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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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    Hi Little Bluestem.. that is one of my big issues.. with my Aspergers I do not manage to do to the point letters even when I try and the more I try, the more longer and longer and more waffled they get. I know this may be quite hard for a person who hasnt got Aspergers to understand. (the more I try to edit my letters.. the more I end up adding into them too.. my friend when he's here and Im trying to work on one.. has to actually get me to stop looking at them as I just mess my letters up more and more). Even when I get him to do one for me.. I end up adding more and more in.. (I usually ask him to take them away as I know I will continue doing it .. it takes weeks before Im satisfied with one of my letters if Im trying to send out an offical one. (Im far worst at doing those as they are very important..then when I post here cause when I post here my posts arent important but I still manage to waffle on thou I try not to do so).
    MeSci likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Anyway.. Im going back to bed.. Im too tired to be posting, with the way I feel even if I cant sleep Im better off all night just laying in bed right now.. trying soo hard not to let Disability services stress me out (otherwise Im just going to aggrevate the ME too much).
  3. Valentijn

    Valentijn Activity Level: 3

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    I think their approach has been extremely inappropriate. Instead of taking care of your needs, and assessing all of the information, they seem to have appointed themselves with the duty of advocating against you. They are picking a side (opposing you), and cherry picking data to support their position, and seem to be using that as grounds to deny assistance as much as possible. That is not their job, and they are abusing their position.
    golden, taniaaust1 and MeSci like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    5.50am now.. and Ive had a night of nightmare after nightmare.. all the same theme.. all triggered off by how DisabiliitySA has treated me. This last one has my adrenaline up so high now that I feel like Im going to vomit. Ive HAD ENOUGH!! so Ive decided now that Im going to play with my BP drug ..clonidine and increase its dose (the clonidine which acts on noradrenaline an lowers it), in the hope that it will help bring my adrenaline down from the last nightmare, so I will be able to go back to sleep again. When my adrenaline is as high as I can feel it is right now, I have no way of sleeping!!!.. either that or I take my prescription anti nausea pill but Ive never used that for feeling very sick due to adrenaline stuff before, no idea if it works for nausea "Im about to voimit" caused by that. (I usually just use that at times for when I feel nausea from the ME when Ive overdone things ).

    oh well.. hospital did say get a doctor to adjust my BP drug (while I was increasing Florinef) so I guess they think its okay for me to increase the dose of the drug anyway. (I havent been able to get back,to a dr since due to all the meetings Im having due to DisabilitySA).

    The last nightmare I just had.. was one which horridly ended up with me being chased and chased.

    Dream went.. I was in a place, a student and there is one in the room who has control over my situation who I know I cant trust (that was symbolising DisabilySA).. scene shifts.. now Im in a hospital with the same person and are being treated as if Im a mental health person. There is another mental health person here too... we are still in a classroom situation thou. I get told to write something as an essay but I know Ive been told to do this as an deceptive thing.. its not a lesson like its supposed to be to help me but rather they are secretly trying to catch me out.. they are looking for proof Im nuts as they believe I are so they are looking for something they can twist so they can do whatever they like with me and I will have no ground to complain about the wrongness.

    Im falling asleep while trying to do the essay they expect me to do. The person doesnt believe me when I tell her Im falling asleep cause Im so very exhausted and accuses me of faking it. They wont believe Im sick. They accuse me of not being cooperative and then they secretly decide to drug me to take me away, due to the ME/CFS they will lock me away for the mental illness they think I have but which I havent. Ive worked out what they are doing thou and decide to excape so I run. The person comes after me.. and from there I was being chased and chased till I woke up sick with adrenaline.

    Im going to experiment with my clonidine and take extra dose now and then go back to bed.

    Question if anyone knows.... Does benzos stop a person being woken up from nightmares? or is that likely to make my situation more worst and cause me to be "stuck in longer nightmares" which will stress and make my body react waking me up? Im now also considering taking the benzo (I try to avoid those like fire due to their addictive qualities.. max dose my past dr would allow wsa only 2 times a week.. (that dr is retired now so once these are out, I may not able to get more even if I could get to a doctor to get them).

    What is the best way for me to deal with the emotional impact they are having on me? and the nightmares its causing?
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I hope you can get some proper sleep very soon. It makes everything so much harder to cope with when you can't sleep. It can be a vicious cycle then - lack of sleep making everything seem overwhelming, leading to more worry and more insomnia.

    If it ever looks as though people are actually trying to diagnose you as mentally ill or get you put in a home, let someone here know asap - I'm sure we will do all we can to sort things out. Hopefully official sanity will prevail and it will never come to that.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't know about the benzos and nightmares - have you looked on the drug sites online, e.g. this one?

    Have you tried sedating antihistamines, e.g. diphenhydramine or promethazine? I don't think they are as addictive as benzos, and they also relax muscles and reduce nausea.
    taniaaust1 likes this.
  7. golden

    golden Senior Member

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    I think T1 has mentioned the beginnings of this somewhere recently (apologies if i am mistaken).

    I was concerned.
  8. golden

    golden Senior Member

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    T1

    Wishing you renewed strength...

    (edited: due to religious connotations)
    taniaaust1 likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    yeah that's an idea.. yes I do take sedative anti-histamine at times but havent done for a while. I forgot there is also that option. The one I used to take is Doxylamine succinate.. it actually I think works on the same receptors as benzos do and hence one also can develop a tollerance to this. I twice developed tollerance to the Doxylamine succinate in the past so ended up having to increase the dose hence I do think same risk is there with that.

    I dont know anything about the antihistamines you mentioned thou.
  10. taniaaust1

    taniaaust1 Senior Member

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    hi golden.. thou i arent christian as such.. I never take offense with religious connotations.
    golden likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    Todays meeting went .. well Im not sure how it went yet. On some things it went well and Im left feeling happy about eg my garden issue is going to be looked into and sounds like it will be fixed (other org they passed me onto with that STILL havent rung me). My advocate told the disability services people of another option they obviously didnt know about for that (one would think the states disability services would know the disability support services out there or are I giving them too much credit?.. unless they played dumb hence sending me to a service in which to try to apply to Rotary club volunteers to help me rather then using disability services out there for people like myself? Anyway.. the advocate from disability and complaints service (Leatha) gave them info on service for gardening support!!

    I also was told today that support workers can take me to the big shopping centre at Noarlunga if I cant get something at Seaford..there was confusion (not from me for once but from Disability services) as they believed I was already been taken to Noarlunga to shop at times... they didnt believe thou that Helene had told me I wasnt to be taken out of my suburb of Seaford which she certainly did say.. Helene (my old case manager at DisabilitySA) upset me on several occassions by ignoring that I needed to go there and kept saying it wasnt allowed and kept saying that I wasnt allowed to be taken out of Seaford every time I complained I couldnt get something I needed in Seaford (seeing that has turned out not in fact to be true what she was telling me..shows she was discriminating against me and just giving me a hard time thou on the other hand by telling stupid things which werent true.. unless she was naive on how the funding for travel worked???? and it working by kms? was she really that stupid?.. i find it hard to believe that she was being just naive and didnt know how things worked, I credit her with having more intellegence then that..

    Anyway.. today I was told Im already allocated so many kms and going to Noarlunga would be covered and is already covered as its within the distance. So glad I have 2 people from disability services not lying to me and telling me now how it works!! Not dumping irrational things onto me and making my life harder then it is already.

    I dont know how this meeting really went yet, the two disabilitySA people today (I forget their names) were being sensible, didnt say anything dumb to me eg didnt put my conditions down or me down and were listening and trying to understand (that is all I expect from anyone to be seriously listened too and my case thought about properly).. so I'll wait and see what actually happens. Will changes be made? We did thou run out of time so I felt some things right at end of meeting were left a little up in the air eg I was left feeling confused if I would be given extra hours or not. So we'll wait on the letter which will come from this meeting to see what is said.

    Another confusion coming into the meeting was I got told I'd not attended a medical appointment I was funded for and it sounded like I wasted the funding. Im very confused at that unless they meant the appointment I had to cancel due to heat which the support agency just told me I could ring back book their support for it for another day no probs...so that funding should be still there for that appointment and hasnt been wasted (unless disability service set a date to by used by on it which expired in the meantime. They love to set expiry dates on things not taking in regards that Im restricted by events I cant control to do with my health. As far as Im aware.. I never wasted any funding re appointments. I treasure the funding given to me for any appointments as its always been sooo hard to get.

    Leatha (my advocate for disability and complaints service.. was good, helped me stay on track and not go rambling off on other lines).

    Anyway..Im happy as the two from disabilitySA actually LISTENED (not something Im used to from that service and hasnt been happening in the past!!!), none of my illness was trivalised by stupid comments eg no one said "you couldnt have that, that doesnt happen" and I was treated properly as how anyone should be. They were interested to learn about what Im experiencing and my issues so they can make the right decisions on helping me.

    They didnt know that I had a complaint in to the Equal Opportunity Commissioner when they came.. Leatha told them at the start of the meeting (they were probably feeling a bit shocked at that thou they didnt show it). I wonder if that fact helped but these two havent done to me what Helene did thou I wasnt believed about what Helene said to me (I dont think they believe how she treated me..acting nice to me but at the same time completely neglecting my needs!!! and showing complete ignorance and disregard of my medical issues by stupid comments at times).

    I need to get over the year of dealing with Helene as I cant get out of my mind being neglected by her and let down by her so badly (she was a nice person which made the neglect and her thinking I was lying worst)..when all I ever wanted is for her to listen to me and check what I was saying and hence find out it was true. Ive been left with hang ups over the situation. Even if I cant prove the comments she said, she knows what she said and should of appologised once she realised she was being niave and for her comments that I wasnt allowed to be taken out of Seaford for shopping which is untrue.

    This brings me to the final thing I want to say today. Disability Services know about my thread here (I never tol them but they have found it..and today told me (for the second time..as they told me this by phone the other day too)..they said I need to remove names out of my thread and if I dont, they will be contactiing Phoenix Rising to dob me in about this post as its a breach of this sites rules (obviously they have enough interested in what Ive said here to actualy go and read PR rules to try to get me SILENCED)... so PR expect to get a email from Disability services SA dobbing me in for breaching PR rules for mentioning names.

    I hope PR doesnt tell me to remove the names as by posting here publically.. it helps others at times to remind me who said what and who did what!!! as I forgot things myself.. As I havent lied about things in my posts, it also is an accurate documention of what occurred and something I hope to use legally myself!!! DisabilitySA is going to get a law case from my complaints (Im going ahead legally) and they will not be able to hide behind me not knowing who said what or did what..as its all HERE!! So PR if you are going to alter my posts, let me know first so I can copy everything here said first as it is documentation for my legal case.

    If someone in a state disability service is treating those who have ME/CFS badly in a professional capacity.. this is info which I hope PR agrees is good to be shared so that others with ME/CFS can avoid having dealings with that person when they are also needing help. I do not want ANYONE else who has ME/CFS is my state to have to go throu what Ive been put throu and if my post has upset someone like Disability services says it has.. they should think more about how this whole situation has happened and maybe they should realise that person is owing me an appology for her treatment of me. For ignoring for a year that ME/CFS is a serious illness which causes physical disability!!!

    Has PR got a disclaimer at this site to stop you guys from being able to get into trouble if my state services attempt to cause you issues? (I think they will do as they said and inform you, Ive got names in my posts and hope PR itself will SILENCE ME). Anyway..Disabiliy SA (disability services of my state of Sth Australia) are resorting to threatening me now.. telling me I need to remove things in my posts here or they will be informing PR about me breaching site rules here.. actually that is a form of blackmail.. you do this or we will do that!! . (gov depts when they've done wrong, like to keeping people silent and that is what they want to do with me!!!! so yeah..now a threat towards me). Low down thing to do...start blackmailing me to silence me. (they were nice but they are more interested in their own workers who do wrong not being upset then supporting me and admitting that things in their own dept went very very wrong).

    DisabilitySA..since I now know you are reading my posts. As I told you today I WILL NOT BE SILENCED, I will speak out about your wrongs and neglect whereever I can.. you are just lucky "so far" that the media hasnt picked up on how you have treated me and how you treat others who have ME/CFS!! who havent been able to get support from you that they too needed. Go ahead and make waves with this site if you must and possibly force them to have to tell me to delete info out of my posts, but know that the more wrong you do me..the more likely the media is going to pick up on what you are doing and how you are treating those who have this illness. Those who have ME/CFS.. we are used to government depts wrongly treating us and neglecting our illness. So go ahead with your blackmail threat!!! to silence me.

    Start doing your job and learn about severe ME/CFS and how it affects us so you can give those who have ME/CFS the right support. I do not need your threats (the more I think about it, the more angry I feel that you just did this today.. trying to get me slapped by PR).. this site helps me as its my memory but I guess you want to take that away from me too!!! You've already made my health FAR WORST.. looking into ME/CFS and then issuing me an appology for not giving me the support I was needing would of been a better way to stop me from talking badly about you and those in your the gov org. Instead.. you just threatening me and have made me feel even worst as PR is MY SUPPORT.. and you just want to try to get me into trouble and get that taken away from me.

    You know I have Aspergers but did you know that Aspergers people absolutely hate unfairness and wrongness!! and will do what is right no matter what the cost. I cant stay silent at wrongness...and now just feel angry as its hit me how very wrong it was to threaten me/blackmail me like that. Do you realise that blackmail is illegal? Maybe this should be added into my legal case against the disability service too. Another thing which is emotionally impacting me.. Im crying now cause of how you believe like issuing me a threat instead of an appology is the way to go and stressed out that I could loose my support here due to you.
    Last edited: Mar 16, 2014
    Valentijn and golden like this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I, that case it would probably be better to just write up each point and when you are done with them all, send it in. If you do edit, only allow yourself to reword (but not expand!) things, move things (to a different section), or remove things.

    It sounds like your new advocate (I guess I shouldn't mention her name!) is good at her job. I hope she will be able to help you get things straightened out.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Diphenhydramine is sold under various brand names. Some of the products on this page contain chlorphenamine (a slightly less sedating antihistamine), sometimes known as chlorpheniramine, and I see that some of them also contain codeine, which I find useful as a fast-acting sedative. Promethazine is sold as Phenergan and other names.

    A good way to avoid developing tolerance or addiction is to rotate sleep meds rather than using the same one every night. I try not to take any specific sleep med for more than 4 days in a row, then take 4 days off that drug and taking a different one for up to 4 days. I often combine them with melatonin. I find that I need to take melatonin and promethazine about 4 hours before bed, and the other sedating antihistamines about 3 hours before bed. The codeine usually works within 30-60 minutes.

    I also try to avoid using codeine for more than 4 days in a row, and the same with sedating antihistamines (any type) as they all work in similar ways. So I'll have 2 days on codeine, 2 days on half-dose codeine plus melatonin, 2 days on mild antihistamine plus melatonin, and 2 days on stronger antihistamine, then back to the beginning again.

    I know you have trouble remembering what to take, but if you just use the general principle of rotation you may find that it helps.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I understand you wanting to keep all your journal stuff in one place, but the Disability Services do have a valid point about the names. It would be best not to include the names of individuals you deal with as there is a risk that a valid case for libel or defamation could be brought. Even if not, the individuals concerned may feel threatened or vulnerable by being discussed openly here.

    Could you just use their initials? You don't need any more problems to deal with, so if you can find the time to anonymise the names I think it would reduce the risk of fresh and stressful complications.
    Indigophoton likes this.
  15. golden

    golden Senior Member

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    I just mentioned Arch Angel Michael

    The Angel of Truth, Justice and Protection...

    :)
    taniaaust1 likes this.
  16. golden

    golden Senior Member

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    T1,

    I find your Disability Service a disgrace.
    They obviously havent got enough to do if they are reading this thread (and invading your privacy as this is a M.E./C.F.S.) site.

    If they are trawling through PR rules (I havent been able to do that!)

    And instead of rectifying immediately your bad care, they are more concerned with maintaing a false image of themselves.

    I know Simon Wessley, Dr.Myhill and other 'professionals' are discussed here by name and so I hope that you arent caused further problems.
    Valentijn likes this.
  17. Kina

    Kina Moderation Team Lead

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    Tania hasn't broken any of PR's rule which can be found by going to the bottom (right-hand side) of the page and clicking on 'Terms and Rules' . There is no reason why names can't be mentioned in full and there is no reason to edit any posts. They have no expectation of anonymity working in the public sector and all. If they wish to clarify our rules with PR, that's fine. I am happy to have a chat with them.
    taniaaust1, Valentijn, Ritto and 4 others like this.
  18. brenda

    brenda Senior Member

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    I would advise Tania to seek legal counsel as I seem to recall that a law suit will be considered prejudiced if there have been public complaints regarding the matter.
  19. Ren

    Ren ...

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    I haven't been able to read all the info here, but taniaausi1 please know that you are not alone, especially when it comes to being bullied/traumatized, which to my understanding can be a form of structural violence.

    Minimizing such behavior (as much as possible) is part of the justice that all-with-hearts are working toward. Please take care as best you can, and I hope you find some solace in knowing that the community here respects, values, and appreciates you.

    Those with the greatest power to help are also those with the greatest power to harm.
    Last edited: Mar 17, 2014
    taniaaust1 and MeSci like this.
  20. Kina

    Kina Moderation Team Lead

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    The only way Tania would need to seek legal counsel is if she was libelling or defaming them --in other words making shit up to hurt the reputation of another. This isn't what Tania has done. We do have a policy to protect our members by removing what could be libel/defamation. I think Tania has enough on her plate and really doesn't need to worry about these people contacting Phoenix Rising.

    @taniaaust1 if you want this thread moved to a members only forum, let me know.
    taniaaust1, Sushi and Valentijn like this.

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