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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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    [quote="brenda, post: 455624, member: 184] 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 ..[/quote]

    In a way its much like having to hide ones ME/CFS and the brain confusion we get with that or having to hide how we feel with our ME/CFS. Ive had a lifetime practice trying to "hide" and trying blend in. I wonder if my hiding experience helps me hide my ME/CFS brain stuff more? I hid my ME/CFS from my family and friends for a long time.. being embarrassed about being not as capable as others due to poor health.

    In my family illness was never welcome and always explained away with "You'll be right", the dont worry be happy attitude. I remember having what I think was bad food poisoning when I was about 12 or 13 and my mother wouldnt take me to a dr.. "You'll be fine, you're probably about to get your period for the first time". I was so so sick!!

    I need a t-shirt saying "Expert in hiding confusion!"
    Last edited: Apr 23, 2014
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  2. brenda

    brenda Senior Member

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    Tania I am in the UK so worsening levels of support and testing available. I have to have an NHS diagnosis to get into local Autism support and I might not get that. They don't accept private assessment. I am trying to get to the local get-togethers but they might not let me go without a diagnosis.
  3. brenda

    brenda Senior Member

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    In a way its much like having to hide ones ME/CFS and the brain confusion we get with that or having to hide how we feel with our ME/CFS. Ive had a lifetime practice trying to "hide" and trying blend in. I wonder if my hiding experience helps me hide my ME/CFS brain stuff more? I hid my ME/CFS from my family and friends for a long time.. being embarrassed about being not as capable as others due to poor health.

    In my family illness was never welcome and always explained away with "You'll be right", the dont worry be happy attitude. I remember having what I think was bad food poisoning when I was about 12 or 13 and my mother wouldnt take me to a dr.. "You'll be fine, you're probably about to get your period for the first time". I was so so sick!!

    I need a t-shirt saying "Expert in hiding confusion!"[/quote]

    Yes it is just like having to hide ME to blend in. Get me a t-shirt when you find one! In the same way my family would not accept my physical ill health and was said to be a hypochondriac and with the aspie symptoms they probably thought it was all in my head when I was displaying what they thought were mental problems. I can barely remember my childhood as there was so much confusion but at least I know why now.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Here are some online autism questionnaires:

    http://personality-testing.info/tests/EQSQ.php

    http://aq.server8.org/

    This seems to be the same test:

    http://www.aspergerstestsite.com/tests/#.U1d6B1ctrcc

    http://www.rdos.net/eng/ (Click on ‘Aspie Quiz’ on left)
    brenda likes this.
  5. brenda

    brenda Senior Member

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    @MeSci

    I did one test and got 40 out of 50 which is 5 higher than the average Aspie and very high.


    Thanks for those tests - next one 154 out of 200 - likely an aspie.
    Last edited: Apr 23, 2014
    taniaaust1 likes this.
  6. taniaaust1

    taniaaust1 Senior Member

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    Brenda. I actually think it is likely you have Aspergers due to how you are at the forums and are in a habit of rubbing people up the wrong way (you were causing almost outrage today on one of the threads) thou I realise now you dont mean to do so.
    brenda likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Legal service 22 april 2014.jpg :confused: I just looked at my mail and it turns out Im being let down again. The Central Community Legal Service have sent me the following letter (this service told me after my appointment with them that they'd do Disability Services a letter but by this letter obviously since changed their mind and now they too join the "waiting game".

    My complaint to the HCSCC goes back to last year (forget now which month April?) and after leading me to believe they were going to put a section such and such (forget what number it was) onto Disability services (which they also said was a last resort thing as it caused issues) for how they were treating me, someone there from there rang and ended up telling me to contact an advocate (which I then did again) and said my complaint didnt full under them. (They since , this year a month or so ago, sent me another letter since I complained to EOC but Im yet to respond as Im wanting some help to do so seeing everything I say is ignored and seeing I can only focus on one thing at a time (now my primary focus is paperwork for the EOC, physio appointment on tomorrow and a drs appoitment next week which I'd thought was this week).

    My advocate (from the other service not the legal service advocate but from the Disability and Advocacy Complaints service) didnt ring me today so I'm going to have to try to ring her again tomorrow and hope she's there (she must only work part time as she isnt there some days.. and then unfortunately some times messages arent being passed on).

    My boyfriend told me that he could only get the EOC to extend for a further 2 weeks and then I MUST have all my paperwork and letters in there. So the HCSCC will have to keep waiting, I can only deal with one place at a time. Actually due to this and knowing they will not do any further extensions, Im now actuallly thinking Im going to have to cancel my next weeks medical appointment as Im going to need the day to sort out the replies I need to do to letter or I wont be making the deadline. (which sucks if I cancel it as Ive already booked support worker etc for that appointment and had to rearrange my shopping day to another day with 2 other workers to organise that medical appointment!!

    Everything I do here impacts on something else to fit things into the pacing I need to do to not get worst.

    Anyway.. by this latest letter... seems Im unable to get any help anywhere NOW other then play the constant waiting games.. waiting for phone calls back and waiting for next DisabilitySA letter in response to our meeting (when was that meeting? 3-4 weeks ago?), waiting to be able to arrange another meeting with the advocate ... while Im forced to drop other important things to stop the EOC from waiting on me. The public system is completely unmanagable!! (I wish I could afford a private lawyer re the discrimination).

    Im very tempted to try to get back in touch with one of the Current Affair TV shows in the hopes someone will sit down and listen to EVERYTHING which is going on without expecting constant letters from me (not one person has the details of even half of what has gone and is going on)... Im needing someone to sit down with me to go throu everything and then sort it out.

    I wish I could get one of these people who are supposed to help me to read my thread! so they could understand. (it explained in what is now 39 pages! following throu all the bullshit Ive had without things being sorted out as people arent understanding and Im struggling to simply explain the issues).
    Last edited: Apr 23, 2014
  8. brenda

    brenda Senior Member

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    Yes I think so too. Thanks, yes I do upset people without meaning to :) My meaning is genuine that is to help. I never bear any bad will however.
    Last edited: Apr 23, 2014
    taniaaust1 likes this.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Good grief, who do they think would try to crash an Aspergers group? :rolleyes:
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  10. brenda

    brenda Senior Member

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    Especially with me in it ;)

    Sorry Tania, continue........
    Last edited: Apr 26, 2014
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  11. taniaaust1

    taniaaust1 Senior Member

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    its a truely crazy situation out there.. I wasnt allowed to attend an Aspergers support group after my offical Aspergers diagnoses by the specialists from the Autism Society. Why? Cause I had mutiple diagnoses (this was when I was having my mood swings before my insulin issues were diagnosed) and on that bases told me due to my mood swings, and several suicide attempts, ME/CFS etc.. I wasnt allowed to attend for support after my Aspergers diagnoses!!

    How crazy is that to deprive me of the support group I was needing due to this kind of biased/discrimination.... it was just another thing which helped add to my feelings of being alienated and discriminated against and my despair at the time over not being treated well.
    Valentijn likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    :jaw-drop: o_O :mad: :( :aghhh: :cry: {I am speechless}
    MeSci likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Letha? Henry my Disability Advocate ( is back from leave and rang me today in response to my call there the other week). She told me that DisabilitySA is wanting me to fill out another consent form and want to get my consent over questions they are going to ask Dr DelFante ("CFS" specialist) on me...

    so now Im waiting for that letter to arrive to sign. Im going to be very curious what questions they are going to ask, obviously my specialists previous letter saying I can only walk 4 steps isnt enough for them!. What's the bet they are going to ask due to their naiviety on ME/CFS if Im suffering depression or some kind of mental health question seeing they have treated me like ME/CFS is nothing more then a mental health issue eg not a real physical disorder to give me support for. (anyone Im expecting them to probably put to him a crazy list of things to ask with the usual ME biased).

    She also told me that they are seeking more info from my dietitian or that they are going to follow her advice they've got there. The issue there is the last dietitian I saw was useless and completely ignored how much trouble Im having cooking and was the one who wrote in an email to me "CFS is fixed by not watching so much TV!!! (I really wish I'd put in a complaint about her, but she's one of the many people who Ive dealt with which I didnt have the health to complain about) That dietitian also after asking me of the things I dont like or dont at all eat (I dont eat some things eg pork, shellfish due to religious reasons), she turned around and put those things into my diet too. She ignored everything I said. (Im sure she didnt send me an individual diet plan based on our meeting at all but rather just a standard one she sends everyone). So Ive told Letha that they need to contact my other dietitian who completely understands my carb issue etc and put me on the very low carb diet Im currently on.

    Anyway it looks like more forms on their way. (I have signed sooo many consent forms and forms for them to talk to my doctors etc etc, I dont understand why Im getting yet another to sign. Did they throw my others all away thinking I'd give up on trying to get the help Im needing?).

    I also wondering how Dr DelFante may be able to even answer a heap of questions on me when he's seen me only for 20mins in maybe 18mths? and most of that time I was discussing not me but of disabilitySA issues Im having cause Im so upset about that so we didnt even hardly touch on my health issues.

    He doesnt know many of my coexisting conditions to what Ive seen other doctors for and he also as he doesnt understand ME, he isnt even aware of most of my ME symptoms!! (once when I told him I get tremors when I crash, he just goes .. that cant be ME/CFS. So obviously he didnt have a clue that neuro symptoms manifest in ME. He also believes ME is CFS. I get over 90 different symptoms and he's probably only aware of say 5-6 if even that and what he's most focused on "fatigue" isnt what is my biggest issues.

    Anyway, trying not to stress as obviously thou he does have no idea at all at the extent of my illness, he does know "CFS" can be a debiliting illness as he did back support for me having a wheelchair to the states Disability service (along with a couple of other doctors).

    I wish the Disability service would think for itself and use some common sense .. obviously if a doctor puts that I can only walk 4 steps and 3 doctors support a wheelchair.. obviously (but not to them!) that would affect things like my ability to stand there and cook and the other things Im needing help with. The gov disability agency is too stupid to understand that or is just determined to keep discriminating against ME/CFS and making out that we dont have issues it should support. (the only reason why I think they want to ask my doctor questions now is cause I have the Equal opportunity commissioner guy onto them.. or Im sure they'd otherwise but not even bothering to contact!).

    How much evidence do they need before they will believe this illness is real! 3 doctors support my physical disability isnt enough? and those in the disability dept arent even doctors yet they say the yes or no to support.

    Why dont they accept that Im actually disabled!! and at least give me some support for ME/CFS!
    ............

    It happened YET AGAIN today. An agency (Dom Care or something like that) today brought around the shower chair and also the portable wheelchair ramp (which I cant figure out, it just collapses! so they now need to come back and show me as I may be doing something wrong). The person arrived wearing PERFUME!!! so I had to tell her to leave the things outside. When I tried to find out how this happened yet again, she said that it wasnt in her notes and that things are hard to pass on cause things go throu so many different people. (typical gov agencies).

    Fortunately it was a perfume which I seemed fine with but isnt the point, Im so fed up with this happening and Im not always fine when this occurs and I want to avoid this kind of thing making me sick yet again.
    Last edited: Apr 28, 2014
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Ditto.
  15. taniaaust1

    taniaaust1 Senior Member

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    Todays run around - round and round in circles I go which ends up with me finding out that some gov depts are actually excempt from the freedom of info act, so I cant use it to get what's in my case file!

    The other day my elderly friend took me to check out the local health centre we'd only just noticed the other day (thou obviously Ive always been taken past it when being taken to the local shops but I miss a lot), I wanted to know what the seaford health centre does re could they help me in some way? I wanted a social worker seeing I dont even have a case worker now with Disability services since they recently said I do not need one!. A social worker to help me deal with letters and help me to respond to the gov depts Im trying to deal with, would be very helpful. A social worker who gets to know my case.. would be a good thing and good support for me.

    Anyway.. so we went in and asked. I havent taken my wheelchair with me as I didnt think it would be an issue to ask someone just about what the place does (thought I'd be in there less then one minute and thought they'd have a chair to sit down and talk to them). Turned out thou the chairs in that area at all.. were back from the desk and were of the non movable kind (unless i stole one from the cafe next door)..

    so Im trying sit there and talk very loudly back and forth to the one behind the desk who's asking me questions. She ended up saying she didnt like me yelling over the room to her so I ended up having to sit on the floor below a high desk with her on the other side with us not see each other to communicate (so I felt like I was talking to wood). Anyway after that way of having to communicate and telling her about all the issues Im having re getting letters done re gov depts etc and that this has been a constant issue for me for over a year (they are never ending, always more coming in and they just build and build), she tries to ring someone who she said may be able to help which is based in a different location. Turned out the other was away, so I was then told the other would ring me in a few days when she was back.

    Today the other rings me, turns out she cant help with letters or any actual practical support she can only offer counselling. I told her how when I lived in the country before I moved to the city to be closer to my doctors.. social workers were able to help people with letters and stuff. She said that's all been changed and that our gov has now put the focus on social workers helping with counselling and not doing practical stuff like that.

    She did thou tell me to try to get in contact with another place I hadnt heard of before, so now a place called "Southern Community Justice Centre" enters the picture (seeing the letters and all the responses are all part of stuff the equal opportunity commissioner is awaiting on and other stuff re this all going into a legal case). So I ring there, only to be told to ring the "Central Community Legal Service".

    That Central Commuity Legal Service is where the other who came out and home visited me a few weeks ago was from and who ended up after a second meeting she had with her superiors saying they will wait to see what the HCSCC does (the dept my complaint went into in April last year) before they decide to take up the case. (the letters Im waiting help finishing are all to do with sorting out the HCSCC stuff.. so round and round in circles I go). Thank God my elderly friend is helping me some with letters even if Ive cancelled medical appointment to get this done, thou we are still struggling to meet the deadlines being given (he found out yesterday when he came to help that its far more complex then he'd thought.. it was still 1.5 pages long in the short point form he helped me to do and that one letter is only half responded to still.

    Today I found another HCSCC letter and Im now wondering if we are even responding to the right one for the EOC!! (so now Im worried we may get this one in only just before the deadline and find out its the wrong one).

    So anyway I tell the person that Ive already tried to get help throu the Central Community Legal Service but they've decided just to wait on other things before helping me (they cant offer help with letters and stuff unless they have taken a persons case up!) but they said to ring them again and see what they say. So I ring and of cause was told they cant help me. (I rang Pauline from that service, the one Ive recently had the meeting with).

    Well this phone call lead to more confusion as it turns out Pauline had been completely unaware that Im also dealing with the equal opportunities commissioner.. I really thought I told her that as they were the ones who'd told me to ring her dept orginally when I was stressing about how long things are taking to sort.. but maybe I said wrong names. She kept saying "but you said this".. she had thought things were all to do with HCSCC the dept which had told me in the end to contact an advocate to get help with dealing with disability services. **sighs**.. I can not be trusted to give right info as my brain screws things up and this is the whole reason why I need a case worker. She ended up softening her tone after a while as I she obviouisly realised just how confused I am and struggling to get all the people and depts right.

    But anyway.. she cant help right now till outcomes in other areas are decided.

    From the new info thou I got from her (unless its all stuff Id forgot, which is likely), that she's awaiting on a HCSCC response to me (umm well I wasnt expecting one, I'd been passed on some time ago), thou recently they sent me another letter after I'd been told they'd dropped my case (picked it back up I assume due to the EOC complaint) but Im yet to have a chance to reply to that one as Im currently trying to correct the wrong stuff in my files by letters, info held by HCSCC and by the EOC which was put out about me by the disability service.

    During the phone call with Pauline (Central community legal services), she told me she didnt have my original complaint to the HCSCC so I then told her I'd get it for her and send it in (she's probably missing HEAPS of stuff.. lots of my communications between the depts). As I dont know myself were that is, I thought I could phone the HCSCC and ask for copy of my complaint and the stuff related to my case. So I ring the HCSCC to ask for copies and asked "do I need to apply for this under the freedom of info act?".. only to be told "we are except from that".

    oh boy so obviously cant even get copies of my stuff to give to pauline (the lawyer) unless i get lucky and without all that stuff, I cant get help as they are in well wait and see mode. I also wanted a copy the complaint regarding my case that a dr from PR had previously sent to the HCSCC to try to help me but obviously arent going to get that either from them.. (im needing all the evidence of all the bullshit Ive been put throu at this point to present to the lawyer that no action has been taken to help me with all this and to actually resolve things).

    Anyway.. I bet you havent been able to get your head around this post.. its the situation Im in too.. I cant deal with it all without support doing so and things just keep going round and round in circles.
    ........

    Pauline said more info is needed from my doctors to go to DisabilitySA. When I said the fact that 3 doctors supported me in getting a wheelchair and that it has also been put in writing to them by one of my doctors that I cant walk more then 4 steps.. I said isnt that enough to prove I should be getting more help then just for my aspergers? She said no. The doctors need to actually specify individually each thing I need help with.

    I forgot to point out to her the fact that even when several doctors had contacted Disability services in the past re the transport issues I had with getting to them and the fact the disability service ignored that.. and many months longer before they granted me help to get to a few appointments. (actually once again one would think that that would show discrimation but they can just go "we took so long due to having to be careful with funding". Actually I'd best at some point do a letter to pauline mentioning about how I was ignored for that even with several doctors calling them and I know they got at least 2 letters from doctors re that.

    sighs..so that looks like it is going to be the next step.. me getting to those last couple of appointments Ive been given and getting the doctors to do very detailed letter (when they just hate paperwork!) which the disability service I will know will once again try to ignore. At least they are being watched now and they know it.

    Its annoying thou as this will mean that those appointments DisabilityServices finally agreed to help me get to, wil be now spent not on going throu my medical stuff and doing things like treatment and prescriptions I need etc but rather ithe doctors having to spend my appointment time discussing all my inabilities and percisely all the areas Im having issues in just so they can do letters (just so they can relay the info Ive repeated back .. sighs why dont these other depts deal directly with me with the confirmation of the doctors how sick I are, rather then making me waste appointments it took a year to get to). Note..a double appointment is only about 30mins, less when doctors are running behind.

    My medical stuff now keeps getting put off due to all the bullshit which has gone on due Disability services refusing to accept that ME/CFS is a severe illness.

    And now Im waiting for someone in the HCSCC to phone back in the next couple of days to see if they do mind at all giving me copies at least of what Ive previously said and sent them so I can give to Pauline (central community legal service) .. thou they have no legal obligation to do so seeing they are excempt from the FOI as they have told me (and I have no doubt they will try to protect the Disability services from being sued by me, they may have copies of letters which have gone back and forth between me and disabilty services which Ive lost).
    Last edited: Apr 30, 2014
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  16. taniaaust1

    taniaaust1 Senior Member

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    :( Another Ambulance Trip

    My elderly arrived today to help me out completly replying to at least one of the letters but turned out my health had put a stop to us being able to do any of that today and instead we ended up having to ring an ambulance to have me taken to hospital. So my stress level has just been put up more as Im under that deadline to get my responses into the EOI and the last I needed is to have spent the day in hospital (I was admitted to the short stay ward).

    here's how my day went (this was brought on by me doing too much online yesterday and not enough lay downs and rest). Im tying this while still wearing a hospital gown (they allowed me to wear it home).

    I woke up this morning feeling like I was only a week away from death (it really did feel like that!).

    I was all over sick and trying not to vomit, weak to the point where I didnt want to move at all even an arm (the condition we get where we wont even move when we are feeling uncomfortable and needing to move but will instead just lay there suffering as its too much to move. I was needing to go to the loo but in that state well that wasnt going to happen so I was just holding on and on. I was also needing a drink and dehydrating but in too bad a way to get myself one, I couldnt even sit up, just to try made big head spins happen.

    Anyway, fortunately it was the day my boyfriend comes over when he isnt away, he ended up as I was no good to get up, just laying silently on the bed with me for a couple of hours but then when I wasnt improving (just this limp thing on the bed).. he was trying to raise me up a bit to get water in my mouth (it was dribbling all over the bed, I do have straws but in my state I was in condition to tell him to go and get one). I kept on making him stop trying to give me a cup of drink as even just the effort of swallowing it was being too much and I was actually having to be layed back down and resting 5-10 mins between mouthfuls.

    I was not well enough to even speak so he was speaking to me and I was having to ignore him cause it was too much for me to even respond to a quesiton on what he should do for me.. speaking very draining esp when my friend has trouble hearing me when Im like that and too weak to speak up so he kept asking me to repeat.. so I ended up giving up... all too hard.

    It got to the point where I knew I couldnt go on this way or my bed was going to get peed, I'd picked up enough after he'd got a glass or two of fluids into me to be able to slowly sit and he then tried to help me get to the toilet. It didnt work out, I made the end of the bed before I collapsed on the floor (Im too heavy for him when this happens) and couldnt get back up so that point I thought stuff this (this was after him being here for several hours by this time and me not really being any better.. by this point I'd been 5hrs in this state), Im needing a drip.. so told him to go and ring an ambulance. So he did.

    Ambulance officers were good. I mentioned my problem was POTS and they go.. oh "the yellow wiggle" thank god for that guy for making POTS famous in Australia! Im going to write to him one day and thank him for that. Unfortunately they wouldnt help me to the toilet before they stretcheredd me out (I was shaking and couldnt still walk so they said they wouldnt risk me sitting on the loo..even my pleas of that I may piss myself in the ambulance didnt waver their stance on that). When they arrived and took my heart rate before I was moved, my resting heart rate was well over 100 and my BP was up to 170 at rest (both things which happen when Im having a very severe hyperadrenalic POTS crash....otherwise I only get those things happening when Im upright)

    The hospital nurses were good, one had the same reaction to hearing about POTS "the yellow wiggle". There was the normal hours wait at the hospital before being seen by a doctor but this time they kept me on stretcher or bed (after I told them how last time when I was filling a little better I'd been told to wait in waiting room which only ended up resulting in me being found collapsed in the toilet by a nurse).

    I was brought a bed pan in the hospital and it was put under me.... funny how much joy a bladder release can bring if one has been holding on for maybe 5hrs by that time. I had that sensation of my legs and that getting wet but as Ive had that sensation before when going to pan while laying on a bed and thing turned out to be okay, I ignored it. Bad move... turned out I'd well overflowed the pan and it had been running all over the the bed too. So when I moved I realised the bed and me was wet from my neck to my feet!!! (how in the hell did that happen!). As I still couldnt sit up this meant the nurse had to come and change everything in the bed and I had to be completely undressed. So had to go into a hospital gown at this point.

    Still was waiting, waiting to see the doctor.. as someone who doesnt get worst with POTS while laying down and obviously wasnt going to deteriorate more as long as I remained laying, this meant I was the last priority person in the ambulance bay area as they could just leave me to tend to the others.

    My boyfriend was going and buying drinks.. so I spent hours at the hospital trying to rehydrate myself while waiting to see if I could have a drip. By the time the doctor did get to see me, I was so much better then I'd previously been and to the point where I was fine to sit. They admitted me to the short stay ward at that point. There was a toilet very close to my bed and soon after (with still drinking lots and my boyfriend buying more cold drinks) I'd reached the point where I'd FINALLY for the first time today, been able to get myself to a loo.

    My blood tests this time came back fine (kidneys fine this time). The doctor was decent thou he was very naive about POTS or dysautonomia. I got told they do a laying and standing BP readings for everyone at Noarlunga hospital (is that true? if it is that is a step forward in progress).

    Unfortunately they arent checking things properly (but its better then nothing I guess as it must be picking up some peoples issues) but they tried to check my issues by taking a laying reading and then having me stand and instantly taking a second reading and that was it. (my heart rate was still rapidly raising when the test stopped. They didnt even take it for 40 seconds).

    Doctor then pronounced everyones BP changes some when they stand and that I was fine. With me not being at my ME best, I didnt say anything to this quite silly pronouncement seeing one cant see POTS or orthostatic issues from less then one minute of a reading!! (that's what you get I guess when a normal doctor tries to play specialist in disorders they know nothing about) Anyway, this whole thing is a worry to me as this reading now has gone down in my hospital notes as a standing test reading for others who are just as naive to think it shows I dont have an issue.

    I really wish this test hadnt been done after I'd spent hours of constantly drinking in attempt to rehydrate myself as often due to how severe they are, my orthostatic issues can show up even in a one minute test and I think they may of done if I hadnt had all the water in my system by that point. I wish they'd tested me for that minute while I was still struggling to stand up (and not tested me once I was okay for less then one min).

    Anyway..the doctor was nice but simply naive on these kinds of issues so just didnt know how to go about testing correctly. At 5.30pm I finally got to eat for the first time for the day, thank god my boyfriend was at the hospital with me so I was able to send him out to go and buy me a subway salad to bring back. I'd been far too sick to eat at all that morning ..and then of cause was in emergency most of rest of day before being moved to short stay ward around 5.30pm with no idea if I'd be given any food so otherwise may of gone without food for over 24hrs (that's happened to me previously when Ive been admitted to hospital after spending all day in emergency and then ending up on a ward just after the meals have been already done, and cause of my dietary needs, I couldnt eat the snacks they usually can give).

    By 6pm tonight, I'd improved enough to think myself that I may get away with not needing a drip and the doctor after much thought I think had already come to this conclusion too (hopefully I wont find myself in the same state tomorrow morning when I wake up, its hard to know for sure what to do).
    ........................................................

    Oh I just saw my other post and can see that it was yesterday i was doing all those phone calls trying to sort out the mess (I'd forgotten about that). I'd thought it was weird that I'd crashed myself today just due to being on computer yesterday.. it would of been doing all those phone calls yesterday too which caused the terrible state I was in this morning. I did too much yesterday (thou it was all sitting down stuff but phone calls are very draining on me and put a lot of stress upon me).
    Last edited: May 1, 2014
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  17. taniaaust1

    taniaaust1 Senior Member

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    I forgot to share that I found out some info today from the ambulance officer (the one who knew about POTS) which should be very useful.

    She said in future as I knew I just needed rehydration, to when 000 is called (our emergency/ ambulance number) to tell them (as long as I have no injury from a collapse), I need an ECP referral for rehydation and that the ambulance people then will just phone the hospital and speak to a doctor to hopefully gain approval for ECP paramedics to come and just give me saline IV at home in these cases. ***fingers crossed that this will work next time as I HATE going to hospital esp when they never give one the saline IV right away so one spends hours longer then one should need to in a bad way).

    Im trying to remember when the ambulance was rung last time. I think it was Feb. and there was one time since then in which I had very bad collapse in which an ambulance should of been rung.. so currently its almost every month in which Im getting so bad that I need to be in hospital due to having much worst then sudden collapses I can recover from easier by laying a few hours. That's quite a decline Ive had! (all over not getting enough support).

    I cant recover myself from these states without help in getting me fluids or those into me while my toileting needs also have to be catered for at these times. If I could end up getting a drip as soon as I really needed (not 12 hrs or so later!) to recover, I wouldnt go throu things like ending up being covered in piss with a nurse needing to change my sheets and dry me. This should of been preventable!!
    Last edited: May 1, 2014
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  18. taniaaust1

    taniaaust1 Senior Member

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    Today cause I confused everything with the times I booked with my home support agency this week, the mistake resulted in me getting extra much needed time as the worker then wrongly showed up and the think the agency would of had to have paid her anyway due to that, so my floors actually got washed!!!! Yah.. clean floors! Is this really my house? It may be the only time this year that this has occurred (not sure, it may? of happened once before but one of my workers told me the other day that she doesnt remember my floors being done at all since she's been here and Ive had her since Ive changed agencies). Ive had dried blood over my bedroom floor for months.

    On Monday when only one worker showed up (my regular Tuesday day I had to change due to a medical appointment.. sighs, one I didnt even end up getting to go to in the end) ..but only one worker showed (and it takes two workers to take me shopping in the wheelchair. So I rang the agency and told them I was missing a worker, they were confused but got someone else to my place within 20mins so we could do the shopping.

    Then today, two workers showed up.. Ive realised my mistake now, my shopping day must of been made today but like normal Ive confused things so the agency obviously didnt make a mistake in the first place but me. As two workers were here they told me I could keep the two here.... so yeah.. my floors finally got all washed for the first time I think this year.

    This week due to my screws with trying to arrange times with the agency, I ended up with an extra 2.5hrs all up ... and Ive found that this is perfect and exactly what Im needing to get the basic housework stuff done here. I even got the worker to pull my bed to bits and put the electric blanket in (sometimes my bed goes so long without changed sheets that they are horribly dirty).. its been so cold here and I hadnt been well enough to be able to add it into the daily stuff I do so have been going cold at nights.

    The agency took my mistakes well and didnt go and blame me for the fact Ive used up half the time again then the time they are funded for for me by DisabilityServices. (this time even with the extra time didnt allow any time for helping me cook up anything, ironing or anything like that.. it just covered dishes, washed floors, cleaned bath, sink loo, making my bed once.. just normal life stuff people would expect to have done... I also had to today get the worker to feed the cat as after helping her do things for about 15mins.. I was very burnt out and heading downhill so now need to rest the rest of the day and night.

    I got a worker (broke the rule about leaving a worker alone in the house, one was doing the floors or they would still not be done!!) to take me to subway to get some salads to put in my fridge as Im not well enough to be cooking tonight and I probably would of ended up not eatting today otherwise (other then some nuts Ive been munching on).

    We had to take the wheelchair just to run quickly into subway and I also went long hair not done, undressed (Im so needing to take care that I dont crash and end up in hospital again, Im still wearing the hospital gown I came home in last night but put my dressing gown over it and havent even bathed yet thou I was covered in pee yesterday (and then just wiped down with a dry towel but not washed). My state is so bad today after just doing on feet stuff around my house for 15mins today, that I didnt even bother to put panties on under the gown when I was taken out... that went into the all too hard right now basket. I also went without shoes (I just had to focus on getting food!! or Im risking crashing more..with its insulin issues my body needs good food).

    My brain is worst then its normal poor self today. I had alot of trouble giving instructions to what I wanted on my subway.. hard to think and answer questions on the spot just like "do you want salt and pepper?" I was so slow in responding to things that the girl was about to ask me again. Im so glad there was no one behind me waiting as I think they would of been making sighs and that and being rude due to how long I took to tell the girl of each ingredient I wanted (or maybe not, I know I must of been looking a mess, I was slumped in the chair).

    Im obviously still not back to my usual bad ME baseline and still suffering from the collapse yesterday.. darn doctor, he should of given a drip and maybe I'd be more back to myself today. :(

    The meat from the subway salad which I'd got them to put into a bag, ended up being left in my handbag. Thank God my worker remembered it was there and reminded me to put it in the fridge!

    I also had trouble giving instructions to my second worker today.. struggling to get words etc and just not being able to get them so she had trouble understanding what I wanted today (my other worker ended up stepping in). Im screwed if I get a worker who doesnt know me well on one of my very bad days as I cant instruct.

    Id rate my thinking speed today about 10 times slower then it usually is.
    .............

    Ive tried to ring my advocate today but she's away till Monday. Ive also tried to ring the HCSCC as they were going to ring me back yesterday but I would of missed their phone call due to being in hospital (but got just an answering machine of the one there I'd phoned so left message to phone me back). I guess I shouldnt be doing phone calls today as I think it was doing that which caused my crash yesterday, I did lots of phone calls trying to sort out things on what is usually my enforced rest day! (on Wednesdays and then also enforce a rest day on myself on the weekend to help get me throu the week)

    Im just so desperate to get my worsening situation here sorted out and if I dont keep doing the phone calls trying to advocate for myself to these people.. I will never get the help I should have and urgently need. Its just all these phone calls and letters Im trying to do in which I really shouldnt be doing as Im too sick. I thou have no choice as my current situation needs to change.

    I really wish some movie person would make a drama about someone who has severe ME trying to get throu life. Its certainly an original movie theme which hasnt been put out yet. Maybe we should be writing to movie producers and trying to get them interested in doing so. I watch a lot of dramas on people who have health issues and wonder why on earth is there no ME movie story line yet. It would be sooo easy to come up with dramatic ME situations to put into it eg like the time I broke a boom gate and security had to be called as I'd got stuck in a carpark after forgetting how ticket machines work so tried to get out of the carpark by pulling the boom gate up (as I couldnt find anyone to help me and I had to get home fast as I was worsening quickly). Thank God my friend who I'd phoned for help came and talked the security into not calling the police.

    I dont know if Ive mentioned it (sorry if I did and forgot), After hours of not being able to remember, I messaged alex for help the other day as I forgotten how to put spaces in text messages (something I'd previously known how to do for years) and were needing to text a message back to someone..being able to text is important to me as some time I cant cope with voice talk. I cant trust that anything I know may not just go and drop out of my head. He phoned back as he couldnt read my the strange message he got from me with the no spaces and we had a bit of a talk about ME amnesia situations, we'd had like issues. I think that was the longest phone convo Ive held with anyone here yet.
    Last edited: May 2, 2014
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  19. taniaaust1

    taniaaust1 Senior Member

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    Allergies

    I think things have just became a bit clearer to me. Those who read this thread may remember that late last year? I had a bad allergic reaction after breaching my normal very low carb diet and ate some pizza hut pizza and some plums... my mouth and lip swelled, tongue was affected and I probably should of rang an ambulance as it was quite a reaction I was having. I was left to guess after that (as I havent gotten to my specialist yet re allergy testing) of what thing I'd eatten which had caused this bad reaction. I ended up assuming that possibly it was to the plums.

    A few days ago I received a parcel in the post and when I opened it, turned out it had a free gift sample of bath salts.. peach bath salts. I didnt open the salts package up but they were quite strong still. They had the most beautiful fragnance but they made me ill so I had to get them out of here. I was surprised to be made ill from this sample as it had come from a collage that specialises in natural products so I ended up emailed the collage telling them that the free gift in their parcel to me had made me ill and ask them what chemicals was in it.

    It turned out that it only consisted of a few things and the fragnance was their own natural one and they suggested I'd reacted to peach. When I read this, it dawned on me something I'd read a couple of months or so ago after I had the terrible allergic reaction to either something on pizza or the plums. I remembered reading that those with plum allergies usually are allergic to peach too. Oh boy so it appears now Im even getting reactions to natural products just on their fragrances (as if food intollerances and possible true allergies isnt enough).

    So today I started researching this allergy more and at the medical website saw a link for a article on mustard allergy. I cant eat mustard as it makes me feel sick (I may of been that way with that all my life) even as an adult when I came to like it spread thin over corn beef, it still made me feel ill. So I got the mustard article up only to find out that those who have mustard allergy usually have cross reactivity to plums and peaches! and this food group. One study shows that out of 34 people with mustard allergy, 21 of them also suffered allergy to fresh fruit.

    Another study shows that every one of these people were also sensitive to the brocolli, cabbage, cauliflower family. I dont eat much cabbage or cauliflower but was eating a lot of brocolli but then had to cut back as in the last 4-5mths I seem to have got sensitive to it it and it was that I think which was giving me stomach pain (a couple of times quite badly). After I then found out I had CBS mutation thou, I was blaming that mutation for the issues I now seem to have at times to brocolli. umm now I find out it may be related thou to all this other stuff going on with me with new allergies developing.

    My situations with foods is just getting more and more complex. Im starting to become worried that I could start to have issues with everything. As it is on the very low carb diet Im on.. now most of the foods I eat due to this, are mostly foods connected to these allergies.

    eg ones with the plum/peach food allergies articles say this group often goes on to develop more allergies eg to macadamias (they are currently a part of my staple diet), celery, zuccini and other stuff Im allowed to eat in unlimited qualities on my low carb diet and do. Maybe all these usually healthy for most things currently in my diet are actually helping keep me sick and making me worst?

    Could my worsening health gave me new allergies the last 4-5 months? or could new allergies be giving me worsening health? (or maybe those things arent going hand in hand at all?).
    Last edited: May 3, 2014
  20. taniaaust1

    taniaaust1 Senior Member

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    an 10cm by 6cm rash, this one stinks.jpg Stinky rash

    I have this rash today which is at least 6cm (maybe bigger) by 10cm and it actually stinks.. I cant describe the smell, its a yucky strange smell. I washed/showered and dried it and it still stinks after that and its sore. Weird that I cant get rid of its smell (I guess it must be infested with bacteria or something? maybe I should disinfect it but its hurting enough now it would be like putting fire to my skin. Its weeping some too (this photo doesnt give it justice of how inflamed its really looking). Its probably just one of what I call my "come and go" rashes but this time with added smell and will probably be gone by tomorrow (I hope, its very sore and anything touching it is currently ouch!).

    Any thoughts on stinky rashes?

    My other issue today is I have quite noticable different levels of circulation in my feet, one toenail is very blue and the other is pink...feet are slightly different colour too. I quite often get this difference and wonder why? (anyone got any ideas?). Other then burning out my brain some today so its now in slow mode and fogged, right now everything else is fine so today is a good day! No physical fatigue just the brain fatigue. (I havent done anything today other then some research for something and showered).
    Last edited: May 4, 2014

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