1. Patients launch $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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
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. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,604
    Cornwall, UK
    It seems crazy that someone like you, who is already struggling, have to pay high prices for things and have to undergo so much exertion just to buy small things. How many glucose strips do you get for $50? I get mine on Amazon or ebay. I know you have problems buying things online, but is there a way that someone could do it for you and you give them the cash? Even if they had to post the things to you, it would probably still save money for small things.
     
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    In future situations where any of the possibilities would be acceptable, could you ask your support worker to make the final decision for you?
     
  3. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    Thanks. My brain hadnt even thought that one may be able to get glucose strips by Amazon or ebay. (yeah I always forget my paypal password and often screw things up when Im trying to order but my friend isnt away at the moment so I can get him to give me a hand next time he's over... probably will be in 4 days time, Thursday, I'll add this to my long please help me with list).

    umm that's a point too. I dont even know how many glucose strips I get for that, I didnt think to ask that till you've just made me aware of this now. I know last time I did get some, there was a lot (maybe 100?). I'll check out the pricing at those places, thanks
     
    MeSci likes this.
  4. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    With my Aspergers thou, I can get very picky and end up upset if I dont really like something and then wont use at all what I dont like cause I have black and white thinking with things (no halves, something I decide is either right for me or isnt). I dont think like normal people do with the black and white thinking.

    I know it would be easier if I could do something like that but with the Aspergers I wouldnt be able to get the whole thing out of my head if a choice was made that I realised I didnt like (hence why in the end with the ME affecting my ability to make any choice, I ended up taking them all). These two health issues DO NOT go together well!!! further complicating things for me. I'd have an easier time if I was normal (with my Aspergers I usually know very very clearly what I want and what I dont want.. I hate how ME screws so much with the brain).

    The next day when my brain was better, Im now clearly able to know which one I wanted (actually would of grabbed two as the one I realise now I liked the most doesnt fit into all my handbags). The further white one I got (which I wouldnt use for every day use as it would get dirty fast and show dirt) will be great thou too for the rare occassions I get taken out (birthdays) as its white and I wear a lot of white things out.

    oh well, Im not going to beat myself up over this as this is just how life goes when one has multiple health issues. I know I did the best I could of done for the happiest outcome for myself. Thou this situation still sucked.

    My youngest daughters birthday is in a couple of weeks time, so for her birthday I'll get her to choose one of the two which are now spares if she likes one of them.. when I get to see her. I havent seen her since way before xmas next year (its probably been 8mths) but my mum has been talking about arranging for me to be taken with her to go and see my daughter and grandchildren.
     
  5. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    Even my Aspergers affects me with being able to press "like" for your post as its wrong in my case. It sucks, I know I should like your post as I really do appreciate suggestions as I do often miss things and miss the obvious and need them pointed out to me .. but my Aspie brain goes it cant like something wrong.. and anything which isnt a good idea good idea for me my brain thinks in turns of wrong and right (not much inbetween). I wish there was a "thank you" button.

    Anyway, thou I cant press the like. I really want to say thank you for your post. (I had more energy to force myself to act like normal people do before I had ME so my Aspergers wasnt so noticable and such an issue. Now I just dont have the energy to deal with myself with it and fight with myself with it all the time).

    Thank you Bluestem
     
    MeSci likes this.
  6. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    back to ME

    Seeing I have a GP appointment coming up in which Im also going to ask for a blood test to check my potassium level, I thought while Im at it, we should investigate the cough Im getting.

    Hopefully we will get time, Ive booked a double appointment and the time goes fast.. I get a 30min appointment. I've got to also fill her with how I had to be ambulanced to hospital, dehydrated and given the drip, about the hospital raising my med, and I also want to ask her about glucose strips and get a prescription for that if at all still possible, so we will probably be all out of time by then and not get to this problem but just in case we still have any time. Im up early this morning again, sleep disturbed, woken up by coughing.

    The cough I get happens when Ive done too much and are crashing (in which case I can then be getting it both day and night) or tends to happen more in night/damp air and it sounds just like croup on occassions. Im very aware what croup sounds like as my sister as a child had croup for years and years (she didnt outgrow till years after drs said she would, she did thou stop getting it while she was a child still. She used to end up having to be put into hospital in an oxygen tent due to it).

    I thou never got croup as a child. Its curious that Im getting a cough like croup when I know adults arent supposed to get that if that is what is going on.

    So my question is what could I have going on? Does asthma (which I get at times) can that at times sound like croup? What ME reactivating viral stuff we get can sound like croup at times?

    Anyway.. I need to make up a list of things involving harsh cough in which my dr could get my blood tested for. (I cant remember what but i do remember there is one common ME cough thing I hadnt been tested for yet). My chest often feels funny with it but I dont know how to describe the feeling I have in my chest. Something is going on here and I really do need to figure out what (as this cough is the same cough which if it gets bad and I end up coughing with it for weeks, can end up making me start to cough blood streaks in my spit).

    Whatever this is flaring, last year it once made me feel worst in my chest at times then when I was in hospital on a drip with double pneumonia (I only didnt call ambulance for my severe cough on that occassion as I was scared to go to hospital with my ME and MCS perfume issues). On that occassion, got bad after 3 weeks of coughing day and night, cause of my hospital fear of having to deal with completely naive to my conditions drs/nurses, I ended up going to bed prepared I could die during the night (I had breathing issues with it and actually truely thought I may not be waking up again, this was also when I was starting to cough blood). Anyway.. I really should get it worked out what Im dealing with with this cough.

    If you know the recommended test for whatever you are suggesting, can you please give me that info too. thanks
     
    Last edited: Apr 12, 2014
  7. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    My last post has got me thinking more about my family history and unusual issues.

    Could my sister not outgrowing croup like the doctors expected and getting it also while much older and being so severe with this many winters be a sign of an immune problem? (that isnt my sister which now has ME/CFS).

    I think my own daughter with the HPV she had for years and her body couldnt fight like a normal persons body would,so all the surgery she needed due to this.. 1:25,000 case to get vocal cord papillomas due to it and even then her case was an unusual case of it (approx 17 surgeries due to it, it lasted years longer then the doctors believed it would). I can only think that must indicate she has some kind of immune issue.

    and I didnt produce antibiotics to at least one of my vaccines so had it done over and over (and still dont know if I did in the end).

    thinking about my sisters childhood croup.. maybe its another sign that some kind of immune issue is going on in my family and hence with me? (unless that sister was just run down, she did have huge tapeworm which would of been stealing her nutrition for years). Anyway.. its thou making me think more about possible immune issue going on in the family.

    Anyway.. I'll put focus on the cough stuff if we get time (and leave trying to solve a possible immune system puzzle going on with my ME at a later date). Like many here, I havent had good immune testing done. Does anyone know if NK Cell function test is available in Sth Australia?
     
    Last edited: Apr 12, 2014
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,604
    Cornwall, UK
    @taniaaust1 you explain so clearly the problems that Aspies have, and I'm sure it will help other people to understand Aspies and treat them appropriately. As a borderline Aspie I recognise a lot of the problems you describe, but only being borderline means that they don't affect me as strongly as they do you, and I can overcome/control them more easily than you can. I can see how much of a 'double-whammy' Asperger's and ME are, thanks to your clear explanations. What a shame health and disability services don't know, so that they could make your life easier (and those of others with the same combination). If only you had the time to write a leaflet on the subject! Maybe one day.
     
    taniaaust1 and brenda like this.
  9. brenda

    brenda Senior Member

    Messages:
    1,329
    Likes:
    668
    UK
    I wonder if there is enough interest to have a thread on Aspergers. I would really appreciate some information and advice about it as I am pretty sure I have it although never diagnosed. I find that it impacts my other health problems a great deal especially cognitive functioning. I wondered whether I would be more likely to get support and help if I had a diagnosis, as it is I get no help at all being in the UK. Any experiences of others with this condition would be greatly appreciated. As many of us have autism genetic defects perhaps there are more here than we realize?
     
    taniaaust1 likes this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,604
    Cornwall, UK
    There already are, e.g. here

    and here

    If you do a title search for 'autism' you will find many threads on it.
     
    brenda likes this.
  11. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    Today the physio is coming in 1hr and Im soo nervous Im feeling sick as I got stirred up this morning when I started thinking that I forgot to tell this new person I have issues with MCS and hence do not wear perfume or artifical deodourants when you visit me. I was in even more of a panic when I couldnt remember what org she is from so couldnt ring her to say something so I ended up having to ring DisabilitySA to ask them who the org the physio is from is (any time I have to ring them due to the issues Ive had with them, it just distresses me more).

    Well I believe DisabilitySA may be avoiding my calls, I asked to speak to the duty officer (seeing last meeting they told me I didnt have a caseworker anymore or anyone filling in as one for me as they see no need for it) and they said they would go and see if the duty officer was available.

    So they go off and end up coming back and asking me for my name (obviously the person was there and mst of asked who it was), so I gave them my name and they go off again and then come back (in about the same time period they went off the first time, less then 1 min) and tell me no the duty officer isnt available to speak to me and they'll ring back later. :( (this seems to be the norm when I ring now, Im to the point that I dont want to give my name, as I know when I do, they'll put off talking to me!!).

    I ended up getting very upset over this as I really needed to make sure the physio isnt going to rock up covered in perfume or wearing chemical deodourant (and have been in a state of nerves ever since they tried to put off my call). Cause I was then starting to get upset and saying I wont be able to see the physio if she arrives like that, they ended up putting me onto someone.. who did the "reassuring thing" saying that other agency knows I have chemical issues so the physio wont arrive with them.

    Thing is I since remembered that I did once see a different physio to the one I usually deal with from there and SHE DID arrive wearing things which made me ill.. and Im thinking the one coming today is probably that one again. Anyway.. the one I spoke to on the phone from DisabilitySA told me she'd ring and make sure for me (for reference.. her name was Kerry). Im kicking myself as I dont trust them to do so and she probably just said it to get me off my back, I got distracted by the issues Id had just in getting someone there to speak to me so at that point forgot I was after a phone number so I could ring myself to make sure.

    Anyway..so now Im trying to calm down due to all this and concerned that they wont ring her to make sure. (my anxiety over this is so bad right now Im trying not to cry.. I know I cant trust Disability services as they do not take my condition seriously. Its so upsetting that I go to such efforts to try to control my ME/CFS only to have them screw me over time and time again and this will probably end up being another case of that. I hope Im wrong).

    It is going to be highly distressing to me if I have to send the physio away to protect my health, whos coming to try to help organise stuff I need here.

    UPDATE - Turns out that Kerry (DisabilitySA) has rung them so I now can calm down. I had to ring DisabilitySA again as I saw on my calender I had the physio down for last week .. so thought I'd screwed up the day and then missed it last week (more stress at that thought!), so had to ring to Disability services to request again the phone number of the other service. Turns out that Ive wrote the appointment on the wrong day on the calender ***sighs I do that A LOT** and I was correct thinking appointment is today.

    Now Im just confused at the time, I thought it was at 12 but its now after 12.30pm but Kerry has just reassured me that by the other service it is today. (oh my brain!! Not only did I write the appointment down on the wrong day but I also forgot to write the time in which often happens).

    She didnt want to give me the phone number for the physio coming out as she said I'll only be seeing that physio this once and then I'd need them to approve another referal from DisabilitySA if I was to ever see her again (they've really controlled who I can see!! They took years to give me a referal in the first place and now obviously its limited). I guess that means that the other physio from that service who seemed to possibly understand ME/CFS or at least didnt judge this illness, I wont be seeing her again either :( .. . that other physio had been very supportive of me.. trying to get DisabilitySA doing the right thing too and having long phone calls to them over my case).
     
    Last edited: Apr 13, 2014
    Little Bluestem likes this.
  12. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    Thanks for explaining what goes on when Aspergers and ME join forces. I'm not concerned about the 'Like' or lack thereof. I figure if someone takes the time to reply (civilly) to my comment, they must have liked it.
     
    taniaaust1 and MeSci like this.
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,604
    Cornwall, UK
    I hope things went OK. I am also very chemically sensitive, and my mask no longer works against the ever-more-insidious properties manufacturers are engineering into their ghastly toxic products, so I have now had to buy a swimmer's nose clip, which is uncomfortable but solves the problem. I have to wear my mask over it outside to avoid swallowing flying insects! But indoors just the clip is sufficient. As long as I avoid breathing through my nose I am OK. This is probably because the nose provides direct and rapid access to the central nervous system, which the mouth doesn't. (That's why inhaled anaesthetics work so fast.)

    People often swear blind they don't use perfumes, and they probably don't use personal scent. The now-ubiquitous presence of artificial 'perfumes' (if you can call such a vile stench a perfume) in laundry products will overwhelm any personal scent, rendering it pointless. In my experience it is usually these that are the main source of toxic 'perfume' exposure. They have been designed to last ever-longer on fabrics, and even to offgas when the fabric is pressed. A similar property has been engineered into deodorants, many of which are now designed not to release their smelly chemicals until they come into contact with the wearer's skin.
     
  14. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    Update

    WELL IT HAPPENED!! After all that and all the reassurances I got from Kerry at DisabilitySA, it happened. Im so angry now as I feel like they never tell me the truth. I KNEW this was going to happen and hence why I was so worked up over it. It turned out she DID NOT talk to the physio who was coming to see me and the physio arrived covered in chemicals!! The physio felt so bad over this, (I dont know now, I may of shed some tears, I was extremely upset by this.. I couldnt even stay outside and talk to her as the chemicals were so strong and the phy sio was so appologetic but as I said to her, it wasnt her fault at all as she wasnt told).

    I couldnt let the physio inside so she couldnt measure up my bathroom for the shower chair Im needing so we've now had to make an appointment for next week so there goes another week in which I could of otherwise got to one of my much needed specialist appointments which are being held off while I try to sort out all this other stuff. As I have another appointment the week after as well.. so now it means I wont be getting to my specialists to May. Im so angry about this!! Peoples changing appointments with me or the screw ups, just keep making other needed appointments further and further down the track.

    Ive been so upset about this latest appointment not being able to go ahead, which was completely avoidable (how hard is it to make sure the person gets a message or to to have given me the phone number I was needing so I could make sure!)..if DisabilitySA was being efficient and truely helping me, that I had a very bad sleep and have given up sleeping for the night at this point so are up now when its still dark. Im feeling soo anxious over all the issues with Disability services. Shit..how do I continue working with this organisation.. but Im forced to all the other services for the disabled get their funding from it. They distress me soo much. I cant hardly bear having to phone them without it upsetting me at this point.
    ......................

    Today my home support comes for 1.5hrs and in that time they are expected to take me shopping (we need two supermarkets to get the things I need due to the special diet Im on, have to pack wheelchair, set it up down there, its tricky with the leg parts etc.. all the little extras which take time when we shop with me, extra loo stops etc) and do my dishes which havent been done for a full week now. Issue today is that there is something which has been advertised that I really want, someone in the suburb right next to mine is selling a cheap, good condition, second hand fold down for transport compost bin and for hygiene, Ive decided this is needed..

    Ive been throwing all my food scraps outside (as I hate to put them in the bin inside) where the may even be attracting rats by now as Ive been throwing them outside for over a year and with the grass not being mowed in many many months (over 6mths)... well yeah, I probably do have rats all out there by now so I really want this compost bin!!! To get this means that my dishes will not get finished today (thou the workers will maybe get time to start them).

    So on this occassion due to lack of enough home support means its going to 10 days before my dishes all get done, the choices I have to make on a daily bases on what to do and not do is dreadful. (Thank you Disability services of Sth Australia for the support you give those who have ME/CFS! .. note this is said sarcastically).
     
    Last edited: Apr 14, 2014
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,604
    Cornwall, UK
    I'm so sorry they messed things up again. There should be a blanket rule that care staff visiting people in their own homes should ensure that they have not used any perfumed products. Indeed there should be similar rules in healthcare establishments. In Canada there are some such rules, for example see here.

    I hope you get the composter you want. If not, can you use a ratproof container? Anything is better than throwing edible stuff down randomly. I had an invasion of rats a few years ago, and it can cause you an awful lot of trouble, exertion and health risks. Prevention is much less hassle than sorting out the problem after it has occurred.

    A lot of ready-made composters are not rat-proof. You can ratproof a container by covering it with fine wire mesh. I had to do that with my compost tumbler as rats were gnawing the small holes in the container and making them big enough for them to get in.
     
    taniaaust1 likes this.
  16. brenda

    brenda Senior Member

    Messages:
    1,329
    Likes:
    668
    UK
    MeSci
    You are not supposed to throw food waste into composters. They are for raw vegetable waste, egg shells etc.
     
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,842
    Likes:
    4,604
    Cornwall, UK
    I guess it depends on what you mean by food waste. Even though it's not generally recommended to put cooked food waste in ordinary composters, if the choice is between that and throwing it on the ground it must surely be better to put it in some kind of container, and if a composter is all you have, I think that will have to do.

    There are some guidelines here.

    I think that Tania's range of choices is very limited due to lack of money, lack of transport, etc.
     
  18. brenda

    brenda Senior Member

    Messages:
    1,329
    Likes:
    668
    UK
    I don't actually have food waste, that is cooked or bought cooked so don't have the problem. It goes in the freezer if there is any. Tania could do the same and give it to someone who calls to dispose of if not needed or stored till the day the refuse collectors call.
     
    Last edited: Apr 15, 2014
  19. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    oh wow.. Australia must be backwards!
    .........

    I hope you get the composter you want. If not, can you use a ratproof container? Anything is better than throwing edible stuff down randomly. I had an invasion of rats a few years ago, and it can cause you an awful lot of trouble, exertion and health risks. Prevention is much less hassle than sorting out the problem after it has occurred.

    A lot of ready-made composters are not rat-proof. You can ratproof a container by covering it with fine wire mesh. I had to do that with my compost tumbler as rats were gnawing the small holes in the container and making them big enough for them to get in.[/quote]

    ohh. my brain hadnt figure out that if I did/do have rats outside, that they could do that till you said. The fine mesh idea is a good one. At least if it turns out that I have got rats out there, I'll know once all the scraps are in the compost bin and I'd then be able to see where they've dug in (I assume they'd dig under before they ate throu?).
     
  20. taniaaust1

    taniaaust1

    Messages:
    8,265
    Likes:
    5,221
    Sth Australia
    Brenda. I do not have people here all the time. My support workers arent funded to come on weekends, nor on public holidays eg take tomorrow for example will have a support worker here and then wont have anyone here for FIVE DAYS. My friend cant come at those times either seeing his wife thinks he's at work when he comes and helps me at times so he cant do anything for me ever on Weekends and public holidays even when they arent interstate helping his mother.

    Im also got sensitivity to molds (so cant have molding foods in my bin) and have had huge ant issues in my home.. they even get into the inside bin, chew throu bags etc. I cant be leaving food inside.

    70-75% of my food waste is vegetable scraps as I cant eat processed foods due to my insulin issues due to the the sugar etc they add. All my foods have to be freshly prepared so that makes a lot of scraps. (I'd have 95% vegatable scraps if it wasnt for the fact I burn so many of my meals so that then becomes scraps too!! hence why Im saying I only have 70-80% veg scraps).

    There is also the issue currently of me being too exhausted after shopping trips to put food away and needing to rest next day too (support workers are out of time often so often dont get my shopping put away!)... this of late has been often ending up with the situation due to left out things or meat not ending up in the freezer of things starting to go off (its happened the last 3 weeks, Ive ended up wasting about up to $20 a week of food due to this issue). My meat like that, say it sat 5 days in fridge and I only just found it and its now starting to turn, I do then freeze when I find it and then send it home with a support person whenever they are here next for their dog or my friends dog).

    eg this week. The cheese I brought was wasted. I had fill in worker as my other was away, who as we were running out of time while at the shops, I sent her home with my shopping to "try" to get it all put away (on this occassion it was managed) while the other worker took me to get a few things I needed from a different shop. The next day I found my new cheese in the cupboard instead of in the fridge!! (of cause no good then). Obviously the product which the worker wasnt familiar with, she obviously didnt realise what it was. (I know cheese doesnt go into a compost bin).

    Ive had that happen quite a bit with various products as Im not buying common products/brands which workers are familar with or recognise (everything I buy is based on having lowest carb content). Im thou surprised about the cheese mistake she made, I guess she was really rushing to try to get my shopping away.. as it was I run the other worker over time yet again!

    Other times due to brain fog, its me putting fridge stuff away wrongly eg in a cupboard in which cause I then find it off, so more waste. Its all soo frustrating the different issues I have going on here. Whenever Im up on my feet, my ability to think has dropped due to my low blood volume and Im then making A LOT of mistakes with whatever Im trying to do.

    Anyway.. much of the food waste isnt my fault but due to the issues going on here with how sick I am and not enough time for others to be helping me.
     
    Last edited: Apr 15, 2014

See more popular forum discussions.

Share This Page