1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

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

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    Sorry guys, I'll read your posts another time, I really arent up to dealing with much right now. I feel so close to a mental health breakdown as I just arent dealing with all the stress of it all. Ive come here to post an update of the latest stuff so it wont end up lost in the confusion of my brain.

    Today Ive rung a current affair show http://www.todaytonightadelaide.com.au/contact-us over my situation and the discrimination Im getting from this state over ME/CFS (the past bad stuff) and the current with disabillity services. They said they cant do a story on one person and several other cases here would need to phone them and then they can look at doing a story on our situation here. So if there is anyone else in Sth Australia having ME/CFS discrimination esp issues with getting the support services they need throu Disability Services (which fund everything else!).. please please ring todaynightadelaide ( :( I forgot who I spoke too, it was a lady), I know you may be exhausted and sick but I cant change what this state is doing to us ALONE!! and without more saying about what is going on.. the hell Im having here is likely to continue.

    If things in this state go on like this, we will end up getting a ME/CFS death in this state.

    Ive also rang today my Advocate who I couldnt get on the phone (so had to do the normal thing and just leave a message which I wonder if she'll end up getting or not).

    Ive also rang the Equal Opportunity Commissioner place. I dont think Ive rang back there since the guy who was dealing with my case was transfered to a different position so no longer able to work on my case. Turns out the new one dealing with my case now doesnt know anything about it!! and said she'd had to read all throu the stuff and make a decision if I have a case or not. (the other guy told me he thought I did, at least over the wheelchair thing in which they refused to refer me for 2 years when whole warehouse there fill of them for people like me). So it looks like Im back to square one with having to deal with a new person. (round and round in circles)

    She said she'll ring back.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    On Monday my elderly friend came (he's currently only able to come weekly cause of his own problems). I got him to pick up the consent form from disability services on the way to my place and drop it back signed to them when he left here. What gets me is it is exactly the same as other consent form I signed for info from that doctor. (makes no sense all the hassels they put me throu).

    Then he then also picked up something I couldnt get at my local shops and ink for my printer as I couldnt copy any of the stuff I was needing to print off for doctor etc. Then when he got here he helped me with a few things which which needing doing and then took me down to the locals shops (IN THE WHEELCHAIR.. I feel like I need to add that in case they are reading this!) where I did a "small" amount of shopping, enough for that night as my support workers were due the next day to take me shopping and its hard to get much when you are pushing someone (me) in a wheelchair who is quickly exhausting.

    He's in his late 70s or 80s.. I forget now, all this isnt easy on him, its shocking the disability services force me to have to rely on an elderly person. He was in pain and needs to go to a doctor over his hand but having to push me around the shop (we think its arthritis, I hope it is that, Ive been worried for a while it may be something worst then that due to the lumps inside his hand. It must be bad as he avoids doctors and is now talking about seeing a doctor over his hand).

    Anyway.. I finally got food for that night (felt so good to have a decent meal after a week of eatting many just meat!) and it was planned that I'd be able to do my shopping the next day when my 2 workers came to take me shopping. Turned out thou I was crashing the next day from the brief shop for just those few items for dinner!! so next day (yesterday), I was tears knowing that once again I was too ill to go shopping. I rang crying my support agency about it but got told the one I needed to speak to was in a meeting and couldnt call back till it finished. I thought I didnt have any money on me at all to give to worker to go and get me some more food. I rang my friend then crying about it all and he informed me that I had in fact got some out and had $50 in my purse (darn my memory!! it causes me so much more stress).

    So I then rang the support agency telling them that they didnt need to cancel out completely on me as I had a $50 I could give to a worker to go and get me more food (I wasnt well enough to have a worker here making noise doing dishes when I was that ill .. it would of just crashed me more, so had no choice but to cancel that). So one worker came and spent the $50 on some of the things on my shopping list, while it was arranged for the other worker to come on Friday so I could do my main shopping then when I could go to the shops and get money.

    My shopping list was big due to the issues Ive been having going shopping so there still is a lot of things I need to get, so my Friday time now will be used for shopping too which means my dishes which havent been done since TUESDAY LAST WEEK (its wednesday now the following week today).. will be sitting there till NEXT WEEK. Its discusting how they are forcing me to have to live (If I start doing things like that I'll be screwed as I just start crashing and then wont even be able to go to the loo or get a drink). I took a photo of all the dirty dishes right now in my kitchen (there is more off out of the photo).
    ....................
    I need to stay away from PR as Im too stressed over my current situation and its causing me to get into disharmony with people here (Im way sensitive right now feeling close to really cracking), I dont want to be causing the mods issues. I was crying and someone had a go at me at my attitude (I dont think she's a mod?) as I had done a post over something which upset me which they wanted me to remove but I was too upset about things to do so and feel very deeply about things right now due to all the issues this illness is giving me.

    Im worried I could end up dying due to the ME/CFS and my current situation of not enough help. so to that person who said to me that I think im worst then many others here.. well yes I do in fact think this. Im very very concerned this illness could well take my life!! I can not trust I will still be alive in 3 mths or 6mths.. everytime I crash bad and are bedridden completely and cant get to a loo or get a drink, I have no one to help me.. Should I feel ashamed as I think Im worst then some others here?

    Anyway.. we arent going to discuss this on this thread and Im not well enough to deal with things like that right now.
    Kina Im sorry if Ive caused any issues at the site. I dont know if you have pmed me as I dont feel well enough to deal with any stress any messages may cause me so havent even looked to see who has pmed me.
    ........

    On the online veg place situation. I got an email back from the one I contacted and here's some of the reply to me. "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. "
    ..........

    I also the other day tried the woolworths website again. This time (Ive tried twice in the past without luck) I did manage to get it after my computer froze up twice! It took over 45mins for me to try to do something there and I ended up having no success. Once I FINALLY got it working, I typed in "kitty litter" into the search box there, crazily nothing comes up at that! So I then went to the pet section to look for it.

    There was so many pages there with things (complete brain overload!) that I was unable to go throu it to find what I wanted for the very first item I was trying to get there. Not only that.. that website really really hurts my head.. it is sooo bright white! (I used to use the very dark screens on PR due to this kind of thing). At this point I gave up. 45mins and didnt even manage to get one thing there, maybe I'd picked a difficult thing to find there, I dont know but from that experience which left me not feeling well. I can see that even if I get another computer, that site isnt going to be okay for me.

    Thou I havent read the comments here to me yet, I did notice that there is something about shopping there, so will check it out when Im feeling up to it.
    Last edited: Jun 4, 2014
  3. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    4th June 2014 2.jpg

    State of my kitchen right now due to the issues Im facing (and yes I ended up resorting to paper plates and plastic forks and knives which Ive been using past few days, try using those on meat when one is feeling weak!!! . I had nothing left to use thou. I ended up using plastic bags to put my hands in as plastic too hard to cut up things.. I dont like greasy fingers...yucky texture.. so have been holding my meat to eat it like that). Does it make you feel sick? it really grosses me out!. I can NEVER get used to this. It stresses me.
    .......................

    I just got some phone calls in while I was doing these posts.

    I must of rang the HSCCS? (may have initials wrong) too. I cant remember doing that today.. maybe I rang the wrong number before and rang them instead of the EO (now Im very confused)?. They said they were ringing back. It was Christine Egan, the person who's been dealing with me from there since last year (Im still confused even about that I thought someone else had taken over my case there last year). She's always good, listens to me and talks clearly to me but says they cant do much as they arent there to help those with advocacy and are still waiting on my letter to their last one. She said she'd ring my advocate for me (as my advocate who Ive told several times I needed to respond to this other dept due to deadlines and extensions granted, kept on sayin "We'll deal with one thing at a time").

    Christine Egan says her dept is impartial on things when they are investigating things (good!). She is fully aware that the agreement disabilitySA made with me, hasnt been satisfactory as they havent been following anything up like they are supposed to do or trying to help me.

    Id just got off the phone to her and then my advocate Leatha rang asking what I was wanting. I had a long talk to her and right now are feeling ill (and my head really hurts) due to all the phone calls today .. Ive done too much doing this on the day I need to rest (going to bed as soon as I finish this update, I need to do this before I forget).

    I finally got throu the Leatha how this other dept needs dealing with. She says that she needs to open a new case for that as it means she will be dealing with a different gov dept. (sighs.. all the beacreatcy) even thou this other dept is dealing with my complete over disabiilty services the dept she's been dealing with... and everything needing passing all is all to do with the dept she's already trying to deal with for me.

    With it being a new case for her (thou its over the same thing).. I wonder if does this mean I need to fill in more forms and put in my complaint again? but from the point I put it to the other dept? (the paperwork keeps building).

    We also finally got to have a long discussion (no wonder my head is pounding) on all the other stuff I'd been wondering about.
    ...........

    Maybe I got a third phone call back today. I have a vague memory of someone, a female ringing me back who I didnt know. Im feeling so vague over this memory that Im not even sure if its a real memory or not? Memory issues can be soo confusing (maybe someone else rang and due to all the phone calls which came in, I didnt absorb the call?). Anyway I possibly got another phone call in over all this stuff which is now a mystery phone call to me. Hopefully my brain will come to after some rest and I will know if it happened or not. My brain is currently wrecked.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,786
    Likes:
    3,064
    Cornwall, UK
    @taniaaust1 there is no need to reply to any of my posts, even if any have questions in them. My only aim is to help, so I am mostly posting info that I hope will be useful.

    You may find that you get results for 'cat litter' rather than 'kitty litter'. The online supermarket that I suggested - Coles - sell it. But some of the reviews for Coles say that they can penalise (fine?) people if a delivery fails and they regard it as the customer's fault, which could perhaps happen to you due to memory problems, etc.

    Ebay Australia sell cat litter too. I don't know if you have a PayPal account, but you can often pay by credit card, cheque, etc. They also sell a fairly-wide range of foods, including healthy stuff like nuts, seeds, dried fruit, soup and even some vegetables (mostly tinned or packets).

    I am wishing you all the strength you need, and trying to think of places where you could put out a plea for people to join you in writing to the media to provide the strength in numbers that is needed. If you're not on Facebook, for example, maybe someone who is could put out a notice suggesting that people read your posts here?
    taniaaust1 and Valentijn like this.
  5. Indigophoton

    Indigophoton

    Messages:
    54
    Likes:
    95
    UK
    You might try reducing the screen brightness temporarily, if it is just the odd website which is a problem (can be done using the Fn key on the bottom row of the keyboard at the left, next to the Windows key, together with F5 and F6 on the top row of keys: Fn + F5 reduces brightness, Fn + F6 puts it back up).

    Alternatively, if it's a general issue, how about using the Flux program from https://justgetflux.com/. It allows you to set a non-glary screen. Lots of people with ME find it really helpful in improving accessibility to computer use in general (eg, for letters, which tend to have a white background), as well as for the web.
    taniaaust1 likes this.
  6. Indigophoton

    Indigophoton

    Messages:
    54
    Likes:
    95
    UK
    Bit baffled that there might not be an option, so - challenge accepted :)

    I searched for "online grocery shopping adelaide".

    Bananablue claims to be Australia's largest online supermarket and they deliver to Tania's postcode. Website http://www.bananablue.com.au/. They have 18 options for cat litter(!) You don't need to be at home/available to accept delivery, they will deliver to an agreed place using ice packs and cold boxes. If you are able to take the delivery, they will bring it into your kitchen, and even unpack the boxes for you if you wish. The delivery window is one hour. The delivery info is:

    Postcode: 5169 is serviced by Pasadena Foodland

    The cut off time for orders is 12 midnight on the day prior to delivery, (or 12:00 noon Fridays for Saturday deliveries if available in your area).​
    [​IMG]Tuesday

    Collect 3-5 PM
    $0.00
    Collect 5-7 PM
    $0.00
    3:00-7:00pm
    $9.95​
    [​IMG]Wednesday

    Collect 3-5 PM
    $0.00
    Collect 5-7 PM
    $0.00
    1:00-5:00pm
    $9.95​
    [​IMG]Thursday

    Collect 3-5 PM
    $0.00
    Collect 5-7 PM
    $0.00​
    [​IMG]Friday

    Collect 3-5 PM
    $0.00
    Collect 5-7 PM
    $0.00
    1:00-5:00pm
    $9.95
    Collect refers to Click and Collect. This is where you choose to pick up your packed order, on the day, and in the time period you choose, from the store location indicated at the top of the Home Page.

    All other times are home delivery.

    On the morning of delivery, bananablue will email your registered email address with notification of anticipated delivery time. We cannot guarantee this time, due to road conditions, etc, but we can narrow down your delivery time to a 30 minute to 1 hour window.

    You will be able to select not to receive bananablue's targeted delivery service as you proceed through checkout.​
    Goodwoodfresh delivers to Tania's area - I made a test account using an address close to Tania's to check - their website is http://www.goodwoodfresh.com.au/new_home.aspx?pagename=Home. They will do fresh salads made to order, amongst other things. They charge Aus$4.95 for delivery, minimum order Aus$25, and their delivery times are

    AdelaideDelivery Time: Friday 11-3pm
    AdelaideDelivery Time: Mon 11-3pm
    AdelaideDelivery Time: Wed 11-3pm
    Adelaide BcDelivery Time: Friday 11-3pm
    Adelaide BcDelivery Time: Mon 11-3pm
    Adelaide BcDelivery Time: Wed 11-3pm
    Keane's Organic Food also delivers to Tania's postcode, on a Tuesday. They will leave the stuff in an agreed place if you like, using ice boxes, thus avoiding problems if you can't get to the door, and will take cash or credit cards. Website http://keanesorganicfood.com.au/.

    There seem to be other options, but I guess this is enough to be going on with: these three stores all seem to have a lot to choose from, and cover organic, gluten-free etc, as well as the usual stuff. (Plus I'm pretty fatigued now... :sleep:)

    One option would be to use something like Keane's and/or Bananablue as a backstop, so that you always know you are going to get the basics each week whether you are mobile or not, and to use Bananablue and/or Goodwoodfresh for all the bits and pieces/the big shop two or three times a month, or as needed.

    This is what I do: I rely on an organic box scheme that covers veg, meat, fish, dairy and quite a lot of other stuff, for survival - literally. They leave the stuff in my shed, in ice boxes, and I get it when I can. Then I get one of the big supermarkets to come when I can manage to be washed, dressed, and get to the door to let them in, for a big shop. It works really well, and avoids the stressful situation of running out of food, which used to happen before I discovered the box system!

    The scheme I use allows one to set up a regular order that comes like clockwork once a week/fortnight/whatever (and which can be one set of stuff one week, then a different set of stuff alternate weeks, for instance), so that if necessary one doesn't even need to remember to order food each week, it just magically appears :cool:. I suspect Keane's might do the same, although I didn't delve in that far. It might be an option worth considering while you are feeling really stressed and forgetting stuff, just to ease the pressure on yourself for a while. You can still make changes up to the cut-off time for ordering, even on a regular order (at least, you can here in the UK).

    It is really worth having an account set up with a company that will deliver without you being around, just to make sure the basics are there.

    Anyway, rather a long post, but I hope it helps. Remember Tania that once you are on fibre pages will load really fast, and things will take a fraction of the time that they take on dial-up; also, in the UK, most of the food sites have 'favourites' type lists, so one can avoid trawling the whole shop looking for stuff, and just run quickly through the site-stored list of one's usual items, which makes it much quicker after the first time: hopefully the Oz sites will do that too.

    The big UK supermarket that I use also has a really very good smartphone/tablet app, that makes grocery shopping as near to a breeze as it could be, so might be worth seeing if any of your options have a decent app.

    It's true that home deliveries cost money, for the delivery charge, but I think one just has to bite the bullet and accept that being disabled means incurring costs: the benefits of not running out of food, both health and stress-wise, are, in the end, really worth it!
    Last edited: Jun 4, 2014
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,786
    Likes:
    3,064
    Cornwall, UK
    Well done - you did better than me! I gave up looking at bananablue when I did my search because I couldn't seem to get past the first page without registering. Today I just pressed the button twice after putting the postcode and suburb and got to the site! I have read some good reviews of bananablue.

    I had a look at the FAQs on Keane's and one says

    (I know that Tania can't eat some veggies.)

    They do seem quite expensive, but it is organic and it's not clear how much you get in a box.

    I see they do other food too on this page.

    Goodwood Fresh say

    which seems very reasonable.
  8. Indigophoton

    Indigophoton

    Messages:
    54
    Likes:
    95
    UK
    Yes, I also have this problem: I am too ill to be able to cook, so I can only buy veggies that can be eaten raw. For this reason I can never get the set box, but have to order what they call 'extras', individual veg of my choosing (which still come in a box..).

    Fruit en route www.fruitenroute.com.au offer the option to 100% customize one's box, and seem to have a very wide choice of available veg.

    First Froots www.firstfroots.com.au also offer lots of individual veg, along with a lot of other stuff.

    Both of these deliver to Tania's postcode (the trick seems to be, leave out the letters and just use the numbers from the postcode when checking for delivery). To find these, I searched for "organic box delivery adelaide", although neither of the two I've listed are specifically organic.

    Interestingly, leaving boxes in an agreed place, so that the customer doesn't need to be in, seems to be the default for Australia, and low minimum orders seem to be common - one of the two above quotes a min order of Aus$30, with delivery A$4.95, for instance.

    So I think there are a lot of options out there - we've just scratched the surface - and Tania, when you are feeling up to it, you should hopefully be able to find something, or a couple of somethings, that will suit, and solve the grocery issue.
    MeSci likes this.
  9. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    I still havent read the posts here to me yet. Ive had too many dramas going on Ive spent today in hospital and only just got discharged.

    I had a doctors appointment today. I didnt take the wheelchair as I thought surely I wouldnt need it as after all we park right outside the door! and of cause there are seats. I dont even stand at the desk there, my support worker does for me. ***sighs.. how wrong was I about not needing the wheelchair!*** Thou maybe I would of collapsed in it anyway and fallen out if I had been in it.

    Thou I could only get a single appointment with the doc (I went there to get the new referal I needed for my specialist).. it lasted what turned out to be a long appointment with the doc (which I had with my legs up the whole time, my doctor provided a stool for me for my legs).

    Turned out thou after that appointment I couldnt even make it the 8 metres out of the surgery door and collapsed right near the waiting desk (in front of it which I was passing by to get to the door.. hoping desperately I was going to make it to the car right outside). More dramas as then whenever they tried to sit me up a bit to try to move me (they were hoping to get me into a wheelchair) from blocking the front surgery desk, my body went into quite full on shaking (near full seizure, my hands started flicking everywhere and slaming into the reception desk) and they had to quickly lay me back down. (I was bawling.. of all places to go down at the surgery, I couldnt have gone down in a worst place).

    In the end they decided they'd best leave me there without moving me (Ive no idea what they were doing with patients who need to get to the reception desk while this was going on) .. and my doctor came out (she hadnt been aware all this drama had gone on when I left her room.. I had some surgery urses trying to deal with me) and decided to give me an IV on the floor of the surgery waiting room as she knew I really didnt want to go to hospital. (I guess the people in the waiting room were getting their entertainment for the day esp since I was in a skirt and was wearing a g-string.. till someone covered me by a sheet).

    My doctor thou then ran into issues as my body was shutting down and she couldnt get a vein, so she ended up calling for help from more doctors, so we (me, my support worker and her and the 2 or 3 nurses) then got joined by 2 more doctors. One of them finally got the IV into my arm.. but by this stage I was in shaking and about to have a seizure even thou I was collapse on the floor. I think I was starting to go into shock at this point, feeling very cold, my teeth stated chattering (my doctor was going "are you all right?" are you all right?" .. I just wanted to sleep at this point so kept going very quiet). Doctor took my obs where I was on the floor collapsed and my BP bottom reading was 100 and something .. 113?? / 15? .

    Cause things got so bad with my body starting to go into circulatory collapse and I guess cause I was also starting to show signs of shock.. my doctor decided I needed to go to hospital at that point so rang the ambulance (I was like.. please dont send me there!.. paranoid due to how bad I can get treated at hospital if I strike a bad ME/CFS/POTS doctor). So my doctor wrote out a letter to give the ambulance people to give to hospital. (My poor support worker went way way over time.. maybe up to an hour due to all this.. and I have her log book here left behind at my home which she is supposed to get her clients to sign).

    When the ambulance got there... the ambulance officer didnt listen to that I didnt think I could sit up even for just a couple of seconds (she wanted me to sit up so I could be quickly put onto the stretcher).. so when I then tried, I almost went into a fall seizure again and ended up back on the floor in shakes and close to a pass out. At that point it was decided to get me up on the stretcher using the board. (this incident of me going into such bad shaking scared the paramedic who previously wasnt listening, she then went nervous about me .. realising she didnt know a thing about this illness.. and called my doctor outside to discuss my case).

    Hospital drs were good (maybe due to my doctors letter?). I got given one bag of saline IV. Just before that ran out they did a quick laying and standing test (no way could they do that earlier as I couldnt sit).. I didnt see all my results but the nurse in a surprised voice commented on how bad they were. I know my orthostatic hypertension shoot up some in the only 1min test they did. They then gave me a second bag of saline IV I assume cause my results were bad still. After the second bad of saline.. they retested me and for the first time I saw my results actually stable! (I was like Wow.. my body can actually act normally with a couple of bags of saline).

    I had to catch a taxi home (not cheap, I really hope these ambulance trips to hospital stops happening so much soon!) which was a bit of a concern seeing how I can react to deodourants (I did tell the taxi company thou when I rang to make sure it was a taxi which hadnt had air fresheners in it). Turned out thankfully the taxi was fine, thou I had a panic as I realised at that point I didnt have my bankcard in my purse and started the think it was stolen at the hospital. The taxi driver actually told me I looked honest and I could pay the money into his bank account tomorrow. (turned out thou I found my bankcard on the cupboard when I got home so was able to pay him).

    The hospital doctor who did the discharge tonight (its almost midnight. I always seem to get out of their just before midnight) told me I MUST see my doctor tomorrow. I was like "I cant, I HAVE to get the rest of my shopping".. and she was like "dont you care about your health" **sighs.. she couldnt understand that its important too for me to have my groceries so Im eatting proper meals** She gave me a sealed letter to take to the doctor (Im not going to get to) tomorrow. Of cause I opened that letter as Im obviously going to have to seeing I cant do a doctors appointment tomorrow, obviously need to ring my doctor tomorrow and she's going to want to know what the letter says.. so of course Ive opened it.

    Now I can see better why Im sometimes getting treated like shit with my POTS ignored sometimes at that hospital. The hospital has my previous wrong diagnoses (of borderline personality disorder) in its records!! So there is another thing Im going to have to see if my doctors can do something about esp since it helps cause me to be wrongly treated at times at the hospital.
    .........

    Question.. Does anyone know if ME/CFS and low blood volume if that can do weird things to the thing they put on finger to test oxygen levels. In the ambulance I was getting strange by that I mean very low oxygen satuation readings, it was saying my reading was 75% .. the ambulance officers said that must be wrong as if that was correct I wouldnt be able to speak (I dont think they ended up being able to get an acceptable 0xygen satuation reading from me).

    Im wondering as I know our bodies adapt to states which would kill a normal person (eg stuff Ive read from dr david bell about how we can have low blood volume and be still walking around to the level in which a normal person wouldnt be able to function at all).. Im wondering with our low blood volume if something like that oxygen reading could be correct? I assume I wasnt blue around my mouth? thou I would of been pale due to the collapse.

    In my discharge notice it says my eyes were blinking very fast (fluttering the doctor said). Does anyone know what causes that? Ive had others say that too when Im very unwell.

    I ended up all wet with pee again at the hospital.. problems with the bedpan again. This time thou I dont think it was due to overflowing the thing but I dont know.. I cant figure out why that happened, I asked the nurse to check if it was positioned correctly under me and she said it was. This time they didnt end up sending me home in a hospital gown but instead had donated clothes and they found me a very nice skirt and top to wear home (which I can keep).
    ..............

    I got to go to bed so will share about how my actual appointment went (at least the collapse was after it and not before!) when Im next able (and hopefully be able to read the posts to me too).
    Last edited: Jun 5, 2014
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,674
    Likes:
    7,331
    Amersfoort, Netherlands
    @taniaaust1 - If your BP was 115/100 or so, than that looks a lot like Neurally Mediated Hypotension (NMH). The pulse pressure (difference between top and bottom numbers) can get very low in NMH. 25 and under is quite nasty, and is considered an emergency when it's caused due to blood loss. It can certainly be due to low blood volume.

    Low pulse pressure can also cause hypoxia. Basically pulse pressure shows how quickly you're circulating blood, and when it gets too low, you're not circulating blood nearly enough. This means that oxygen isn't getting circulated quickly enough as well, and that results in low oxygen saturation.

    If you were somewhat functional at 75%, it might be because your body has adapted somewhat to low oxygen levels. But it's still very nasty and needs to get dealt with. I tend to feel pretty bad at even 97%, even though 95%+ is normal. I've literally turned blue while having pulse pressure issues, but I didn't have a pulse oximeter yet so I don't know how low my oxygen saturation got.
    ahimsa and MeSci like this.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,262
    Likes:
    1,584
    Midwest, USA
    :hug: I'm so sorry to hear what an awful day you had.
    Could you reproduce the effect of the saline solution with oral electrolyte solution at home?

    Be sure that your advocate knows about this. You should NOT be having to choose between seeing your doctor and getting food. :mad:
    Last edited: Jun 7, 2014
    ahimsa and MeSci like this.
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,786
    Likes:
    3,064
    Cornwall, UK
    I too worry that Tania may not be maintaining her blood sodium levels. She may be consuming lots of salt but, like me, be losing a lot in urine, and need to increase her intake further.

    The best way for a doctor to test for this is, I believe, to measure the fractional excretion of sodium (FES/FENa).

    But I would also advise the doctor not to jump to conclusions as to the cause, if he finds that FENa is high in an ME/CFS sufferer, as I suspect that ME/CFS itself can cause it. That's one reason I have become very hesitant to bring new symptoms to doctors - they are likely to do inappropriate tests and reach wrong conclusions, as the weird biochemistry of ME/CFS is not featured in their textbooks and check lists/rule books.

    Does Tania's hospital discharging doctor not know that decent food is necessary for health? Did she think that Tania was talking about shopping for non-essentials? People often seem to think this when I talk about going shopping, saying things like "Enjoy your shopping trip", when I am just doing something essential (and tiring)! (OK, I do browse the charity shops when I have the energy and am not forced to rush home due to a full bladder, but that shopping is generally for things I need too.)

    Tania's recent collapse followed soon after her running out of food, so there may even be a causal link there.
    Little Bluestem likes this.
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    thanks MeSci. Im finally feeling okay enough to be going throu my replies back and have my health now "okay enough" to be focusing again on this. I plan to be looking into those this weekend (today/tomorrow). Its my priority this weekend.

    The nearest shop to me.. is a "not too bad at all" (it thou doesnt have everything eg when I needed a purse I couldnt get one here and it dont have much at all in the way of electrical stuff) supermarket complex which has two big supermarkets and one small dept store, so that is where I "usually" shop unless there is something I really need but cant get there. There isnt any "small" general stores nearby (none of those in my suburb at all).

    Sometimes it really feels like Im living in a third world country due to not being able to access the health care I need (I sometimes think some there can probably access health care better then what Im able to!) and my other needs eg just to get shopping being able to get met.
    MeSci likes this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    I really appreciate that so much as I understand that you yourself are probably struggling too (we all do). Thank you.
    MeSci likes this.
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    The only 5hrs per week support i get now for (dishes/shopping), DisabilitySA has given me for Aspergers (I suppose they believe that is a "real" illness where as obviously ME/CFS isnt to them). They wont give me any more (Im trying everything).

    My support workers dont specialist in Aspergers at all, they are just ordinary care workers (who are trying hard to understand my illnesses. Im lucky currently I have 2 such great support workers currently (thou I may soon loose one as she's applying for other work as the agency is only giving her 15hrs per week work at times. Hopefully when she goes I will get another good person.. or better still hopefully I will get the hours I need quick before she leaves and then she will probably stay at the job and working with me, so I dont have to go throu yet another change and starting all over again with a new person trying to learn about things and learning when they need to step in and help. (Its very draining trying to teach a new person about things!..where everything is in my home and about what to watch out for with me etc etc).

    The Autism Society of SA.. my experience with that is that it isnt at all interested in you if you are an Adult with Aspergers. When I was still wanting to do so and was able, I got told I couldnt go to group support group with them as I had multiple conditions.

    They told me if I had any issues to use their library to learn about things. (and then one time I rang their counselling crying and extremely upset .. that was probably over DisabilitySA issues.. only to have the counsellor not ring me back.. that was the final straw with my dealings with them.. I have not tried to contact them again after all that). So they've been no help to me at all other then providing the 2 experts to diagnose me (which I had to pay a lot of money for that assessment .. over $400). I bet they do child assessements free to those on health care cards????. Its shocking how adults with Aspergers are just left to try to help ourselves (actually I have heard that things can be shocking here for children with Aspergers too not getting the support they need, I saw that on current affair show a few years ago).

    I see what a difference there is for those with this depending on what parts of the world they are from. Ive spoken to those at the big Aspie forum "wrong planet" in the past and was surprised how much help others I met there in other countries often get for it eg I spoke to several who actually had trained service dogs and stuff to help them with various issues eg just to feel comfortable around other people and things like that. If you are in Australia, forget it.. if you are an adult with aspergers, expect to get no help at all.
    Last edited: Jun 6, 2014
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    Im not really worried about what reviews on places are like, Ive got far more to worry about then that. I just need to work out how to get suitable things for me.. its getting suitable products (very low carb gear) which I can have, is the issue.
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    Is there a reward for that? lol
  18. PNR2008

    PNR2008 Senior Member

    Messages:
    385
    Likes:
    533
    OH USA
    Probably.
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,518
    Likes:
    4,260
    Sth Australia
    OMG, now I understand why nothing was coming up, I didnt think of that even on a good brain day!!!. I guess that will be happening to me too with many others things I try to order to....trying to get the words right with the search, if I cant get the words right, I wont even be able to search for things :( .

    Lots of times I cant even remember what simple things are called (when Im online at forums it doesnt matter as I then can just use a different word or say something in a different way, at a shopping site, obviously that wont work!! (I didnt even figure out what I was doing wrong with the "kitty" litter thing). At times I have to word things a little weird on my shopping list due to word drop outs. Last time I went shopping I was struggling to come up with the word "carrot" to a support worker. I often at times will have to start describing an object. (the more I look into it, the more problems there are appearing Im going to have with it on top of the ones I already realise I have with the online shopping).

    ohh.. another thing I hadnt thought about. Yes that will be a big issue for me. I also have the issue of falling asleep at any time.. and I can be okay but then be falling asleep half an hour later so miss the door (which happened the other day with my worker and then missed my home support).

    :( Seeing so many more problems with them being pointed out to me, then already the major ones I had with it already.. I cant at this point see how the online grocery ordering is going to work well for me.

    I didnt know ebay sold cat litter. I'll check that out. I do have a PayPal account and currently it is workable (till I loose my password again.. my friend is currently not away so if that did happen, he'd currently sort it out for me.. when he goes away.. I usually end up not being able to use PayPal).

    I have checked out the foods on ebay the other week but found very little there I could eat in the way of stuff I could use for meals (there was lots of sugary snacky things).

    I was also trying to see if I could also get my sugarfree chocolate with no artifical sweeteners there seeing most supermarkets dont sell it, so I wont be able to get it with online order from most supermarkets. I did find some of the sugarfree lollies I buy usually and some sugarfree chocolates on ebay but for a CRAZY PRICES .. check these out.. you wont believe this unless you see it.
    http://www.ebay.com.au/itm/Wow-Butt...-/171241924702?pt=AU_Food&hash=item27ded0685e (from the supermarket if I go myself shopping I can get for a few dollars).

    There is only 2 results on the australian ebay for sugarfree chocolate (unless once again Im using wrong search terms?). The other result is something like a choc chip icecream looking thingy. The other chocolate must of expired on ebay since last week..there was another chocolate for an extremely crazy price too along the lines of the lolly price link I put above. How could they charge people that?

    I did on ebay the other day find a natural sweetener alternative I havent tried and will buy (a non sugar sweetener made from coconut sap). (I dont like .. oh boy word loss again.. the non sugar thing most have .. hope people can work out what Im trying to say.. and currently only have xylitol).

    Anyway.. I did check out our ebay the other week without much success.

    One thing people could really do for me seeing I dont use FB, is to push my petition to force DisabilitySA to help keeping me get to doctors.. I only have 2 appointments left they will help me get too (only cause they wanted more info.. one with my allegist and a follow up appointment) and will be then not be able to get to any of my doctors again.

    Ive got to go and rest. I'll go throu the other posts to me here hopefully tonight when Im feeling better again.
    Last edited: Jun 6, 2014
    MeSci likes this.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,786
    Likes:
    3,064
    Cornwall, UK
    Like most sites, PayPal have a service to help people who have forgotten their email address or password. You just click on the link below the sign-in form.

    I searched Australian ebay section for 'sugar free chocolate' and got these - any good?
    Sometimes it's best just to put, e.g. 'chocolate' in the search and then try to get into the right section, which is Alcohol and Food (nice to see the Aussie priorities! :D) > chocolate, sweets. Once you are in the right section type 'sugar free' (two words) and search.

See more popular forum discussions.

Share This Page