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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. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hope it works for you. I tried to find some reviews but the site you linked to was too slow to load the comments section, and I only found one review somewhere else which was very good but impossible to know if the guy was paid for it!
     
  2. golden

    golden Senior Member

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  3. golden

    golden Senior Member

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    I am deeply concerned for you @Tania.

    I understand about the food and initially I think it will not do much harm and even possibly some good having a little fast. Especially since your blood sugar was stable. And totally understanding the food complications/allergies that arise with M.E/CFS.

    I too have been left to starve. And went a long time too ill to feed myself. I have been homeless, in dire situations and can agree that now I have a home (as opposed to my two birth touring caravan, tent or tarp), its really really really difficult.

    Edit: Although I do recall living on a round-a-bout for a short while and that too had its difficulties :)

    I also remember pitching my tent overnight on the land of a Judge. Actually he was the Judge of Judges. He was really nice. Gave me some food. He had a distinct Divine Quality (DQ) to him i recall as we chatted. It was a very special quality.

    I do have hope that if you get your case to court, there will be justice.

    My friend is pretty useless to. But I couldnt manage with tge animals without him. I had a radiator leak months ago. I asked my friend to help, so he made it leak more and flooded the room out! lol Its now unuseable and damaged the floor boards. :)

    I dont understand Asberges at all, but I think it maybe especially important for you to try to close the door on thoughts of suicide.

    You are not your thoughts.

    Please Dont let these negative thoughts dominate you.

    The positive intent behind these thoughts is that you want and need peace and a rest. And for disability to stop abusing you. I really feel you can find this whilst alive.



    I have some replies from all the researching i have been doing, one is from The Salvation Army. I wont proceed with this until I hear from you.

    I guess all that takes a back seat to this more urgent situation.

    'Stop letting the b***ards grind you down' is all I can think of.

    I have used visuslisation to successfully diminish or dissolve such clips of thoughts that play on the screen of my mind. At least to the point where they are not effecting me.


    Hope you got home from your play OK???

    Reiki meanies not to give you a lift home btw. These things happen though. Your friend should not have shouted at you.

    Nor should the disability be lying to you and giving you the run around the way they have.


    Golden
     
    Last edited: Aug 8, 2014
  4. taniaaust1

    taniaaust1 Senior Member

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    Its like we dont fit into this world, Im glad to hear that a Judge helped you out.

    oh lol, sounds like something my friend would accidently do. I try so hard not to give him a hard time but he's screwing up almost as much as I are nowdays due to his age.

    Yeah, I know I are not my thoughts, they come from me but are not me. I see us all as spiritual beings having a human experience. This human experience I only see a very small part of reality, to me we are timeless spirits. As timeless spirits, nothing can touch or harm us. One day after Ive gone, I'll just see disability services as like a wee speck of dirt, they can harm the human I are this life but they certainly wont be getting my true self down.

    Yeah, all the stuff is being put on the backburner some for myself right now as it no longer matters to me as Im planning to leave these problems all behind me anyway (I do not want it to matter to me).

    I do thank you greatly thou and will put it onto the list. Thanks for the pm, I had no idea at all they did all that.

    Im not going to try to visualise even if I was able too as Im trying not to think of them at all, I do not want to dwell on disability services or my situation, I do not want them to be in my "now" moment (I actually cant visualise, I cant even visualise a colour in my head)

    Yes Im home now. My sister had to rush me back the next day (I was so exhausted they had to wake me up to get me home in time for the NBN appointment at 1pm). What is really annoying is that once home, still exhausted I fell asleep and missed the door so missed the appointment I had!!! So now we are up to the FOURTH time in trying to get the NBN connected here (Im going to have to spend a long time on the phone again making new appointments, last time I spent 1hr on the phone over it :( )

    The concert went well (thanks for asking), my neices team came last in the competition but they still did good as they were the youngest and least experienced team. The theatre thou to my shock didnt have wheelchair access inside, just steps. So this meant that two people had to carry my wheelchair in and I ended up having to crawl up a few stairs (which everyone fussing over me as they thought I'd fallen but I was too weak with the ME/CFS to be able to pull myself up a few steps using a rail).

    And then my brother-in-law had a freak out at me over where I wanted the wheelchair to be put for me (at the side of an isle as it was near a fire escape). I felt like he was trying to order me where I was allowed to put my legs (to me that wheelchair is like my legs). (Ive had some big blues with him in the past due to his trying to tell me what I should be doing). He ended up walking off in a huff when I didnt allow him to push me around.

    Anyway, it did go reasonably well, the theatre was less then half full and me and my family sat away from everyone and where I was at end of the isle, I didnt end up needing to wear the chemical mask.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    MEGGSIE just got resized.jpg HEFFY just got 2a resized.jpg
    This thread has been so dismal that Ive decided to put a couple of photos of my two new foster kitties. I lost them for several days, turned out they were hiding inside a lounge, my support worker helped me get them out of the there yesterday , (while she was waiting on her stepfather to come and get her out of trouble. She'd hit my letterbox again.. 2nd time in 6 weeks, her new car is so scratched up. She had my letterbox wedged under a part of her car. She says she wont be trying to park in my driveway in future).

    The two kitties hiding behind the toilet as they are scared. Heffy is the grey and white, the ginger is called Megsie (for Gingermegs I guess, he's very soft and cuddly)
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Poor little things. Hopefully they will grow in confidence with patience and TLC. I adopted a one-year-old cat once who was terrified and used to run away from me. But after a few weeks of gentle care and quiet patience, one day she ran to greet me instead of running away. It was a lovely feeling that she finally trusted me, and she was very friendly and affectionate after that.
     
    Last edited: Aug 10, 2014
  7. taniaaust1

    taniaaust1 Senior Member

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    Update

    I remembered to ring my advocate today to tell her about the Disability service lying and saying I said I didnt want any extra support at our last meeting we all had together. She was rather shocked when I said this and said she'd send them another email to find out what is going on. I tried to stress to her once again that this is why I dont want to be dealing with them, that Kerry person keep on making things up.

    I also cause Ive been stressing so much about possibly ending up with a psychologist who cant understand my issues, ended up ringing one who has understanding of ME/CFS (I got her now from the Sth Aust ME/CFS societies upcoming seminars). She's very nice (has had ME/CFS herself and is very well aware of the discrimination which goes on with this illness) and going to take me on as a patient. I think she said it was her day off today but she had quite a long convo to me on the phone (I hope Im not to sick tomorrow cause I did that).

    She's trying to set up a mental health plan for me currently with the doctor I saw the other day as my own doctor is still away (she said the clinic said my doctor would be back Friday after next). I think this other doctor to do the mental health care plan Im needing right now, may be going to ring me to do a phone appointment with me????? (unless Ive confused what she said).

    Anyway, now waiting to see what happens and Ive counselled out the mental health assessment I was supposed to have tomorrow which was stressing me quite a lot (if I'd had that appointment tomorrow and it had gone wrong, who knows what I'd do in my current state, I may of slashed my wrists or something (I truely didnt trust myself if tomorrows appointment went wrong).

    I cant bear more issues with others then I have right now.. . I also cant bear to have a psych or deal with a mental health person who doesnt understand ME. Im far too highly sensitised to people ignoring my issues or treating me badly to deal with any bad appointments where I get any shit given to me or blamed for being sick. At least currently Im not strongly acting on suicidal impulse but just not eatting.

    She asked me to email her some info about myself but Im going to pass the link here to my thread onto her (energy conservation and I may of already done too much with that phone call earlier). I think this thread is the best to describe what Im going throu and have been put throu.
    ............

    I are still nervous about having a psych even if she is understanding towards ME/CFS as Im worried with my Aspergers she may find me difficult and worried she may get annoyed at me not eatting or end up feeling incompentient herself if she ends up not being able to get me too (Ive had psychs who didnt know what to do for me in the past when I was suicial years ago quit on me so that has created a fear).
    .
    I stress too much about others!! I just cant stand the idea of anything going wrong right now with a therapist and have doubts one is going to be able to help me due to just how strongly Im currently feeling about not wanting to be in this horrible world where those who have ME are always being abused in some way or another.

    I just cant seem to get myself out of the mindset that the disability services neglect/discrimination has destroyed my health and life and that I may never get back what Ive lost due to this.
     
    Last edited: Aug 11, 2014
  8. Indigophoton

    Indigophoton

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    Good to see you've still got plenty of fighting spirit Tania, and are taking control!

    You've got so much you're dealing with right now, it sounds like a good idea to get someone else on your team who will be all about helping you.

    Or, she may be able to work with the Aspergers, and be compassionate towards your suffering and the way you are currently managing it, and just help you :hug:
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I do hope so. Asperger's seems to be unusually common in ME (I found from online surveys that I am borderline Aspie, which explains so much about my life - wish it had been picked up long ago).

    It's even possible that this psych may have personal experience of Asperger's - in herself and/or in other patients.
     
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  10. taniaaust1

    taniaaust1 Senior Member

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    I wouldnt say that about my fighting spirit, the only reason Ive taken action with this psychologist is that I was terrified of being locked up in psych place with my ME ignored and made worst.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    The psychologist tried to follow things up but of cause as per normal things arent working out due to all the s "rules" in the system, this time its a medicare rule preventing right now her from being able to give me some counselling. I hope she dont mind me sharing her email to me here

    "Tanya,

    Thanks for the blog. I look forward to reading it.

    Just spoke to Dr Kundu who said the following:
    1) Because you are not his regular patient, unfortunately Medicare requires that you do go into the surgery for a face to face consult when it is for a mental health care plan – your usual dr Jasmine McIntyre, could do one over the phone, but as you know she is not back until late next week.

    - If you give the clinic 24 hours’ notice they will definitely fit you in to see him.

    - I explained the reasons why you needed a phone consult but he said he was unable to since Medicare requires

    2) Recommends a follow up phone call to Dis SA re Dr McIntyre’s’ letter
    - If you would like me (Robyn) to follow up Dr McIntyre’s letter to Dis SA, first you need to ring surgery and give permission for the surgery to forward me a copy of this letter.

    - I would like a copy of this letter in front of me

    - if you would like me to ring Dis SA and find out what is happening as a result of this letter; apparently your gp wrote the letter on June 19th and wrote very strongly of your need for more support esp so you can be driven to medical appointments and assistance with home care and shopping.

    - Can you also give me written permission via this email to contact Dis Services on your behalf; just write: I, Tanya Selth, give Robyn Lingard permission to contact Disability Services SA on my behalf.

    If you can get more support from their support workers so you can access these basic services, no doubt you will feel a lot happier.

    I will need the mental health care plan done before I can commence providing further counselling via telephone;
    but I am available to start chasing up Dis SA re your gp’s letter for you; just as soon as you give me written permission and arrange with the receptionist at the gp clinic to forward me a copy of the letter. "
    .................................

    Thou a very nice and good email to me and its much appreciated she sent it to me, I kind of found the email a little bit upsetting as she refers to me seeing him and him able to fit me in if he's given 24hrs notice. I know she didnt mean to do this but its made me feel once again like Im not being listened too (another doctor who has ignored the issues I have about not being able to get in to see him. This is the very issue which lead me not being able to see my specialists for over a year).

    Its like someone saying, if you can just go and get out and you will feel happier when one has no way of doing it at all. Its no good mentioning me even going to him if I have no way of getting there and I are already upset about that I cant get to my doctors appointments. That surgery too has on their leaflets say they do home visits (but obviously they dont for those of us who have ME/CFS as that has never been suggested to me and I have asked for it before and they told me they couldnt do it for me). She did tell him I was feeling suicidal too.

    At this point Im doubting if Im going to feel any better once these issues are all fixed, I feel too tormented by all the neglect and abuse which has gone on, its like I no longer trust anyone who is supposed to be helping me, I no longer trust the whole system of care from doctors, ambulance personal and everyone else, if things go wrong, all Ive found is I cant trust people to do the right thing and cant trust them to treat me fairly.. all Ive seen is that people will basically just leave another to die or just dont care if Im left getting sicker and sicker (thinking back to my bedbound time when doctors abandoned me).

    I hope Im wrong about that and that she's right that I will feel better when its sorted. How will I suddenly find this trust again in the whole medical profession and disability services profession? How will I find it even when the EOC discriminates against ME?
    ..............................................................................

    The support agency since they found out I was accidently been given an extra hour of support for the past few weeks has now corrected things so today Ive just had that extra hour of support I had been getting past few weeks pulled. (I knew that mistake of theirs wouldnt last, it was such a mistake which helped me get to the GP the other week. They said the mistake had happened due to me being given a new worker).

    Today I rang the support agency today to query what the disability services had told me in their last phone call to me that they'd given me an extra 4 hrs unpacking time (they asked me if I'd used the extra time and Id been like "what???") and told me that the home support agency should of told me that. Anyway, the home support agency just told me that they do not know anything about it at all!

    I also found out today that Ive been given a new person at the home support agency to deal with over phone (Jess, she seems very nice). Im very happy about that seeing Bec my last home support agency coordinator had a go at me on the phone the other week for my workers going overtime and since then I hadnt wanted to be dealing with her anymore. (I hadnt put in a complaint about it due to already trying to deal with too much, so it wasnt that which got me changed over).
    ...............

    I had the Nourlunga Emergency Mental health Service (NEMS) ring me today due to that cancelled todays appointment (the one I couldnt handle having with someone who doesnt understand ME/CFS). Cause Im feeling emotional, I practically bit the poor guys head off on the phone as I do not feel like I can deal with any problems (and now Im feeling bad due to not being nice on the phone). Getting a phone call from ones who probably wont understand me, just causes me even more stress so I responded poorly to them on the phone. I really hope they do not try to come around to see how Im doing as my reaction probably would not be pretty.

    **sighs** I do not currently trust that a massive scene could occur and things like that, I end up being physically hurt as my health is so bad. (I had cops once tear the ligaments in one of my arm after I had a little bit of a mental breakdown (I was bawling my eyes out in a bus stop and couldnt stop crying) and they tried to get me onto an ambulance. I then was injured for over a year due to police too rough handling, had to have steriod injections etc etc and couldnt use that arm well, couldnt raise it. My body is very fragile and I could be quite easily physically injured if all hell breaks loose here.

    crap they think they are doing the right thing by ringing me and going "how are you, you cancelled the appointment" but the whole system the way it is, just causes me more stress. My brain couldnt remember my GPs name on the phone so they probably didnt believe what I was saying about her currently being away and that Im trying to sort out some mental health care for myself for myself (one who will understand me).
     
    Last edited: Aug 12, 2014
  12. taniaaust1

    taniaaust1 Senior Member

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    bruises from blood test a week ago 1.jpg Update on my blood tests

    Healthscope pathology just phoned me, turns out the few drips of blood in those 3 tubes (all the blood nurse could get out of my body, an half an hour effort to get blood) werent enough to do the blood tests, so the blood tests have to be redone. They are coming Thursday to try again. Hopefully my body can have some blood for them this time. Im still bruised up from last weeks attempt at getting my blood (photo I just took of the bruises which are still trying to heal).
     
    Last edited: Aug 12, 2014
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've been trying to think of a solution to you not hearing the door due to being asleep, and wondered if one of these might be suitable?

    Here are the product details in case you have problems with the link:

    They're on ebay Australia too (available for less than $50), but it might be cheaper to get one from a local shop as then you won't have to pay postage. If you think it might help but can't afford one, I would be happy to buy one for you. I think you could have the handset in the bedroom if it's not more than 10m from the door. I think you can just get an extension if it is.
     
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  14. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Brilliant! Choosing your own dr. is much better than letting them foist one off on you. :thumbsup:

    Indeed you do. ;)

    And then again you may. Is this the black and white thinking getting the better of you again? :hug:
     
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It sounds like she is getting right on things.

    I don’t think that he was ignoring your health issues. The letter says Medicare requires a face to face consult. Could the new psychologist get him to do a home visit or get DisabilitySA to give you the support time needed for your workers to get you to the surgery?
     
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Be sure you are well-hydrated when they come. Maybe started drinking extra electrolye drinks the day before.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    If you don't need the intercom/speaker option, you can get a wireless doorbell that will ring up to 100 metres from where it is pressed, for example this one. They are pretty cheap.

    I can't get ebay to load at the moment but I'm sure you will find them on ebay Australia.
     
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Here's one. I tried to post earlier but had major problems accessing PR.

    Hope you're OK, @taniaaust1.
     
  19. golden

    golden Senior Member

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    It beggars belief that this stand in Doctor hasnt done a home visit to you.

    It was exactly such a situation which lost me my benefits altogether - i couldnt get to the G.P. And they wouldnt come to me.

    This psych sounds VERY good @T1. I think you have done a miracle there in finding her.

    If she cannot get the G.P. To visit you (its sods law that Dr.Jasmine is on hols or this would not be an issue)

    Then there is the other way of getting the letter to her from your Doc insisting strongly for more support and she can perhaps arrange for emergency hours to be given to you to take you to this G.P. SWIFTLY.

    From there on in, these practical issues may very well get easier. You are right in that you dont know you will feel happier - and this is just a kind thing people say - you will have to see - but when things are running more smoothly and the support is in place - you will get much deserved rest -

    - and time can be a good healer.




    I was actually just posting a little reminder of the advice to drink electrolytes and be hydrated to help your blood test tomorrow...
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    She's told me she doesnt know anything about Aspergers now. I wasnt expecting she would so Im not surprised. I just hope it dont cause issues (Ive had some past psychs tell me they dont understand me which turned out to be due to my Aspergers) as I do most importantly need someone who understands ME/CFS.
     
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