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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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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    Emphasis mine.
    The point of shopping is not seeing how fast you can do it :rolleyes:, the point of shopping is getting the things that you need. :bang-head: {I'm getting a headache just reading this thread!:mad:}

    Maybe you should tell them that with you cognitive dysfunction, you can only handle being told one idiotic thing per day. ;)
  2. taniaaust1

    taniaaust1 Senior Member

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    lol, thanks that made me laugh.
  3. taniaaust1

    taniaaust1 Senior Member

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    Yeah it would work like that here too (and they'd be happy enough to do that). That's why I probably need a court case at this point to blow wide open the treatment of ME/CFS people going on by states disability service. :( Its just Im feeling so weak and vulerable and drained over it all at this point that Im doubting I can pull it together to do so and Im on very limited time (according to the lawyer I spoke too).
    Valentijn likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    :( I wouldnt be surprised if something like that was going on due to how Im now reacting and how much I now fear contacting them as I cant handle another rejection.

    She's not really my professional advocate but a counsellor but on the other hand being a social worker too if Ive got things right, this kind of thing may be up her alley. I dont know. I have half an hour appointment with her tomorrow so I'll see how far we get talking about things (I told her I do not want to be on the phone longer then this as its too likely to make me quite sick).

    wow
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The modern problem with artificial perfumes is that they are added to so many things. Almost all the laundry products in a UK shop are full of artificial perfumes, which are designed to last for days or longer on fabric. If they get onto rubber or plastic they can last for years. I know this from experience as a fellow sufferer of sensitivity to artificial perfumes. They are one of the main banes of my life.

    Most toiletries now have added perfume, as do most cleaning products.

    If I have been in a car or a room where there are so-called air 'fresheners' (which are simply air polluters) my hair and clothes smell of them for hours.

    So smelly visitors may not have used perfume as such, or even perfumed toiletries. It may just be on their hair and clothes, perhaps picked up from previous visits, physical contact with other clients, etc.
    Little Bluestem and taniaaust1 like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    Ive been trying to use my two new kitties as distractions and for the first time, I got the shyest one to purr once today. The other one I think I have basically ready to be put up for adoption, the last few days, its moved along great. I just got to get a good photo of it now so the cat rescue org can advertise him. Every time I get the camera out he comes up to me so I cant get its photo. It looks great in its $2 collar I brought it the other day.

    Ive also started to eat a little at times (Ive lost 7kg since I stopped eatting a couple of weeks back or whenever that was), I had 3 little crackers with cheese today with some mince. Im still really off my food thou and feel emotioanlly the same... like there is no hope of me being able to lead any kind of reasonably life due to how peole treat me. I still are wanting to die. I want an equiry into my death so no one else goes throu this abuse Ive been put throu.
    Ritto, Little Bluestem and Valentijn like this.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm really pleased that the cats are getting on so well and helping to distract you from your problems. Animals can give our lives a whole different dimension - a different reality and way of seeing the world. I often wish humans were as nice! But of course, some are, as we find here. Including you. And you have justified your existence in many ways, now by socialising a cat so that the cat can go to a permanent home. You can feel good about that.

    I'm also pleased that you are eating a little. Malnutrition can cause depression, and can result not only from eating 'badly' or not enough, but also from not being able to digest and absorb the nutrients from food. I know - I've been there - in the early stages of ME.

    So I know how hard it can be to feel positive about anything for long, and I still tend to underrate and under-enjoy positive things and over-respond to negative things, but I'm much better than before. Hope you can get there too. I know you said you weren't depressed, but under-nutrition might take you there, and that would be an extra burden to shoulder on top of all you already have to deal with.

    Like others here, I really want you to stick around!

    EDIT - just realised that you might take this to mean that I think you are exaggerating or over-reacting to bad things - I don't! I just want you to be able to feel more positive about life, which means that things do need to improve for you, but the little positives can help too.
    Last edited: Aug 20, 2014
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  8. Indigophoton

    Indigophoton

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    I think the point of the timer is to allow the ringing/flashing to be disabled when Tania is sleeping or resting, so that she doesn't get disturbed if someone calls at an unsuitable time, and to enable it the rest of the time so that she benefits from the amplified notification, and doesn't miss visitors because of not hearing the door.
    taniaaust1, Valentijn and MeSci like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I've wondered though whether Tania might forget whether she has disabled the alarm and needs to re-enable it. Difficult choice, isn't it?
  10. Indigophoton

    Indigophoton

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    I think the timer would solve that problem: it would automatically turn on and turn off the doorbell alarm on a schedule chosen by Tania. Once Tania had set her preferred schedule on the timer she could forget about it: the timer would take care of enabling and disabling the doorbell notifier for her.

    It's the sort of timer people use to switch on and off their lamps automatically when they're away from home, to make it look like someone's there, for example.
    Last edited: Aug 20, 2014
    taniaaust1 likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    But the required schedule might change from day to day, mightn't it? For example if Tania had not had enough sleep, she would need to sleep in.

    I'm sure Tania can answer this better than I can!
  12. taniaaust1

    taniaaust1 Senior Member

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    Yes this is correct.

    One of my support workers since she started the other job with a group of disabled people and is coming from them straight to my place, has to nowdays keep spare clothes in her car for her to change into or otherwise Im being affected by the deodourants from the people of that group, which penatrate into her clothing. (its still on her hair but wears off of that within 30 mins and I just stay a bit away from her till then).

    Im unsure if the disability SA person had actually put on chemical deodourant or not as we were in the supermaket where there is lots of others and they were walking by all the time and she may of picked it up from whereever she was before, all I know is that she was covered in it (she said when I said something that it must of been on her clothing. She's not trustworthy thou, I guess I will never truely know but it wouldnt surprise me at all if she did wear chemical deordourant). (If we met at my home I would of been able to tell as stuff picked up on clothing from others, I find usually does wear off within an hour)
    Last edited: Aug 20, 2014
  13. taniaaust1

    taniaaust1 Senior Member

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  14. taniaaust1

    taniaaust1 Senior Member

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    I know will be an issue. Currently it isnt unusual for my back light to get accidently left on for days, Im terrible at remembering to turn things on and off. (I do not even remember to put my bin out when it needs to and my elderly friend has to ring and remind me).
  15. taniaaust1

    taniaaust1 Senior Member

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    I dont know about those timers at all, I dont know about those ones people have for lamps either. (Ive been housebound or at least sick for a long time and dont get to browse at places).
  16. taniaaust1

    taniaaust1 Senior Member

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    Things arent turning out right, today I got another one of those nasty Healthscope missed domiciliary call letters from the blood nurse. Their fault as they came before the time that we'd arranged,she'd been told that she could come "ANY TIME AFTER 11am".

    I rang the office about it and they said they are surprised she came early as its written in big letters on my file to not come before 11am!! What part of I often have insomina so arent always out of bed till 11am do not people understand!! The office was very sorry. I wouldnt not have been happy if she had woken me up as that leaves me wrecked for the whole day. (I should of double checked seeing she ignored that that she isnt coming wearing perfume either).

    So Ive had to make another appointment for tomorow (and told them they'd best be here when they are supposed to be as in the afternoon my support workers and if they dont came when we've arranged I could could be out).

    Tomorrow I have builders coming too, doing renovations according to what physio thought needed doing in my house to make it safer for me (she was worried I may fall throu the new shower screen which got put in after I broke the other in a fall).

    I have the phone appointment with the psychologist later today.
    Last edited: Aug 20, 2014
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  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    While the pre-printed letter may be nasty, since the office said they were surprised and sorry that the nurse came at the wrong time, I do not think they are unhappy with you. They have no reason to be.
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  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am not implying that you should bring a court case. I am healthier than you and I don't think I could handle it. But if needed, you do have witnesses.

    Even in dealing with some of your health care providers, if the disability service refused to let the caretakers provide information at your request, it would make them look bad. It would be pretty obvious that they were trying to hide something.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The nurse was clearly wrong to turn up before 1100, but maybe she didn't actually wear perfume last time, as I said earlier - she may have picked it up from somewhere, e.g. another client. I know that you have previously found that perfumes picked up in this way didn't last long, but it will depend on the specific mix of chemicals and the formulation, e.g. nanoparticles.

    This page for example says:

    I have studied artificial perfumes in great depth and tried to get articles published on them, but no one seems to have the guts to publish, maybe because the industry is so powerful.

    I hope the builders have been instructed not to leave a lot of mess for you, and that the psych appointment goes well.
    Little Bluestem likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    1st therapy session 2014

    Well right now Im not in a good mood at all as its triggered off my ME/CFS and Im sick cause of it so now are up at 3.40am in the morning with a sore throat which kept on waking me up and now just feel angry (cause Im needing and wanting sleep and keep running throu the therapy session over and over in my head).

    Its not the therapist, she's nice but the issue is with me, I feel therapied out as Ive done so much therapy in the past that Im still sick of it. Its just I remember of all the therapy I had in the past for what I see was useless (all the DBT) so its an annoying thing to think of and of cause a therapist trying that kind of thing again now, just makes me think of my history with it. All the sessions I had in the past when feeling quite unwell and getting NOTHING out of it but just using up my valuable to me energy.

    90% of ther therapy I did in the past (except if it was supportive therapy, that I do find helpful) was useless to me as they were just techniques Id already tried or read about in books and tried and yesterday it felt like the same old thing, so left me afterwards feeling angry as Im putting in that effort on the phone with the ME/CFS and the Aspergers and its like "Ive been there, done that" all before.

    She probably doesnt realise that to me it is the same old thing, but telling me to study something (something I have no interested in at that either and is a waste of my brain cells, studying anything causes me to start burning up brain energy), is the same old. She told me to study my hand to calm down after telling me to study my room which failed as all that made me do is feel more upset as when I study my room, its in my face all the unpacked gear in boxes and mess Im not well enough to be cleaning. Its something I try my best to switch off about and try my hardest not to be noticing.

    Then at one point so told me to distract myself with the TV, which further upset me as I cant watch my TV due to all the boxes unpacked in the lounge bugging me.

    Anyway, sick right now from the session (my throat hurts :( (which is making me feel against therapy as I know this is a consquence of talking too much on the phone to her). Thinking it over and all I feel is angry about it while thinking back of the suggestions I couldnt do, which makes me more aware then ever just how abnormal things are here for me and how Im missing out on the things which normal people can do. (I hate the hit and miss process of therapists who do not know what ones life is like (my Aspergers mind holds on to the the things said), telling me to watch TV when I dont have a suitable room to be watching it in so dont watch it, isnt much different to telling me to do something like go for a walk to calm down. IT REMINDS ME OF WHAT I CURRENTLY CANT DO!).

    Anyway, for me, that first session wasnt a good one (it makes it harder for me when Im trying to deal with unsuitable suggestions at the same time as trying to calm down over trying to talk about topics eg disability services which upset me). She has messaged me asking if I'd like her to see if she can find me a church group or something to help me unpack, now that could be helpful. She also did ask me if there was any letters she could do for me, so maybe she will do one for the disability service.

    Being up at this ridiculous hour due to my throat, is just reaffirming to me that Im right now too sick really to be doing therapy before my other health issues are attended too. Its a catch 22, I do need some therapy right now. I wish my phone had some kind of protective cut off button I could set to have made sure I didnt stay on the phone too long with her.

    Next session she wants to go into something that Im not seeming to relate to at all (Im being stuck on word terms with my Aspergers so didnt relate to words she's using cause I dont use those words.. Im going like in my head "but I dont think or say that" but she's wanting to go into thoughts using those negative words I dont even use so cant relate to at all. Im just feeling like this therapy is useless

    ***augh at myself, the fact Im currently so down over everything and feeling a hopelessness isnt helping her help me***. (and the issues Im running across, are partly related to my Aspergers (why study a hand for no reason, its boring and an effort to hold my attention on, it annoys me as much as someone being trival and talking small talk) and why it took over 6 therapists in the past to find one I could relate too.

    The other is when someone tells me to focus on something (mundane) to distract me, I then cant focus on my normal coping mechanism which works best for me which is watching my breathing and calming that down. My brain with my ME/CFS makes it too hard for me to hold my focus in more then one area at once. Its like she's tried to bring in a stragety which I know doesnt work well for me and in the process have me loose what does help.

    She also suggested music to me which is something I hardly do as it can be overloading on my ME/CFS brain so I rarely listen to it. Noise (in any form) isnt peaceful to me but just brain stimuli to my ME brain which craves quietness and stillness. I had been hoping she'd be more in tune with severe ME and the problems we tend to get (I think of of us who have this severe would have issues with "noise").

    I really wish she'd get to know me first before making suggestions to me which are unsuitable (to which I then later dwell on and feel even more a hopeless case). It reminds me of all the people one comes across which say "try this, try that" who dont understand.

    I wish my sore throat would go away :( , I cant even have the propolis throaties anymore which used to help as they are full of sugar. I have a busy day later with 3 different lots of people coming (the builders, the blood nurse, and a support worker to help me do stuff), and here I are in wee hours of morning with pain in my throat and hence unable to sleep :( I hope I dont go breaking down in tears due to all this today.

    I cant wait till the weekend when I can REST!!!
    ..................

    To whoever who mentioned about builders cleaning up mess. Well nope they dont tend to do that, last time they left my whole bathroom a big mess. (at least I have my support worker coming later in the day so she can clean up for me whatever mess they make).
    Last edited: Aug 21, 2014

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