1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

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

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    Its working out very well having two support workers taking me shopping as it means Im there for less the time (as I can send one off to get some of my shopping while the other one stays close to me). Since Ive been doing that, I havent had any collapses at all again at the shops. Less time on my feet= no collapses . The issue is. this has taken extra time out of my support hours I would of used in the house.

    Im working on trying to get a wheelchair throu the system...as I would get one throu that if I had any other illness other then ME/CFS. (I dont have a lot of money either to be spending on things which people usually would be helped with by the agencies).

    I FINALLY got officially in a complaint to the Health and Community Services Complaints Commissioner (HCSCC) over the issues Ive had with this states disability services (DisabilitySA).. someone here nicely 2 months ago tried to proxy me in a written complaint over how Ive been treated (but the HCSCC said in response to the others complaint that I would have phone them and put in complaint myself..but then when I phoned them.. they wanted it all in writing from me.. so much for another advocating and taking a bit of stress off of me).

    Cause I took so long to do it after my phone call to try to put it in.. the HSCSCC phoned me back asking if I still wanted to go throu with the complaint. I told them how I was having issues putting it in (trying to get all the details together and do a good letter) so they posted me what they wrote from our phone call to approve if it was correct. There were thou things on it wrong (it may be cause I say things wrong at times) and things missing so more had to be added to it.. (due to my Aspergers I go on and on and was really struggling to put it together in the way they would of wanted.. so my boyfriend ended up having to help me and redo all I do). Anyway.. my complaint over my treament is now in with the health complaints commissioner.

    Things Im complaining about about Disability services to health complaints commissioner

    - they havent helped me to get a wheelchair or given me one (they've completely ignored that I get collapses)

    - I moved due to being told I'd have access to more services.. that hasnt so far been the case. I still cant get to my specilaist appointments. No case worker means I get any one when I ring trying to deal with my case and usually they know nothing about it and things have been left out of the file.

    -Disability services has refused to give me a case worker (thou nearly all their clients have one..Im deemed not worthy of one due to the CFS?.. it has to be that. (everyone in the health services I speak to say I should have one)

    - I complainted about the time it took for them to set me up with a new support agency when I moved. I gave them advance warning well before I moved on the dates and kept in contact with them while my move was happening but it took well over a month (maybe it was 2 months) before my home support was rearranged.

    - Thou its been 3 months since I moved.. my local disabilitySA office hasnt transfered my file over to my new disability office.. so right now Im a bit in limbo. (I rang the office today which holds my file as I have issues and they transfered me over to the new local office who dont know a thing about me).

    - Im complaining that the support time isnt enough and Im needing another hour at least (and that still wouldnt even cover the unpacking.. that would just cover the time Im having to use having the two workers, taking away from the help I used to get with making up a few spare meals for when Im not well enough to cook. (im back to skipping meals due to this).
    .........................................

    Today.. my home support person didnt show up again and no one rang me to tell me she wouldnt be coming yet again.. that's the second time this has happened in one month. (last time he agency blamed their answering machine on not knowing she wasnt going to show up thou she said she seemed to leave the message with them fine). When I rang the home support agency (CSI) to ask them why she hasnt shown and to tell them I need someone here TODAY.. well they didnt even know I was getting home support from them at all (even thou Ive bhad a couple of new workers for a month now.. as once again the person who deals with my case was away (been sick all week) and nothing at all in my file has been updated so no one knew anything. :( So they said they would ring back after trying to find out what was going on.. so I was here waiting and an hour before they closed I decided to ring them back again. (in the past when Ive been told they would ring me back..they didnt).

    Anyway.. Im then told they dont have many support workers in my area so can not get me a replacement. **sighs** This means once again I'll loose some of my support hours as they wont be able to get anyone to make up on my lost time. Worst.. I had too much which needed to be done when support worker was here on Tuesday so it all didnt get done.. my floors are a mess and it had been planned to hence do them today.. I had an inch wide ant trail going across half my house and branching off in different directions..so have had to put ant rid and other things I tried to make up to kill the ants this week all over this trail. (and accidently stepping in ant poison cause I keep forgetting and step back onto it, gave me irritation on the bottom of my foot).

    2 days ago I got taken shopping and its still not sorted out.. I had meat I was going to get the support worker to sort out today which has been in fridge for 2 days since then.. it needs to be bagged in separate bags to go into freezer. Cause the support worker was meant to show up today and I was goign to ask her to do that (while I was just resting), I did other cleaning things today before she was due to arrive and arent capable now of doing any more things other then sit here or go to bed... I wont be up to doing more till tomorrow. (so that meat may end up going off .. tomorrow I should be going and having more blood tests done .. (I was meant to have these ones done early Jan but never get time and I cannot cancel appointment of the specialist who wants them done yet again) and my medical stockings sorted out and by then I wont be able to do much else so cant see the meat getting sorted and frozen tomorrow either. I cannot keep up with it all or keep up with the constant hassels Im having.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    A nice lady at the Health and Community Services Complaints Commissioner (HCSCC) rang me this morning to tell me they have my info now and have sent off my complaint to SA Disability and told me that I should expect a reply back from SA Disability in a month.. and if I dont hear from them to phone back the HCSCC (they themselves dont chase it up further except sending in my complaint.. while Im already complained so many times already to DisabilitySA (I have sent them emails in the past and phoned in compaint before).. unless they hear from me again.

    umm interesting.. I thought they would deal directly with Disability services over my issues seeing I have been trying to sort out the Disability service now for over 2 years with some of the issues I have without any success at all). Obviously the HCSCC now just expects the disability service to now sort it out as I have offical complaint in. (funny how the system works).

    thing is .. now my old disability service.. YESTERDAY when I had to ring them decided to FINALLY pass me onto a different branch seeing ive moved (they obviously didnt want to be dealing with my issues).. so now any dealings will be with different people who may not be discriminating against ME/CFS.

    I still want to hear from the old service even when the new people at the new branch sort this out as those others after years of bad treatment should appoligise for so poorly treating me (I do not want them to keep thinking that its okay to treat people who have ME/CFS like this and ignore our needs!!). I think the past discrimination, ..may of been passed to my home support agency (maybe that is why my case dont get treated like everyone elses does?? why I was left without home support for so long even after I'd been put onto them???? and why disabilities didnt get something happening sooner.. maybe the home support people have been told Im a psych case rather then genuinely physically disabled???)
  3. Lynne B

    Lynne B Senior Member

    Messages:
    103
    Likes:
    95
    sydney, australia
    Hi, Tania,

    My mother says that you can get second-hand aids like wheelchairs through your chemist here in Sydney. Don't know if that's also true for SA, but maybe worth trying?

    cheers, Lynne
    Valentijn and taniaaust1 like this.
  4. Lynne B

    Lynne B Senior Member

    Messages:
    103
    Likes:
    95
    sydney, australia
    Hi, Tania, Sorry I didn't address any of your more recent messages, but I didn't realise they were there until too late. My first response to your current difficulties is to go Aarrgghh! All I can suggest for now is to hang in there with your complaint and keep trying to prioritise. Every day... Hope you get your meat sorted before too late.

    cheers again, Lynne
    taniaaust1 likes this.
  5. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    I agree.

    I wish you had better transportation options in your area.

    Also I suggest a headset for your phone. With a headset, being placed on hold is not as bad. Speakerphone works too but a headset is nicer. I get tired from a few minutes of holding a phone, and with a headset it helps a phone call be less taxing. (Talking is taxing to me.)
    Valentijn and taniaaust1 like this.
  6. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,807
    Likes:
    907
    US
    If you have to go out without better circumstances (like a scooter so you can sit any time you want), please would you take some printed cards with you? It would help the shop owners and bystanders understand you faster. Have different cards typewritten, and you would only have to pick which card to give them. Now you have to wait until you get enough energy to speak to them. I have some of the problems you have so I know what it's like. I think you are better off with that way of communicating, so they don't call an ambulance on you or do something wrong like elevate your head.
    taniaaust1 likes this.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    ah thanks. I didnt know that. I will find out about that.
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    Oh wow.. why havent I ever thought of that!! I even forgot that most phones one can speaker. I'll check mine out to see if it does that.

    Thanks.. those here are soo helpful. I dont know where I'd be without all of you
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    I used to have some cards on which I had things written to refer people to back when I was still able to go out alone at times. Thanks you are right.. I will need to do something like that again if I start going out alone, otherwise ambulance does risk getting called.
  10. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    Situations update

    Many life issues still ongoing which is leaving me so drained that I arent even posting on this site much anymore (to drained to spend much time online, all my energy goes into struggling just to kind of live).

    A specialist appointment came up again last week, one which I'd already had to cancel out twice due to issues not being able to get there etc due to the lack of support. Anyway due to believing i was back to only one hour support out of the 5hrs I usually get as my support worker had quit on me, (she didnt show up twice running and the support agency didnt even call me to tell me what was going on, that's 3 times straight they havent let me know when someone isnt going to turn up). My boyfriend who would of been able to take me to this appointment ended up having to do other urgent things which I would of got the support worker to do, so I had to cancel the appointment for the THIRD time... Then to my further annoyance, a support worker showed up the next day (I was annoyed as the agency didnt tell me they'd had someone sorted out for me and hence had been so stressed out about the lack of important things being able to be covered).. so I could of gone to that appointment after all had I'd been informed that would of been someone to help me with the urgent stuff the next day and hence wouldnt have had to use my boyfriends help to do that instead.

    I dont know how to get around the communication issues with the support agency. I cant plan around them and what they are going to do for me if they dont bother phoning me when people arent going to be coming and when they are. My whole life due to the ME is carefully paced out and prioritised and if I think someone is coming or not, its worked around that and in this case due to lack of being told what was going on... I missed going to my specialist appointment which Ive been trying to get back to since the very start of this year.
    ..................................

    The new branch Im throu now due to the house move, of the Disability Service, had two of their workers home visit me today in regards of my complaint of them (not this branch but the old one but Im now not under them so its been passed on to the new branch). The two ladies who came were very nice, I was having trouble thou getting info across and having trouble answering their questions (I kept on getting distracted with other things I had to make sure I told them... after they left and when I was then thinking clearer, I realised how many of their questions I had unanswered). They have made some good suggestions of things I havent tried :) , so hopefully something there will work out. They are going to contact Red Cross Volunteer Service seeing what I told them I was previously told etc (that they cant tell the other clients not to wear perfumes in the car with me etc).

    They also i think may look into for me what services the council can offer (Im confused with this and dont know what else they were looking into there, I did tell them I'd tried there already but they dont deal with the transport of those who have chronic illnesses to appointments). They gave me a piece of paper with a contact number to ring who may also be able to offer me some support.. **sighs** after they left I realised I must of accidently given it back to them in with some info I gave them so now dont have it. We talked about various issues I have, hopefully I mentioned everything... I was going to prepare for this appointment yesterday but something else important came up and had to be done. (Ive had a shed which was brought for me left on strangers lawn for the past month and my brother-in-law yesterday finally able to bring it to my house and start setting it up and I was helping with that, so didnt manage to get prepared for the home visit today. I currently have a ton of gear sitting in someones trailer they need back which needs to go into a shed. Its never ending trying to get on top of things).

    They two ladies from Disability SA (my new branch) said they are going to ring my doctors and find out about ME. **sighs** seeing my specialists are CFS ones and not ME ones and not good at all about ME (one thinks CFS isnt even a disease but rathernsomething caused by other missed things going on in the body while the other one thinks ME and CFS is the same thing and doesnt even know that ME patients get tremors etc. So he's a CFS specialist and good with that but not good with ME). Im concerned these doctors may tell the states disability that I dont need a wheelchair due to their lack of understanding the severity of my condition. It doesnt help that I havent been able to get to them this year at all either due to my transport situation so dont even know Ive worsened due to the house move.

    I did thou also give the DisabilitySA people Dr Belinda Coytes phone number who is the only dr Ive managed to get to see this year but only seen her "once" so she hardly knows me at all... at least thou she can tell them I collapsed in her waiting room onto the floor.. too sick to even wait there for an appointment.

    Ones from disability suggested online shopping (which is now possible for me since Im now living in the city where this can happen) but that idea made me cry as that's often the only time in a week I get to leave my house and go out.. so its a big social aspect to me. I think I'd end up depressed if I didnt get to at least be able to leave my house once a week. So they then suggested a volunteer group which caters for the social aspect of things.. so we'll be looking into that more. Ive told them thou Im probably not up to a visitor every week unless it was for a very short time only (eg.. have a hot drink with me and leave right after kind of thing). Both me and them thought it a great idea if I can get to the local ME/CFS support group, there is one in my suburb which happens monthly, meets at a cafe which I havent been able to get to due to the transport issues.

    They also suggested I get the gov forms filled out which allows someone to accompany me places free of change. So I'll try to get a doctor to fill that in for me too. IF I can get to one and IF I can get one to fill it out.

    I dont think they at all understood why I dont have a new GP close by.. (I tried to explain to them just how hard a good GP is to find if one has CFS but dont think they quite understood). I previously went to over 35 GPs before I found a good one and hence just dont wnat to start blindily trying out GPs without recommendations from ME/CFS people. It would be stupidity and a real waste of my energy.

    They also suggested that I go and see this local counsellor who helps those who have Aspergers (I guess my Aspergers mayof been showing quite clearly while they were here.. I couldnt stay at all on track with their questions).. an idea I wasnt keen on when it was mentioned as I have such huge hassels with the ME and nearly all my issues are based around that. But after they left, I thought about it more and yes my Aspergers is also currently causing me issues (Im having Aspie meltdowns due to the stress the ME is putting me throu and should be seeing a counsellor due to those.. but then if my ME issues were being sorted out, I wouldnt be under the intense stress I are with just trying to live and wouldnt be having those Aspie meltdowns). I think I will check out the Aspergers counsellor still thou, I guess he/she will realise Im in some serious lifeshit and then may be able to support me getting more help for the ME (umm hopefully).
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    [​IMG]Helllish unhygienic situations due to lack of support. My kitchen right now.

    Today I rang the support agency as I had no idea what was going on and whether I'd be getting support today or not and if I was, how many support people would be coming. I got the normal response when I rang from Margarette about being short staffed there and she didnt know herself but would find out and ring me back, but as she's said that two times on the last two occassions Ive phoned trying to find out things going on and then doesnt ring me back I wasnt happy just hanging up the phone at that point esp when she wouldnt give me some idea of when she may ring back.. (Ive waited up to a week and a half at times for that phone call back which never came). When I wasnt hanging up and going on about it all, she finally ended up finding out what was going on for me and that I would have two people coming today (that meant I could then get the shopping I needed).

    As it had been over a week since I last was taken shopping, my list was longer then normal (two days longer made a difference) and I ended up having my first collapse at the supermarket since 2 support workers have been helping me with shopping which had been avoiding issues. **sighs** the common thing, right at the checkout so then in the way of others who wanted to use it.. the storeman of this store wasnt all that happy and wanted me moved but ended up leaving us alone when my support worker right explained I couldnt be moved till I was okay to at least sit up. (One of the support workers I have now is great.. the new one thou (first time she's had me) has a lot to learn and couldnt even tell when I was becoming ill like the other one can by noticing it by my face (do I go pale??) and the fact my legs start to shake (she said my arms were shaking too but I didnt notice that myself).

    Next week.. I have a specialist appointment when my support hours should be so hopefully the agency will be ok with finding another person for me on the other day (as the two I had today cant do it on that other day). My specialist thou didnt work at all on that other two days of the week so had no choice but to make it when I did). My support worker rang up and told the agency for me about my appointment as I was nervous about doing so as when I had to cancel out last time due to an appointment, the agency was like why did you make it when you have your support time (not very understanding about my situation so I was worried about having to tell them I have the same issue again next week).

    My dishes still havent been done (40 mins of my support time were wasted as I was on floor of the shop unable to sit).. its been 9 days now, we run out of support time today so now those dishes already awaiting 9 days will have to wait till next Tuesday. (Margarette at the support agency had no understanding of my situation as when I complained to her about things she goes "its probably like my house". umm I doubt VERY MUCH she would of had her dishes waiting to be done for over a week!! (I found her comment upsetting as it was trivalising my situation) and I guess her floors wouldnt be looking like mine are either (not washed for 3 weeks and a real mess esp since Im also clumsy and drop things and also have poison over the floors as Ive had such a serious issue with ants.. Im still being bitten at times by them while trying to sleep).

    I've attached photos here of the situations Im complaining about due to lack of support time.. this is what my floor was like last week,, its still hasnt had a proper wash (this isnt the workers fault at all but the amount of time Im getting). (eah sure.. im sure the one who mans the phone at Community Support Inc (my home support agency, house doesnt look like mine as she suggested it could.. stupid thing to say when she hasnt seen the state my house is ending up in. Her trivalisation of my situations is offensive). Are I the only one here who cries over the state of the house at times?? (im fussy but have to put up with that, either that or do more and end up far sicker then I are now, severely paying a price).
    [​IMG]
  12. madietodd

    madietodd Senior Member

    Messages:
    2,408
    Likes:
    1,580
    East Coast, USA
    Do you have an email address for this support agency? For other government agencies you deal with? I think it's time for them to get daily photos of your life situation. Have your support workers snap a picture of you sitting on the floor of the market. Send around a photo of your empty fridge. A daily shot of the dishes piling up. People are a bit scared of photos these days, as journalists can so easily make a story from them.

    Also, could you get your hands on a big plastic bucket - like the heavy ones we use over here to store all the junk we should really be throwing away? You could put it beside the sink and keep water and soap in it.......stick some of the dirty dishes in it. At least they'd be soaking.
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    [​IMG]oh i dont know what happened to the photo of my floor. I wanted that up as it would be good if a reporter got hold of my terrible situation. I'll post the picture of my floor again.

    Madie.. Ive found that if one leaves dishes in water too long it creates a very bad stench so dont do that. They tend to not stink so bad if one lets all the dishes and food on them dry out.

    It would be nice to be up to sending these depts daily updates of my situation.. but I just dont have the energy to be doing that. Ive only just found the energy to cook something simple and eat today (and its now 4.50pm). Ive been eatting only once a day of late due to lack of energy due to everything which needs doing.
    ...........

    On weekend, brother-in-law has been putting a shed up for me which I really badly need and in return told me he wanted me to do s home cooked dinner for my sister, him and their kids **sighs** people dont get how sick you are and are always wanting something in return if they do something for you. So I had no choice (if I wanted the shed done) but to have them over with all that dishes mess in the photo (actually by then it was worst).. so we had to use paper plates and plastic knives and forks. (my sister was nice and did some of the big pile of dishes from the photo).
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    Todays update

    Today Im supposed to have two support workers coming as its my shopping day but right now they are 5mins late so hopefully they are going to show. Im not ok enough to be able to go shopping today (over did it on weekend and still recovering from that) and besides I need them today to do other things which HAVE to get done today so I wont be getting shopping done today and I doubt very much we will have enough time to get even any housework done.. the dishes nor the floor. :(

    I currently have a covered trailer outside which is filled with stuff from my house move which is spare room stuff (stuff I use weekly or less) or shed stuff (some of my house stuff is still in there too), Ive been storing my gear in that trailer till it can be put where it should be but the person who owns the trailer has told me he needs to pick it up TONIGHT as he's moving house and picking up the keys for his house today.. this means that everything in that trailer now has to be piled up in my lounge room and Im practically useless to do anything except sit today.

    The new shed is now up (that was being worked on all weekend.. I helped my brother-in-law do that and with also having to cook them dinner and hence why Im out of action completely now) but shed isnt waterproofed yet (my boyfriend who would of helped me to get it waterproof, well he leaves for India on Friday so I have to wait for at least a month for his help again) . Its been very wet here so inside of shed is all wet so I cant put my stuff in there yet so that means I will now have my loungeroom out of use for at least a month.

    I have to laugh thou as I got a reply from disabilitySA to my complaint to the community services complaints commissioner, the sentence which made me laugh says "I am sorry to hear that your move from Strathalbyn to Seaford Rise was not a happy experience for you but I hope you are feeling settled into your new home"..

    yeah right.. how on earth are I to settle in this mess I have when there is too much to do and I cant do it and my main support person (my boyfriend) is about to leave for India for a while so things are about to get even worst. oh BTW.. it mentions no increase of my support hours. The ones who came and saw me wanted to wait and see how I go on the hours I usually get (when Im sicker then I previously was and also still dealing with a house move.. note I moved Jan 4th but still dealing with it all due to lack of enough help).
    .....

    update of todays update. I had the time wrong forgetting the support workers had made a later time so they ended up coming on time. They got the trailer all cleared out, so that is all in my lounge room now. One did my dishes, while the other vaccumed my floor (if I'd gone shopping today none of that would of got done).. they had no time thou to wash the floor so that remains terrible still.

    One thou also put away some clothes piled up over my floor (as the boxes I have my stuff in were borrowed and the person needed some back to pack for his move, so I ended up having to tip out a box of clothes and those clothes (all hanging stuff so a standing job which is an issue for me with the POTS), has then spent past two weeks over my floor. My room was impossible to vaccum without doing that.. and I have a new ant trail running by the side of my mattress which is on the floor so she vaccumed up the ants.
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
  16. LucyS

    LucyS

    Messages:
    29
    Likes:
    10
    Australia
    Hi Tania,
    Just curious as to how you got on with the Lyme testing and the results for Mycoplasmas & other infections - have you been back to see Dr Coyte yet? Just curious as contemplating going down the Lyme & coinfections pathway!
    Best wishes,
    taniaaust1 likes this.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    Quote from the offical letter which I posted in my last post.
    I'd like to point to everyone that I actually moved on the 4th Jan (and the other office of Disability Services who I already was a client of knew I was moving even before I moved. Yet it took till the 8th of May (FOUR MONTHS) and only AFTER a OFFICIAL complaint to the Commissioner of different gov dept (an aussie dr from this site also put in an OFFICAL complaint to them about my case too before I did trying to advocate for me but I was told that wasnt enough and I had to put in a written one as well), before things being followed up by the other office. This is even thou they say they deemed my circumstances as a priority.

    Is this truely how those who are disabled and desperately needing services.. classified as a priority usually treated? FOUR months wait even when one is already on their system? (or do ME/CFS patients have a so called different kind of priority treatment going on there???) . Im struggling to believe our states disability service would have their priority clients waiting so long. Normal treatment for priority or was I discriminated against once again by health people in this state?

    Those with ME/CFS in Sth Australia are very discriminated against.. I cant even get the heating and cooling rebate for those who have problems with heat thou I collapse and have gone unconscious in it as my states gov has deemed ME/CFS to be an illness which dont quality for it (I have letters here on that too when I tried to fight that).. even thou I also have POTS. There needs to be a group legal case for those who have severe ME/CFS held against my states gov. (Ive also had 2 smashed up cars when forced to drive when a Centrelink guy I kept coming across at Mt Barker, told me they'd cut my money completely off otherwise, when Centrelink refused to accept doctors sickness certificates back when I kept being knocked back for disability all due to discrimination).

    The only sorry Ive got is them saying they are sorry my move wasnt a happy one (and they just deny that someone in thier office advised me to move to the city where my doctors were, which I did and still cant get to nearly all my appointments).

    Someone here asked me if its okay to post on this thread or if not. Yes please post if you have comments as you guys here help me keep going on in my fight against all the unfairness and discrimination Im constantly facing.
    Valentijn likes this.
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    Update. Finally got back to one of my specialists after 3 cancellations with him this year due to my health issues (I'd been meant to have got back to him in early Jan)

    For those who havent read all my thread.. there are NO ME doctors in my state of Sth Australia, so Im stuck seeing the CFS variety of specialists, I had an appointment with brainy one of those, Dr David Mitchell yesterday (actually I think this one may not even believe in ME/CFS, from what I have gathered so far he just thinks the illness is caused by the person not having optium health).

    I'd lost the blood test forms he'd previously given me (I cant organise thou Im trying, my house not sorted from moving house dont help my organisation issues), so couldnt get the blood tests redone before I saw him like I'd meant to have done. I also had got confused and hadnt been raising my supplements he'd put me onto like he'd told me to do as I forgot the amounts (He had had us tape my appointment but the recording didnt work). He told me I should of rang him about those things (which was something I wasnt aware he'd be okay with as every other doctor Ive had has always told me to come back in but at least I know that now with him).

    He's told me not to raise the supplements now (methyl B12, active folate, D3 and also something for my adrenals) as he wants me reblood tested again first before doing that now and we'll go from there.

    He's not believing what Ive tired in the past re my crazily high insulin (pre diabetes issue) as wont believe that Ive already tried a diet like his before (I was on one nearly identical to what he wants me to do for a whole year but my blood test results had just gone 3 times worst not better). He says that cant be so. **sighs** what does one do when a doctor wont believe you've already tried something and stuck to it well.....

    Im well aware already of the following but there is nothing more I can do. He really pushed to me that I NEED to not be skipping meals like I do now (due to my crash and not being well enough to cook as it will make my insulin issues worst and I wont get better). He said to me "what's important to you?" Telling me I HAVE to be getting myself food and wouldnt listen to me when I said Im too ill to be cooking and doing that so hence I end up missing out on a lot of my meals (currently gone to eatting only 1-2 a day.

    Its hard on the diet he wants me back on .. one which didnt even work for me before!!.. as I cant just eat quick meals due to the carbs of them so making my food is very energy consuming). I just cant do it without making myself MUCH SICKER due to the over doing of things then and he's not understanding that (it wont help me to be using more of my limited energy, I'll just crash more. He said "just cook up a big pot of food"..without understanding just to do that I will need to not do something else and things here are already restricted down to the very lowest levels they can be. (Im only showering once or twice a week etc, only dressing when I need to leave the house etc. I cant cut back more to be doing his big pot of soup. Making sure I have regular meals currently is going to have negative consequences on me and will send me backwards).

    I asked him if he would fill in the form for the Disability Transport scheme, that the DisabilitySA people told me I should get a dr to fill out so to help me with my transport issues in getting to doctors... but he then said "get your other dr to fill it out when you go and see her". Thing is who knows when I will get to go and see that other doctor, . Ive been planning to get my test results from her by phone as I cant get there and wasnt going to follow up on lyme treatment unless my test has come back positive (and arent currently up to doing more eg heavy metal chelation which I'd go to her to do). Im sure the form also says one has to be seeing the doctor for 6mths for them to be able to fill them in and I havent been seeing her that long, Ive only seen her once not all that long back. (he thou would qualify to fill out the forms).

    Or maybe he told me to get her to do it not cause he was refusing to fill it out but rather cause I didnt have the form with me?.. DisabilitySA when they home visited had the form with them but didnt leave it at my house so I didnt have it with me at the time?? (or maybe his words where saying he wont fill in the form??). Im left not knowing what to think by his reply to get the other doctor to fill out the forms

    He mentioned a couple of hormones (precurser ones) which I havent trialed yet (cant remember what they are now but they are ones heapsreal often mentions) so it sounds like he may put me onto those once we've got my other supplements to his liking. Maybe those will help?? (I havent had any luck with all the other hormones Ive trialed).

    I wish he had his clinic window facing outside to his driveway... if he had, he may of seen me crawling away from his clinic as I couldnt even walk up his driveway as my legs were too weak to get up it and I ended up falling to the ground (using my cane chair to try to get up the driveway wasnt enough) and ended up crawling up some of his driveway on my hands and knees, my boyfriend ended up having to go and get the car as my crawling up a driveway was about to put more holes in my compression stockings.

    When will doctors get the reality of this illness :( Even with me telling him Im having a lot of collapses on floor of supermarket to the point I cant get up again.. he's still not getting how sick I am and when I say I cant do something I truely mean I cant. (he says he didnt know how one goes about getting a wheelchair and told me to contact my local council for help. So I'll try that).

    I dont know if his own brothers illness has influenced what he believes about ME/CFS?? (his brother is president of the ME/CFS society in SA), maybe his brother can push himself and not end up far worst in the long run?? but that just isnt the case for me. (Ive seen his brother looking like absolute crap after giving talks at ME/CFS society so know excertion does make his brother sick but I cant understand how Dr Michell isnt understanding that Im going to get worst if I do more then Im doing now, my past history over and over shows that).

    (Ive been up since 4am today.. as going to that appointment, the exertion from it, has affected my sleep, making it so I couldnt sleep well).
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,743
    Likes:
    4,617
    Sth Australia
    I havent got to see Dr Coyte again, she said she would of given me a home appointment if I lived closer to her. My lyme test results may come in today. The lab has done them so just now waiting on them to come via mail. I may even try to ring the lab today to see if they will give me the results over the phone.

    She's very nice, she actually rang me the other day as she was wondering how I was doing and wanted to know if I was going to go to that lyme awareness thing that other arranged. (I would of loved to have gone but would of needed someone to transport me and possibly take me home earlier as I wouldnt have lasted).
  20. k-AUS

    k-AUS

    Messages:
    50
    Likes:
    66
    australia
    Hi Tania,

    Sorry to hear you are having so much trouble at the moment. Have you considered doing "Meals on Wheels?" I just looked up the SA site and it seems that they accommodate food allergies and intolerances. Anyway, its just a thought!!!
    Good luck with the lyme test as well. :)

See more popular forum discussions.

Share This Page