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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. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Hi, Tania, I was wondering how you were. I’m glad it was your computer that was down and not you.

    It sounds like the researchers are referring you to some good specialists. Is orthostatic hypertension treated any differently in people with ME than in people without? I was going to suggest that you consider not telling the specialist that you have ME, but I see that the appointment is today.

    I think you need to stop stressing so much. The physio is going to tell DisabilitySA that you need more help. The social worker says DisablitySA is responsible for getting you to your specialist appointments. The BP specialist found your case very interesting. You already know that the eye specialists specializes in unusual cases. It seems to me that things are looking up for you. :thumbsup:

    Did you tell the BP specialist that you have ME? If so, how did he respond?
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    The tachycardia might be in response to the other whacky things blood pressure does. I do get orthostatic tachycardia sometimes, but it's always because my pulse pressure and/or oxygen is plummeting. Hence I don't always get the tachycadia, even when experience orthostatic intolerance, so I'm not sure if the tachycardia could be said to be directly triggered by standing up, or if it's just a reaction to other orthostatic problems.

    Hence your "POTS" might simply be a symptom of a different orthostatic disorder, rather than a disorder unto itself.
     
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  3. Valentijn

    Valentijn Activity Level: 3

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    Actually it's probably very important to mention that you have ME/CFS. The primary treatment for many types of autonomic dysfunction is to build up muscle tone and use muscle clenching to compensate. This does work briefly for ME/CFS patients, and then triggers a crash :p
     
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  4. taniaaust1

    taniaaust1

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    As my dysautonomia issues are a direct symptom of my ME/CFS and due to it. I really had to mention it. I also took in Dr David Bells great article of the autonomic dysfunctions found in ME/CFS to help point out I have all of them and that's not at all weird.

    I dont there is a hospital in the whole of the city who dont know I have ME/CFS anyway as Ive been to all the big ones for my issues many times over the years. It would of been on that hospital's notes from seeing CFS specialist there previously (he's retired now) when I was in research study hospital was involved in 7 years ago.
    ..

    I actually sure I had the POTS for years before I developed the orthostatic hypertension (my BP was originally low and commonly hypotension not just when standing) . When I get the POTS, my BP seems to be usually be normal. (I usually go one way or the other, only once have I seen them both wacking out together). The POTS heart racing seems to help to prevent the BP issue and visa versa.

    Yeah but that doesnt mean that DisabilitySA is going to sort out things for me.. this was just one appointment (one they also expected to get something out of.. a report) of what will be at least a few, at the social workers hospital. I have other specialists all over the place which are important part of my whole treatment plan and management of my conditions that I still need to get too. Others (including my doctors) have contacted DisabilitySA before over me really needing transport to go and see them for treatment of my medical issues, but they were ignored.

    My previous application for transport was just knocked back the other week even with drs telling them I needed to see them.. and I'd been fighting for the transport situation to be sorted out even before I moved to Adelaide at start of year (it may be even 2 years since Ive been fighting for transport support). There is every chance the same fate could happen to the next and who knows how long it will take this time to see the result seeing it took almost 7mths from my complaint about them to the HSCSS to get the result..to get the knockback of the last. Its like they just stall and stall. Maybe they helped me to that appointment so the situation eases off their back a little and they then can stall longer (they can now tell the HSCSS that they helped me get to an appointment)

    Its a really terrible situation. The only ones who can pull Disability into line if they put down a heavy foot is the HSCSS (the overlooking gov org) and they are about to start their investigation, they requested and I sent all my medical reports to them the other day (who knows how long an investigation may take.. a dr and also me, first put our complaint in to them over DisabilitySA back in April). In the meantime my condition worsens cause Im over doing things and have too much stress.

    .
     
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  5. taniaaust1

    taniaaust1

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    I got glass in my foot again last week due to support workers not having enough time to do my floors, they come.. pick up glass off my floor (at times I havent done already, its only occassionaly I still have the glass from things Ive dropped still all there) but then dont vaccum, no time, (last week we didnt even have enough time to get all my grocery shopping cause I was quite sick when we went shopping.. I was on the supermarket floor twice.. unable to stay sitted in wheelchair)..

    It's the Second time Ive had glass in my foot this year due glass only being picked up and not vaccummed.. third time thou all up this year thou Ive had glass in my foot due to my floors). Its a hazzard. Im dropping things a lot and a floor needs a vaccum after having smashed glass over it.

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

    The constant issues I have with agency workers continues . What I didnt mention the other day as I was only wanting to mention the positive of getting to the appointment and how the dr went.. was that the one taking me to the appointment on Friday (to the specialist), showed up with air freshener in her car and then denied it was perfume in it.

    I didnt know what to think as I could clearly tell the car was filled with chemical and whatever was in there was not natural. I stupidly ended up believing her and started to think I was reacting to her body soap or shampoo or something, so I had to go to the appointment with the window right down which was cold (I spent the whole trip widing it partly up as I was cold and then back down due to the chemical there).

    It was an ambi-pur. I didnt react to it badly with the windows right door (but it was enough that it was still uncomfortable to me and if exposed to it a second time Im likely to rect to it worst) and due to her insistance it wasnt perfume.. I researched it as soon as I got home. It turns out Greenpeace has a report on it and it does contain a hazardess chemical in it.. and at the supermarkets .. perfume IS listed on the ingredients.

    So Ive had to write yet another letter to the support agency CSI to ONCE AGAIN tell them its happened again.. I only talked to Adam their complaints person again only last week over this kind of stuff as was treated like he didnt believe me it kepts going on with their workers.

    Here's my letter ..Im about to send via registered mail when my usual support worker gets here. Having to do constant letters puts a lot of stress onto me .. without all the chemical hits Im getting which shouldnt be happening which I know are very bad for my health and I HATE feeling worst due to them. I cant keep up with the letters I ned to do in response to DisabilitySA too and are meant to be sorting out others but once again Im having to deal with support agency . (my tone in this letter isnt nice as Im fed up with them not sorting it out and further puting strain on my health).

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

    I hope my issues with the depts get sorted soon but its never ending issues.
     
  6. taniaaust1

    taniaaust1

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    :( the hospital rang me yesterday and informed me I have to go and see yet another dr before to consider if I "should" have a tilt table test done or not. ***sighs 7 years and counting with trying to get a tilt table test done**

    The dr I saw at the hospital the other day (the same hospital which does the tilt table tests) with I was refered to see for my POTS etc and the need to have a tilt table test done.. all which my GP had said in the referal.. who I saw and who him and his nurse did a heap of BP/heart readings on me (my dysautonomia was giveing out some bad readings) and who then said he was sending me for the test.. well that isnt good enough for the hospital.

    They said the referal for the test needed to come from a different dr eg a neurologist or heart specialist. This is CRAZY!! (Ive seen 2-3 heart specialists in the past and they didnt even know wht POTS was!). The dr I saw at their hospital the other day who I'd been refered to for the POTS and my orthostatic BP, wanted me to have the tilt table and then go back to him so he could help me. He was very interested in my case. Why isnt this good enough for them to allow me to have the test done!! (is it cause of my CFS diagnoses)

    Crazy, crazy system expectually when I dont have transport. To make the sting of this even worst. On the letter I just got about it too it says to ring if I have transport issues as they will provide transport. So I did only to be told that the free transport is only for the veterns who have a gold card.
     
  7. taniaaust1

    taniaaust1

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    Adam from the support agency has rang me today. He said they dont think they can accommindate my needs. He went into defense too over the worker with the ambi pur in the car saying that when he was in her car "he couldnt smell it and its old so you couldnt have reacted to that". He then made it sound as if it was going to be unreasonable keeping chemicals out of cars.

    Thing is almost every single time (except when workers werent told not to wear perfume etc) my issues have been just with air fresheners in the cars Ive been transported in... usually so called "dead" ones.. so called dead as the other person cant smell it. Why on earth cant they just make sure the workers also dont have these "dead" ones in their cars and then there is unlikely to be issues (unless they wore chemcial deodourant or perfume which they seem much better at following that rule when its put on them).

    I rang DisabilitySA yesterday as soon as I found out that I have another hospital appointment on Wednesday (the one Im annoyed over above.. having to see yet another person to see if I can have a tilt table done!!! completely unnecessary.). Helene was away thou and I was told she'd be there today but today Adam (CSI) just told me that Helene is away today as he tried to call DisabilitySA over my case and the issues I have with his agency over the chemical air fresheners.

    I think I will end up missing that hospital appointment.
    .................

    I spoke to Helene I think it was a couple of days ago (she was ringing me back from day before) and told her I really want to change support agencies as I know my current one isnt suitable at all, they are way too unorganised. Often messages even when people are there and I give them directly to someone often havent been passed on, emails of mine to them have been lost, messages left on the answering machine.. go missing (they've blamed the answering machine a couple of times).

    The other week to my support agency (CSI ..Community Support Incorp) re the issues, I held on the phone for about 30mins waiting for it to be answered and not trusting them enough anymore to leave a message, till I got a sore arm and had to hang up and go to bed (Im meant to let them know whenever Im encountering issues, its impossible). This all along with all the other issues Ive had with that agency.

    Helene (DisabilitySA and is meant to be my case worker now) wasnt listening to me about the perfumes and the fact the agency hasnt tried hard to solve the issue and was just going... well maybe their policies they dont have to do that. Fortunately she had called when 2 of my support workers were with me and seeing she wouldnt listen to the seriousness of my issue, I was able to put one of them onto the phone to tell Helene just how bad Im affected by this. (I can actually collapse at times due to perfumes!!)

    Marie spoke up about her own agency and told Helene how she wasnt told by them not to wear perfumes the first time she came, neither was Julie my other worker who was there with me (I hadnt known that till Marie told Helene). Anyway..both my regular workers can support what Im saying..but Adam from CSI isnt believing me and hasnt rung them to ask .. and keeps saying the people being sent out to me have been told. There's been so many workers over time who havent been thou (it was only a few weeks ago that a new one I had for transport told me she was only told about perfumes but not about air fresheners!).

    Since I started with this agency its been one battle.
     
    Last edited: Nov 13, 2013
  8. taniaaust1

    taniaaust1

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    I forgot to say that Im about to loose Julie, the support worker who covers the most of my care and who has been with me the longest.

    So this is adding to my stress as the agency now just doesnt need to find replacement for just one new worker for me to cover the one I basicaly sacked the other week (over making me be out in the heat and hyjacking me in the wheelchair one coud say when I was too sick to excape her) but now one for my favourite support worker too.

    Julie has been so great as she has a husband with brain injury so she really understands the kinds of things I find difficult when Im up and about doing things, she also can tell just by the colour shift in my face when Im about to collapse, she's observant and hardly ever misses it when Im about to.

    She was needing surgery and its been brought ahead and after the surgery, she wont be allowed to work for 4 months, so I loose her next week due to that (happy for her as it will mean that she's not in constant pain any more but its soo bad for me). Hence why at this point it is the best time for me to change agencies (I hadnt asked to change agencies before now due to Julie and how great she is as a support worker.. she's got great wheelchair skills too and dont run me into peoples legs like the other worker used to every single time we were out).

    Im hoping to convince Julie when she's able to work again, to get work at whatever agency I end up in. (all the CSI workers get annoyed at CSI due to the lack of organisation.. I hear so many complaints. They were even short $400 on Julies pay this week when she's needing it the most as she enters hospital next week so needed to buy pjs and stuff).

    ***Putting graditude and well wishes out to the universe to all the great support workers and carers out there*** I dont know where we'd be without you!!
     
  9. taniaaust1

    taniaaust1

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    I just got back to from the drs. Im still so happy with this new GP Ive had for a few months now, she's so great (listens to me well and actually does the things I need done to try to sort all my medical issues out).

    I got the referal done which the repat hospital wanted so I can stay with the same hospital dr (the first one I saw) there thou still need to see the other one to get the tilt test done.

    I also got a new referal for my old allergist as the other referal thou an "indefinate" one (one with no time limit on it:- I never knew till today, when I rang him after not seeing him for so long that there was such a thing!). Apparently thou with my old "indefinate" specialist referal, if one starts seeing a new GP (which cause I moved I are), one then needs a new referal if one needs to go back at a later date.

    I updated my Dr on my last appointment at the hospital (turned out she knew the dr I ended up getting there quite well, he used to mentor her) and also told her about the new specialist appointment I have for the new discovered eye disc issue I have. I think she's going to ring the other dr or fax him to ask if something can be sorted out for me over having to see yet another doctor before the tilt table.

    I queried whether I should get some anti-anxieties as my stress level over getting to my appointments is now so high and also situational stress over the lack of support Im getting and with not having enough home care... she (she's well aware of all my med issues) said that she thinks I'd be far better if the issues are sorted out with it being all situational stress (she's so right). So she's going writing DisabilitySA another letter and will fax it.

    I also told her about my self harming the other day (Im embarrassed about it some but she would of found out about it anyway and I thought as the other dr probably will mention he saw my arm in his report.. I didnt want a new dr just jumping to the conclusion I have psych issues which takes then attention off of my physical issues).

    Self harm thing happened when I got wayyy too stressed out over things (doing too much makes me sick and can set off anxeity) and of all this fighting disabilty dept CONSTANTLY to get needs met, and of having to see a new dr (something I always nowdays find stressful).

    What really set me off with the stress amounts Im carrying and caused the that self harm incident making it so I just had to do something to msyelf was I breached the very low carb diet I need to be on. (I didnt breech it much but it was enough to have me emotionally reacting to all the stress.. I had an extra piece of fruit and a bit of pumpkin and a carrot in the pulverizer. It was too high in carbs and hence flipped me out and had me looking for a knife but then opted to slash myself over and over with a strong needle as I didnt have one(I dont keep sharp knifes in my house due to things like that happen when I breech my diet).

    I'd brought a pulverizer hoping by using it I could stop missing so many meals and thou I was choosing the diabetic recipes for it or quartering the fruit in other ones, there was still too much carbs in them, fruit for me. Im trying everythign I can do to help my situation so I can be living a little more normally :( (going to be paying off that pulveriszer for months). I think so she may put put in the latest letter to the state disability service, how much I need to be able to be eatting right or it gives me BIG ISSUES to the point my mental health is then being affected. (Ive no idea what she'll put in the letter, she's doing it and is going to fax it to DisabilitySA).

    By then I'd used up the double appointment and was going over time, so the other stuff I had on the list to talk to dr about will have to wait till I get to go there next, which wont be a while as I have too many hospital appointments to get too. Im feeling drained now after todays appointment so going now to go to bed for the rest of the evening and night. (its 4.45pm and Im completely wiped).
     
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Your new GP sounds great. I hope she is able to get you the tilt table test without another dr. appointment. Instead of wasting money on unnecessary dr. appointment, they should spend it on providing you with transportation.
     
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  11. taniaaust1

    taniaaust1

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    Ive always wondered if ME/CFS is being caused by some kind of unknown deficiency as of cause deficiencies can affect our bodies in our kinds of ways including possbily affecting things like our immune systems. Science is still just a baby when it comes to nutrition and our nutritional needs (big pharma has no need to put money into those kinds of studis as they wont make much money out of it). Most doctors are struggling to even know the basics when it comes to nutrition.

    Since my 23andME test and some help from Valentjin who's been comparing the results of ME/CFS people (thanks Valentjin :) ), Ive been looking in depth at my individual mutations trying to look for clues on the whys of the ME. So far Ive only got to investigating one page of my results but the one thing which really stood out to me on that page was "arginine".

    I have a homo mutation SLC7A1 which is only in 0.8%, which is involved in the transport of arginine, lysine and ornithine. What made me pay more attention to it is that I also have a 1% (hetero) mutation in which "arginine" came up again, PAD14 gene which converts arginine to citrulline.

    PAD14 is thought to play a role in granulocyte and macrophage develop = inflammation and immune response. My interest grow further when I looked into "citrulline" which is what arginine converts into (it may do other things too but I havent looked into that yet) and found out that body builders use it for stamina, energy etc.

    The following is what Ive put together on Citrulline taking bits of wiki and other places.

    Note L-Citrulline Malate is available as a supplement

    "L - CITRULLINE

    Other Names:


    2-amino-5-(carbamoylamino)pentanoic acid, Citrulline, Citrulline Malate, L-Citrulina, L-Citrulline AKG, L-Citrulline-Alpha Ketoglutaric Acid, L-Citrulline Malate, Malate de Citrulline.

    Overview

    L-citrulline is a naturally occurring amino acid. It is found in some foods like watermelons and is also produced naturally by the body.

    L-citrulline is used for Alzheimer’s disease, dementia, fatigue, muscle weakness, sickle cell disease, erectile dysfunction, high blood pressure, and diabetes. It is used for heart disease, body building, increasing energy, and for improving athletic performance.
    .........

    "The organic compound citrulline is an α-amino acid. Its name is derived from citrullus, the Latin word for watermelon. It is a key intermediate in the urea cycle, the pathway by which mammals excrete ammonia. "


    "Function


    Several proteins contain citrulline as a result of a
    posttranslational modification. These citrulline residues are generated by a family of enzymes called peptidylarginine deiminases (PADs), which convert arginine into citrulline in a process called citrullination or deimination. Proteins that normally contain citrulline residues include myelin basic protein (MBP), filaggrin, and several histone proteins, whereas other proteins, such as fibrin and vimentin are susceptible to citrullination during cell death and tissue inflammation.



    Patients with
    rheumatoid arthritis often have detectable antibodies against proteins containing citrulline. Although the origin of this immune response is not known, detection of antibodies reactive with citrulline (anti-citrullinated protein antibodies) containing proteins or peptides is now becoming an important help in the diagnosis of rheumatoid arthritis.[5]

    Circulating citrulline concentration is, in humans, a biomarker of intestinal functionality.
    [6] "



    "Sources


    Citrulline in the form of citrulline
    malate is sold as a performance-enhancing athletic dietary supplement, which was shown to reduce muscle fatigue in a preliminary clinical trial.[7]

    The rind of
    watermelon (Citrullus lanatus) is a good natural source of citrulline "


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

    (Im sure Valentjin wont mind me sharing this)... SLC7A1 as "one" of the homo mutations Valentijin finding common in us from the results looked at so far. So maybe I are onto something with this thought of maybe something to do with arginine is involved in our illness?

    I'd love to hear from anyone, if you've found you have unusual mutations involving "arginine" in your SNP results.
     
    Last edited: Nov 15, 2013
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  12. taniaaust1

    taniaaust1

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    wow.. i just found something I thought was very interesting and seems to tie into a possible new ME theory of mine that arginine may be involved in some way. It would explain the many with ME having low blood volume (and hence the OI issues). check out http://www.mayomedicallaboratories.com/test-catalog/Clinical and Interpretive/80344

    (Im yet to look up arginine properly yet so still dont know what else it does, Ive wiped myself out now from the short time Ive been researching today and need to go back to bed now no matter how excited I feel about researching this further today.. sighs.. I slept over 14 hrs the other day and are right now more wiped out then I felt then).
     
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  13. taniaaust1

    taniaaust1

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    update

    Helene (DisabilitySA finally rang me back.. she appologised for taking so long since I'd left the message for her last Wednesday). Maybe Im going to make the specialist appointment on Wednesday after all, she told me she's trying to hasterly arrange funding for my transport there. The hospital rang me asking if Ive found a way to get there yet or not and I've had to say.. "no idea".

    Tomorrow is my eye specialist hospital appointment.
     
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  14. taniaaust1

    taniaaust1

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    I thought I'd share something I did the other day, I know Im alone with this kind of thing.

    When I was at the doctors the other day, I rang on my mobile phone, my other specialist for some info I needed for the GP and was while on the phone was asked for my phone number. My reply to the surgery receptionist on the other end was "hold on, my number is on my phone and I dont know what Ive done with my phone, I cant find it in my handbag."

    I then proceded to start to completely empty my hand bag out in the new doctors room in front of her and my support worker and then become convinced I'd forgot to bring my phone with me, until my support worker goes "Your phone is in your hand, you are using the phone to speak to her!!!". It was soo embarrassing.

    oh well, I guess the new doctor really knows just how badly I function after seeing that. I think I did something similar last time I saw her too.
    .................

    A couple of weeks back when I was out shopping, I lost my shopping list (not usual for me, I do that so much that my support workers nowdays hardly ever let me have the shopping list). Thinking we were going to have to go back to my place and do another after we retraced where we'd been in the shops with no luck, she ended up spotting it in the spokes of the wheelchair.
     
    Last edited: Nov 18, 2013
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  15. taniaaust1

    taniaaust1

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    So much has been happening that I havent been able to keep up and document it all.

    Today my stress level is 10/10 (to the point I feel sick with anxiety over things). The new support worker "secretly" went against what I told her I wanted and I found out this morning that she'd done that and thou she was very nice and probably would of been a great worker, I now feel like I can no longer trust that one so do not want her back here.

    The Situation

    Due to buying things to help me with the disability, means Ive been running out of money for shopping. (to make my life easier and much better eg pulerizer so I dont miss as many meals, a clock with the days of the week on it to help me stop confusing what day Im in so much.. I often miss putting my bin out if my elderly friend dont ring to tell me to do so (so hoping the clock with the days of the week on it will help me get my bin out on the right day). Anyway.. there is lots of things I current need due to all the issues I have.

    Last week when I was taken shopping (the last day I had my worker Julie), we got all my food shopping.. it was a big shop but then found out when I went to pay for it found out I had only a little money so couldnt pay for it, so was stuck with a full trolley, a head that by that point I couldnt think straight at all due to needing to rest by the end of the shopping trip (even thou I was in wheelchair) and big decisions for me to work out what few things of the shopping to keep. I wasnt in a state to be trying to work out things like that with my head after getting all the shopping, so we ended up leaving all the shopping behind. (Julie spent the last half an hour of my support time, trying to figure out how to help me get some way to be able to get my shopping but it couldnt be done. We couldnt work out where to ring and the one place I knew helped people in my situation was no longer doing that when I called.

    So this week on shopping day, Im still awaiting for Friday when I get my disability pension to come in (so no more richer) but this time had circled only a few things on my food shopping list which I had the little amount of money to get and we just got those (leaving 3/4 or 4/5 of my shopping still not done).

    We got home and before new food was put in the fridge, I got the support worker to clean up stuff in my fridge that obviously is better off being thrown away but Im so desperate with my situation right now that I told her just to cut off the very very bad parts and wash the very food slimy things and we'll put them back into fridge as I will probably need to eat those. She tried argue with me about "you cant eat that, it will make you sick" .. I explained to her it probably would be coming down to that or I will be going without.. when one hasnt money one cant be choosy about what a food looks like. I prevented her from throwing some of the ugly looking (with bad spots) food away so I'd have more to eat.

    Anyway, it turns out ... while I went off to rest or wasnt looking, she went and put the stuff in the bin and I only found out this morning when I was working out what I was going to be eatting today so then had to fish the food out of the bin with the rubbish where it had been all night (which is even worst then if she'd put it in the fridge for me). I can understood how she feels about letting one of her clients eat not nice food but that is far better then ending up with no food and hungery!!! I hate how she went and did this sneakily after being told by me when she went to throw it out the first time, "no dont, I want that in the fridge as Im going to be eatting it".

    sighs.. so I dont trust that worker now and feel upset about her sneakiness and ignoring what I'd said, I dont want a worker I cant trust or who doesnt listen to me. Her actions could of ended up making me go hungry!!!

    Anyway.. DisabilitySA (Helene) has rung me today as the situation got back to them (obviously that worker had told her higher ups at CSI (support agency she works for) that I was requesting that bad food be kept and that she'd secretly gone against my wishes... and then CSI rang DisabilitySA over it.

    Helene thou Ive told her lots Im having severe money issues and had told her that I couldnt get my food.. and had told me to go to financial counselling (something which wont help me as Ive been there before and its simply a case of my disability costs being more then my pension..but I'll do what she said and go and have financial counselling again thou its probably going to be a complete waste of my valuable energy unless they can give me more then just financial counselling). She nly has told me today after the latest incident that there is a place in seaford who one can get emergency food from. I wish she'd told me that earlier and I wouldnt have then ended up with the issue with that support worker yesterday who I now no longer trust and dont want.

    My issues are just snowballing and snowballing.

    Helene is back to telling me to go to a doctor re getting the transport substacy scheme thou Ive told over and over again its not suitable for me to to use as I cant go out alone!!! (due to my sudden collapses), with the second issue of also due to my perfume/chemical issues. I got upset with her today on the phone as she's not listening to me about me not being well enough to be going out alone, it actually puts me into danger as when my head isnt getting enough blood Im doing things like walking in front of cars as I cant think (and I collapsed in a car park last year on the road part).

    I told Helene I need to go to my old psychologist as Im way way too stressed about all my issues at this point...close to a melt down over it all.. and soo need someone who is good to talk to (my old psychologist would probably do a letter to DisabilitySA which could help me as she knows me well, she knows Im not a mental nut case and have very bad health issues). To which Helene then suggested me to go to a different one due to how far away my old psychologist is now that Ive moved :( sighs.. she doesnt understand that most are no help for me at all.. I saw soo many before I found one who was able to help me at least emotionally where as the others were no help at all to me and if anything made me feel worst (cause it made me feel bad they went helping and I was using my time and energy to go and see them).

    I'll update the rest of what has been going on another time.. what's happening today is more then enough.

    Why do so many ME/CFS patients commit suicide.. I think that is obvious... the disability services are completely unable to deal with severe ME/CFS patients, they no understanding at all of our needs. They shouldnt have to end up getting calls from places telling them we are eatting half rotten food to understand how desperate our situations may be when we keep telling them these things. (one financial place I rang for help suggested I do part time work to help my money situation).
     
    Last edited: Nov 26, 2013
    rosie26, merylg, golden and 4 others like this.
  16. golden

    golden Senior Member

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    T1

    please don't use energy replying to these ideas - esp. if they are useless or already been tried.



    The Goo d psychologist who knows you:

    1) could you book a telephone consultation with her

    2) could you Skype with her , if she doesn't know how, is she willing to learn how.

    3) could you correspond via email or letter

    4) failing all that could she write a supportive letter for you stating although you are no longer her patient , she is very much knowledgeable about your case ...

    and then have her basically ask for your needs to be met.

    This does help a great deal although why people cant hear us I will not understand .

    Food :

    Set up online shopping. Use shopping time with carer to go to the seaside or somewhere else instead . (Don't be tempted to use time up on other chores). Or also go to this Emergency food bank - that sounds really promising...

    Keep om keeping on...
    It surely must be time for things to start getting easier for you.

    Best
    Golden
     
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  17. taniaaust1

    taniaaust1

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    Well I just got a text message from Margarat (my support agency CSI.. I get her to text me what is going on as she's the one who's lied about things she's said to me in the past so dont nowdays trust phone calls from her).

    The message reads "We are letting you know that we dont have a support worker available yet for your 11.10am appointment." I rang them yesterday after making the appointment to get emergency food. (I told them yesterday that I needed someone to take me there right after I made the appointment). Her message then goes "can you change your appointment to this afternoon".

    ***sighs** well I would of made the appointment this arvo if that had been possible as my normal support time is this afternoon so I know I can get a worker then. The emergency food place is only open from 9-12 and as it is I had to convince them to do me a HUGE favour by making me the appointment time in the first place as their normal rule there is people have to arrrive at the place at 9am and from there are given appointment times (one can be waiting just over 2 hrs then for their appointment..which is support time I wouldnt have).

    Anyway.. Im screwed. (Im now so glad I pulled the food out of the bin). The agency's message goes they are still trying to find someone. My appointment is just over an hour away now and Im left not knowing to cancel it out or not in case they still find someone. This is going to screw up the food place as after allocating their appointments there at 9am (in half an hour lots) I guess they may of sent away anyone they couldnt fit in today.
     
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  18. golden

    golden Senior Member

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    @T1

    Did you get your food ?

    edit: seen your answer on another post. you have had something to eat although far from ideal. I had a practical solution for youif you were literally starving.

    Best
    Golden
     
    Last edited: Nov 28, 2013
  19. Valentijn

    Valentijn Activity Level: 3

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    @taniaaust1 - Can you ask your sister who lives nearby for some food? That's the sort of emergency help that family should be there for, and can even be understanding about even if they don't understand ME/CFS.
     
    golden likes this.
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    If you cannot phone/skype/e-mail with your former psychologist, could she recommend someone in your area who would be helpful?

    Throwing away food is essentially throwing away money. Are you buying too much food? Buying more perishable things than you can eat before they spoil? I know you have brain fog, but I would give priority to working out a shopping and eating plan that did not allow any food to spoil.
     

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