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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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    It sounds like CSI is anything but supportive. :( It is good that the chemist is accommodating. Can your doctors FAX your prescriptions to the chemist?
  2. taniaaust1

    taniaaust1 Senior Member

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    The above quote was my post from June the 4th... and they took one of my support hours away that week too which was supposed to be covered by me being taken to get my blood test done.. So that was one hour I was then down on my support hours.

    Then this week, same again.. someone didnt show up on the Tuesday so I missed another hour of my support time. So that is now 2 hours of support time Im down. Then today I ring CSI as no one rang me back since I spoke to Adam to confirm me being taken to my blood test which Adam said he'd sort out seeing Ive already been let down by the agency so much (but he said to make sure its confirmed). Nor has anyone from CSI rang me to tell me why my shopping support person didnt show up on Tuesday this week nor last week still... anyway.. Im in tears right now due to the latest phone call.

    I got Magaret on the phone who firstly tells me NOTHING has been arranged for me to be taken for blood test tomorrow (which is Friday 14th) and she told me I should let them know a couple of days before **sighs** (Ive rang sooo many times now to try to arrange support to be taken for blood test.. for support hours which were supposed to be arranged and I was only ringing for conformation that it had been arranged).

    She then told me that they would have to take support time away from me for it.. when they are already behind 2 hrs of my support time (I started crying at that point as this is so ridiculous), which she didnt believe me and actually denied that was the case (thank God Im keeping records now and also got my other support worker who can back up that the second worker isnt showing up). I cried as Im being treated like Im lying which its the agency and its worker who isnt showing up who is screwing up.

    To top that off. Margaret not only wouldnt listen to what is going on here but when I asked her what happened and why that worker who she told me would be coming to take me for my blood test a couple of weeks back didnt come.. one SHE herself had told me was arranged.. she then actually went and denied she'd even spoke to me on the phone!! (Im being very careful nowdays get names.. I'd suspected she'd lied to me once before but with my memory issues wasnt sure, but this time I KNOW she has, not only do I remember it was her who I spoke to previously about that, I also made a note of it in this journal so even know the date I spoke to her.

    I tried to get hold of Adam (it was about 4.15- 4.30pm) about how Margaret is saying she knows nothing about me needing someone to take me for blood test and also the fact that I arent getting the support hours which Im supposed to have but Adam wasnt there.

    As Margaret has lied and denied that she's spoken to me on the phone at times (and she's the one I get put onto) and it wont surprise me if she denies Ive rang and spoke to her today so I spoke to a cathy (the first girl who picks up the phone before I get transfered over to Margaret) and asked for her to note that Ive phoned them today and that I spoke to Margaret. This sucks.. I cant trust Margaret anymore due to what she's doing. She's the same person who a while ago trivalised my illness when I complained I needed more support hours and said "your house is probably no worst then mine. I dont know if she's hopeless at her job or if she is biased towards ME/CFS.

    What does one do when one is having to deal with someone at an support agency who tells lies? to the point she denies our calls or what she's said to me. What does one do when the main one who arranges things at an agency insists you are getting support hours they actually arent giving you? and who wont believe you when you tell them the person isnt showing up? This CSI agency is terrible. I never had any issues like this with my last agency (C.L.A.S.S), they were fairly organised.
    redrachel76 and Valentijn like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    My boyfriend has just got back from India and will be coming to see me tomorrow.

    I'll get him to give me some emotional support when he does while I do another two letters to the agencies Im having issues with as Im to the point now where Im stressing out very much in having to do more letters over all this (its to the point in which just thinking about having to do another letter over the issues is making me want to cry).

    Poor guy, Ive got a list 14 things long on things I want or need him to help me with currently (that's not even the big garden jobs). Its going to probably take 2 months of his short visits to sort out things I need his support or help with (that's not counting any unpacking). Got to get him to take me to the hardware etc tomorrow (stuff broken) as my support worker cant take me there cause hardware isnt in my local suburb so not allowed (DisabilitySA rule placed on my support)..
    Valentijn likes this.
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Could you put your boyfriend to work at getting you more support hours? He, more than anyone, must know how much you need them. ;)
  5. taniaaust1

    taniaaust1 Senior Member

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    Update of the long running saga to get the disability services I need in place

    Today I spoke to Adam again from the complaints dept of CSI (my support agency) to find out why my support service (this time something he was arranging) had failed yet again. He seemed a little shocked (one could of heard a pin drop) when I told him no one had turned up once again to take me for the blood test, he said he even had followed up on it there to make sure and had been told by other CSI workers that I was taken for it as he'd arranged. (I should of asked him WHO he'd arranged it with and had told him that, it was probably that Margaret person? who Ive been having all the issues with).

    Adam the complaints person, appologised to me again and told me he's now going to contact his manager who will ring me tomorrow to put some plan in place to stop what is going on.

    I told Adam on the phone this time, there is no way I want to be dealing with Margaret in the future seeing shes been so insulting to me (trivalising my illness, lying etc).

    My support worker (Julie) told me today that her other clients are also having issues currently with the agency (cause agency arent coping as they are way understaffed, they had two of the managers leave for better jobs and they havent been replaced). My second worker DID show up today and was shocked I hadnt been told by the agency that she wasnt coming last week and the week before (she said they knew) and, she'd been told another person had been arranged to replace her..
    .........

    All the sorting out I need to do is being a very slow process as Im only up to doing this stressful stuff on my better days (I have DisabilitySA still waiting on me to respond back but I really do need to pace out all the stressful stuff or its way too much).

    Boyfriend got throu 2/3rds of the list of fairly important things I had for him to do yesterday (not including any of the big jobs).. we ran out of time thou so I still havent been able to order the supplements Im out of (Ive lost passwords and the passwords of the email account my paypal is attached too.. my boyfriend usually keeps backups of everything), he didnt get time to help me with doing the second letter (or finding the one I half did and lost) back to DisabilitySA (He got quite stressed out with something else I had him help me with). Ive confused all my bills when my boyfriend was away and now dont know what Ive paid and what is overdue (many phone calls have to be made to find out, if I havent paid my phone bill like "I think" I did, means I'll be getting a $15 fine on top of the bill). My memory issues creates a lot of extra work and stress for me.

    Lots of stress but really no way around all this... I feel real sorry for anyone sicker then me trying to arrange services for themselves, it would be impossible!!
    merylg and Valentijn like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    He only too well knows how much I need them, my situation and the mess here, really stresses him out at times (at one point he didnt even want to be walking on my floors as they were that bad, covered in ant rid there for ages etc). My boyfriend has tried (spoken to the other DisabilitySA office quite a few times in the past before.. he's usually great at sorting things being previously a manager of a big steel company but he hasnt had any luck either as far as sorting out DisablitySA goes)... Its the doctors I need supporting who could make it easily happen for me. Its always the lack of a ME doctor to support my case (doctors not understanding as they dont have a clue on ME) which has been the issue.

    I could call on my boyfriends help now that he's returned on helping me with dealing with CSI (so far Ive been doing that all alone) but hopefully tomorrow when I speak to the complaints manager, that will get sorted out (thou I still should send in a proper complaint letter too in case things do continue on bad).

    My boyfriend thinks I should get a scooter.
  7. GcMAF Australia

    GcMAF Australia Senior Member

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    Tania
    :)
    I will be in QLD for 2 weeks
    take care !
  8. taniaaust1

    taniaaust1 Senior Member

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    Sounds great :) .. it would beat the cold weather here in SA right now. Have fun.
  9. taniaaust1

    taniaaust1 Senior Member

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    3.15am and Im up now cause I slept almost 8hrs so up now for the day (for however long I last).

    Starting out from my feeling at my best baseline line, I wasnt able to manage having people here two days straight for short times, helping me without a wipe out. :( That shows Ive deterioated just in the month my boyfriend was away (Im on a slow downhill slide with just trying to survive).

    My support worker only comes for 2hrs and my boyfriend who is back from overseas, was only here helping me for a few hours and I was then to the point where I couldnt stay awake within a couple of hours of him leaving (I was resting doing nothing immediately after he left).

    The normal.. too tired to cook, I wasnt even capable of getting myself a drink without a disaster (Im about to, after this post, clean up all the shattered glass all over my kitchen floor from yesterdays getting myself a drink attempt, that odd glass was a real shatterer) as all my perception of distance is so screwed up when Im that tired, so placing things be it a bowl or place of food or a drink, onto a cupboard is often misjudged (if the things arent dropped before even reaching the cupboard!! When like this, I often drop the milk while trying to pour it).

    Having fallen asleep yesterday 3 times before 7-7.30pm (and then the smashed glass everywhere cause I was attempting to stay awake), I ended up giving on that one as it was impossible so ended up going to bed for the night.. so hence now Im awake at 3.15am with all my sleep time screwed up yet again.

    There is no way I can cut anything back more as far as people coming to help me goes (which is exhausting me to that point). I need the support worker to come twice a week and my boyfriend comes twice a week to help too (boyfriend helps . Seeing just having my support people helping me are exhausting me so much to this point now, I will be in big trouble if I get sicker.. this whole situation is a huge worry, there is no leyway currently at all for me to get worst and be still able to pace things well, as it is.. cant pace well right now to just have a clean decent house, food etc with support. Im to the point now where I dont know how I could deal with more support and still say well.. possibly getting extra support may be coming too late for me.
  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I agree. Is there any way you can actually get one?
    Valentijn likes this.
  11. tandrsc

    tandrsc

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    I sympathise. This time last year I was in the same place.

    I have done my best to pace for the last 20 or so years by breaking tasks down into smaller tasks, having rest days and dropping anything that doesn't really need doing, but I still watched my health deteriorate.

    The thing that has really turned my life around is very strict pacing. This is how I've done it forum.chronicfatiguesyndrome.me.uk/index.php?topic=16211.0

    I don't know if this would help you, but it has made such a difference to me that I wanted to mention it.
    taniaaust1 and Little Bluestem like this.
  12. taniaaust1

    taniaaust1 Senior Member

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    That's something currently possibly in the process of being arranged (Im trying to get DisabilitySA to treat me how I should be being treated, those who need scooters/wheelchairs are usually provided them throu this org) and has been mentioned during convo.
    Little Bluestem likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    This year (I assume it has been this year as I hadnt come across this problem before this year).. Im finding that some of my prescriptions (dont know yet about the others) due to a new rule when I go to get them, there is now a hitch due to system changes.. I can either get the prescripion for the normal cheaper pension amount in which I then loose all repeats on it (I also then loose the safety net we have here on them, that once one gets to a certain amount in a year for prescriptions, one then gets them for free).... or I have to pay more for it but get to keep the repeats. I hate the new changes as with my diplema on then loosing my repeats, if I want the normal pension pay cost.. means I then need to get to a doctor again to get a new prescription (and of cause seeing as Im not able to often get to my medical appointments, this new system rule here is quite an issue if I want the cheaper prescription med costs).

    Ive only rarely had a doctor do a new prescription for me without telling me they need to see me to update my process etc. So thou fortunately chemist is being great... I still have a problem with getting my prescriptions (so Im trying to conserve some of my pills for some of my worst days as I know that when I run out I may not be able to get more for some time).
  14. taniaaust1

    taniaaust1 Senior Member

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    Hi there.. I just checked out your pacing post as I was quite interested in what pacing method you were using..

    (quote below is from tandrsc's pacing thread).

    Ive experiemented quite a bit with set pacng schedules like that in the past but didnt find they helped me any more, then my current way of pacing and at that time I was better with the ME then I are currently.

    I used to have a 45min activity pacing plan (two sessions per day.. one 45 mins activity in morning and one at night) but then I went and suddenly dropped it and experimented quite a lot with far more activity sessions per day at 15 mins of low level activity.. followed by 45mins rest (5 mins rest does basically nothing for me and after I shift postures it can take 5 mins or more for my base line pulse just to stabilize... if I lay down it can also take that long to get to a base line.

    Cause my ANS dysfunction is so bad.. every time I change posture my BP (and heart if I stood) takes time to stabilise.. eg every time I go to stand (or even sit if my ANS is being worst) it can be bad (my BP can swing to 170 or more within 1min of standing up or I go into the POTS). So the more Im getting up and down.. the more my strain on my body as my autonomic nervous system is all over the place with my body fighting to readjust it anytime I change posture. Im on Clondine for my swinging BP but dont know how well its really working thou I do know its helping some (also on Florenif and other things for my POTS but they dont have it controlled).


    I found (when I was weller then I am now ) with 15mins low level activity and 45min rest periods following each 15mins, that I still have the same amount of activity per day that I can do.. it made no difference to my body at all if I was doing two 45min activity periods only per day or 15 mins ones with 45min rest times.. I'd still burn out around the same activity time amount (if one adds up all the 15 mins activity periods). It seems for my body, for it to be the complete activity time in a day which seems to matter to me.. it has a set activity limit to which it cant be taken over per day without ill affects. It seems to need a full day to recover from even doing low level activities for very short time spans like you've used.

    * I still found I needed full day rest periods after my maximum with the short 15mins periods with 45min rest periods between was reached. So at that point switched back to my normal pacing schedule which I find easier (as one isnt making oneself get up so much and hence just easier).

    For myself, activities certainly arent equally symptom causing for me.. how much they affect me does accord to what the activity is. Some affect me far more then others thou all activities except if Im doing proper resting ie laying down resting, anything else impacts me. Sitting at a sewing machine even eyes closed, isnt relaxing due to my orthostatic intollerence and hence a body stressor. In my case the activity being done has to be considered too eg If Im standing trying to scrub clothes.. I can only do that activity for about 45 seconds before I start getting sysmptoms and start going downhill.. fast repeative body moments are very hard on me, combined with standing.. I'll need to rest some after that activity after 1min (I actually have to stop that activity more then once during the minute as I cant do that constantly for 1 min without my muscles dying on me..by dying.. I mean they become very hard to move and can actually start to become impossible to move well (like all energy to my mito has gone) and also giving me pain.

    I also need to lay down some during rest periods due to the POTS (so some of my rest period is spent in bed), just being upright too long even if only sitting will start giving me symptoms due to it eg just sitting in a doctors surgery waiting too long can make me collapse. I can be getting sicker and sicker, while just sitting (sitting isnt reallly rest to me).

    Maybe if I didnt have such severe autonomic issues with postural changes.. even smaller activity periods with more getting up and down (which I find just the getting up to be expending energy, its very tiring getting up and down, up and down) I would try but due to the effort in changing postures and my bodies response to doing that, I havent bothered trying 10 min activity periods so will assume that I'd have the same issues with that as I did the 15min activity periods with my body still burning out once a certain activity point is reached. (I dont know how much that relates to the POTS or to my general ME).

    My pacing includes basic things such as dressing... I only actually get dressed if someone is coming to help me (and even then dont always).. so usually only dress about 4 times a week. Every activity I do including that, is included into my pacing and considered (Ive found it best for plan my pacing over more then a 24 hour period esp since I do preemptive resting ect day before some things). I shower only once or twice a week..everything in my life is basically restricted as pacing is always being considered. (I can nowdays, after many years of pacing experiments, pace well without having to watch a clock and know when Im going to be heading into pushing myself too much).

    Thanks for your post, I do think its very important to know how ones body reacts to things like this, Im sure it could help some others who havent already tried this (thou do think some will need far more then the 5min rest periods ..eg time periods of 1:3 (1 activity: 3 rest) rather then something like 2:1 (2 activity:1 rest) and those with severe OI will need to lay down (so will have to include the walk to a bed or whatever into their activity time for reach rest time).
    Little Bluestem likes this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wow, that just sounds so stupid, should be able to keep repeats and get the pension rate. frustrating
  16. taniaaust1

    taniaaust1 Senior Member

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    Update 25th June

    My body is unfortunately following the same pattern "most" mornings since I over did it last week, of waking up at some ungodly hour it was 4.30am this morning so Ive been up since then.. and no good me laying in bed as I cant go back to sleep so I get up and then within 1-2 hrs (sometimes I last a bit longer) then I need to go back to bed. This has so screwed up the routine I had previously gotten into. Im not sure what to do at this point to get some routine back as now Im asleep all over the place.

    Due to a situation I mention below (re phone call), I had to with my boyfriends help, repave my new garden/spare room shed floor (my brother-in-law who previously did it for me..after telling me he'd lay plastic under the pavers didnt do that :( .. so I cant put any of my spare room stuff into the shed as it would deteriorate or even rust with the dampness. I have a lot of expensive material and that in which I hope to get back to doing sewing when I get a sewing machine again among with other things, which I dont want wrecked). Thou I was doing the paving sitting on the ground (with boyfriend passing me pavers) I was left feeling very ill after that so had to go straight to bed for the rest of the day/night after doing that). We didnt get it finished but its ALMOST done now (another 15mins work on it and it would of been finished, I was just incapable of doing more even with me just sitting). Of cause NOTHING else that day got done cause I'd done this (not even any cooking).
    * see my previous photo of my lounge room which is basically not useable currently to see what a state things are here, I so need a lot of that stuff in the shed!!

    Helena of DisabilitySA rang me (waking me up) yesterday morn (24th June).. saying they are going to grant me a once of thing of some extra support hours to help me sort my lounge room out and unpack (and hence why I now urgently need that shed finished as I want to be able to take the most advantage of this offer for help and will be able to use it to also help me get stuff into the shed). Im not sure how soon I will be recieving those extra hours but they may be very soon (and the hours Im granted always expire at the end of each month no matter when they were given). So its become a race against time now to fix the shed I had to get when I moved in, so it can be used and is ready so I can get help with getting stuff out there too.

    As I'd been fearing, she did tell me thou that they are not going to approve me getting added regular support hours (so hopefully the complaints commissioner will end up sorting out that issue) and even went as far as saying that I should do more dishes myself, commenting on how much of my support time is being used on dishes. They certainly arent understanding how standing jobs due to my POTS is worst for me then doing anything else. She also asked me how are I doing the cooking if I cant stand to do dishes obviously completely forgetting its in my complaint that Im struggling too to cook as well!!

    She asked for me to urgently return the consent forms so they can access my doctors for info (I wanted to send it with my reply letter to the letter which came with the forms but havent as yet been able to do my reply). I suggested to them once again that they contact ME/CFS SA society over ME/CFS for info on it rather then my doctors (who dont know much about ME at all) and who are hardly even seeing me as I cant even get there but she said info from ME/CFS SA is really no good to them as they need the info on my illness coming from doctors **sighs** Im going to end up screwed as with not being able to get to my doctors or having doctors who are naive on this illness, its going to just be trivialised how sick I are and they are all what DisabilitySA will go by by what they are telling me.

    How does one get the support one needs when doctors are not being trained in our illness so dont know enough about it to even realise how sick one is... but the Australian gov Disability orgs wont get advice on the illness from our states ME/CFS societies and hence get the info on our illness from doctors?

    Anyway.. Im going to have to get that form in without my letter response, so they can contact my doctors (many of which havent even seen me due to my transport issues for a very long time).
    .............

    Saga of my CSI (my support agency) issues continue... the complaints dept there now is letting me down.

    First I complained about workers not showing up so me not getting my support hours Im supposed to have, I then loose these hours if they arent used. Adam of the complaints dept said he'd sort this out, it wasnt sorted out thou (he thought he had been as someone there had told him it was so he didnt know it hadnt been till I rang him again to say I'd just been let down another 3 times by workers not showing up).. at that point he said he was passing the issue onto his
    manager.

    I was told the manager would ring next day (June 19th) at a certain time. I then got a call saying manager wouldnt be ringing at that time as they had a crisis there but would ring later in the day so then was waiting on that call (he didnt thou ring back that day). Im STILL awaiting a phone call back. (this is what has been going on, I ring and ring and issues at that agency are never sorted, people dont ring back etc. Im going to have to ring them YET AGAIN). Im still yet to write a complaints letter in regards to all this (a situation which has been ongoing ever since I got put with this agency) and all the missing support hours Im "supposed" to get which are already funded for.

    Dealing with the agencies is burning me out. I really could do with an advocate to be dealing with them for me. Im so burnt out by things that Im hardly even getting online, the pacing Im needing to do is also keeping me away a lot, I cant add much more activity in. (Im going days at a time without even getting onto computer as Im too much needing to rest). Im making special effort to record some of this here which makes it easier for me to then find dates, names of those Ive spoke to etc when doing the complaint letters (and hopefully sooner or later some media will pick up on this and I'll be helped to get the help Im needing).
    Little Bluestem likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Yeah.. I assume this change would be in all states here??? I dont know if it covers all prescription meds yet or just some.
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Even if you have to go the the doctor to get the prescription issued, if the doctor would FAX the prescription to the chemist, it would save you the trip of taking the prescription to the chemist.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    That is a good idea. It records the information for you and lets us know how you are doing at the same time.
  20. taniaaust1

    taniaaust1 Senior Member

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    The BIG problem I have due to my condition severity is that I cant get to the doctors who give me the prescriptions I need, eg I was due to go back to one of my specialists first week of Jan (meant to have more blood tests which are monitoring some of my conditions) but didnt manage to get there till May (I ended up having to cancel out three of his appointments straight as I didnt have transport on the day to get there and Im unable to use public transport.. once I was completely bedridden that day so it wasnt a transport situation).

    With the prescription situation, thou its great chemist can bring a medicine to the door, as I have 2 chemists in my suburb.. my support workers would be also able to pick up my meds if I couldnt be taken there.

    The lack of suitable transport for me (transport I can use eg without perfume exposure and I can also need the transport to pull over so I can lay down if needed or be able to lay in the transport.. if Im about to faint or getting terribly ill due to being upright too long) is a MASSIVE issue.

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