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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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    oh boy.. I just tried the Fn and F5 thing on my computer and I wont be doing that again, my computer shit itself with that. It started making squealy noise and the screen I usually use, completely went blank and instead switched over to the faulty screen (which most the time doesnt work at all and is all red in colour and if Im using that one, my computer usually wont work. I once unable to use my computer for weeks due to this issue so I dont use that screen). I use a another screen connected to it cause of its own laptop screen being broke. Then it shifted and colour back but was coming up "no signal" on the screen I usually use (something I didnt then know how to fix).

    Fortunately (that got my heart pounding lol) its came back ok when I turned my computer off (thou I lost everything I was doing and hadnt saved ..sighs.. computers). What this incident did thou make me aware of (cause I was pressing buttons on the separate screen trying to get something other then a blank screen back) .. was I have a button on that second screen with a sun on it.. so maybe I can adust brightness there? (Im not game to touch anything else on my computer right now).

    I think I'll come back to trying to sort that issue out another day after what just happened. Thanks for the advice thou thou it didnt go as planned.
  2. taniaaust1

    taniaaust1 Senior Member

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    Wow that one sounds great, , if I missed door it wouldnt matter as it would still get left outside and sounds great too about the bringing to kitchen and helping me unpack. That has been an issue with my support workers as there has been times they've run out of time before unpacking and Ive been not well enough to unpack it myself (in this case Ive had food actually go off on me before Im well enough to be doing it, its quite upsetting to me when food has been wasted due to that), so someone putting fridge/freezer stuff away would be a very good thing!.

    I'll check that one out.

    wow.. there delivery fee is sooo cheap.. its beats the $16-17 delivery fee for my local supermarket I wouldnt mind even if I had to online order from two different supermarkets for the very low carb stuff I buy at those kind of delivery prices.

    thanks :) that one with the making the salads to order sounds great too. I wonder if they can do a salad up like subways salad bowl or something (I usually have 4 of those per week if I can be taken down to the shops, I buy up so its part of my main diet). (Most salads I cant eat due to Ive been told not to have mayo or sauces.. Im kind of left with greek salads (which my own supermarket dont do and I can only get from the chicken shop but maybe this other supermarket can do) or making a nice one from other things as subway does.


    Keens Ive already tried and it wasnt a suitable option .. that is the one which sent me the email on my queries which I mentioned before saying
    "

    "Hi Tania
    Thanks for your email and I do apologise for the delay in responding to you.
    Unfortunately, we are not able to offer a pick and pack service, as the supply of certified organic fruit and veggies is very erratic. Even websites that say they can offer this service will allow you to choose what you want to order, and then only send you what they have available, leaving you with a half filled order and the disappointment of having to go elsewhere to shop for the missing items. "

    So Id have to shop at another site too.

    i hope you didnt tire yourself out too much.. take care!!! Thanks greatly for your help.

    If my computer is fine with those websites and if the online set up isnt too overwhelming on my head and site easy to use.. sounds like I may be able to sort this shopping thing out hopefully with those 2 supermarkets :) (right now Im starting to hold some hope with this **fingers crossed**.

    Its crazy cause some supermarkets dont stock much in the way of low carb predone meal stuff which someone like me who can hardly cook needs or even low carb non chemical sweetened things one could use for desserts eg our biggest supermarket chains here (Woolworths) doesnt have not a thing for me in the way of desserts I can eat!!. No sugar free chocolate!! No sugar free lollies.. nothing at all for for a sweet tooth chocolate lover or anything for dessert (I have a yougurt during the day for a snack so dont want that again for dessert and I have my one small piece a fruit a day Im allowed to have with that yogurt snack).

    One would think with the amount of diabetes around the place that things like low carb products without artifical sweeteners would be easily available!! It thou does have one salad make up I can eat (thou even that has things in it Im not meant to eat).

    that sounds a good idea :) (Im still concerned whether my brain is going to be capable of dealing with an overwhelming screen full of items and of having trouble getting the right names for things I need if searching). I'll see how I go.

    Cause I cant eat things like cereal, toast, too many eggs or canned stuff.. Most of my meals are complex with me having to make full meals if Im well enough every meal (otherwise Im having chocolate, subway salad for a meal or occassionally tuna and a 3 small crackers but those crackers is a diet breech). Cause Im cooking 3 meals per day (if I can, very rare Im cooking at all most of the time right now) its A LOT of different things I use, so my weekly shopping lists end up quite big. (even my support workers when they started here couldnt believe how much I was having to buy and commented on it). If Im out of an ingredient that will often spoil a whole dish.


    Im actually eatting quite differently week by week, it all depends on just how sick I are that week... so how many meals I can cook per week.

    Some times when I sicker Im hardly eatting at all and will eat only a third or far less to what I usually do during a week (and that in that situation may only be chocolate, nuts, yogurt and subway salads if I have those things). Nothing in my life is stable. When Im cooking, Im using lots of things. So its not a case where I could set a set amount to order every week. (When Im sicker I try to get even more subway salads when I go shopping but then if Im weller then I thought I'd be, I end up cooking more and then the salads sometimes end up being thrown out.. I sometimes end up getting sick of those salads too so go off of them and then they get thrown out for that reason). My health all over the place is making what I eat flutuate so much.

    My shopping per week is varying from $40 a week where I was too sick to do anything and hardly ate to $130 or so a week. I wish things in my life were more stable so I could just like set a weekly or fortnightly order.

    My brain is always bad for remembering what things are called and it always gets overwhelmed with too much stimuli in some situations.. there just isnt good times at all and at times Im a lot worst (in which I then dont even come to PR) eg that woolworths website.. I dont think currently there would be time where my brain could handle that without going into an overload situation. Its overwhelming my brain just all the pictures at once. Sometimes I struggle with PR cause of the set out here just with the headings (Im really hated the changes with all the headings at the site as that is very hard on my head, I find things now harder to find then the previous setup).. and there isnt even lots of pictures here!!!

    Anyway.. i hope the other websites if my computer is capable of getting them up.. and set up more simply so my head can handle it. I could get lucky :) **im staying hopeful till I see**


    Yes agree.


    Yes, but I did manage to get throu it as you break up the paragraphs well . Thanks. I do have to go and rest now due to it thou.

    Im currently concerned about that as Ive had several computer people tell me (including the last computer repair guy) tell me that that isnt going to help my computer. Both repair guys told me I will need a new one as my computer isnt capable of going faster (according to them). So Im waiting to see. They are supposed to be connecting me up and were supposed to do it by now but then I didnt hear back from them.

    ahhh.. that sound good and probably is something I will need to be able to get throu finding all the shopping. **fingers crossed those supermarkets do that at their sites**

    I dont have an iphone or anything like that. I have a very very old mobile phone... so it doesnt do app. stuff.

    Yeah I do agree, i do need to shop some how else seeing Im running into huge issues with my shopping so often and I truely cant keep going on in this manner and I cant see things gettin better anytime soon. My big issue is just whether I can do it or not (and I just wouldnt be able to afford it if I was having to pay out over $30 per week or more for just delivery fees! which was looking likely before when one shopping centre charges $17 and I cant even get all my things there so would of had to have been ordering from other places too with more delivery fees) but my main problem is will I be able to get suitable stuff I will eat for my diet and be able to use the shopping website.

    I'll check the websites tomorrow. I need to go and rest now. A big thanks for your help as they look as if it is possible they could be suitable.
    Last edited: Jun 8, 2014
  3. taniaaust1

    taniaaust1 Senior Member

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    Im taking it easy right now. My sister has phoned and is going to visit today. She's offered to do my dishes (2 weeks?? now they havent been done) but Ive said no as this is the sister who has CFS herself and I worry about her health and its a long way for her to drive just to get here (and her children are quite demarding when she's out).
    ..........

    Yesterday was a bad day for me.. lots of pain with my period and my painkillers werent helping. I started completely flooding the maternity pads I was using within an hour (which caused me some panic over the amount of blood I was loosing). Iended up feeling quite dizzy after such heavy bleeding (probably due to blood loss.. at one point I even considered ringing for a doctor cause of the amount of bleeding). Cause of the pain I was needing to move and kept getting up to walk to try to relieve it.. and then that gave me pain in my legs due to the ME (its hard to work out what is best to do under such a situation). Today Im doing better then I could of imagined after yesterday (often I will be completely wiped out the next day or for days after something like that).

    I caused a fire. Cause I have no clean pans and stuff to cook with, I wrapped my roast in alfoil but the alfoil ripped when I went to get it out causing fat to spill right throu my oven so I had my whole oven on fire. Im feeling so beyond it right now that my reaction to flames going everywhere was to throw my hands up and the air and walk out of the kitchen and leave it (not caring if my house burnt down at that point). Im sooo sick of all the things Im going throu that right now Im starting to feel numb about it all. I could so do with some counselling right now I think but due to my past experiences with psychs (not at all understanding how sick I are with the ME/CFS, currently do not want to go near one (and besides I cant afford risking all the focus being put back on my mental health and not fixing my physical issues Im going throu and real needs. I also arent well enough to get to any form of counselling anyway).

    Fortunately the oven fire in the end did put itself out. (All I could think about while I had the fire in the kitchen going on..was maybe if my house burnt down, maybe then disability services would realise how much Im needing more personal care support).
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I wasn't thinking of support workers, but someone to help you deal with the Aspergers. The Aspergers seems to make it more difficult for you to deal with the ME. I suppose the ME makes it more difficult to deal with the Aspergers, as well.

    Maybe you should bring this up to your advocate at some point in the future (don't want to overwhelm her with too much at once). It doesn't seem right that you cannot get help with your Aspergers because you have another condition.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Buy a kitchen fire extinguisher the next time you are out. Keep it in easy reach.
    MeSci likes this.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    They're not too expensive on ebay Australia:

    http://www.ebay.com.au/sch/Home-Garden-/11700/i.html?_from=R40&_nkw=kitchen fire extinguisher&LH_PrefLoc=2&_arm=1&_armm=63&_ruu=http://www.ebay.com.au/sch/Home-Garden-/11700/i.html?_from=R40&_nkw=kitchen+fire+extinguisher&_arr=1

    I would hate to think of you and your cat dying in a fire.

    (If you just search for 'fire extinguisher' you get Australian-based ones, but you need to make sure they're not novelty ones, as some of the results are for these.)
    Valentijn and Little Bluestem like this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Tonight, its midnight now and Im STILL attempting to cook dinner (its at the 4hr point now). Its soo annoying. Tonight I was trying to cook a roast and after 3 hrs and it still not being cooked, I finally figured out what was going on, turns out the oven was only on low!! So now Im so tired (struggling now not to fall asleep as then it will end up burnt) and wish I could be asleep, while that roast is still in their cooking (as my oven doesnt work well, its still got another 50mins, I are at this point considering turning it off and going to bed without dinner).

    Having it on low was worst then what I did last time I tried to cook a roast the other day when I didnt turn the oven on at all. At least if Id done that mistake tonight, I would of figured out the issue sooner.
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Isn't it risky cooking meat at low temperatures? I wonder whether you would be better off with a microwave? Or do you have a problem with the radiation?

    If not, does your oven have a timer and alarm?

    No need to answer - just suggestions.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I don't think she intended to have the oven on low. I was wondering the same thing, though. Will 3 hours on low heat turn the roast into a bacteria incubator? I suppose as long as it gets hot enough while cooking, the bacteria will be killed.
  10. golden

    golden Senior Member

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    Clear Light
  11. golden

    golden Senior Member

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    Clear Light
  12. taniaaust1

    taniaaust1 Senior Member

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    ??? can one do beef roasts in the microwave???? (I didnt know that, I need my meats tender as I often get chewing issues with the ME).

    I do have a slight issue with radiation but so far only noticed that with my electric blanket, I get ill if I go to bed with it on.

    I hadnt thought of that but fortunately the meat didnt make me sick, Im ending up doing far worst things currently with my meat eg left it out all not as I forgot to put it away after shopping, Ive done that several times this year and then still ate it even after being out the fridge for up to 24hrs as I hate to waste things.. I really Im at risk of food poisoning myself with the issues Im having.

    I was thinking about what happened later and realised that is actually 3 times in a row Ive screwed up cooking a roast! (actually it could be 4, I think I burnt a roast before that). Its ridiculous the amount of problems my brain is giving me.. there isnt much easier then to cook then a roast. Looking back on the last 3 times Ive cooked roast, 1/ I put it in the fridge to cook 2/ I put it in the oven and forgot to turn oven on.. and then the last time I set the oven wrong.

    My brain is making the simpliest tasks hard. Im going to bring it up just how much problems my brain is getting me into with my GP next time I see her. Thing is, I dont think there is anything we can do to help ME brain issues is there????? (unless I are getting early onset Alzihiemers (I cant think how to spell that word).
    ..............

    My oven does not have a timer or an alarm but I did buy one. Thing is when Im exhausted I can at times sleep throu an alarm (like sleep like the dead). I cant trust an alarm is going to wake me up.
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    A crock pot might be a good option for you. Once you get the food in and the pot plugged in and set properly, you can pretty much leave it until you are ready for it (as long as you leave it long enough to be done).
    AndyPandy, Valentijn and taniaaust1 like this.
  14. taniaaust1

    taniaaust1 Senior Member

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    Yeah, Im going to look into getting one, its one of the many things Im wanting. (its just not getting even enough support time to be taken out to be looking for things like that).
    Valentijn and Little Bluestem like this.
  15. taniaaust1

    taniaaust1 Senior Member

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    Update

    I dont seem to be getting over the latest thing disability services said to me, if anything maybe Im even getting worst about it. I cant remember if I mentioned it but I now not answering phone to any one who's number I dont know as Im scared it will be disability services going to say something horrid to me (innerly I feel destroyed over what they've done to me and the aweful stuff said). This is interfering with other phone calls I have coming in and should be picking up on. (something I will to bring up with my GP when I next see her).

    Ive made a couple of medical appointments (after these I have no support to any more appointments so that is putting a huge stress onto me). 19th June.. I have an appointment with my GP (apparently I still had a little appointment time I hadnt used left). On the 26th June.. I have two appointments one after another in the same place.. one with my allergist and a follow up with the dietitian who will be doing the allergy test for my allergist. I think Im going to go over the time that has been given for support to take me there and back but Im not going to worry about it and allow them to deal with that one (I know my support worker wont abandon me at an appointment as Im out of time).

    Im not happy with my support agency right now, today one of my two main support workers told me that the agency tried to give her a shift with someone else at my time (she told them no as she didnt like the person they were trying to put her with). This has also stressed me to find out they are doing that, as I dont think I could handle right now having to teach yet another person about my condition and all the help Im needing if I lost my normal support worker right now. Im also able to trust her to tell me when she's seeing me go downhill, my support workers who know me well and are observant can actually tell Im crashing before I do (by my face colour etc.. I also sometimes start shaking or tremoring and dont even notice it). With a new worker, many dont notice and I end up collapsed.

    Im currently distancing myself a bit from a lot of stuff (which should be being sorted out) as I just too stressed and hence trying to cut back on things.

    One good piece of news thou, is the fungal infection I have on my torso, its finally looking like it may heal with the antifungal I brought, without me having to go and get a prescription one. (yah!! once that is healed I'll be able to wear a bra again, I havent been able to for about 6 weeks).
  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I know not worrying is easier said than done, but I think you are worrying too much.

    Focus on getting through the appointments you already have right now. Once they are over, you can think about how to get to more appointments with the help of your advocate and/or your GP.

    Your support worker refused to be shifted away from you, so I don't see that you have anything to worry about now.
    MeSci, Indigophoton and Valentijn like this.
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Do you have a phone answering service - either your own answerphone or a built-in service - one that lets you hear the person's voice while they leave a message? Then you can pick it up if you want to speak them, or leave it if you don't.

    No need to answer - just an idea.
  18. taniaaust1

    taniaaust1 Senior Member

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    Im feeling good enough today so far (I havent felt this good for a week), to be able to do somethings including brain stuff, so will go throu the threads and hopefully see the posts Ive missed and havent responded to (Im feeling good today as the result of forcing myself yesterday to do nothing at all physical at all.. having a full rest day including with no mental stress, can make a huge difference in how I feel next day).

    I also feel good enough to be looking more into the supermarket thing so hopefully will get to check the links out. I do have some other things I must do too so hopefully my currrent level of okay wellness, feeling actualy good.. lasts long enough for me to do the things I want to do today.

    No I dont have anything like that. I used to get messages left on my mobile but have purposely removed that as I found it led to problems for me so I needed to simplify so got it removed. People when they leave a message, if you dont return it.. I found you can end up with a lot of angry people (I actually got abused for it by some people for not getting back to them quickly enough), that whole thing ended up stressing me out as others were upset at me (most people who phone and leave messages do not understand how sick I are).

    Also if I'd been to the point where I wasnt good enough for phone stuff all week, by the time i checked those messages I used to have so many there that it was completey overwhelming for me. By the time I'd checked them all, I'd made myself sick. So Ive cut myself off of a lot of things to protect my health (and to protect me from the angry of others who dont understand me being ill).

    I used to stress out too as all the ones wanting me to ring back would add up more and more... (I can only really cope well with about one phone call per day, on my okay days without risking a crash. I think that was what caused me to end up in hospital last time.. the day before I'd done about 5 phone calls, one of them turned into a long one..that is hugely draining on me trying to keep focus like that on a phone). I think I had longish for me a chat Alex from here one day on the phone. I was enjoying the chat to another who understood but then ended up in hospital the day after.. id also done a few very short ones that day.. its very very hard on my head. Its a big brain exertion.

    I also had other issues around phone messages too eg people talking fast so I couldnt understand the message. I often find it hard to keep my brain up with the voice on the phone when holding phone convos.but some people talk even faster when they leave a phone message (can end up sounding like Russian to me).. and those who leave numbers by voice..forget it.. I struggle to get the individual numbers from a phone message or end up doing the numbers in the wrong order due to the like dyslexia I get quite often with numbers.

    All the above is why I dont get phone messages.
    Last edited: Jun 14, 2014
    merylg and MeSci like this.
  19. taniaaust1

    taniaaust1 Senior Member

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    You could be right, my worry thou is based on logic.. it took over a year for me to get the transport to those appointments and I still do have the disability service telling me they arent a transport service and that those were once of appointments. There is nothing at all, to say this situation has changed in any way.

    Its really hard for me to think positive about this situation when there doesnt appear to be any change at all.

    True I dont right now in this immeditate moment of the now.. . but I know she would of taken that job had it not been with a family she'd worked for before and didnt at all feel comfortable with, that was the only reason she didnt. She's currently applying for other jobs due to not getting enough hours (so would be leaving me then if she gets one), that offer from the agency, it got offered to her as it was going to be an 6-8hr job instead of the 2hrs she had with me. It is extremely likely they will offer her another longer job as they know she isnt happy currently with the amount of hours she has.

    My brain can only base what probably will happen on what has happened in the past and what is happening now. I cant make assumptions not based on facts. My Aspergers mind works in terms of probabilities, with waying all the facts up and the possible outcomes too.

    Im trying thou not to worry too much as stress as we all know is certainly not constructive to us. Anyway, I'd best get out of here and start doing all the things Ive been putting off before as I didnt feel up to it all week. (Ive probably complexed some stuff due to not dealing with it when it should of been dealt with a week back.. fingers crossed that I havent). That's just remembered me that Id better remember to pay my ambulance cover renewal this week or I may end up being caught out by that.
    Last edited: Jun 14, 2014
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I do that. If I didn't, I would be inundated with telemarketing calls. I almost was when I was home at times during the day when in grad school and answering every phone call. That is when I bought the answering machine. I now also have caller ID, so if it is a number I recognize, I can pick up before the machine does.
    taniaaust1 likes this.

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