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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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    Yesterdays Outting

    It went well, I so enjoyed it. Feeling the sand on my feet and being able to run my hands throu it etc. That was so awesome,, being able to feel a new atmosphere and get with family, that was so great too.

    My sister ..after worrying on phone about having to leave me to get a carpark.. she ended up leaving me there by myself just after we got there as she wanted to walk to McDonalds for lunch with her kids (they are McDonalds addicts). I couldnt walk that far (it was nowhere in our vicinity but right down a road elsewhere) so I was left behind. I had a moment anxiety there as its been soo very long since Ive been left in public anywhere by myself for any real length of time (other then someone drop me off somewhere while a car is being parked) so being left alone for 30-45mins with no one around in case I got into severe trouble, was a bit daunting.

    So while they were going to and at McDonalds.. I was on my knees on the ground waiting in a queue at a sausage sizzle stall (as I cant stand in a queue so was keeping my place in queue by crawling along on my knees) and then breached my diet by having sausages (which may of had sugar in them). I ate my sausages, then just layed on some cool concrete in the shade and went to sleep (lots of people were about but its easy for me to sleep anywhere as I get so exhausted when out) till my sister showed up again and woke me.

    She then went on the beach to watch the Australia Day childrens events (with her kids) on the sand. No shade there so I couldnt do that either (the day I think was a bit warmer then the weather report I'd previously read had said). I had to find another way to enjoy myself.. so I layed under a tree on some cool grass for an hour watching people get their photos taken and enjoying the Australia Day atmosphere.

    I then ended up seeing there was a good shade place on the beach..under a structure so was able to spend the rest of my time there (not close enough to the events thou to be able to watch those thou). From a distance, I watched people spilling roulette wheel and getting free prizes (coudnt see their facial expressions but stil able to watch the activity). I couldnt wait in that queue to get a free prize thou was "just" been in walking distance as there was no shade there for me to be able to wait in. (my sister and kids went and waited in the queue there but didnt tell me and got their free prices.. I would of got them to hold a place for me in the queue if I'd known at the time).

    (I ended later on in the day once my other sister and her children showed, ended up going over there as I'd realised I could use a table there that they were serving people from for shade. So my other sisters kids waited in the queue, her young children hold a spot for me (while I sat almost under the table .. I must of looked kind of stupid and the organiser did ask me what I was doing there). When it got to their turn to spin the wheel thou.. my brain was so not with it that I forgot why I had gone to that spot and hence didnt have a go at it and just watched them get their free prizes... only realised I'd missed my turn when we had walked away from the place.. .doh!!).

    I found I couldnt get to the sea as the 150m to it on the sand in the heat, I was unable to walk (I tried but only made it a third that distance before I had no choice but to head back as I wasnt going to make it there, crawled the last back of the way back). My sister and her kids were down the beach the world record so many floatin on a thong floaty event .. I had to be content with enjoying to play in the sand on the beach in the shade of the structure (which as I said was very enjoyable as it isnt something I get to usually at all do). So I wasnt too bothered about all the things I couldnt do and wasnt going to dwell that I couldnt make it to the water as I had wanted.


    My father then showed up and I got to talk to him in a way I hadnt for years. (it was quite healing to hold a conversation with my father) My other sister and her kids finally showed up so I then had their company.. her children trying to build sand castles (which didnt work, sand was too dry where I had to be).

    I was knackered by the end of the day of laying on beach in the sand talking to family members some of that time. Staggering by the time we went to leave (I had a scare at this time, I lost my balance going back to the car as a garbage truck crawled went by on a small lane very close to me..caught my balance only just in time to stop myself from falling under its big wheels right next to me, counting myself very lucky, it made me very aware of just how vulnerable and at risk I are when out).

    When Im out with my support workers who have been around me a bit to have seen how bad my falling is, if Im not being pushed in wheelchair, they place themselves between me and the traffic to protect me.. my family thou dont have a clue as they dont spend much time with me to realise the dangers I face

    Sister dropped her young son off and me off too as the family were all meeting somewhere else to continue their Australia day partying on but I was too unwell to do anything else (I'd got to the point where I was struggling to stay awake and starting to fall alseep no matter what I was doing).

    Anyway.. I'd had a great day and are so glad I went.
    ...............

    Thou I'd gone quite well during the time I spent out (nearly all the time spent laying in shade) till towards the end, by the time I got home I was in shocking state.. very dehydrated again, felt as bad as I did when I was in the hospital the other week. I know they would of given me another 2 bags of saline had I rang ambulance but this time I not only had POTS affecting me but also the ME exhaustion too.

    I felt so ill thou that I couldnt bear the thought of what happened last time Id been ambulanced there of then having to wait in the waiting room till I'd colllapsed in their toilets. So decided I wouldnt call ambulance (instead I rang my elderly friend and arranged for him to give me a 10am phone call this morning to make sure I was still alive and conscious.. I was in either I'll survive till tomorrow or die mode) and just then allowed myself to go to sleep which wasnt at all hard, I was struggling to stay awake anyway and kept falling asleep. I then slept 15hrs? I think it was (waking up multiple times in middle of night very thirsty and grabbing the drink by my bed).

    This morning I have some slight pain in my left kidney area (so no doubt my kidneys werent working right again).. kidney pain at about 2/10. Its settled down now thou and I'll just keep my fluid uptake up today and keep myself indoors resting. I kept hoping Im not about to ruin my kidneys.. I just couldnt bear the thought of having to wait in that hospital waiting room again.
     
    Last edited: Jan 26, 2014
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Glad you had a good day, Tania. Hope you're OK today.

    Maybe for next time you go somewhere like a beach you might think of getting a portable parasol to keep cool under?
     
    aimossy likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    I did have a beach umbrella.. but it didnt take it as there want much room in her car (there was 4 of us in the car.. and the kids had all thier beach stuff).
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    Im 80% back to how I are normally after that so almost recovered from that trip out (extra fatigue.. lots of falling asleep.. sleeping LOTS, not feeling as hydrated as normal..probably take me another couple of days to get back to my usual baseline). I'm taking it easy till then.
     
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  5. taniaaust1

    taniaaust1 Senior Member

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    My support agency (CSI) rang this morning to ask me if I wanted my usual 2 workers today for shopping, home care (doing dishes)... I told them yes I'd send one down to get my groceries (as I managed to get money out due to seeing sister on Australia Day). Margaret (the one at that agency Ive had lots of issues with to the point I dont trust anything she tells me)then told me that that couldnt be done as I have to go too and it went against CSI policy (which shocked my normal support workers I spoke to later that she said that as the support workers do get grocery for clients a lot without them being expected to go too).

    In the meantime I'd rang Disability services as they were the ones who suggested I do that in the first place to tell them the home support agency said no. Margaret messaged back to tell me she'd given me the wrong info and that it could be done after all..... so I got my shopping like that today (sent one of my workers down with my money to get it).
    ...........

    For future (for when Im caught out with no money on me and the heat), as suggested here by people, I rang and enquired about ordering shopping by phone.. turns out my local woolworths (seaford) doesnt do that. My local foodland thou does. To my shock they charge $17.50 for that phone order delivery service (Im only about 2 minutes down the road). I ended up ringing back and asking about phone orders and then getting support worker to pickup instead .. that's $12 if I can get shopping picked up (so thou expensive, its doable for emergencies).

    Im so glad that situation was solvable.
     
    Last edited: Jan 27, 2014
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It is so nice to read that you got knackered from doing something pleasant. :love::balloons: Did you have plenty to drink with you at the beach?
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Well done for being so persistent, but it shouldn't be necessary - these people are supposed to be there to help you! It sounds as bad as the attitude we so commonly encounter in the UK, with such people being known as 'jobsworths'. I'm sad to see that it happens in Oz too - I thought that the 'can do' attitude was more prevalent there.

    Those fees for phone orders do sound ridiculous. I wonder if there are any other places that will deliver cheaper. Online shops will often deliver free if you order more than a certain amount. I use the UK supermarket ASDA, and they will deliver for £3 (5.65 Aus $), minimum order only £25 (47.06 Aus $). Their prices are good too.

    I also use an online health store (Goodness Direct) that delivers free for orders over £35 (65.88 Aus $), with surcharges for chilled and frozen foods unless you order over £75 worth (141.14 Aus $).
     
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  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    If you gave the support worker your shopping list and had her get the items from the shelf, you wouldn't have to pay the store anything. It would take up more of your support time though. Decisions, decisions. :ill:
     
    aimossy likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    There are some shops that I frequent regularly that are happy to deliver to me free of charge, although I haven't availed myself of the offers except once when a pharmacy didn't have my med in stock when I was in the shop and I couldn't walk into town again so soon after that visit.

    The other shops that are happy to deliver are a health food shop and a pet supplies shop. I was offered free delivery by another pet supplies shop as well. A local second-hand goods shop is happy to deliver furniture for £5. They are all very helpful.

    It may be worth asking in a few other shops - some might be more helpful than the ones you have asked.
     
    aimossy likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    yeah .seeing I had cash to give her to take, that is what I ended up doing the other day.. actually had to do that for a couple of times to get things.

    Today.. fortunately its finally more reasonable temperatures here again. We had another day of 42degree Celicus a couple of days or so ago.. I got knocked around by that again and if I hadnt further raised the Florinef.. I would of ended up in hospital again (I ended up quite ill still on the increased dose of 2 pills on Florinef).

    So now Im taking 2 and a half pills of it. (I hate how I have no doctor managing my meds and the hospital doc told me I'd have to sort out it out myself).
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    nods yeah.. I plan to do that. (no pet supplies shop or hardware in my suburb thou).

    My local pharmacy delivers meds free if one is housebound and Ive had them do that before.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    letter from disability 4th Feb.jpg Official knockbacks in letter.. looks like the couple of specialist appointments its taken over a year for them to agree too.. are basically all the medical help I'll be getting.

    Finally got some things Ive been told on phone only in past in writing.. eg that thou a ME/CFS specialist applied to my states disability saying I needed support for having severe ME/CFS and then I was given disability support (and I had other doctors backing up I had ME/CFS). that they purposely ignored the ME/CFS diagnoses and gave me disability support based on my very MILD Aspergers instead (this happened a couple of years ago or more and Ive been fighting to get my ME/CFS needs met ever since with them ignoring me and the doctors who contacted them re me.

    If this isnt evidence of discrimination of our states disability services.. what is? This is why they refuse to meet my ME/CFS needs cause they do not recognise ME/CFS as being a disability thing in Sth Australia. (just like we are discriminated against in this state and I cant get the heating and cooling rebate either like other states of Australia for ME/CFS and POTS (I also have an offical letter supporting that they dont see ME/CFS as having issues with heat, so NOONE here with this illness can get the rebate we should be entitled too).

    Anyway..he're's the latest letter proving Im being discriminated by the state (since when is mild Aspergers more disabiling then severe ME/CFS?). I sooo need a lawyer taking this state to court over disability discrimation.

    I still have the equal opportunity investigating but Im so angry at how badly Ive been treated and how that has caused the ME/CFS to get worst (Ive been worst for 12mths due to disability services discrimination towards ME/CFS and them not giving me the help I'd get if I had a disability they were familiar with) that Im wanting at this point to sue the state for discrimination.

    Does anyone in SA know of a good lawyer who understands ME?
     
  13. taniaaust1

    taniaaust1 Senior Member

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    **the more I think about it and what they've put me throu, the more angry I feel**
    Some quotes from the letter
    They should add to that.. unless they have ME/CFS
    .....

    Well Helene (my case worker for that department) has known I had serious health issues for a YEAR (and before that I was dealing with ANOTHER from another office of theirs who was case managing me and ignoring the fact I needed wheelchair etc) and that I desperately needed to get back to my doctors since start of last year.. is that saying they only "just" found out???

    That is bullshit. Helene works for them and is the person they had dealing with me.. and now its like they are trying to distance themselves from it. So they've only JUST decided to take interest in my case? They cant plead ignorance as Ive had the higher up orgs involved who tried to get them to sort out getting me to appointments etc long before this. (someone at this website even put in an offical complaint over my case.. no doubt Helene superiors KNEW about my case as offical complaints about the disability services from the higher up org would of gone higher up then her). So those superiors cant stop that innocent act they are putting on as if they only just heard Im sick. ...and that they only just heard from Helene.

    It looks like they have only choosen to accept I have heath issues is cause I had to be ambulanced to hospital and given a drip the other day!! (they choose to ignore all my abnormal test results.. the local GP telling them (2 letters and a phone call I think it was) I need to be under specialists etc etc as she didnt know enough to treat my conditions before that occured).. and they ignored everything else. I guess its easy to ignore someone with ME/CFS till they end up in hospital due to it.

    "I have approved some limited once of funding so you can get some further assessment."

    further assessement? My specialists know what is wrong with me.. there is no new fancy diagnoses. I just need the support I should be getting for MY DISABILITY AND MEDICAL CONDITIONS if I werent being discriminated against and support so I can get to my specialists .. not just ONCE PER YEAR IF THAT.

    This is soo bullshit.. state disability service wont believe ME/CFS is a serious disease. The only way they are going to start not ignoring all those who have ME/CFS is to sue their ass off. I feel so angry at their ignorance on such a serious disease and their lack of helping people who have it (rather they choose to put people with this into nightmare situations of having to fight the states disability system for years).
    .................

    They've given me 2 appointments with my local GP and expect her to coordinate. How will Dr McIntyre (who's a young GP registar) deal with my care and cooridinate my case? She only took me on in the first place on the condition Im under my specialists as she doesnt know enough about severe ME/CFS and all the other unusual medical conditions I have to be comfortable trying to treat it. My specialists cant monitor me throu the GP and she's completely at loss on how to help me (other then do letters to the disability services as she has been doing, telling them they need to do more for me). They disability service is being ridiculous. What about my physio and all other specialists I havent been able to get too.
    .......

    I notice they cant even get my name right "Tania Smith" .. When my name is Tanya Selth. At least it says "Dear Ms Selth". At least they got my address right and I got the letter.
     
    Last edited: Feb 4, 2014
  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It is far from perfect, but at least you are going to get to see a couple of your specialists. I am wondering which one is going to get the "1 appointment for any follow up tests".
     
  15. taniaaust1

    taniaaust1 Senior Member

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    Yeah.. that is ridiculous in itself as I know that both of my specialists will be wanting to follow up for the different fields they specialise in till things with me are better under control (one an allgerist dealing with my severe issues to having high insulin and my allergy issues) and the other a "CFS" specialist (sighs.. who believes in the PACE trial but who does try to treat ME/CFS symptoms and is familiar with POTS).
     
  16. taniaaust1

    taniaaust1 Senior Member

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    Update

    I havent been here for a few days due to the heat knocking me about.. Ive been so exhausted both physically and mentally. Once again food issues.. Ive been days now without vegetables which are the staple thing of my diet seeing I cant eat a lot of other things.

    I didnt have money on me (forgot to get enough out) in case it was too hot to shop myself.. so once again my workers couldnt go and get my shopping for me. So I tried the thing I looked into the other day.. phone ordering my groceries and then getting a worker to pick up from my local Foodland. Well it turned out that expensive option wasnt suitable anyway... they wanted CASH and told me they cant use credit card with that. I explained my situation to them (I was in tears by this point when once again I something I thought was sorted out as an option, turned out wasnt an option afterall.. Im sick of feeling like Im being kicked in the teeth) and they went to speak to their manager to ask if they could use my credit card seeing I was homebound. The Managers answer thou was NO.. its their rule.. "cash" for that service.

    (For those who havent read my previous posts, I cant order my shopping online.. as my computer is old and slow to the point I cant get many sites online.. including those of the supermarkets with all pictures on same page like the shop order ones have).

    So anyway..once again without vegetables and other foods for days cause of heat not enabling me to get my shopping and the stupid disability service not allowing my workers to take my bankcard to get my stuff for me. (I was once again crying over this situation this morning.. hellish time past week with the heat without all this extra stress).

    I havent been coping well either.. forgetting and confusing everything (which is worst when its hot). I dont think Ive mentioned it but the other week I forgot to cancel out a medical appointment I had as it was too hot for me to be able to go (I cancelled out the support service for it but then forgot to cancel the appointment itself). We also had to change my shopping support and rearrange times and days over and over this week.. trying to get a cool time but then it was still too hot eg the new agency is great and trying to do all it can to be able to help me including it rang and got a special time at 7.00pm when we were hoping it would be cooler to take me shopping but it turned out it was still 38 degrees celicus!! so I still couldnt go.

    Due to having to change things so much.. I got confused and ended up double booking things (a home appointment with DisabilitySA ended up being put when I need to be taken shoppiing)... so this morning, I had to ring up and cancel out the DisabilitySA appointment which was supposed to be tomorow (I had with the temporary person on my case.. Sue).

    In the past week (before I run out of food).. I was doing my normal and burnt the meals I was trying to cook (burnt all the last of my vegetables).. As it was too hot for support worker to take me shopping. I had one help me make up a pot of food (curried meat).. which I ended up forgetting while it was still cooking after she left..so I burnt that too. (I would of had several extra days of food if I hadnt burnt everything!!).

    I had a stove accident in the past week and ruined non food things.. all melted. While worker was here doing my dishes I went to put something away and as she was in the way of the cupboard (and my whole other cupboard was covered in ant poison again.. due to my bad ant issue) so I stuck the things (my BP monitor and my plastic food trays) temporary on the stove. I then later after she left.. I cooked.. forgotting I had things sitting all over the stove. My plastic food tray melted over stove and down into it.

    To my horror my very expensive BP monitor (which can still take my BP when my heart is doing arrthymia stuff) which was in its box sitting on stove.. I thought I'd melted too.. I was in tears thinking I'd done so when I saw my breakfast tray severely melted but thank God that turned out to be okay. **sighs.. Im still a fire danger.. I really probably shouldnt be using stoves** It sucks as I love to cook but find it very stressful as Im always concerned about burning my food as Im ending up wasting so much.

    Im going to do washing today.. anything job I previously didnt mind but now have been avoiding as Im often having issues there too. Last two loads I ended up washing 7 times all up as I'd wash and then forgot I'd washed and stil had clothes in the machine till a couple of days later and by then they smelt in this weather and had to be washed again..and then I'd once again forget them.. so this was happening over and over. IM CREATING SO MUCH EXTRA WORK FOR MYSELF!! with my memory issues, its frustrating (and upsetting when I have very little energy or time I can be on my feet to start with).

    Guys may want to skip the next paragraph

    Ive been having issues with my period too.. going to the loo.. flushing tampon down there (I know I shouldnt do that.. Ive never blocked a toilet yet thou) but then forgetting to put another in and not realising it til Ive made a mess over my clothes and chair or got blood all over my bed. ... right now my sheets are a mess..covered in dried blood from when I did that the other day but then wasnt well enough to clean up the mess with the heat .. and on top of that.. I dropped a bowl of food over my sheets a few days or so back. (another thing Im going to clean up later today..Ive been sleeping in that mess of very soiled sheet.. awaiting a cooler day (today!) so Im okay to be cleaning things up again. Im leaving the cleaning till tonight as if I do it now I know I'll be in bed the rest of the day... and Im going to enjoy today after a hellish hot week.

    Today will be shower day too.. I smell.. with my energy so very low and feeling dreadfully burnt out this week in the heat I wasnt showering.
    ..............

    Today I heard again from my Disability Advocacy and Complaints service worker (Leatha Regina Henry) who phoned.. telling me she hadnt put in the application for us to have a meeting with DisabilitySA yet due to the hot weather (as it means I'd have to be taken out of the house)....she's the one who cant come to me as she's in an electric wheelchair and I dont have any ramp area into my house (my physio thou has thou put in an application for that for me and my wheelchair). (My condition and the problems around it.. is holding everything up..summer is a terrible time for things around me to be sorted out).

    She's posted me more forms to fill out and wants me to photocopy the latest hospital letter and DisabilitySA letter and get them back to her (I'll get my "CFS" Dr Del Fante to fax them throu to her on Monday when the weather is supposed to be cool enough for me. So FINALLY I should be getting to him, didnt get to be able to get to him all last year).

    Im also feeling anxious as I know thou Dr Del Fante supported me having a wheelchair (I think? he did, I was told by Disability services Helene, 3 of my doctors did). Im growing concerned about him doing the report which is needed for DisabilitySA as Dr DelFante believes CFS and ME are the same thing and has told me that when I asked in the past.. and he is supportive of the PACE trial and GET. Some of my ME symptoms in the past he's said "that cant be CFS" eg when I told him I get tremors and spasms at times.. thou he's a CFS specialist, he's not very aware of ME and its symptoms. So its possible he wont back me up that some of the things Im saying are ME/CFS.

    I also do not know his thoughts on multiple chemical sensitivity at all and know many doctors dont believe in that being like real. Anyway.. Im trying not to worry till I see what he has to say in a report (Im sure he realises Im very sick as thou he believes in the PACE trial.. he only ever mentioned that once to me and never did again.. he's never pushed me to try to do more or exercise).
     
    Last edited: Feb 12, 2014
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    When it is very hot, could your worker take you to get cash, then take you back home and go do the shopping herself?
     
  18. taniaaust1

    taniaaust1 Senior Member

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    Hi, its actually cool inside the shops but my issue is I collapse (to the point I cant even stay seated in a wheelchair) just going from the house to the shop or bank.. just going from a place to the car or back to the car is a big issue for me when its hot. Its like the heat affects on my body are almost instant.. Ive collapsed within 10 seconds of going out in heat.

    Actually once the affect was almost instant.. like my body went into some kind of shock the moment a lot of heat hit my skin (like my body couldnt handle the sudden dilation of my blood vessels.. those open with heat). I can end up slumped over in the wheelchair and about to pass out in it. I end up nearly having a seizure in it (start shaking etc) and end up having to get out and lay (or I pass out). I end up in serious trouble (I need to have someone where it is possible for me to lay down when needed at all times even when it isnt hot). Its horrible.. and the feeling I get when this knowing Im about to pass out (and sometimes loosing my vision too with it).. I go into a panic due to a desperate need to lay down or I'll fall down.

    Once I went down on hot pavement and nearly burnt my legs (fortunately that occassion I married to roll myself into the shade of a phone box close to me (it still hurt.. that pavement was HOT.. my legs were left red). A support worker isnt supposed to pick me up if something happens (due to the occupational health and safety stuff). The one dragged me to a safe place recently could of got into work trouble for that.

    Its not sensible to have me out for any length of time at all with the degree the heat affects me (and at that speed it does). Im to the point now after going throu so much, that Im now scared to leave my house even with someone when its hot.
     
    Last edited: Feb 16, 2014
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  19. taniaaust1

    taniaaust1 Senior Member

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    Im very nervous still about tomorrows CFS specialist appointment.. how is he going to write a full report from seeing me for 20 mins in a year. It would take HOURS to explain to him what has been going on. He's never understand at all previously about how much I was struggling at home. He's see me in his office with my cane chair and a quick trip there (taken by another) I'd look fine at the time. Fuck.. how on earth will he write about all my issues from seeing me in 20mins. Im in panic mode about it and dont even want to write them down as it upsets me a lot thinking about it all...so right now Ive gone into avoidance and really do not want to dwell on it at all. (I know once I start lists like of all my issues and thinking of them, that it ends up making me cry.. I feel so stressed just thinking about it here).
    ....

    I got sent on Friday a form from the Disability Advocacy and Compliants service.. the Individual Advocacy Plan they've drawn up. Kind of scary as it only addresses the 3 main issues and not that Ive had constant discrimination and issues with DisabilitySA over so many things.. it seeks to address the three issues but I fear even if addressed, I'll still be getting issues due to discrimination with DisabilitySA every time another issue comes up. How can DisabilitySA be expected to be my caseworker when they are discriminatory against ME/CFS people..

    I was hoping the disability advocacy place could continue to be my advocate for all the issues I get but it doesnt work like that.. I will need to apply each time for each new thing even with the same dept and probably end up with a different worker involved each time!. Not just that.. one ends up having to go back onto a waiting list after one applies each time as their service is too full (last time I had months wait before a worker was allocated to me.. and the two times before that, they never got back to me to allocate me a worker).

    Anyway..this latest form Ive been told to sign lists me wanting additional ongoing personal support, assistance to doctors and also addresses that my support workers arent allowed to take me outside of seaford, my local area to get things which cant be found at my closest shop (all that is good).

    It thou goes on to say "Once everything that can be done to achieve the outcomes has been done and/or one of the parties state that no more can be done to achieve the above outlined outcome the file will be closed".

    I take that part they want me to sign to mean that DisabilitySA can simply just tell them a bullshit reply (due to the discrimintion they've been giving) that they can do nothing for me eg transport to doctors or whatever and that means my case will then be just dropped just cause they've simply said that. DisabilitySA has already have send me a letter in the past saying they cant help me more due to they have a lack of funding so all they have to do is say that..and possibly get away with not giving me the help Im needing (thou others I know they give support for up to 60 hrs per week depending on need).. sighs but in their eyes.. ME/CFS doesnt give a need of help!! So they wont even give an HOUR support for that!

    I hope Im wrong and that they wont so blantantly discriminated against me to the advocate but nothing would surprise me at this point esp since the other complaint place said my issues didnt come under them as they ended up saying they only dealt with human rights abuses (which I thought some of it was!!).. (after they lead me on to think they were going to do something to sort out disabilitySA even telling me they were going to issue some special order onto them if they didnt sort the matter out..but when DisabilitySA didnt comply, they dropped the case).

    Fingers crossed all will go well tomorrow with the CFS.. sighs..yeah CFS doctor. I wish an ME doctor would get involved in my case.. maybe I should start trying to approach some interstate ones seeing there isnt no ME doctors in my state.
     
    Last edited: Feb 16, 2014
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  20. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Dr Del Fantes letter to DisabilitySA.jpg Todays Doctors appointment

    The new support worker who came to pick me up was nice. I screwed up things as per normal thou due to my brain.

    We had wheelchair troubles again as I forgot to bring the instructions with me on how to set it up and I can never myself remember).. so after the worker was struggling to put it up for a while, I rang the physio in a panic for advice on how to (by then we were running late to get to my appointment!). Then once she got it together.. turned out that I'd forgotten the CFS specialist I had been taken to to see had moved so we were told we were at the wrong place (so we ended up arranging late by the time we found the right place.. thank God he's only moved onto the next road)..and the poor worker was paniced. I hope todays experience with me hasnt put her off. The physio thou gave some good advice on the phone and told me to attach the instructions to the wheelchair so I wont forgot them in future.

    Doctors appointment today.. I dont know how I feel about it. I only got A QUARTER throu the list of things I needed to speak to him about and wasted a lot of the appointment discussing my issues with DisabilitySA. Doctor Del Fante also seemed to be in a rush and in fact did rush away as he had to be somewhere else, as soon as he finished the appointment.

    I also had communication issues.. with so many problems and not seeing him over 12mths, I didnt know where to start as so much has happened since I saw him last so when I got there so just sat their like dumb at first..completely feeling confused.. hoping he'd start asking me questions to help me know where to start. In the end he said something like "speak"... so I then started reading the first thing from my list. (I ended up late last night getting over my anxiety and writing a list of the issues). I had such a pile of important test results with me which he hadnt seen before but got so overwhelmed trying to find things in the pile that things there didnt go to plan either and he wasnt shown most of the stuff I took.

    Then to top it off.. thou I'd had found the letter from the hospital and also the test which had shown my kidneys werent working properly when I was at the hospital, somehow thou I'd put it into the pile to take before I'd left home.. it still somehow got left behind. So I then didnt have the most important thing with me. So once again.. I struggled to supply one of my doctors with the info he should of been given due to my brain issues.

    When I told him of the situation Ive been having with DisabilitySA, he too thought they are fobbing me off and he said he thought they are doing that as they are going bankrupt (he said that after I showed him the letter from them denying me food prep support), so said it was useless trying to get support throu them (so obviously he is having trouble understanding why they arent helping me either and that's his theory on it), he told me contact another place.. find it by googling "Disabilily care Australia" and contacting them to see if they could help me with my support needs. So Im going to try that in the next couple of days.

    I told him that DisabilitySA was expecting a report from him seeing they had about drs doing reports written on the bottom of the letter they'd sent me. He was rather confused about that as he's done them already a report... (note-which they have ignored just like they've ignored the letters from at least one other doctor telling them I need more support and ignored phone calls too from drs). He ended up writing me another report to give them (which is probably the same as the first one).. I'll attach a copy here

    Anyway.. by the time we'd gone throu just those things (and he also had his nurse take my blood) and I'd got a new prescription for Florinef from him, we were out of time. So soo much didnt get mentioned at all!!! So things as far as that goes were as bad as I thought.. havent been in so long so not enough time to go throu all the MAJOR STUFF.

    ps.. **sigh** over that part in the report about "severe FATIGUE" .. when will doctors understand that it isnt about fatigue but about MALAISE and other symptoms too, it isnt "fatigue" which keeps me homebound but the other ME/CFS symptoms. Anyway as Ive posted before in my posts.. as far as what the physio thinks.. she was shocked with the severity my condition is affecting me that Im not getting more support from DisabilitySA and did have quite a talk to Helene when she was my disabilitySA caseworker over that in the past.

    I think the disability service doesnt understand what CFS is and hence not aware that its more then about just having headaches, not sleeping well and fatigue... so unfortunately when they look at these reports, they dont understand what this means and that I have a complex illness with LOTS of different symptoms more then just those things. I really need a doctor to go and list all my ME/CFS symptoms due to the naivity of the disability services but unfortunately doctors just dont tend to do that. The disability service NEEDS to educate themselves about both ME and about CFS.

    I just noticed.. we didnt get my medications updated as we ran out of time so all that on his letter with dosages is currently wrong. I also notice that my birthdate is wrong too on the letter.

    I didnt get the form from disability compliants faxed from the drs today like I was supposed to do as I didnt get time to ring up before my doctors appointment to query the part of the form which has me confused (I struggled to get ready this morning and was still trying to get ready when the support worker arrived to take me to the dr).
     
    Last edited: Feb 17, 2014
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