset about something at the time and she just quickly went and changed subject as she didnt want my health issues brought up).

    The more I think of my family and the things (rejection) they've done. The harder it is for me to want to ask for their help, I want to protect myself emotionally from being more hurt then what they already have done (im not talking about knockbacks here and there, Im talking about them having no time for me basically at all nearly all the time and not wanting any hassels of any kind put on them). (In the past I thought about completely disowning most of my family to save me from emotional pain.. except my daughter). Its very very hard for me to now ask anything of them.

    all last year they all knew I couldnt get to any of my specialist appointments as I was always upset about that and talking about it whenever I saw them.. not one of them took me to a specialist appointment thou.. When Im in hospital.. will one come and give me support.. nope not usually. When I had the collapse recently and got taken to hospital by amulance and needed support as I was left then sitting in a waiting room (that is till I collapsed again). I phoned my sister to see if she'd come to the hospital.. her reply was "sorry I cant, Im about to take my kids to the beach" that beach was only 5mins from the hospital where I was!!.. Her reply really hurt!!!. They keep doing things like that to me. I hardly ever ask them for things either but when I do.. I 95% of the time end up being hurt by the reply.. hurt to the point then that their latest abandonment will play on my mind for years. Im less important to my sister even when taken to hospital by ambulance, then her and her kids having fun at the beach!!

    . So is it likely at all any of them will want to try to be my memory and help me with my password issues.. I think not. (Im going to offline for a while, its upset me just thinking about it and their rejections when I need help, its very distressing). I really dont think I can put myself throu that again... I dont want to see once again how little important I are to my family.
     
    Last edited: Mar 3, 2014
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I understand completely what you mean about your family and how it makes you feel. Mine were the same (parents are dead now, and it was really no loss, which may sound terrible to people who have not experienced such emotional neglect).

    I'm so sorry that you have been let down by your care workers as well.

    I hope that things get sorted out soon.
     
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  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I do agree that the sister who loses her own passwords would not be a good candidate. I didn't mention friends because this disease tends to cause us to lose our friends. If you still have some, they might help with your passwords.
     
  19. taniaaust1

    taniaaust1

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    With Aspergers and certainly also with this illness yes.. Ive lost what little friends I had.. people do not like "burdens" (I never had many at all in the first place due to having Aspergers.. and finding it very hard to make friends. It sucks. New neighbour moved in recently (a couple o months ago) and I tried to make friends with her.. took her over some eggs...hoping she'd invite me in... she just took the eggs and sent me on my way.
     
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  20. taniaaust1

    taniaaust1

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    My current support agency workers are great. When I was FINALLY transfered over to a better agency, turned out one of my old support workers was working there too so she was able to stay on with me. The current new girl Ive had for past month is great too. I cant say enough positive things about the agency Im with now, they are so great (other then one of the first support workers I had there who was really bossy and pushy so I asked for another worker so they gave me another no probs). It thou must be a nightmare for them constantly changing my support days/times due to the weather and when I can get out.

    This new agency is called Assured Home Care.. its so diffferent then going throu the agency CSI .. Community support incorporated which was terrible for me (they thou had some great workers, the issues were complaints were never dealt with and the organiser Margaret who struggled to get her out together and let me down with appointments and other things)). If anyone in SA is getting put with an agency.. make sure it isnt CSI as they'll treat a ME/CFS person and the issues we get around that, like crap (they wont take any problems you have seriously at all). There are much better run agencies out there who can better cope with our needs (I found the home support agencies CLASS and also Calvery Silver Circle very good in previous dealings or support with those).
     
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