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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

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    Some things which are now Going Right

    The new support agency Ive had since the start of the year (Assured Home Care). I still think they are so great eg today I had to change all regular support times for the next 3 weeks due to appointments I have or due to my regular times falling on a public holiday (in which they then cant provide support on those days). They sort it out no issues at all (where as my last completely useless support agency, I would just end up loosing all my support hours as they just didnt organise new days before the months used to roll over and I'd loose my support time).
    .........

    I dont think I mentioned it here before but I'd been having issues with the library, they kept on bringing me over and over the same DVDs, some I think I had 3 times in 1 year. Last DVD delivery from there before todays, they only brought me enough DVDs to last one week when they only come fortnightly. The DVDs they bring are important to me as I use them to fall asleep to, it seems to help me sleep, nowdays I can always fall asleep watching one. A DVD during the day also stops me from getting very bored seeing Im stuck at home, usually alone (I cant get utube or anything like that on my computer).

    Due to my old computer I cant use the library site due to the moving pictures on it so cant put DVDs on my hold list there. My old library when I lived out in the country used to have new book list leaflet and I used to just get all the new DVDS listed from that put onto my DVD hold list so I always had DVDs I hadnt seen coming in. (the website I used to look up DVDS on to then then request the library for, they've changed the site and my computer no longer can get). So anyway.. I was getting sick of getting the DVDs brought to me over and over again and then not having anything to watch (I cant get TV stations in my bedroom as I dont have an aerial there).

    The man at the library who deals with the disability outreach, finally thought of a solution for me. The library is now going to give to me all the DVDs they no longer want to do with as I wish... so anyway, today they arrived with 10 extra ones due to their clear out. I guess I'll get to build up a great DVD collection now so I always can find something to watch.
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Great to hear some good news!

    Did you know that it's possible to download YouTube videos? There are programs that will do this easily. Then a person with a DVD-making program and drive can make DVDs out of them. They are not such good quality as the originals, but I have made some like this for friends who are not very internet-savvy and they have been pleased with them.

    Maybe your friend, or someone here who lives in Oz, could do this for you? I would happily make you some, but the postage would be rather high from the UK!
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm afraid that the chemically-aware places are in the minority, and most countries don't acknowledge chemical sensitivity or the hazards of artificial perfumes. I suspect that the ignorance is deliberately fostered by the chemical countries, and there is certainly a lot of dishonest propaganda in advertising.

    I see that there is an Australian ME/CFS site that has a section of chemical sensitivity here.

    Yes, like most animals, rats will take the easiest way in, so if the composter is open at the bottom they will get in that way. Maybe you could fix some fine mesh over the bottom? I think that type of composter is a poor design as it is so easy for rats and other animals to get in. It happened to a friend of mine.

    Maybe you'd be better off with a large wire cage which you can put containers in and put the waste in those?

    And have it as far away from the house as possible. As you have trouble keeping the house free of accessible food, rats attracted to a composter may smell the food in the house, and then they will be hard to get rid of, as I know from experience, but I did manage it (without killing them).
  4. brenda

    brenda Senior Member

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    I'm not understanding this. Vegetable waste can go out to the bin every day (or more in my case as I don't live on the ground floor). That's no trouble being in the bin outside for a week or two. I have a good amount of that including the waste from a cauliflower every week as I am into cauliflower soup at the moment.

    For perishable waste, I have none or next to none - apart from a chicken carcass every week which goes into the outside bin after it has been boiled to make stock but I can see it a problem where the climate is hot. In that case, it can be put in its bag and stored in the freezer till the bin man comes. For burnt food, the same thing - into a bag and frozen till bin day or the night before.

    If I cook too much often on purpose then it goes into the freezer and I only put on the plate what I am going to eat. But if there was leftovers, they can go into a container on the freezer to put out when the bin man comes. Where's the problem?

    When in the supermarket, I don't see the problem - freezer stuff in one bag, fridge stuff in other, and they can go straight into the fridge or freezer like that in the bags till you can sort them out after resting. The veggies can stay on the counter or cupboard till later.

    I guess you will now say that you cannot get the waste outside to the bin. If no perishables are kept in it then it can stay besides the door.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm sorry to say, @brenda, that not for the first time you are coming across as critical rather than helpful. @taniaaust1 has explained her problems with memory and exhaustion among other things. She is highly dependent on others with regard to shopping, which is still a struggle. She also has difficulty organising things, as I understand it, and things need to be as simple as possible. She forgets to put things in the freezer, so how can she be expected to remember to put other things in there (assuming there is space) and then remember that it is waste and not food, and remember to put it out at the right time?

    I don't know what the waste collection system is in Australia, or what Tania's bin is like - they may be quite different from the UK.
    taniaaust1, Ritto and Valentijn like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    Yes it could go there outside (inside veg scraps if kept in a bin can in fact start going molding in just a few days!!! You may not be as sensitive to molds as I are. I actually also have the genotype according Shoemarker which is the most sensitive to molds).

    Ive always kept my outside bin fairly close to the house door (another reason why I dont like putting food scraps in it). I also hate dirty bins covered in food inside or outside as that also doesnt meet my standards of hygiene (thou at the house Im at now I have been too unwell to be able to have washed the outside bin even once as there is always more important things which need to be done, which does really annoy me as it was dirty when I moved into this house as previous tennet obviously didnt wash it).

    Thirdly I are a bit of a greeny, you may not be but I are.. so I like the idea of my scraps breaking down to go on the garden. My last place ended up having the most beautiful soil as all food wastes were used for soil improvement, I used to grow my own organic vegetables etc for health and for financial reasons when I was a bit weller and hope to do so again (buying compost is very expensive if I have to buy it and it is far better for me to be able to make it and over time.. years.. my soil would be good).

    Anyway... there are several reasons why I was throwing the scraps outside by the fence before.
    ..............
    Your situation is quite different to mine, you make lots of assumptions about how things are for me eg I myself dont even pack my own shopping!!!, you tend to forget I cant stand for long so have a wheelchair. I cant stand over my support workers telling them, do this, do that. If I was wasting my energy on things like packing my own groceries during a shopping trip, Im likely to end up not being able to walk later on at home at all (and hence unable even to walk to the loo!!). That happens to me at times when I over do and it doesnt take much at all for me to be overdoing! You take for granted, things which for me arentwise for me to be doing.

    You also are assuming that even if fridge and freezer stuff had gone into separate bags, that the full bag of stuff would fit straight into my fridge when it gets home. In fact a bag of stuff doesnt as I usually have little room in my fridge and the whole lot often needs rearranging to get things put away (hence why things then sometimes end up being left on cupboard if support workers are out of time. I run them overtime most weeks a s it is. I current owe both my workers time). Due to the diet Im on, 90%+ of what Im buying is fridge or freezer stuff.

    If putting my wastes in the freezer was even feasable to me, my wastes would end up getting all messed up with my good foods and I 'd be very likely to forget what is what in there. As it is the other day when I had put chicken in my freezer which had been left in fridge for too long (going to give the chicken to someone for their dog as I hate to waste a big pack of chicken), I got confused and went to defrost it to cook it up for myself. (and this happened only in past couple of weeks). I need to keep things as simple as I can so I dont confuse things!
    Last edited: Apr 17, 2014
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  7. brenda

    brenda Senior Member

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    Yep I am green but....no garden any more. The idea of composting is good, but my experience of it is, that it involves more work than obvious and one year I had to take the whole lot out as it started stinking, and lay it out in the sun to dry. You have to keep watering the compost but I over-watered it.

    Keeping waste in the freezer would mean having a container specific for that in order to avoid confusion, which I would have as well.

    As for the shopping at the checkout, our assistants will pack the bags if requested. I did assume that it would be the same everywhere, its such a small thing for them to do...straight into a bag. Sending the stuff on the conveyor in the right order is easy ....surely that is a small request for the carers? Especially when there are two of them.

    I don't have a stuffed fridge when I get my weekly shop so won't have a problem to put a bag inside. Most of my shopping is green and does not have to go straight in the fridge when I get in and have to collapse. I live simply. Getting better organised is easier if you have people who can spare a hand. I think that the difference between us is that I don't get any help at all so have had to be organised, though I can stand longer than you.
  8. Valentijn

    Valentijn Activity Level: 3

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    Indeed, it is often pointless and inappropriate to compare or judge situations which are quite different.
    MeSci likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    hi, getting DVDs from library wouldnt be as important to me if I could get youtube on my computer as I could then download them myself. My computer thou cant get youtube, well rather it cant play the videos at all due to being so old and the computer connection.

    If someone had more time to help me, we'd just get me taken to the library every fortnight (its like a half hour trip out all up .. I'd take the wheelchair). My friend is doing his best to help me with more important things while he's here.

    My latest deadline runs out again in the coming week over the Equal Opportunity stuff Im meant to get paperwork back and we still havent had time to work on my responses, so that's going to be twice Im going to have to ask for an extention from those legal people!! Its stressful, I dont know how much longer Im allowed to extend it and I still want to check out another private lawyer as that other could only write a letter to DisabilitySA (which she was going to do) as her working for an gov org apparently isnt allowed to actually help me take the case to court. Then with the EO lawyers, they are impartial to situations and wouldnt work as "my lawyer" thou they can and are willing to take the case to court in an impartial manner which looks like it may be that I'll have to do. All my focus right now is on a legal case and what to do there and getting letters I need done.

    Unless others at this site wouldnt mind downloading things and posting them to me but yeah it would be costly unless it was being done from Australia. I'd also personally hate to ask anyone here for help or to receive any from people here as everyone is struggling with their lives here and of being able to keep up with their own things without having to do DVDs for another. It wouldnt feel at all right to me even thou I do use them for sleep so I couldnt take up an offer like that.

    thank you greatly thou for the offer.

    Hopefully the library with giving me also the ones they are getting rid of now, hopefully that will be enough for me to have enough to keep me occupied here when in bed and be able to have one to fall asleep too each night. Anyway.. Im keeping fingers crossed that issue will be solved.

    June/July? forget what month... my state is changing over here completely to the new fibre optic cable system and dial up wont be available any more at all here. So Im going to have go to the other system, my current computer the repair people have told me wont cope, so what Im planning to do (thou I hate doing this as in the long run it costs a lot more), I'll hire purchase a new computer (unless my name comes up on that list for free gov one in their upgrades). Ah well at least with that thou it will mean paying more out, I will at that point be able to download things from online once I change over and have another computer. So that is just a few months away before Im forced to have to do something about the computer situation or loose all internet contact.

    So that's another thing to sort out on my long list of need to do thing, I'll probably only sort that out once I lost my computer connection.. Im tending to only get to dealing with things here when they reach crisis point.
    ........................................................................................

    Ive spent nearly all day in bed today. My sister rang this morning and invited me tomorrow to my other sisters house for Easter as the family is getting together. Ive got anxiety over it right now and have had all day, due to the likihood things could go wrong (Im having too many bad collapses of late and really dont want another, everytime I have a bad collapse its like my baseline is staying slightly lower). I know I probably shouldnt be going as my level of health right now is so poor that a family lunch outting at one of their houses is very risky.

    I probably wont be able to take the wheelchair due to lack of room in the car but I really should have that wheelchair with me when I go out anywhere and I do need it :( (and everytime I cant walk and someone ends up needing to really help me get a short distance eg door to a car and half carry me.. people always end up loosing grip on me so I end up crashing to the floor or ground cause Ive started shaking so much that they've lost hold of me (often end up with bruises), so right now Im almost feeling phobia of that happening again seeing the person a few weeks ago didnt hold me up well enough when I warned him I couldnt support myself causing me to fall.

    The sister who's house family is holding it at, is the sister who once told me I should be in a home and who wont do anything to meet any of my care needs..she makes fun of my diet (she's also the one who left me to sleep on the street one night cause I couldnt get home and she wouldnt let me stay). Its probably been 2 years since I was last at her place. So Im currently thinking she probably may not even support me having my legs up like they need to be (which I have the wheelchair for due to raised legs).

    To top off of my concerns over those things, then Im also stressed about the food. Sister is cooking lunch and from what Ive heard she's cooking, its going to be too high in carbs for me except the meat. (So Im hoping Subway is open tomorrow so I can get a salad and take that food with me, worried thou it may not be open due to public holiday?).

    There is a fairly good chance Im going to end up collapsing tomorrow just cause I want to have Easter with family and we are at the stage here with my collapses in which we really do need to call an ambulance when I collapse bad (as Im not recovering from them afterwards for days due to the POTS.. I really need an IV when this happens so I can recover! ).

    Anyway.. this whole thing right now has me in anxiety as I so dont want another collapse but Im determined not to let this illness stop me from trying to lead "some kind" of life. I just would like to be with my family on Easter for a few hours for lunch. (sister said she'd have me home by 5pm, Im freaked out wondering how Im going to last that long.. seeing i get bad just with people talking while Im laying)

    If Im no longer capable of attending a family lunch function for a few hours on special occassions.. truely my life then I dont see as being worth living. Im here alone (except support workers up to 2hrs twice per week who spend whole time working.. and my elderly friend for a short time a couple of days a week if he can) what kind of life is that! Im determined to try to keep some "quality' to my life if I can eg get out on xmas, important birthdays, Easter if the whole family are gathering.

    (Im feeling a bit of despair tonight over how much issue just a short family outting is being to me).
    Last edited: Apr 18, 2014
  10. taniaaust1

    taniaaust1 Senior Member

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    I dont water compost, that would be far too much work for me and I wouldnt even think of doing that due to that. Patience is the key, I just dump it somewhere and leave it for a year or two and it then breaks itself down. Yours obviously went stinky due to the overwatering!

    Some of us no matter how hard we try, we cant organise well and everything around us is failing due to our inability to organise. You are fortunate if you can organise without everything falling apart.

    It often is the more Im trying, the more things here are falling apart, I screw up a lot when Im trying to organise. eg my appointment written on the wrong day on my calender last week.. is just an example and then that caused me panic and more confusion. I cant even organise my medical appointments. I think that was the second time straight I'd wrote an appointment on the wrong day (often they end up on the wrong month but of late Im reading the numbers wrong.. wrong order?? I dont even know how Im managing to screw up!. I didnt even realise I'd forgot to write the time in either for that appointment.

    I really need someone else sorting my appointments out but dont have anyone doing so most of time.. so I keep screwing up, its upsetting. I even accidently at times whenmy friend has tried to help, Ive told him the wrong days so when he's checked what Ive wrote, he thought it was right. I sometimes write the day down wrong when Im on the phone booking it and even with checking and asking them to repeat, my brain hasnt clicked I've done it wrong. (so you tell me to organise more? how?).

    Lack of organisation isnt always someones fault and doesnt mean they arent trying and trying hard to get things right. You seem to think its just a matter of a person trying more but sometimes it is a case of the person not being able to organise. Im often having to have people point out obvious things around my home to me as my brain misses major things eg I walk inside after being taken shopping and will forget I still have the house keys in my hand and will be walking around the house with them unaware instead of putting them onto the key holder when I walk throu the door (last two times after shopping others have had to point that out to me, they knew they'd get lost otherwise). I just wasnt able to organise myself "keys on holder" when I walked in. I was too focused on the other things in my hand and not just dropping things, my brain couldnt take in everything I needed to do just when Im walking into the house.

    My brain state is so bad right now that I can actually only focus on one thing at a time. I smashed a mug a couple of days ago over the floor cause the cat meowed once. I need every ounce of my concentration to focus on whatever Im doing (or I'll screw up), even with things most people take for granted that they dont even have to concentrate with. When you are holding a cup do you have to actually think and keep reminding yourself you have a hold of it every moment its in your hand ? Well I do.. automatic to most people stuff.. with my brain how it is currently, I need to actually consciously focus on the cup the whole time to stop problems.

    The cat meowed on Thursday when I was water into mugs, which made me forget for a brief second that I had a cup in my hand which I was filling up water so just I let that glass go (not being clumsy but simply forgetting what I was doing and forgetting that I had something in my hand). .. and it hit the floor breaking everywhere (my friend must be so sick of seeing glass all over floor! I know I should go to plastic things but I like feeling civilised and not like a child so I do like my china and glass. I dont want to feel like a preschooler). I was attempting to get my friend a hot drink when he arrived, he usually gets all the drinks as he knows how much just to do that is a struggle for me but this once I wanted to but all I did is ended up causing more mess!

    I know Ive done other stupid things past few days but currently forgot what they were, I know my friend had to pull me up on things a few times when he was here on Thursday as my brain wasnt getting it together. To organise well your brain has to be working reasonably well and you also need to have your memory going okay. (its like when I try to organise my drugs and screw them up.. confusing the doses (ended up in hospital on a drip after that one), walking off with drugs Im trying to take in my hand, forgetting I didnt put them in my mouth and then dropping them on the floor).

    Im not even currently taking my right doses as Im scared to raise the drug further up like hospital told me to do so, as Im too likely to screw it up and double dose and it certainly isnt due to me not trying to organise. Its no good telling me or anyone else to organise better when Im struggling to organise and finding I cant organise sometimes. (You may as well tell a person with a broken leg to just walk, its actually a bit offensive).

    Another example of my inability to organise.. I know you read my posts.. that one in which I tried to silicone something and ended up a huge mess with my hands. I organised, got gloves ready etc, had them right next to me but then still forgot to put them on my hands and then just ended up in a big mess. It simply was my memory issues and inability to think which caused me to end up in a mess, not a lack of trying. Its like that daily for me.. Im screwing things up due to my brain issues no matter how hard I try. I can write things down and then miss things on my list etc and be very sure Ive got everything on my list (I do that when shopping a lot and go home without things.. its to the point now my workers actually have to check my list). Just like they need to check everything every time I leave my house cause I just screw up otherwise.

    My workers actually hold on to my shopping list while we are shopping or are carefully watching me if Ive got hold of it (usually they take it off of me as they know only tell well what happens) as I loose it while we are shopping and then I do not remember what was on there..

    You do not at all understand.
    .....

    I just remembered one of the stupid things I did on Thursday. After I broke the mug I needed to sit down so couldnt clear it up right away. Last time my elderly friend cleaned up glass for me he did a poor job (I dont think his glasses are working) and I ended up with glass in my foot due to that (3rd time in 1 year), so this time I wouldnt let him clean it up so I needed to do it after a rest. As I was worried I'd forget there was glass over the floor and could step on it when getting up to get a drink, I got him to put the vaccum cleaner in the door way as a warning reminding for me that glass was over floor. Guess what happened.. I got up to get a drink and went into that room, actually stepped over the vaccum on the way in and it didnt even register to my brain even with that memory trigger thing.. "glass over the floor", so I just walked throu the room where the glass was and very fortuntely didnt step on any before I suddenly realised what I'd just done.

    My brain didnt even register the object, "vaccum" as I stepped over it.. my my brain it was just "a thing" in the way which needed step over or I'd fall over it. (Its like when I look at objects and sometimes dont register then in my head).
    Last edited: Apr 18, 2014
  11. brenda

    brenda Senior Member

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    Tania

    I was meaning getting help with organisation. I really get the bad memory and concentration thing, but with routine things, l have to have a set routine with my Aspies so carrying that out doesn't need thinking about, l just do the same things, but like at the checkout could make an arrangement to have things put in separate bags for me by the carers then that can be left to them. It seems to me that you need some serious assistance to get organised for things like safety. For example,if you cannot drink out of plastic and l get that, then you could have a rug down at the sink and take your drinks standing on it so they hit a soft surface if they fall. With my Aspie mind l just don't understand you not having routines set up instead of sounding like it is chaos as l cannot stand not having routines.
  12. taniaaust1

    taniaaust1 Senior Member

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    I plan to get and have always wanted a rug in my kitchen but as yet dont have one due to money and also the fact to get a rug, one has to go out shopping for it and to do that I need someone to take me out shopping to look at rugs (so its another time and not enough support issue on top of cost). But I will be getting a rug (one of those kitchen ones one can get wet as Im always spilling stuff) when Im able to do so, its just another thing on my long list of things I do need to get.

    It is complete chaos here and I cant see that changing till Im actually getting the amount of support Im needing. Yes I have huge safety issues here and its just a matter of time before I end up in hospital again over the safety issues, it WILL happen again, I know as Im ending unsafe with things so often.

    I dont know why you are going on about the bag thing when as I said, a bag of fridge stuff wouldnt fit in my fridge in the bag even if we workers did put fridge stuff separate in a bag, as I said before things need to be all organised to get the stuff in there whenever we get shopping. (and my freezer stuff cant go straight into the freezer but needs to go into the fridge as I need to sort it out at a later date, split the meats into separate freezer bags for meals etc as its just me eatting).

    I do have routines but not many as they constantly fail cause Im dazing out a lot when up on my feet. eg put my keys on the key holder when I walk in the door..but I just walk in and forget and forget I have hold of the keys (when Im doing better I do remember to put them on the hook but of late Ive been worst so I just forget even routines which previously had been ingrained).

    I also of cause go throu the same process weekly in getting ready for shopping but still forget things. I cant remember routines or routines I have are constantly interupted due to immediately having to sit or lay down. (I mean immeditately when that kicks in). I often cant remember steps for processes (even often miss logical steps, that is where one of my support workers needs to step in and often do if they are around).

    I dont have any time routines to the clock either.. as my sleep times can be anywhere.. eg yesterday I think I was asleep just after 6pm?, slept for 2-3 hrs then got up for an hour or so again...anyway.. my sleep is sometimes everywhere. So my meals dont have routines as it all depends on when and if I have energy to cook, when Im awake or when Im needing to be in bed. I eat anywhere from 1-5 times a day.
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't want to stray too far from the fact that this thread is Tania's own journal, but have you done any of the online questionnaires for autism, @brenda ?
  14. brenda

    brenda Senior Member

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    @MeSci
    Yes l have and scored 7 out of 10. I don't know what chance l have of getting my gp to refer me for an assessment. I am quite in shock really at what l am reading ATM and how it explains a lot of lifelong problems. Tania how old were you when you got a diagnosis and are you MeSci thinking of getting one?
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Which test was that? I don't know any that score out of ten.

    I don't know if Asperger's is still being diagnosed. I know that there has been talk of it being removed from the DSM. I can't see much point in my getting a formal test as I am borderline according to at least two tests, and probably just on the neurotypical side, and I don't feel the need for any kind of help. It might have helped a lot when I was a child though, instead of always feeling the odd one out, and my parents just treating me as awkward and my father taunting me about being 'abnormal'. (Nice - not.)
    taniaaust1 likes this.
  16. taniaaust1

    taniaaust1 Senior Member

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    I was I think 39 years old when I finally got an Autism diagnoses. I was about 38years old when I realised i had Aspergers, that was cause I'd moved in with a doctor who's son had Aspergers, her brother and also her exhusband all had offical Aspergers diagnoses by Autism specialists so she picked up and told me I certainly had this after I'd been staying with her only a couple of weeks. (Im very good at hiding it but those who are familiar with it can often notice it).

    She then as I wanted to be properly assessed, sent me to for assessment with Autism experts in it who had my mother do questaires on me as a child and other things too but at that point I already was aware after she made me aware of it as it sooo fit so many of my issues even during childhood (I didnt even fit criteria for BPD until I was in my late 30s and been severely traumatised due severe ME and had developed mood issues due to my food issues.. BPD is supposed to be a personality disorder which develops in teen years so I certainly didnt fit with that thou had ended up with its symptoms due to my other conditions being missed and not treated! eg my insulin issue etc).

    In my country for an official Aspergers or Autism diagnoses one has to have two specialists in the field agree.. they agreed first assessment with me and due to my history. (I had to pay over $400 for this assessment as in my country it isnt covered by medicare for an adult but due to my wrong previous BPD diagnoses I thought it was important).

    It was the fact this had been missed which caused me to get falsely previously diagnosed with BPD only a few years earlier based on black and white thinking and other Aspergers traits I had and other issues I'd developed due to the ME and other medical issues (none of the those specialists had been specialists in Autism or in my other medical issues so they kept missing them!!).

    The best book I think on Aspergers which anyone who has an interest in this should read is a book by world renoun Aspergers specialistTony Attwood called "The Complete Guide to Asperger's Syndrome." which tells all the different ways this manifests. (I cant even hold a pen properly which apparently isnt uncommon in Aspergers, I had trouble driving in a straight line.. I had over 70 driving lessons with an instructor after everyone else had given up on me after trying to teach me driving for months, my best friend when I was at primary school was an elderly male neighbour!..... there are sooo many different ways Aspergers can manifest so reading this book and seeing so many of my issues in it was a real eye opener to me).
    .........

    I always knew I was "different" to everyone else as a child but never knew why. I couldnt even understand why I got teased.
    Last edited: Apr 23, 2014
  17. taniaaust1

    taniaaust1 Senior Member

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    There is a fairly good online test somewhere, cant remember where thou but it doesnt score out of 10 but gives you a percentage likihood of having Aspergers based on lots of question (I think it had about 70 questions). In that test I score in the Aspergers range.
    .............

    Thing is with Aspergers some of the traits an Aspergers person may not even be aware they have (hence why in assessment the ones assessing will want details from others who know you) so others may have to answer questions about the person eg I wasnt aware that I often miss body language. This came up in my assessment when the people assessing me and my boyfriend were communicating together with me sitting there in the room and being completely unaware of their communications as I cant read body language, so I was shocked to read in the report they were communicating around me with me being completely unaware this was going on. (I actually had to get my boyfriend to vertify this when I saw it in my report as I found it hard to believe they were doing that with me being unaware!!
    .............

    I had a big episode of missed body language the other week or so. My boyfriend took me out to see a guy not far away from my place who was selling plants less then 10% of normal cost. This guy was telling us with pride about one of his broms and took us to see it. I couldnt at all understand what he was on about as I saw a a bromalid there but it was an ugly thing and not at all like what he was describing. When my boyfriend brought me back home, my boyfriend started going on about how great that plant was... it turned out out there had been another brom there, the one the guy had actually been talking about but I missed it as I couldnt read his body language to realise where it was..obviously he was signalling towards it but I missed that so I thought he was talking about a plant close to his feet. (boyfriend said the guy was let down when I showed no reaction at all to his beautiful plant!).

    I often cant read obvious to others body language.
    Last edited: Apr 23, 2014
  18. taniaaust1

    taniaaust1 Senior Member

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    Ive been feeling upset this arvo. Cause of how I are with phones I got my boyfriend today to ring the Equal Opportunity Commissioner (EOC) guy to today to ask for another extension on providing info to them which he did. Ive been granted 2 more weeks to get all my info and letters I need to do in.

    Boyfriend told the guy he'd help me do the needed letter(s) but the guy what he told my boyfriend he needs from me isnt the info I was wanting to get in to him as what they have so far is everything from the gov agencies which has so much of their info wrong so I feel like this all needs correcting (or how will they correctly judge my case?) or otherwise they only have one side of the story coming from the agencies which isnt the truth.

    My advocate.. she's not ringing back and Im still waiting for her to do so (maybe she's gone away for Easter?). I rang her twice the other week about issues and thou she rang the physio re the latest perfume issue she never spoke to the one at DisabilitySA who had lied to me and told me she'd spoke to the physio when she didnt re the perfume issue. My advocate and l havent even met yet to go over any of the details of the issues Ive got eg all the mistakes in the gov agencies letters which the EOC orginally told me to get my advocate to help me respond to and correct. We've met once but that was to just discuss a few key points for a meeting I ended up having with DisabilitySA and then we ran out of time to further discuss things with the advocate and then we also ran out of time during that DisabilitySA meeting to bring up some of the most important issues and sort them out (so now we are waiting on a letter from them).

    So anyway.. Im yet to fill in my advocate over everything and its still a waiting game.. waiting, waiting, waiting for a phone call.. and while yet the old stuff is yet to be sorted out, new stuff comes up.. so just gets added to the issues. I NEED another meeting with my advocate to discuss on the wrong things which have been put into letters and to tell my side of what has gone on.

    The EOC guy told my boyfriend that he's waiting for my advocate to get back to him and that she'll be ringing me. (that is what he told me last time but she didnt ringand a week or so later after I'd spoke to him, I ended up ringing her again).

    Its like my issues drag on FOREVER!! and like due to this Im constantly stressed over the issues with the gov agencies and my inability to communicate well with them (due to communication issues on all sides, me struggling and they not ringing back and meetings I need to discuss my issues arent happening (when Im not managing to pull it together enough to put everythin in writing). No one has enough time to try to help me sort out my issues.
  19. brenda

    brenda Senior Member

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    @MeSci

    Sorry l missed your question. There is a primiliminary test to use before the more extensive ones. I don't have the concentration yet to do the other one with this candida flare. Yes you are right and aspers is no longer diagnosed, it is classified as high functioning autism which quite a few disagree with. I do need support so l will go for a diagnosis but it will be a fight no doubt at my age as often you need to go outside your area to get a psych who recognises female types.

    That's interesting Tania, finding out like that. I don't understand how mine was missed at school but l learned to hide it early on and act as though l understood things whilst just being totally confused by people . l read Attwood but don't agree with that mental health model. I think it should be recognised as biochemical re Yasko. Quitting gluten and casein made a huge difference for me. I am still reeling to have my world turned upside down at such a late stage but it feels good to have clarity over so many things.

    Yeah l get it about missing the plant. Likewise with the many driving lessons and teasing which continued into adulthood.
  20. taniaaust1

    taniaaust1 Senior Member

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    Brenda. I found counselling for the Aspergers quite useful (its the only kind of counselling Ive found useful!). I had this counselling as soon as I found out I had Aspergers which I had as needed. A psychologist who was familar with Aspergers would work with me when I needed it eg when I having issues with another and couldnt really grasp what was going on (I can be quite naive in some situations so having anothers professional opinion can be good), or if I had issues relating back to someone as in being confused on how I should be acting etc. She'd coach me throu various situations eg dealing with my boyfriend and others re communicating better. We'd put on her whiteboard the different ways situations could be responded too (as some very obvious things I'd miss!).

    I dont know about where you are but is there an Autism Society where you are? It is throu my local state Autism society we found Autism specialists to assess me.
    Valentijn likes this.

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