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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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    Tuesday (after I made Tuesdays post).. ANOTHER let down by the support agency (this seems to have become a weekly occurrance :aghhh: ), once again one of the workers didnt show up to take me on my weekly shopping trip down to local store (my other suppport worker was peaved off about it too as we wait the other worker before I go out). I was so exhausted by the time we got back from a very basic food shop that I had to go straight to bed and sleep and was then too unwell to be ringing the agency to say she didnt show. I just got up finally this morning.. ended up spending 36hrs in bed to get back to my baseline after my 2 hrs support on Tuesday and boyfriends support on Monday.. result 36hrs of being then wiped out (not cooking, not showering.. just laying in bed, too exhausted to be able to use a computer).

    So I texted my boyfriend to get him to let them know (the Complaints person Ive complained about this situation to twice now, has told me that I need to be ringing the agency on the day when people dont show up to let them know.. hard to do when I have another person here Im trying to tell what I need done or are completely wiped out after that support visit). Ive got my boyfriend to request that some of my support time be made up on Thursday when my other carer comes (Im soo glad boyfriend is back to be doing the things others are expecting from me, when Im far too sick to be doing them).

    Anyway the agency CSI.. like per normal, it hasnt rung me back so Ive no idea if they are going to send that second person to make up some of my support hours or not. A situation Im "trying" not to stress over as they currently owe me 4 hours and if not reolaced by the end of the month I loose them. Its very hard not to stress when I NEED that help (Im going without meals again.. too exhausted to cook during 36hr post exertional wipeout.. ah well on the bright side, due to that and me not cooking and eatting, I dont have hardly any dishes for the support worker to do today and hence will get her to use up the time she would of spent doing dishes for me on helping me make up a big pot of soup today (Hopefully she will show up, she was working with a bad headcold on Tuesday but knew I desperately would need her so came anyway then, I sent her home half an hour early cause she was so sick, which she was going to make up today if she's well enough and if Im well enough to have her here that extra half an hour onto my normal time).

    Support worker comes again today for a couple of hours.. fingers crossed it doesnt just send me right back to bed again.. I felt so depressed there yesterday as I like to at least be okay enough to be able to use a computer and hate it when Im too exhausted to even be doing that.. I then get so so bord with only my declining condition to think about, nothing to distract me from thinking about it. Too exhausted to read. I couldnt even read the big headings which were 4 times bigger then the normal writing on it, on a DVD which I watched, to my surprise the exhaustion severely affecting my long distance sight (from bed to TV) too (its been quite a while since I last had that going on, usually when Im suffering from exhaustion, only my short distance sight is affected and can blur).

    I really really hope today Im back to "my" usual baseline). I so so hope that second CSI person comes at the same time (as its too draining on me to have people here longer, it would crash me even worst then what is going on now). If I continue this badly.. Im going to have to change how my support time is given to me and have them here for periods of less then 2hs but to request another change to cater for my worsening condition, it would probably then leave me with less support time being used as this bad agency says it hasnt got many workers in my area (thou I live in city now) and Ive found can take a couple of months to find me a worker. (Disability services had previously put me with a well organised one but pulled my contact with them when they decided the other agency charged too much and they didnt want to pay for it).
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    The CSI complaints dept manager never rang me back (cant remember how long Ive been waiting now.. 2 weeks??.. It sucks as all up now the complaints dept have been rung 2-3 times over this and the whole thing thing still isnt anywhere near being sorted out). My boyfriend helped me today get together a good letter (he stops me rambling on in a way with letters in which they never then get finished and sent). Im going to send the following letter tomorrow via registered mail (so they have to sign for it as I dont trust them as they are so unreliable)

    "
    To the Complaints Dept,

    Im writing in regards to the issues Im having with CSI and putting my complaint now in writing. Ive made numerous complaints to people who I deal with via phone and after no resolution ended up phoning your complaints dept on at least two occassions but I havent been phoned back like I was told, so things STILL havent been sorted out and once again THIS MONTH I LOST some of my support hours (3 hours!!) due to the issues after being reassured the issue would be followed up and resolved.

    The following are the main points of my concern

    1. I keep loosing my support hours due to people not showing up and the hours are not replaced by the end of the month. Note* There has only been ONE month since Ive been with CSI in which I actually got the amount of support Im supposed to get each month.

    2. Very poor communication and often complete lack of communication. Those at CSI dont tend to call me back. Also when someone isnt coming, I are not advised a worker wont be turning up.

    3. Repeatively, when I get fill in workers... they arrive wearing perfume, this has made me quite sick at times and I also had to send someone away due to this. Ive told CSI numerous times to make sure who they send isnt wearing perfumes or chemicals (or have air fresheners in their cars if Im being taken out somewhere). The fill-in workers tell me they werent told.

    4. I have repeatively advised that owing to my disability that Im not to be rang before 11am as I often have insomina so often dont get to sleep to early hours of morn but this at times isnt adhered to.

    5. Margaret.. I dont want to be having dealings with her anymore as she's been quite unprofessional and I cant trust her now with things. For example. 1/ telling me she's arranged for me to be taken for a blood test and had found someone to do so, she actually hadnt done this. Ive fasted TWICE for blood tests and had no one then turn up from the agency turn out to take me. 2/ My house was a hellish mess due to not having enough support hours and on top workers not showing up eg floors didnt get done for over 6 weeks or longer due to not all my support hours being filled. When I complained to Margaret about this.. her comment was "Its probably no worst then my house" (trivalising my issues, when she had no idea just how terrible my house was). 3/ She's implied I lie eg When I told her that I was owed time by CSI as a support worker wasnt showing up.. she goes "that's not true!" (and wouldnt listen to me). The missed hours I ended up loosing.

    6. Even the Complaints Dept when Ive been promised I'd be gotten back to ..havent called back. Adam told me the Complaints manager would phone me and sort out this stuff.. Im STILL waiting for a phone call from the Complaints Manager as promised.

    Please let me know what action you are going to take to solve these problems.

    Thank You.

    Yours Sincerely
    Tanya Selth"
    ............................
    So one letter down.. (others due to the other isses Im having with other depts and places.. still to sort out).
     
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  3. Sea

    Sea Senior Member

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    Well done Tania, very clear. You've been treated terribly. Is there an ombudsman you can complain to if this is not resolved quickly? I don't believe the government would be prepared to keep paying this support company if they're not fulfilling their duties to clients.

    One thought about you being rung before 11:00am - can you just take the phone off the hook before you go to bed and hang it up when you get up so that you can't be disturbed?
     
  4. taniaaust1

    taniaaust1 Senior Member

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    I currently have a compliant in with our health systems Compliants Commissioner about it all but that about the states disability services rather then this agency.. the states disability service has even been worst!!! (with complete rejections of me no matter how sick I was in the past). (a professsional here also put in a complaint for me throu there), thing is from there.. all the crap Id been going throu over years with them.. well it wasnt in writing (all my dealings with them over the issues and their knock backs had been done all verbally), so they got me to basically start again and put everything in writing to the ones Im having issues with for them to try to resolve it :( . So long process again to sort rather then something I thought when I put a offical complaint in, fast.

    So be warned anyone who tries to complain and deal with things by phone, if you have to them complain to higher up places eg the Complaints Commission.. they may want all the dealings done in writing first and if you havent done that, they will have you trying to resolve the issues all over again (but this time in writing).
    ............

    The complaints manager of the support agency, NEVER rang me back like I was told. Adam (the one under him who I'd been dealing with by phone and had wanted to pass my situation up higher after it had failed when he tried to sort out due to others there giving him wrong info or not doing what they said they'd do), well he's now going to come out and see me on Monday to discuss the issues. (which isnt great as then I wont have what we discussed in writing if I need to take this higher up to complaints commissioner to and they could do to me with this what they did to me with DisabilitySA and make me try to get everything in writing).
     
  5. taniaaust1

    taniaaust1 Senior Member

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    Sleep or rather Exhaustion Issue

    My sleep routine is currently completely ruined, has been for the past few weeks so Im up, awake again this morning at 3.55am (and will probably be going back to sleep at 11am if I dont manage before that to do so). This is worst then my insomina (Im right now wishing I had that back) in which I dont get to sleep till 2-3am and then arent getting up till 10.30-11am as at least then I had a sleep routine!! which I could plan stuff around.

    Right now I cant plan anything at all well as I dont know at what times I will be asleep and at times it means Im then having to FORCE myself to stay awake due to things like appointments with others (which means Im not really capable of doing things well at the time, screwing everything up even more then usual as Im too tired and its horrid having to force my to stay awake ..getting up waking around to, over and over, to stop one from falling asleep and of cause doing that is even more exhausting so it just then makes me sleep even longer when I do).

    Last night I was asleep before 7.30pm (I feel asleep doing something and woke up some time later). This has been happening to me nearly every night the past couple of weeks. I fall asleep doing things as Ive just got too tired, waking hours later but still desperately needing more sleep (this falling asleep early leads to broken nights sleep). Sometimes Im falling asleep as early as 6pm (then having a 3am wake up time..then needing to go back to bed at 10am).

    :( Im still trying to stick to my old routine (which dont work as I just fall asleep at computer or whatever Im doing.. watching tv, reading etc.. I'll fall asleep) and telling people not to ring me before 11am but right now even if they ring after that, it is likely they could be waking me up due to the so messed up sleep routine.

    This is all the result of my routine becoming messed up as I had to do too much to try to fit in with people who come to help, help I do need (so making myself too tired) and once messed up (Ive 3 times in the past week told people wrong things who are trying to sort things out for me, screwed appointment times up etc, this is then making me have to try to get hold again of hard to get people in the first place or having to wrote more letters to correct the wrong stuff Ive said :( .. its creating even more work for me..even when I write a letter to correct something, I still missed correcting something else I'd wrongly said, so now have to do a second letter..this is on top of the responses to letters sent to me which I still need to reply to). I feel like Im being near impossible to deal with, throu no fault of my own.. I just cant give correct info by phone as people ring and expect.

    I screwed up making appointment time this week and other important arrangements, I didnt even know what day of the week it was thou I wasnt aware I didnt know as I thought we were in a different day at the time (so said a home visit appointment was fine for "tomorrow" when asked, when in fact it wasnt.. something as simple as someone asking me by phone "are you free tomorrow?" well I screwed it up. My boyfriend ended up having to ring 6 times or so to fix that screw up of mine..thank God he's back as I wouldnt have been able to cancel the wrongly made appointment and resort dates as I wasnt up to going throu what he had to to fix things). Anyway.. Ive screwed up important arrangements with others (home support and DisabilitySA), THREE times this week (EVERYTIME I had to sort something out), I arent really capable of making these.

    It is extremely hard for me to get old routine back. Right now too due to having done too much over weeks, I think my circadian cycle has changed and is currently less then a 24hr one.
     
  6. taniaaust1

    taniaaust1 Senior Member

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    Helpful reading Aid


    I thought I'd start blogging at times of the useful aids Ive brought due to ME/CFS.


    Arms get too tired, weak or hurt while reading? Are you doing what I was having to do at times and having to try to use cushions or pillows to try to prop your books up while reading? (which sucks as they often then move and fall shut making you loose your place).
    I wanted to share this great device I brought the other day to hold your book up and open, which does work great and Im so happy with. (sorry I cant now think what it was called, I brought it throu a mail order company).

    Here's a couple of photos I took of my book holding aid.


    [​IMG]

    [​IMG]
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I thought you would have had a young hunk holding your book for ya ;)
     
  8. taniaaust1

    taniaaust1 Senior Member

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    Yeah that would be nice. Didnt we all have a joke about that some time ago in the chat? cant remember now if you were one of those, we were joking around with. (I cant remember what we were calling the hunky slaves we wanted to have but we gave them a funny name).
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    I had the home visit over my compaint about my home support.

    That complaints guy was nice as normal but Ive been left feeling not happy about it as he says I will have to keep dealing with the same person who's been giving me all the issues (the person who's said inapprioprate stuff, lied about things, etc etc) as she's the head organiser person of this region for this agency. This other has I put the complaint in about has me so stressed out over how she poorly she's treated my (trivalising my illness etc, all the let downs telling me someone would be taking me for fasting blood tests and then it ending up nothing arranged by her three times etc) that just having to go to her whenever I have problems, well I dont want to (stresses me out and makes me want to cry).

    Now I dont know what to do.. I truely feel like I cant deal with that person. I shouldnt have to keep dealing with someone who's dealt with me badly. What is even worst.. I said that maybe I'd feel better if she appologised for at least some of the things she did but the complaints guy said she dont have to if she dont want to. I dont understand how someone can treat me so badly and not even have to appoligise for it and on top of that, Im expected to keep dealing with that same person.

    (He did say he would keep watch on her for a few weeks but then changed that to up to a couple of months.. I think he noticed my shocked look when he said just for a few weeks.. and that I can ring him and let him know whenever I have an issue and he'll check to see if she follows up up eg support workers not showing up AFTER I've rang her to sort it.. Are I being unreaonsable here by not wanting to deal with her at all at this point? The whole idea is upsetting at this point (maybe I would of felt better if I got an appology from her but didnt. It sounded like they arent even going to tell her Ive put in a complaint as they dont wish to upset her. He did say he would thou talk to her about things but not mention me).

    Would it be unreasonable if at this point I simply refused to contact her and just every time there is an issue ring the complaints person instead and ask him to sort it for me (thou his job isnt organising)? She's already put me throu far more then enough over MONTHS so far and Ive already been told things would be sorted out, but they werent. I dont want to keep going throu this crap and the stress it puts me under.

    and I also from him found out MORE LIES she's told me. She keep blaming the fact that it took so very long to arrange home support for me and also kept blaming why I never got fillins when workers were sick or didnt show up on not many support workers around my area. The fact that I wasnt getting my funded hours met was always blamed on that by her.... well the other guy today told me today there is plenty of support workers around my area and getting workers for people here by their agency isnt an issue. He couldnt understand why she'd say that (Im thinking he may not have believed me???.. he told me what a lovely person she is who cared about all and he couldnt imagine her discriminating against someone or anything like that as I wondered why I was seen by her as not important, not important to send the workers I needed my way.. my support was not important at all to her..

    Should I maybe write to her and ask her why she told me those things I now know not to be true and see what she now says? (her reply would soon show me if she's sorry or not). What would you do in this situation?
     
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  10. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Forcing someone to apologize is sort of pointless because they will say the words, but not mean them. With the complaints guy, I would focus on getting her to stop the demeaning stuff and do her job of getting support workers to you.
     
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  11. taniaaust1

    taniaaust1 Senior Member

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    In Mud

    My post today is about something we all know about, that being FRUSTRATION.

    When not affected by this illness, Im a very independant person who wouldnt just do female things but also male things , tradesperson things etc (even with ME I recently paved my own shed floor in a complicated paving pattern..getting my boyfriend to get and hand me paver by paver, I did paving while sitting the floor. He was unable to help me to lay them as he couldnt figure out how to do the paving pattern I wanted. For once having Aspergers came in handy, I could easily see how the pattern was meant to go even from a poor vantage point on the ground),

    Today, my frustration over things I want done got the better of me, when my boyfriend quit WITHIN MINUTES at removing a stump I really wanted removed from my yard. So I grabbed the big axe.. swung it an hit the stump but couldnt do enough force, just not strong enough and it just bounced off.. by this point I needed to get off my feet, due to the OI so go for the tommyhawk and while squatting, started bashing that stump as hard as I could. I belted the thing in my frustration with the tommyhawk (boyfriend walked off on me in discust telling me not to ask him for help once I made myself ill), till I just couldnt no more, resting, two more hits, resting (more like panting like I was going to die), two more hits etc.

    I dont know, maybe I was trying to shame my boyfriend for quitting at something so easily? I was annoyed to see him quit at something after less then minutes, when I struggle so much with everything I do, every single day. The option of just quitting, is not an option I can take with so many things in my life.

    Anyway.. after 5-10 mins of that, I wasnt so great.. still squatting and about to go arse up, while holding my hands on the ground for balance but about to topple over at any moment, vision blurring The grass was all wet as it had rained so I couldnt lay down and I couldnt even crawl to get to my house door, so I was in a fix. I ended up having to call (it took him a while to hear me as I wasnt able to yell out well, so was there calves burning, trying to get heard), for my boyfriend to bring me some newspapers to lay on out there (which he brought me while giving me discusted looks at my stupid behaviour and then he walked off again), I wasnt even well enough to have him try to get me inside.

    I was out there for quite a long time (possibly even an hour in the cold and wet, the wet grass ended up getting the newspaper all wet, too weak to even crawl.. hence completely helpless, so ended up silently crying to myself (trying not to sob loud enough to be heard as I didnt want my boyfriend telling me I deserved this for doing something so stupid I knew I shouldnt do.

    I then started to slightly loose consciousness (when the world starts fading away) by this point Im laying on the newspaper about to pass out, seeing a beautiful blue colour (I cant remember seeing that colour before), feeling like if I should just let go and drift fully into like a "lull" peace state I was feeling. This was nice.. (it was the closest to having a complete passout Ive been for ages, last time I was that close I ended up completely unconscious and was Im told for 5mins).

    Boyfriend after I'd layed there for so long (far longer then my normal POTS collapses and he could see I would be getting wet), ended up coming over again and thou I said I wasnt capable of it, he tried to sit me up.. which only then caused me to fall forward as soon as he let me go (I cant stay seated when that weak, floppy and not all there really), so fell, face in the mud area of the garden (I was going to fall no matter what I did, but I didnt try to stop myself falling that direction as I was confused where exactly I was sitting, I dont think I even had my eyes open.. I had no bearings of where I really was due to my dizziness etc).

    There I remained for a while.. more wet as I'd fallen off the newspaper and now head/hair in mud. (in his frustration of me doing something in the first place which caused all this, he left me there saying it was all my fault.. I know he was at loss what to do for me.. (I was telling him I was too unwell for him to try to move me which I was.. being at huge risk of unconsciousness). I started loudly sobbing at this point.. feeling a loss of what to do too (I hate situations like this!!), He was annoyed and I didnt have any option but to remain there with my head in mud as I was too weak to move myself, all I could do is remain slumped over in that place.

    He came back 5 mins later and said he was going to try to get me inside so picked up (just getting me of the ground was difficult, I couldnt get myself up and couldnt even help him get me up.. and stood me on my feet (him holding me up from behind, arms around my waist), my arms making this situation all the more problematic as they started flinging themselves about some, I had no control over them (I dont know, I may of almost hit him in the face..I know this was causing him issues as he commented it was making it hard for him to help me) and my body shaking.. He then walked me (with a lot of difficulty), still holding me up with my legs going all over the place, they wouldnt go where I was trying to make them go and almost causing him to take a fall with me, I was as bad as a extreme drunk trying to be walked (the leg drag was going on too).. , he walked me to the door.. where I then flopped again onto the floor and remained there for another hour.. unable to crawl to my bed.

    He had to help me back outside that door a metre a short time later as I needed to pee and there was no way I was going to be able to get to the loo and get myself up on it. So he had to help me back out of the door so I could pee on the path just outside.. I couldnt even raise myself to avoid getting pee over myself and just had to pee where Id landed out there. He then got me the metre back inside the door.

    With me stil .on the floor unable to do anything, my boyfriend then went off to buy me a salad..during which time my phone kept ringing but I had no way to get to it with still being too weak to crawl (this brought to my attention what kind of trouble I'd be in if I was collapsed this state for a longer time then a couple of hours..not even being able to get to a phone.. its a bit scary ). He called back the people on my phone after he got back.. one of them was DisabilitySA.. so I missed an important phone call. He rang them back but they didnt know who there had rung so I still have no idea what that was about but obviously about my disability services. After he rang them.. I asked him why he never advocates on the phone to them about me and my need for a wheelchair (last I heard they were thinking about it (6?weeks ago) but I havent heard anything since.

    I was collapsed on the floor and he had the disability case manager on the phone but didnt speak up in that way, it would make BOTH of our lives easier. Im been trying to get him to understand that I need him to get onto peoples back ffor me to get the wheelchair I should have but have been discriminated against getting so far I believe just due to my illness being ME/CFS.

    I'll try to remember to point out to them I couldnt even answer their phone call to me due to being collapsed on the floor and it being too hard to get me to bed (where my phone was) without me being completely carried.

    Im fine now but it took me hours to recover from attacking that stump with a tommy hawk...Quite a lesson not to allow frustration to influence my actions or I will certainly be paying the consequences very much causing myself and anyone around me issues.

    This whole drama was caused by doing more then I should with my low blood volume and POTS.I think or some kind of eaffect of making my heart work too hard, even thou I wasnt standing, when I was using that tommyhawk). Fortunately unlike my ME crashes.. incidences like this, which can happen very quick and without any real warning, II usually fully recover from in hours but often leave me feeling much stressed afterwards as they made me feel so very helpless at the time and always hit home, of how much trouble I'd be in without help so leave me feling extremely vulerable. If Im outside somewhere and something like that happens (5-10mins excertion is all it may take), I could end up stuck outside in the cold or rain for hours. or even longer. the whole thing is disturbing..
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hi, Tania,

    Your message above should be compulsory reading for the psychoquacks who have convinced themselves (and others) that we simply don't try hard enough and are deconditioned! I recognise your traits as I have them myself. I am also very independent and like to do things myself, and prefer blokey things like chopping wood and DIY to typical female things. It hurts my pride to ask men to do such things for me now, as I imagine them thinking "Yes, you helpless little female, me big strong man!"

    Things went really badly wrong, didn't they? I wonder why your boyfriend didn't take over again when he saw you struggling - did he think he wouldn't get through the stump? Maybe you could have burned it out instead of using brute force? But then maybe that's too easy! ;)

    If you are like most of us with regard to this illness, the immediate after-effects are not all you will get. It is typical to get the real PEM 1-3 days later, so look out for the nausea, upset digestion, pains and flu-like symptoms and reflect on what caused them. Extreme exertion like you did today could lead to several days of PEM.

    I know just how hard it is to resist the urge to do things. After 18 years I still struggle, but am getting better at letting things go. Maybe I am just mellowing with age.

    Some people are not good at arguing a case, which may be why your boyfriend doesn't advocate for you as you would like, and as you clearly need. I wonder whether you have 'strong woman syndrome' (I have just invented that!) which means that less-assertive men are attracted to you? I have experience of that personally, and found the men exasperating in their indecisiveness and lack of motivation and imagination. I can relate somewhat to the angler fish, a species in which the male is parasitic on the female! (I'm not suggesting your boyfriend is like this.)

    Anyway, have a very virtual hug (I don't really like hugs but the thought is there).

    And TAKE IT EASY.

    And could you please send some rain to the UK? I am sweltering in a heatwave here, albeit nothing compared with the types you get in Oz.
     
  13. Valentijn

    Valentijn Activity Level: 3

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    I think you need to avoid blaming your boyfriend for not doing what you want him to do. Your attack of the stump seems like a bit of a "well I'll show you/guilt you into doing it" which is both stupid because of your health, as well as an inappropriate way to pressure him to do something he can't or won't do. Same thing with him talking to disability support services - it isn't his job to be your advocate. You need to respect your limits AND his limits.

    I know it's hard, and I get soooo impatient sometimes when I really want something done but my fiance either doesn't want to do it or is already burnt out from doing so much. We have to exercise self-control and get on with life.
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Wise words, Valentijn, and I'm sure you meant it as a 'critical friend'. I wonder whether there is anyone amongst us who hasn't done something stupid in that way, partly out of pure frustration and high motivation (and Tania cited frustration right at the start of her message) and partly as a kind of scream of anger/cry for help to no one in particular. I certainly have, although it was mostly before I realised that it was exacerbating my illness, due to the delay in the appearance of PEM - I didn't realise about the delay and therefore didn't know why I was ill. I still overdo things but not to the extent that Tania did, and am always grateful when I get away with it, but not smug, i.e. I don't take it as evidence that I can do it again without consequences.

    Hope you're OK, Tania, and please rest as much as possible for the next few days. I know that your attempts to get formal help can sometimes be exhausting in themselves. Bummer, isn't it?

    Try to find easier ways to do things. A lot of little things can make a difference, e.g. walking stick, long-handled grabber, and keeping a chair in places where you might get the need to sit (I keep one by my front door now due to people who insist on a Colombo-type final-thought discussion after they say they are leaving, just standing by the gate and carrying on talking!).
     
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  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    It sound like you and your boyfriend both had frustrating days. As the others have said, be sure to take care for the next several days. You have said that your boyfriend is about twice your age. He may not have the strength to chop out the stump, but did not want to admit it.

    I agree that your collapsing and not being able to reach the phone is scary. In this country, we can get an emergency call button fitted on a necklace or wristband. If anything happens, you just push the button and a response center is notified. Is anything like that available there?
     
  16. taniaaust1

    taniaaust1 Senior Member

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    More of a case of it put it into the "too hard" basic, I personally believe that he could of done it. ahh I didnt think of burning stumps, that's a good idea. That one thou I couldnt burn as its right next to a tree but there is one out the front which could be.

    I'll going to get my gardening guy to do it now like I wanted to MONTHS AGO but didnt cause my boyfriend stopped me as he didnt want me spending the money and told me he'd do it. (the wait for him to do it like he said he would, also added to my frustration.. at times Ive waited for 2 years for him to do things he told me he'd do).

    That's the thing, I hardly ever even get to get PEM anymore as my not treated enough POTS is so severe and stops me from doing things before I can even do enough to cause PEM. I dont know how long its been since I last really got a chance to experience PEM with this POTS (maybe a few years.. instead its a case of a severe POTS hit or if Im going a bit over doing things regularly.. I just then get a lower ME baseline). eg today.. being upright sitting and having to get up and down to find things for a not very smart support worker today, had me dizzy and sent me to bed before the hour she had with me was up.. due to the POTS. I need to be doing more then just basically sitting or getting up a few times to cause ME PEM...but that POTS is nasty.

    Yeah I definately have "strong woman syndrome" lol and would often do blokey things before I got sick, things even many guys themselves wouldnt try to do. (I remember one time being outside trying to fix a useless city friends guys car for him, he truely had no idea.. out in the country, the guys usually out here work on their own cars. so I wasnt used to seeing a guy need to take a car in to be mixed for a minor thing... I think I remember I got his car going by taking off his battery terminals and cleaning them.. logical if one is trying to start a car and nothing is happening and they look dirty. I like guys who can think when they have an issue) . If I have an issue, I'll try to think it out to solve it, no matter what the issue is (sooo frustrating now I have ME and have big holes in my thoughts when Im trying to run solutions throu my mind).

    I find that all types of guys seem to be attracted to me but its only the very strong guys who I will be attracted to as the others to me seem weak or just lacking. or can even seem like children needing to be taken care of to me. I like my guys very smart and very capable. I need a "strong guy" for my "strong woman syndrome". :D Anyway.. the ME/POTS frustrates me all the more due to the kind of person I am.. very capable to more like a child needing to be cared for.

    No, my boyriend is highly skilled at arguing a case. He has an extremely dominant personality and is much experienced at getting his own way with things. For a long time was a manager for a very big world wide company when I got with him (he's basically retired now), so well used to dealing with people. Getting what he wants is his speciality. (this has helped me greatly when he has decided to step in and sort someone/something out, he doesnt take any crap).

    lol that is why he did what he did to me for what I did over that stump.. and basically ignored me for it for over an hour (till he thought I may be in some very serious issue with loss of consciousness, then he checked on me). He told me he was teaching me a bit of a lesson, which I knew even before he said that, that his response to any silliness from me would be like that). He's not a person one can play a guilt trip on or force into doing what he doesnt want to do. Im a tough person but he's tougher!! (in some respects Im very glad for that).

    Thanks for the virtual hug.

    No rain here today :)
     
  17. taniaaust1

    taniaaust1 Senior Member

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    Yeah it was doing the "I'll show you how to do it thing" trying to shame him for quitting like that... thing is I knew full well me doing something like that wouldnt get him to do it (he's stubborn and if he's said no on something that is it) but it was frustration that he hadnt allowed me to ring my gardener guy MONTHS BEFORE who i wanted to do it and by his Macho act of "I'll do that" when he couldnt/wouldnt, well that make me very frustrated at him at the same time of being very frustrated over what I cant do myself which is so so frustrating. I hate asking the help of others including of him.

    My boyfriend has a hernia and is elderly so I didnt think it was wise for him to be doing it in the first place and had really wanted to ring my gardener to do it before he stopped me. . I then waited months for this to be done.. and only ended up having to ring the gardener anyway(which was what I wanted to do in first place).

    I guess not only did I act in in intense frustration (I cant remember ever acting out this extremely before.. usually I dont act out at all in frustration but just deeply feel it).. I was also trying to get throu to him not to stop me from sorting out my issues and say he will do something if he wont. I prefer to sort things out ASAP if I myself can...otherwise everything I want done just builds up and I end up feeling overwhelmed with everything in life.
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    Compression Stockings

    My compression stockings majorly ripped and no longer wearable at all 2-3 weeks ago, so Ive been even worst then I normally are . The place I had to get to to sort out another pair is right on the other side of town. My original stockings were faulty (had holes developing within the first week in one of them) so the company sent me a replacement pair, the replacement pair was different thou to the original ones, too high up my legs so after trying one of them on, I could see they were going to be no good for me.. so I needed to get a new pair and exchange these. In the mean time I'd continued to wear the faulty holey pair till the huge rip.

    Due to lack of time.. (needed at least 3 hrs to sort this out), yesterday was the first opportunately we had to get me to the medical supply place and get this sorted out. They gave me a fitting but they said I need another referal . So we tried ringing my specialist (one of the ones I havent to go back to this year due to my transport situatiion) but he was not working that day. Turns out anyway, they didnt have the compressionin the stockings I need in stock either.

    I really really hope the specialist can do that referal for me by phone and fax without expecting me to somehow get to him too.. the medical supply place when I asked if they could send them out to me when they come in, said no cause of the issues Ive had in the past (blisters and sores with my support stockings).. they need to check them on me once they come in, to look at the winkle patterns (that is where I blister.. a slightest wrinkle behind the knee will have me in blisters).

    **sighs, so I'll need to get someone again to take me to the other side of town for that.. and maybe someone to take me to the specialist as well**

    Why isnt anything easy with this illness!!

    To top that off.. the person at the supply place couldnt say if they will exchange the replacement ones (for the faulty pair) for a pair which is suitable for me and said she'd have to speak to the manager but said the manager wasnt there but would be there today (so my boyfriend was going to ring them today and sort that out with their manager, he may have to get tough with them. I could of asked for a refund to start with if I hadnt gone along with them that they'd replace them which then took several months I think it was for them even to arrive as there was some manufactoring issue going on).
    .......................

    My new contract from the disability agency came throu in the mail today... its freaked me out as its not as what has been agreed .. they have either given me the support time in amounts I wont be able to handle at a time (so will make me collapse as I wont be able to supervise unpacking for long) or they have way cut back my normal support time to a quarter of the normal amount. (I wasnt sure if it was the new contract which would be on top of my other one or they have changed my old one.

    I would of rang to check what was going on with it if it wasnt for ending up in bed due to a carer constantly asking me where the most obvious things could be found and then not looking well (forcing me to have to get up over and over again for what should of been things found logically). (I dont have a home phone by my bed so if Im there.. I cant go making any calls other then short ones on the mobile). Im going to worry about the contract and what is going on all night.

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

    My washing machine packed up a couple of weeks ago so Im stressed over that too (havent been able to sort it out yet if it can be fixed or if I need to get a new one). So Im currently having to now use some of my not enough already support time to get my washing taken to a laundry mat. stress, stress, stress.. washing machine.. more money Im going to have to spend.

    My cane chair.. has now also got a serious issue and isnt safe for me to sit on and use. Ive ended up on the ground twice in shopping centres due to it's instability in the past 2 weeks (one of its legs goes sliding outwards), so now wont use it at all like this (I soo need that cane chair when I dont have a wheelchair :( ) . Both my boyfriend and I have tried to fix it by bending it all kinds of ways (it doesnt really bend but we tried) but have now worked out that it seems to be something wrong with the inner parts which goes throu all the metal parts.

    We did replace the rubbers on the bottom of the legs the other day to try to help it, which could of been throwing the balance off as 2 out of the 3 were all split but its issue is more then that.(another trip to the hardware. All this having to fix things is constant and places I need to rely on someone to get too Support workers arent allowed take me to handware as its out of my suburb (rule DisabilitySA has put on my contract), so my poor boyfriend is having to do all this too. If it wasnt for his help, things like this, wouldnt be getting done. But with all the major things which need fixing, we still arent getting any time to get me to any of my doctors so all the untreated or not dealt with health issues I have, remain untreated.

    Today, I had someone come out and fix my letterbox (all my mail was geting wet as it was rusting away and some sent gifts to me a couple of weeks back got ruined due to it) and also two doors of my house got fixed today (which wouldnt shut properly). Last week I think it was (may of been the week before).. I had to get a new hot water system put in as the other sprung a leak which the plumber said could start majorly pouring out water at any moment.
     
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    You are getting very sleepy ... :sleep:
     
  20. taniaaust1

    taniaaust1 Senior Member

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    lol yeah at times.. its also going the other way at times too.. with overstimulation and feeling "wired" and tired. Ive even been considering if I should be back on Clonopin/Rivotril. Im so over stimulated or wiped out.
     

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