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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. AndyPandy

    AndyPandy Making the most of it

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    @taniaaust1 this will be my first visit to a specialist ME/CFS clinic. I wasn't well enough to go in the earlier stages. My husband will be coming with me. I am in a wheelchair and could not make the trip by myself. The trip will be a major effort but hopefully worth it.

    Here is what I wrote on your behalf to my contact. Don't worry too much (in an aspy kind of way) if it is not 100% correct :)

    Hi XXX
    I would be grateful if you could give me a call to discuss getting some assistance from Uniting Care in SA for a woman living in Seaford Rise, SA.

    She has severe ME/CFS, POTS, Multiple Chemical Sensitivities and Aspergers, among other health problems. She is severely disabled and is largely housebound. She uses a wheelchair to get out. She is unable to use the chair by herself. Her multiple chemical sensitivities mean that anyone coming to her house or transporting her can't be wearing deodorants or perfumes as this will make her very ill.

    I have become aware of her situation via an online forum for people with ME/CFS. She has given me permission to contact you and seek help through Uniting Care.

    She has minimal assistance through disability services in SA. It is not nearly enough to meet her basic needs. She has been battling for years for more assistance, to no avail. ME/CFS is generally not well recognised as causing severe disability and leaving sufferers unable to perform tasks essential to daily living.

    Things have gotten out of hand for this woman and I understand her state government accommodation is cluttered inside. This includes unpacked boxes from a previous move possibly more than a year ago. Her garden is overgrown and hazardous. She does not have support from family or friends and as she is on DSP she is not in a position to pay for assistance.

    She does not have sufficient support for her house to be clean to a minimal standard, for shopping to be done, errands to be run, for transport to appointments, the bank and the chemist, for paperwork to be attended to etc. She is at the end of her rope with her health issues and her living conditions. She is exhausted from trying to fight for basic needs to be met. She is worn down by the lack of understanding and compassion experienced by people with disability, including people with severe ME/CFS. She wants to give up on life.

    I understand that she may have had contact with Wesley Uniting Care at some stage in the past regarding a request for assistance, but this assistance didn't eventuate, possibly due to missed phone calls etc. She now does not have the energy to follow this up for herself.

    I realise you are always so busy XXX but would be grateful if you or someone else could look into this.

    I am happy to provide this woman's name and contact details if Uniting Care SA is able to assist.

    Many thanks

    XXX
     
    zzz, Tammy, Indigophoton and 5 others like this.
  2. taniaaust1

    taniaaust1

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    Update

    The blood nurse just came and she was okay about taking my blood outside (re the perfumes/deordourant she had on). My body thou was being uncooperative as per usual.

    She tried to get blood from my best arm (no luck at all, not a spec), as I have some prominant foot veins a decision got made to try those at the top of my foot, no luck thou (not one spect of blood), we went to the other arm (she said this was going to be the final try, if this didnt work she was going to have to come back another day).

    She pushed the needle everywhere just like she had the other spots, seeking and seeking and found what she thought was a good vein but it would only let out the tiniest amount of blood into the tube at a super slow rate. (she was surprised at that, I had to explain to her that Im very very down on my blood volume).

    She put the tiniest amount into that tube,, a laughable amount, probably only about 3-4 drops of blood before going to the next tube and doing the same. At the last tube the vein stopped working at all. She said she doubts very much that the tubes have enough blood to run the tests but has taken back to the lab to ask.

    Looks like she is probably going to have to come back another day and retry to get my blood

    Note.. trying to get blood taken from the top of the foot, really really hurts!!! (It hurts 10-15 times more then the arm) .. and I had to attempt to not move my foot or move my toes as it would of caused her to slip with the needle.
    ......................................

    Disability Services rang me just before the blood nurse turned up here againt (I had to hang up on them due to her showing) as my support workers have reported that Im suicidal to the agency which in turn has reported to the state disability service. So the state service was ringing asking if they could send out an ASIS (or whatever they are called) to assess me and asked me if I wanted to call them. I said no I wont be ringing them, I cant see at all how a mental health team will be able to help me right now when my issue is with the state disability services neglect and discrimination towards me and that is what Im hugely distressed over and the lack of home support etc

    So she asks can she ring them....as I know she would anyway, I said well that's your choice, so do what you want. **sighs** so now I will have a mental health team showing up to give me an mental health assessment. umm they darn well best not to want to come inside my home wearing deodourants. I can see there is about to be some trouble here.

    They will probably lock me away (either that and come and just ignore the situation).. no doubt they will probably put my MCS down to mental health issues and with my GP away right now. for weeks, I cant call on her for help if I get into trouble with them. So Im about to run into a hell of a lot of trouble here I think. I may be about to be commited against my will as Im not about to go to hospital to go into a psych ward willingly (where on past occassion my ME/CFS got completely ignored, they put me into the noisest room by a rec area, threatened to drag me out of bed very early in the mornings etc, had me in a situation where I couldnt get my needed rest during the day)
     
    Last edited: Aug 6, 2014
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Don't borrow trouble. They might help you.
    Try to stay calm and point out to them all of the reasons you have to be depressed.
    The unpacked boxes that prevent you getting across your apartment in your wheel chair.
    The unkempt garden.
    The times you go without food.
    Your inability to prepare the diet you require.
    The times unwashed dishes pile up.
    How long it has been since you saw your various specialists.
    How long you have been waiting on support hose.
    They might decide you have every reason to be depressed and get on DisabilitySA's case.
     
    zzz, Tammy, Indigophoton and 3 others like this.
  4. taniaaust1

    taniaaust1

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    Great letter thank you sooo much. I really would appreciate it if you would send it to your contact. I assume you got my pm (convo as they are called here) with my phone number? let me know if for some strange reason you didnt.

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

    I really hope your appointment goes well. Im so glad to hear you have a husband to take you.
     
    Indigophoton and golden like this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Knowing how hard it can be to remember things when we need to, why not write these down and put the list in a prominent place so that you can find it when you need it, but ideally not where you will keep seeing it yourself. as that might make you focus too much on the bad things.

    Sometimes I have written lists of reasons to be cheerful or things to be grateful for. It can be surprising how many one can find sometimes, although I know from experience that it can't help when one is clinically depressed.

    For example:
    • I have a home
    • I have many friends on Phoenix Rising who care about me
    • I don't live in a war zone (I do often think about that one due to all the horrors that I see on the news)
    • I may start getting proper help soon
    • I may be able to get registered at a good ME facility (Griffith)
    I'm not downplaying your situation - just want to try to lift your spirits off the floor.

    BTW re the Wesleyan Uniting Care organisation, I did an internet search and there is a list of agencies here.

    Make sure you get the spelling of Wesley right, as you need to keep a million miles between yourself and anything relating to Wessely, the British psychiatrist who is the cause of so much of our suffering.
     
    Indigophoton likes this.
  6. AndyPandy

    AndyPandy Making the most of it

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    Hi @taniaaust1

    I have sent the email to my contact and they have already forwarded it to a colleague for action. They are good people who have disadvantaged people's best interests at heart.

    I will follow up with them and keep you posted when I can.

    I have your phone number from your PM. I will wait for something more concrete from Uniting Care before disclosing your name and contact details. I will not forget to mention not to call before 11 am and will explain why this is very important to you. :)

    Yes, I am lucky to have my husband supporting me. We support each other as he has his own health and life challenges to deal with.

    Best wishes Andy
     
  7. taniaaust1

    taniaaust1

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    You can hold confidence in my health system for me. I cant gather any. Right after I made my last post here, one of the mental health assessment team phoned to talk to me. I spent probably half an hour on the phone talking to him before I had to say to the guy I couldnt talk to him anymore as it was draining me too much and I really really needed to go and rest (hence I then had to spend the rest of today in bed and only just recently got up).

    Im almost sure he didnt understand my leaving our phone talk to go to bed. (He had told me he didnt know anything about ME/CFS and was trying to goggle it while we were talking. I give him credit for trying to understand and trying to learn but I do not feel up to trying to educate the psychologists who want to help me!!! It takes effort and energy and its the last thing I want to be doing when feeling like this).

    He said he could tell I was very frustrated and tell I was having issues with the disability services (no idea if he believed me thou that I should be getting more support). He wants me to see a psychologist. I told him I do not want to see a psychologist if they have no understanding of ME/CFS and suggested they ring the SA ME/CFS society to see if they can get any recommendations for me if they want me to see one. Anyway, he seemed to be ignoring that and seemed to think I'd do okay seeing any psychologist.

    Im very worried about this due to my past experiences with this in which a heap of attention was put onto me having psychology which only took more attention away from my physical health issues and them being seen too. Its looking to me that a repeat of that will probably happen. (2 years or more got spend on just psych stuff with no attention on my physical health stuff and hence why to this day its never been caught up on, otherwise much of the stuff Im dealing with today, would of been all sorted out why back in the past).

    I have to pace out any appointments I get and there is NO WAY I want my energy going on to psych appointments while Im needing ones with my doctors for my physical health issues. Anyway, I think this is going to result in me refusing to see the psych as Im not going to see one with no ME/CFS understanding and waste my energy and health doing so.

    It is completely wrong that I should have to become a psychological patient to get my support needs meet (cause DisabilitySA view ME/CFS to be a psychological illness!). The whole thing really annoys me.
     
    Last edited: Aug 6, 2014
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Yes, it is awful the way things get pushed on to psych and then everything gets put down to that.

    As I said to my GP when I was going through my bad time due to poverty, I told him, and anyone else who would listen, that an injection of money would cure all my problems.

    If I hadn't been thrown into dire poverty in the early days due to the lack of welfare benefits, I might be relatively well now.

    You are completely within your rights to refuse a psych appointment. Write down the reasons. Then you can refer to your list if people try to push you.

    Don't forget to mention your Asperger's.
     
  9. taniaaust1

    taniaaust1

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    I used to do the sticky reminder notices thing but I just ended up with things being stuck all over the house and it then got to the point in which I wasnt paying any of the reminders any attention as it was like they just become part of the furniture as they were so everywhere. (I had them for things like "turn off the stove" "turn off the light" "flush to loo" all the basic reminders too).

    the truth is I wouldnt care if I lived in a war zone, nor would I care if I was homeless (ive been homeless before and what I experience in this house is far far worst!).. if I had a family who loved me and looked out for me.

    Mays are meaningless to me with my Aspergers black and white thinking, that's just as much pointing out that I do not have something as possibly getting something

    So that means I can only relate to one positive on that list "I have many friends at PR". That's the only thing I can say is a huge positive thing to me. The truely one good thing in my life which matters to me.

    I do not feel depressed, I can still laugh, I can still feel some joy but that still doesnt mean I want to be here thou this constant abuse situation I get. I want peace.

    Im a big bottle of anger due to the unjustice put on me.

    That's the big issue right now. I no longer even want to help myself as I dont want to be here anymore so none of that other stuff now matters much anymore. So I know all is meaning well telling me to ring here and that right now, but Im past that now. I just seek peace. I dont want to be in the horrid constant state where Im stressing about everything anymore due to what I dont have but need. I just want peace.

    oh boy lol, did I write Wessely.
     
  10. taniaaust1

    taniaaust1

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    It sucks when we knew what we needed to not have gotten ill. I was like that when I crashed after the full remission I had for quite a while, I knew I just needed a break from work to recover back to my full health again but couldnt get that break, so just ended up crashing again to an even lower level. Thank you Centrelink **sarcastic**

    Thanks. I will do that.

    I think the mental health team are trying to get hold of me, my phone keeps ringing (Im going to turn the thing off soon if this keeps happening) but seeing the 30 min psych call before put me into bed for hours, Im not about to answer the phone again tonight and end up crashed tomorrow due to it!! No way!. I need to protect myself from ME/CFS crashing (wondering if they will end up sending the police around if I are not answering my phone, oh well its not my fault that those psychs arent educated in this illness and our needs!!!).

    They told me they'd ring back in the next few days.
    ......................

    My sisters husband is going to pick me up sometime tomorow to take me to their place (which is on the other side of the city). He has booked a job out this way to do (He's an TV antenna guy) so he can pick me up right after. Both my nieces from both my sisters are in their first dance concert, its going to be soo cute (they are in the same team). I still dont know how I will be getting home yet!! (Im going to have to stay night at my sisters thou). I'll do with that stress on how Im going to get home later!

    To be able to go to this, yesterday my support workers took me to Noarlunga to get a mask for the MCS. It will be the first time Ive worn a mask while out in public but I shouldnt be too embarrassed about others seeing me as I'll be sitting in between my two sisters and the audience will be in darkness (not sure how Im going to keep my legs up so I may end up collapsing and end up in hospital but oh well I'll worry about that one if it happens!!! If I worried about everything which goes wrong with me all the time, I'd NEVER get to do anything).

    Probably kind of stupid Im going to go to a concert and be in a situation in which my legs will be down when I know right now my blood volume level must currently be quite shocking (seeing the nurse couldnt get the blood for my blood tests today). Im probably right now in need of a saline IV.
     
    Last edited: Aug 6, 2014
    Valentijn and golden like this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    If you are finding a phone call tiring you could just say you are going out or there is someone at the door and you have to go, although maybe you'd find it hard to lie with your Asperger's. (I find it very hard even though I'm only borderline.)

    Could you just say that you don't want to see a psychiatrist and already have a lot of much more urgent things to deal with?

    I hope your mask works. I had to give up with mine, as even with the chemical filters the perfumes were now getting through. They have obviously been formulated to penetrate even more.

    So I now have to wear a swimmer's nose clip, plus a thin cloth mask on top if I am outside. It's uncomfortable but effective.

    I'm self-conscious about wearing them and only do it at home, and even then only when I am alone or with people who understand. Otherwise you have to cope with funny looks and questions.

    I hope you have a good time at the concert. Try to take all the meds you need with you, and get plenty of salt and fluid into yourself first.
     
  12. taniaaust1

    taniaaust1

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    yeah its near impossible for me to lie and if I do it eats away at me like crazy (I mean for years!), so its best I dont do it.

    Saying either of those things wouldnt be good anyway, the guy on the other end is bound to say he'll wait while Im checking the door (and if i gave the impression to them that I had a friend there, they would start to think I have more help then I do). Also if I said I was going out, they'd think I was a lier when Im in a situation in which I've told them I cant leave my home without help (Any notes they take, could be used by disability services against me in a court case).

    I shouldnt have to hide anyway that I need to go due to needing to rest due to the ME/CFS.

    They will probably commit me if I continue not eatting and refuse to see one (they can commit one here for that as its viewed as self harm). I think I'll keep trying to insist I want one who understands ME/CFS people.

    oh wow, was yours a charcol filter one? (I think they are the best for things like this). I think the 2 I got in a pack may be one use only thou it dont say that. The other ones which can last up to 6mths were very expensive and I wouldnt wear where I can be seen out in public anyway. (These ones were only $5 each).

    The ones I got says they filter out "nuisence levels of organic vapours" umm by that they probably wont be enough or me. oh well its a trial (oh boy, there is good chance this outing is going to put me into hospital and it would be to the bad inner city one as far as ME/CFS and POTS goes too). Im taking a huge risk as I so much want to go to that concert.

    That does sound uncomfortable!

    Yes I have a big container of my meds, thou cant currently take some as they are supposed to be taken with food. Oh I just thought, my florinef wouldnt be working either (as I get my salt from adding extra to food), ah explains why she probably couldnt get enough blood for the tests today, thou I'd drank heaps.
     
    Last edited: Aug 6, 2014
  13. golden

    golden Senior Member

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    I think you have to nourish yourself Tania.

    It sounded to me like you were in shock, grief and guilt over the loss if your pets in such a tragic accident.

    Coupled with being in an ongoing battle with ignorant 'professionals' insulting you, denying you support, help and basic needs - I think its all quite natural to lose appetite.


    I also think you were right when you said you shoukd not force food onto yourself.

    But I think the moment your body shows signs of hunger then you should *show it compassion and nourish it*. Your body is doing its best and needs fuel - not the additional worry and fear of starvation which causes your body to mis trust you.

    Be kind to yourself even though the disability is being abusive. It is the disability which needs the psych assessment for their treatment of you all this time - not you!!! IDIOTS!!!!!!


    It seems likely to me that they will lie and say the psych person has knowledge of ME/CFS. But you seem to ne very astute (i dont think thats a real word)... switched on about such things so use your own good judgement .
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    This is the one I used. I used to buy the chemical filters to go with them; this is what the manufacturers say about them:

    For years they worked really well, then I noticed that they weren't working any more.

    Some years ago I did a load of research on artificial perfumes and was shocked at what I found. Manufacturers are continually working on 'improvements', for example to make laundry perfumes last longer on fabrics, to encapsulate the laundry perfumes in nanoparticles so that they are released when the fabrics are touched, then there are deodorants which you can hardly smell in the bottle but release their stink as soon as they come into contact with skin.

    Now I expect they are designing them to have greater penetrating power, hence they are getting through my masks. I emailed the mask manufacturers about this but they don't seem interested, even though it may render their chemical filters useless and stop people buying them! I had wondered whether the filters would be redesigned, but unless the manufacturers tell me that this has been done I will not waste any more money.

    I only hope that yours works better.
     
    taniaaust1 likes this.
  15. taniaaust1

    taniaaust1

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    I could well be mentally ill at this point after the trauma they've put me throu, I dont know as I do know that at this point I have had enough and do want to die due to it. I do NOT want to keep going throu the abuse they've put me throu and I no longer trust at all that things will work out. Its gone on for so long, I can no longer trust that things will be okay. Its going to take me a heck of a lot to be able to believe that esp when Im already so upset at just how far they've already sent me downhill and took away all the health gains which took me years to gain.

    how do I ever trust I will be treated right by those in the health fields in gov agencies etc after so many have treated me so badly? (most of them simply treating me with neglect). I do not want ANYTHING to do with my states disability org, first Helene told lies and now this other who's dealing with me (forget her name). I play out in my head every day her words that she said she sees me and my friend down the shops all the time with me walking around... cruel mind games. I want no part of them.

    Im still reeling with that lady who dealt with my case at the equal opportuntity commission who told me that I may just have to accept the disability service dont have enough funding and may have to learn to live with my condition. She made me out to be exaggerating the situation Im in, I KNOW she couldnt have spoken to my GP so they didnt even bother to investigate my case properly. They just listened to the disability services and believe what they told them and not me.

    So what should be done with me at this point? Ive not a clue. All I know is the mental health services due to lack of knowledge of ME/CFS carries a huge potential to cause me even greater damage. At this point Im probably not depressed (to me dying is a logical way to escape a terrible situation and a world I no longer trust) but they carry the potential to add that to what I do already feel and carry great potentional to worsen my whole ME/CFS to which I may never recover.

    Ive been completely long term bedbound and basically as severe as one can get with this illness in the past (I used to be comatose for up to 3 days at a time! without waking for food or drink, unable to use language and unable to understand it a lot of time) and easily could be sent into that point again if Im not listened to as far as what my body needs or doesnt.

    I honestly do not think they are going to anywhere near be able to manage to case properly as they do not understand this illness (pity there is no ME specialists here in Sth Australia. I think coming under the care of one and having the bad situation Im in dealt with with the gov services is the only thing which is going to give me the will to want to try to live and keep on trying).

    oh yeah, grief Im certainly in that. I still cry when i think of my frogs and how my ME brain has killed them... which then in my brain just unravels to how due to ME I probably also killed my past cat, then just takes my mind back into when I was severely ME ill and completely bedbound with horrific suffering and had been abandoned by doctors which then just sends my thoughts into how Im being neglected now by the services which keeps bringing me back to the thought of how they (GPs on that occassion) left me to die in the past (when I became bedridden in past).

    I have layers and layers of emotional baggage this illness has put me throu which has never been dealt with. How are they going to mentally help me with any of this when they do not even understand the basics of ME and Im not well enough to be trying to educate them? They can only say and do things which are going to further distress me. They will probably tell me to go for walks in the nice sunshine or something (that's the kind of thing I copped in the past and I couldnt do it).

    As far as my appetite goes, my ME already has messed up with that long ago. At times I dont feel thirst or hunger at all due to the ME, when other times Im ravenous (with no sensation of when Im full). My autonomic issues probably affect all that. I often due to the ME have to force myself to eat anyway, so its very very easy for me just to stop eatting (no probs for me at all). Its easier for me to probably do that then the often times when I need to force myself to eat.

    My body is showing no signs of hunger to me at all (and wouldnt unless a nice plate of food is put in front of me when Im not feeling exhausted. I often feel better when I dont eat due to how eatting foods which dont agree with my body affect me.
     
    Last edited: Aug 6, 2014
  16. taniaaust1

    taniaaust1

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    I got woken up by the phone this morning, rang several times so once again I didnt get the sleep I could of done with. (I will not answer it in mornings before 11am as to not encourage people ringing me early and likely waking me). No idea who it could be, it was my home phone and I do get a lot of sales callers on that.

    If it is the mental health team, Im going to have to get them to quickly understand there are times they shouldnt ring me at as Im often resting.
    ........

    I found a text message on my phone from last night from the Noarlunga hospital emergency mental health dept or something like that. (I just tried to find the message again on my phone but cant find it, its in the mess of the hundreds of messages which dont get cleared out of my phone). They ask me to phone them so I will do later this morning when Im feeling a bit more up to doing a phone call, hopefully if I just ring the hospital later, they will know who called me. (if not, I wont be chasing it up as Im not going to be wasting my energy).
     
    Last edited: Aug 6, 2014
  17. taniaaust1

    taniaaust1

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  18. taniaaust1

    taniaaust1

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    Update

    I got a heap of info from Disability services in my mail this morning including the details of the place called Sorento Care home meal services. The disability service had told me it was $7 per meal but its $10, Im fine with that (so there should be that option for me now if I get my will back to want to live). I phoned them to make sure if it would be a suitable option and it seems that it would be as they cater for special diets.

    Obviousy Kerry didnt listen to me when I said to her I couldnt do adult Aspergers groups due to being too sick with ME/CFS as she refers on the letter to me to ring Autism Society to ask about that.

    She sent something for the electricty rebate I thought I already get, which suddenly triggered off my brain into a suddenly aware realization state of "OH I do not get or pay electricity bills" (so what in the heck is going on there? so I asked my friend about it and he doesnt know either.... who in earth is paying my electricity bills? or has the company forgotten to bill me for a year?. I can only remember paying one early days on moving in early last year). Oh well, I will put that one aside as it isnt causing problems currently as I already have too much to focus on and sort.

    The Noarlunga mental health person rang and arranged an home appointment with me on Saturday. Said she needs to see me due to Disability services refering. She said she'll come and see if there is anything they can do for me. (So maybe I can get them to do a letter to Disability service to say they are treating me ridiculously!).

    I phoned the Home Assist place mentioned on the letter I got today. The letter said they are able to do a complete garden assessment and proide a once-off garden clean up for me. So I phoned them only to be told by them (I spoke to someone called Greg) that they do not do lawnmowing or weeding!!! (so what kind of garden clean up is that?).

    So I told them I cant see how they could help me then as I need those two things done (they can do whippersnipping but I arent about to have someone go whippersnippering all my plants in amongst all the weeds.. Im proud of my garden when its nice). I assume they were just going to whippersnip and poison everything to stop it growing again! (and of cause they cant poison here).

    OHH I saw I read her letter wrongly, it says she will afterwards contact some lawn mowing companies (she didnt believe me when I told her how much I'd been quoted when I rang various ones). So maybe I should have the HOME ASSIST others come out but I dont want once of whippersnipping in which the weeds will be growing back in two weeks and all my plants cut down with it. (***feeling like its all too hard right now***)

    I did ring the Autism Society as Kerry wanted me to do to ask to speak to thier adult coordinator person (or whatever they are called), who then told me I had to get in contact with the Autism info line. The lady there seemed nice and I told her of the issues Im having with Disability services and how they are saying I have to learn how to organise and telling me I need lessons throu the Autism society when my big issue is lack of health and energy and memory issues to be able to do so well.

    I spoke to my advocate earlier today about how disability service is trying to refer me for useless things again and she said to go throu this anyway and when they come out, get them to do a report on my situation, so Ive decided to do that.

    Hence why I rang them today and now waiting on the Occupational therapist for the Autism society to ring me back to see if they will be willing to come out and do that report (thou it will probably be just another one that the disability services will ignore just like they've ignored the other physio. They didnt sound so sure if they will do this or not). But anyway it will get them off my back about that all my issue is that I need training by the Autism society to organise.

    The latest thing is that Kerry from disabilities is blaming my lack of not being unpacked from the house move at the start of last year on my organisational issues rather then my health issues and lack of energy and ability to be up on my feet to do so. (I know exactly where I'd like most of the things still in boxes to go!).
    ...................

    Anyway, this letter I got today is something which should of been done and I should of got 12mths ago! (Its very upsetting they are finally only just now starting to help me only once they have physically destroyed my health and destroyed me in other ways too). Its the first genuine attempt at attempting to solve a lot of the issues I have.
     
    Last edited: Aug 7, 2014
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    While he should get credit for trying to learn, random goggling is a poor way to get information on any subject. There is a lot of garbage out there about ME.

    I agree that you do not have the time/energy to educate him. What we need is some good websites at hand that we can refer people to. I am not sure what these would be. A couple of possibilities are:
    IACFSME Primer for Clinical Practitioners: www.guidelines.gov/content.aspx?id=38316
    Chronic Fatigue Syndrome: a Treatment Guide by Erica F Verrillo: http://www.cfstreatmentguide.com/


    I realize that the "Chronic Fatigue Syndrome" in the name of the second is not ideal. You would have to explain that in the U.S. that is what ME is called. Maybe others will have some better ideas.

    Tell the mental health guy that you have already had 2 years of psych treatment and it did not do any good. If he still insists, tell him that the psychologist will have to go at the end of your list of medical appointments.
     
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  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I do not know much about Aspergers. You are obviously aware that you suffer from black and white thinking. Are you also aware that the world is not black and white, but a multitude of shades of gray? When you see "grays" as "black" it can make you overly negative and cause you to make poor decisions, since they are not based on reality.

    From where I sit, it looks like things are starting to get better in your life. Whether because of your advocate, your threat of a lawsuit, or both, DisabilitySA seems to be starting to get a clue about what you need. You have seen more doctors this year than in past years. Other people on this site are pursuing other means of help for you. In short, the gray is getting brighter.
     
    Indigophoton and MeSci like this.

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