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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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. Kina

    Kina Moderation Team Lead

    Messages:
    5,793
    Likes:
    4,669
    Ontario, Canada
    Tania, it could be that they are investigating to see if you need more hours. I wouldn't make assumptions until you know. When I worked in Community nursing, I used to do assessments for people who required support in their homes, and reassessments were done if patients complained they weren't getting enough support. In these cases, we never went in looking for less support hours. I am not sure how Australia functions, but in Canada, the diagnosis was a moot point. If a person can't carry out activities of daily living then they were assessed for that whether they had Cancer, MS, were post surgery, had Alzheimers, had mental illness, developmental disabilities etc.


    Do you want mental health services which usually entails some kind of psychological counselling. If you don't let them know. Maybe they think you need help coping with your illness. It is your choice whether you want them and they shouldn't be making you do things that you don't want to do. On the other hand, sometimes it works in you benefit if you say 'well being so ill with ME is very difficult so maybe some coping strategies would help'. Then you can say they would have to provide a worker to get you there. I think what I am saying here it's better to be open to possibilities because then they think you are working with them. If you get angry at them for suggesting you have psychological issues, it just confirms their beliefs.


    A diagnosis of Borderline Personality Disorder is a crap diagnosis because it means nothing. Tell them how you feel about this. A simple statement that you were having difficulty coping which led to you being suicidal should be enough. Don't be really negative or get angry about the medical profession because then they start drawing stupid conclusions. Don't focus on all the negatives. Describe what you can and can not do because you are ill in concise terms. I always used to ask 'What do you need help with, what don't you need help with'. The best answer is to state what you can do independently and then state what you can't do and why.



    If you mention jail as an alternative for not getting support hours, they will likely think you have psychological issues. This isn't the answer. Focus on the need for your five hours. It's not like you are asking for a extreme number of hours.



    Worrying about what might happen isn't good for you. It could be that they are looking to give you more. I know when patients complained about services here, it was mandated that we had to go out and reassess the situation. I can't think of one case where we decreased the hours if they already had them.


    I wouldn't make any assumptions.


    Hold onto the hope. Remain calm. Tell them what you can do, what you can't do, what you are willing to do and you might get a good outcome.
     
    LucyS, Valentijn, taniaaust1 and 2 others like this.
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    You do not HAVE to get the doctor to understand. It would nice if he did, but ultimately you have to do what you think is best for yourself. I think eating something would be better than eating nothing.
     
  3. Lynne B

    Lynne B Senior Member

    Messages:
    106
    Likes:
    97
    sydney, australia
    Wow, Kina, that's really good to hear from the other side, to get an understanding of how the support services may be thinking.

    And Tania, I agree with Little Bluestem too, that eating enough is a priority every day! I think the best way to break out of the misery of the push/crash cycle is to plan ahead each day and do the hardest cooking when you have the most energy. (Maybe for lunch rather than dinner.) Also have a fallback position, what food to reach for when desperate—even a glass of milk or piece of bread is better than nothing.

    Cheers, Lynne
     
    Valentijn likes this.
  4. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    I do only cook now when Im feeling up to it (its why I miss so many of my meals). All cooking isnt easy for me as it means Im on my head having trouble getting blood to my brain. (Oh LMAO.that mistake is so funny that Ive decided to leave it in, shows Ive been upright too long, I meant on my legs not on my head)

    Yeah that is what I do now.. when I dont eat.. I go for a glass of milk (but it isnt really the same as having a proper meal). I dont eat bread/cereal due to my carb issues (and I may have gluten issues too..lots of celiac disease in my family). I sometimes have 3 tiny crackers with cheese (only 7g carb) with those small cans of onion/tomato flavoured tuna for a meal (yeah I know, not good if I do have celiac disease) but my specialist gave me a hard time for eatting those crackers (eg he goes "dont you want to get well" as those little crackers were a breach of his diet).
     
  5. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    it comes a priority to have a doctor to understand ones situation as one NEEDS the doctors referals and his letters for the support services, for the transport services and everything else.. and without that if one needs the help, one is screwed. Everything hinges on hanging a doctor to back one up on ones severity and do forms etc.

    I wasnt able to get onto Disability allowance for 13 years thou I wasnt capable of working full time or even part time most of that time (I went throu hell due to that).. and not having a doctor which understand screwed me completely in that area..those of us who have severe ME/CFS NEED understanding doctors for all kinds of matters, the disability system doesnt work without them.
     
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    Keep foods for non-cooked meals on hand. The meal replacement shakes can be your fallback. although including one a day would not be bad.

    P.S. We both know that 3 tiny crackers will not prevent your getting well. If you do have bread/cereal/crackers, it would be best if they were whole grain.
     
  7. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    Yeah I know that is how it "should" work.

    Its just that this gov agency who is currently doing the investigating is exactly the SAME GOV AGENCY who completely rejected me as a client for 3 times over 2-3 years in the past (I finally struck someone after I had a emotional meltdown, distressed to being suicidal over lack of support and over my third knockback who actually then did approve me. those knockbacks by the same agency investigaing me now and not getting the help I needed is why I ended up in jail before, why I became so desperate before).

    They didnt do the right thing and go by the fact that I couldnt do daily activities which was what the decision was supposed to be based on, they just listened to some bad doctors at the time which I had. Due to me having ME/CFS they denied me any support at all in the past 3 TIMES just due to the illnesses Ive been labeled with. This is where all my fear is coming from I guess... cause they've not done the right thing for me for 2-3 years in the past ,deeming me fine cause they thought CFS isnt a severe illness, when I was in a worst situation then I are even now and couldnt function. So my fears here are based on my past history with this gov agency and its bad decisions on my case..

    The issue is how ME/CFS is viewed where I are. I cant even get the heating and cooling rebate here for those who have disabilities and who cant handle temp extremes as they dont deem ME/CFS to be an illness which fits/qualifies (they wont believe we have issues with the heat), so all ME/CFS cases have now been offically ruled out for it thou that rebate is meant to be for those who get sick with heat/cold. They dont care I collapse.. Im still knocked back for it due to the NAME of the illness. They arent really considering the issues we have and what it entails and just basing their decisions on the name of the illness and their own "beliefs" and whatever not really knowing doctors say.


    Nope.. Ive already had 4 years of completely useless to me therapy in the past DBT etc etc. They are looking for info on me to make their decision on whether to give me more support hours hence what the ticked boxes on the form is about. (if they did investigate into my mental health..other then finding out that I have a past BPD diagnoses Im wanting to stay off of my records, they would find nothing to support me getting more home support at all. I arent currently suicidal or depressed. (I once by a doctor was even told that I cant have ME/CFS cause I wasnt suicidal or depressed at that time.. so much bullcrap). If I start unticking their boxes,crossing off what they've crossed before signing, its going to make it look like Im trying to hide something. (so Im darned if I do and darned if I dont).

    The only therapy I'd be happy with is more advice in dealing with my Aspergers as that still does cause me issues at times with people, so Im fine with them contacting the Aspergers assoc which they have ticked. (I have Aspergers meltdowns at times Im under high stress mostly towards my boyfriend so would like help around that one).

    I tried that one in the past and it backfired on me big time as a doctor then who had been going to treat some of my symptoms, then decided to "wait and see" (his words) approachand just focused on my mental health then for years.the whole 3 years I was getting counselling. Due to that I went another 4 years with not having any of my severe ME symptoms treated and left with things like severe insomina, the POTS etc to try to deal with myself without meds.

    After I got officially diagnosed with the Aspergers and also the hyperinsulinemia (food issues causing mood swings, I tried to get the wrong BPD diagnoses taken off my records as due to that, many doctors wouldnt give me meds (BPD people are well known for doing things like ODing on meds and many doctors believe BPD patients lie for attention) but they said they cant remove the diagnoses as I'd been diagnosed with it (even thou the other things I was later diagnosed with covered my previous BPD symptoms and had those gone while Im sticking to my special diet). At that point I had to change ALL my doctors (so none of them had a mention of BPD which would be passed on to others when/if my medical files got sent to new doctors) to escape the BPD diagnoses so I could finally get some treatment for me ME symptoms. Yeah it is a crap diagnoses but with it it can cause doctors to treat one even worst then they do usualy to ME/CFS people

    Thanks Kina.. your post did make me feel more hopeful, thou they've proven to me several times in the past this agency cant make good decisions around ME/CFS, I need to stay hopeful that this will be the second time they will make a correct assessment (their rating so far is 3 knockbacks due to not believing me and that Im quite sick and 1 approval.. fingers crossed they will do the right thing by me this time)
     
  8. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,690
    Likes:
    10,127
    Amersfoort, Netherlands
    With regards to food, it might help to compromise more. Eating something that is "bad" according to a doctor is a lot better than eating nothing at all.

    There are things I want to avoid on a daily basis if at all possible (like MSG), but if I'm really struggling I'll risk it. And I always try to eat unprocessed foods that I know are safe for me, but sometimes I know I won't be able to. So it's essential to have a backup plan on hand so that there's a middle ground between the ideal meal and an insufficient or completely missed meal.

    Perfect adherence to a diet or any other regime is only something to attempt when it's not interfering with your ability to survive from day to day.
     
    taniaaust1 likes this.
  9. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    Im looking into meal replacements now (ones Ive tried in the past I've reacted to with reactions like complete bowel incontience, headaches etc). I cant remember if Ive tried boost before or not, I may of (and I dont know how the specialist would feel about these either, I guess I'll find out next time I see him and he asks me if Im following his diet to stop diabetes). I noticed thet even the Boost glucose control one does seem to have some added sugar to it, so Im sure the specialist wont like it but I'll see. My other insulin specialist wont even allow me to have by no added sugar flavoured yogurts due to the sugar in the fruit in the yougurt which seems less innocent then the Boost with a bit of added sugar.

    http://www.boost.com/nutritional-drinks/boost-glucose-control

    Casin (which I may be intollerent too).. is that more or less in the protein part of the milk? (Im wondering if that could be why ive reacted to some of the meal replacement things in the past). I cant see either if that Boost has artifical sweetener in its lower sugar glucose control one? Does anyone know? (im being wary with it as it doesnt say anywhere I can see that its free of artifical sweeteners). I cant find an ingredient list for it which makes me a bit suspicious on what its ingredients are.
    ........

    I just found the Boost ingredients at another site
    Seems Boost (even the glucose control one) not only has added sugar.... but also has artificial flavouring added to it too. I just checked out the vanilla flavour but that has artifical flavours in that too. (Im not as bad with artifical flavours as I are with artificial sweeteners where the slightest amount often makes flares my ME quite bad but still can be not good with some artificial sweeteners.

    There are better meal replacement things around for those who have issues with sugar (heapsreal) may of mentioned one before but I still need to find out about the casin thing.. is there is more casin in these things milk protein products then in normal milk?? as I think that is what I get a bad reaction to as far as milk goes and why I need to limit the amount of milk I get per day or I get ill.

    I'd rather skip a meal then take a product which makes me feel ill or sick.
     
  10. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,690
    Likes:
    10,127
    Amersfoort, Netherlands
    Your specialists are telling you what they want you to do. They aren't tell you to not eat at all if you can't do what they're telling you. And if they are telling you that, please find a regulatory board to report them to for malpractice :cautious:
    Milk protein concentrate is the main ingredient, and casein is a milk protein. So it probably has a ton of it. But if it's just a matter of intolerance (and even digestive problems) it's still better than not eating at all. Though there might be a better option out there for you.

    Due to my various issues with dairy and egg, I find that searching for "vegan" options can be particularly helpful in finding something with safe ingredients. So "vegan shakes australia" (without the quotes) brings up options on google. Meal replacement and protein shakes are expensive and vegan options usually even more so, but it might be worthwhile if you just need a few on hand for emergencies. It's a great way to stop a "little" mess (you being too sick to cook) turning into a bigger mess - your health declining due to not eating :D
     
  11. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    I just got my casein question finally answered, I looked it up in wikipedia as Im sure the part im reacting to in the milk is casein (as I was tested to find out if it was the lactose and it wasnt that milk component Im reacting too, casein is the next commonest thing people react to in milk) http://en.wikipedia.org/wiki/Casein .

    Unfortunately it turns out that, according to wiki

    "Casein (/ˈks.ɪn/ or /ˈkˌsn/, from Latin caseus, "cheese") is the name for a family of related phosphoproteins (αS1, αS2, β, κ). These proteins are commonly found in mammalian milk, making up 80% of the proteins in cow milk and between 20% and 45% of the proteins in human milk.[1] "

    :( Casein makes up 80% of the milk proteins in cows milk. So that makes more sense to me now why I reacted so badly in past to high protein shake (I ended up having to wear nappies due to complete bowel intollerance to it) and further supports its probably the casein Im intollerent too.

    With the kind of extreme diarhearr (explosive) protein shake gave me in the past, it would be pointless even to take it even i I was prepared to be wearing nappies and shitting myself as I wouldnt be absorbing it well anyway seeing it makes my system react to that when Im having protein shake with nothing else. I guess Im best to just stick to my glass of milk per day (sometimes Im currently getting away with having two without noticing ill effects) and hope I can keep tollerating that.
     
    Valentijn likes this.
  12. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    sighs..yeah ive been made to feel dreadful around what Im eatting due to Dr Mitchells lack of understanding how things are for me. I arent being told not to eat but Im given a hard time for missing meals and being told I MUST follow his diet even when I told him I cant. (that doctor has made me cry before at his appointment.. I had to run out and cry in his toilet during his appoitment as I felt he was giving me a hard time, I feel VERY INTIMIDATED by him, he has a very dominant personality).

    In the past.. I developed eatting disorder too (and started starving myself like anorexics do cause my life felt so out of control due to the ME and my food was the only thing at the time I could feel control with (went from a size 12/14 down to only a size 8 which is small by Aussie standards, due to the eatting disorder and starving myself to feel like my life was somehow in contol, hence eatting disorder for a year or two. It was quite hard for me to recover from that eatting disorder), so its probably quite bad that the doctor is making me feel guilty for eatting when Im really trying hard to be doing the right thing. (but in his favour he doesnt know I once for a time developed an eatting disorder). But unfortunately I now do feel guilty breaching what he wants me to do (and have to get my head around this..it upsets me Im annoying him as I cant stick to his diet), I know I shouldnt let his words bother me either (dont you want to be well? and "you've sent your condition backwards, now it will take longer to get well" as If im not trying.. all said even thou Id already been on a low carb diet but had further worsening blood tests).

    I naturally like to please people but i know I cant please him as its impossible for me to do, i just couldnt no matter how hard I tried except to make myself more sicker.. I truely wish I could just drop him as a doctor due to the lack of understanding how much Im struggling re cooking etc but I need him as he is helping some of my other medical stuff. Why do some of the smarter doctors have no good patient manner? (other patients of his have told me they hide things from him when they arent following his treatment plan and just hope he forgets about the previous things they've done which he didnt like. Ive been warned by other patients of his to just not tell him anything you know he wont be happy over).

    sighs.. I wish I could go back to my old psychologist due to this.. I could do with an appointment over how this doctor re diet is making me feel. I could do with my psychologist telling me to stick up for myself better with the doctor and not feel guilty or bad for not being able to follow his treatment plan. I KNOW I shouldnt feel bad about it, but I just do due to my nature to please people and not having someone having a go at me for something Im trying with.
     
    Little Bluestem, merylg and Valentijn like this.
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    It sounds like the doctor is going to be unhappy either way, so you need to do what is best for you.

    I once bought a rice based protein powder, but it was rather expensive. Soy milk and almond milk are alternatives to dairy.

    Would this doctor be willing to attest to your need for more service hours to prepare 'proper' meals for you?
     
    helen1 and Valentijn like this.
  14. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    The way that doctor has been probably no.. he wont even fill out the form for me to get disablity transport scheme (even thou I'd already cancelled throu of my appointments due to not being able to get there).

    I doubt very very much if he will support me getting more home support hours (he may even tell the agency that I dont need the hours I already have), he lays blame on me for not cooking as if Im being lazy or something ("you need to just try harder").

    This is why I posted that part in one of my posts about I NEED to make him understand.

    Without his support and backup, when the DisablitySA ring him when investigating my case, what he says could mean that I dont get extra hours (this is what kept happening to me in the past with other doctors who didnt understand ME, they completely screwed me things up for me being able to get ANY SERVICES at all). What he thinks can reallly impact me throu doctors backups can be necessary for getting extra support.
    .............

    I like homemade almond milk, I make my own when I have the energy to do so. Havent done that thou since Ive moved house and stopped doing that after Dr Gales Nutritionist for my insulin issue told me I shouldnt have over 10-12 nuts per day (due to the carbs in them).
    (Im meant to be on meat and low carb veg 3 times per day).

    She made me cry too over my diet.. she got a bright red marker pen and when I took my list in which I had to keep of what I was eatting, she draw throu nearly everything on my list I eat saying for each she ruled out that I wasnt to eat it. If it wasnt for her diet thou I'd be still in jail or dead due to the mood swings I was getting from the foods I was previously eatting, due to how they put my insulin up and how much Im affected when that occurs.. (note I wasnt thou even then eatting sugar or sweets. I was on an extremely healthy normal persons diet before that.. but she took the rice, the bread, the cereals and most of the veg I eat out of my diet as they were too high in carbs for my conditions. I suspect I react so severely to the high insulin level due to my MCS).

    I may have an intollerance to soy (Ive tried drinking it in the past but it didnt work out). I did force myself to drink that for a while as people had told me I'd get use to it and I believed them cause so many were saying that.. 6mths later I hadnt and was getting an even worst wanting to throw it up thing cause I find it quite unpleasant. I really need to get some food intollerant testing done). (I dont know how soy milk compares carb wise to cows milk).

    I dont understand why at this point they dont just try to treat my insulin issue with a med when the diet is gving me so many issues (but it seems to be the normal case what doctors put me throu.. a whole lot of crap which either doesnt work at all or I cant do before they will give me meds for something).
     
    Little Bluestem likes this.
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,690
    Likes:
    10,127
    Amersfoort, Netherlands
    Unsweetened soy is very low in carbs - 1 per serving or something. But also a common allergen :thumbdown:
     
  16. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    Yeah and that was my worry as I had a ton of food sensitivities in the past and my system has only calmed down due to a lot of avoidance of things I knew or suspected were affecting me. If I start adding things back into my diet which I previously stopped as Id been concerned about them, it may mean my system becomes overloaded with the sensitivites and I may get sensitivities Ive being just okay with right now coming back, making it so that I cant eat many of the things again which Im now able to eat again.

    The only reason I havent had any food sensitivity testing done is due to the cost of the tests. (I havent had any standard food allergy testing done either thou many foods have given me issues, I have been hoping for AGES a doctor would do that and have in the past asked many).

    My past known food intollerences which have been obvious ones are dairy, cashews, peanuts, coffee.... and I strongly suspect gluten (I get lethargy with breads) and possibly also soy issues (soy makes me want to throw up). Doctor thinks I had an allergic reaction to chickpeas.
     
  17. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    I over did things yesterday, I think I was only out of bed the whole day for 5 hrs.

    I always have my days very carefully planned with my pacing but my brother-in-law has an habit of not telling me when he's coming to help me (which isnt very often), he will ring me moments before he arrives, which then completely screws up my pacing as this will mean his visit will throw me often over what I know are my limits before I get payback to be.

    So I'd been out in my garden weeding for 45mins which was going to be my main activity that day (I accidently went over, I usually limit to 30mins) with me saving the rest of the time I can be physical that day for cooking that night, I'd just did that and sat down to rest for the rest of the day till I had to cook dinner that night, when he called to say he's coming. (No way would I have done gardening if I'd known). So goodbye complete rest I'd planned to have till dinner cooking time.

    I couldnt really say no as he had fixed my bed and was bringing it over to set it up and also help with other needed things. The bed, I'd been trying to get fixed since the first week of January (in the meantime Id been without a bed and get bitten at night by ants due to being on mattress on the floor with often an ant trail running right by my matttress). Saying no would of meant me being left for maybe another month (or maybe two) in this aweful no bed situation and the ant problem which keeps happening.

    I was so exhausted by the time he left.. (setting the bed up in my room also meant I had to clean my room up a bit so we had room to do that), exhausted to the point that as soon as he went, I went straight to bedto sleep for the night even thou I think it was only around 6pm (I usually dont go to sleep till 11pm or later). I slept then and woke up at my normal time in the morning. (So his visit caused me to have to sleep around an extra 4hrs cause I was so badly exhausted on top of my usual 8-9 hours. I slept like if i was dead for 12 hrs).

    I got him to quickly run me down the road to buy a hot chicken before he left as I would of missed dinner otherwise being too tired.

    Anyway.. I now have a bed again, my loo fixed (the seat had come loose and caused me to almost slide right off the toilet twice in the past week as I went to sit on it, it was dangerous), a climbing rose who's tressle had come off the fence and was all about to snap fixed, he cut a paver for me (for something I did weeks ago around my one day pond area), my hotwater service he turned down for me (Ive burnt myself several times since Ive moved here with the hot water from the tap) and he also put a gutter on my shed with a drain pipe (to hopefully help stop water going into there so one day soon I can hopefully put the gear in my loungeroom in there). The shed still isnt finished yet thou.

    Anyway.. thou his visit wiped me, it was worth it and Im really grateful for the help but I really really wish I could get my family to understand, to warn me the day before they plan to visit so I dont go messing up my pacing and exhausting me that badly. It would be good if I could be able to plan my pacing around them like I need to do.. so I havent done anything like taken myself to my limit of what I should do before they arrive.
    ...........

    This week is my garden focus week. I need a week to focus on the garden each month (as it takes me that long to do cause I cant do a lot) after my lawn mowing guy cuts my lawns. I need to make sure the garden doesnt get out of hand or Im going to have to come up with more money to pay someone to do the weeding too, or I'll get into trouble as I have done many times in the past with the housing people for it. The garden I have now is much smaller then the one I had at my old house (a quarter to one sixth of the size) so hopefully I'll keep managing to deal with weeds and couch growing into the garden beds from the lawn even if Im not managing the inside of the house.

    I actually do really like gardening and its probably good for me to be outside at times (that is the only time other then when I get taken out shopping that Im outside), thou it puts me out of action to do other things for a week.
     
    Valentijn and GcMAF Australia like this.
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Messages:
    2,684
    Likes:
    2,016
    Midwest, USA
    I am glad to hear that you have a bed to sleep in away from the ants, especially since you did so much sleeping last night. With all of the other things he got accomplished it does sound worth it. At least he is willing to help even if he is clueless about ME.

    It sounds like the doctor is a real jerk. Maybe he needs to just be smarter.

    Did YOU think that the almond milk was bad for you? Did you feel worse when you drank it?

    You may have to pick out some of the least high of the dietician’s ‘high carb’ foods and eat them anyway. I do not know a lot about insulin regulation, but it doesn’t seem like skipping meals would help it.

    If you do decide to try drinking almond milk again, look for it at the store. When you have the energy for food preparation, use it to make something the dietician approves.

    Do you have a crock pot/slow cooker/whatever you might call it there? It is an electric device that you cook meat in at a very low temperature for 6 - 8 hours. Since the temp is so low, it doesn’t matter if you fall asleep or forget about it and leave it for a few more hours after it is done. You can cook vegetables in it too, but if you add them at the start with the meat, they get mushy. Remembering to add them later might be too complex for you and if you leave them too long you have the mushy problem again.

    If you had one, you could cook a piece of meat big enough to feed you for several days and put it in the fridge. You would also have several days to get the crock pot washed up before you needed it again.
     
    Valentijn likes this.
  19. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    I didnt notice any issues from almond milk, intollerence wise so think its fine there. I'll try to find almond milk at the store.



    Skipping meals isnt good for it either as just "thinking about food" (according to my specialist) can have the body starting to release insulin.



    I always do do that already, if I can fit the cooking into my daily pacing and Im well enough to do it, Im certainly then not going to be putting the energy into making something unhealthy for me which I dont do well on, I only cook the meals Im supposed to have.



    I dont have a crockpot... I do thou have a very big electric pot but as Ive had it for 23 years, the temp guage on it isnt working properly so whenever I fall asleep with that on.. the stew or soup I was making gets burnt (that has happened at times even when Ive got my support worker help me with the doing the veg, last time I burnt a huge pot of food which I'd been making up to freeze, was only a few weeks ago). When I successfully cook with it.. I then get to freeze up a lot of meals. (There are a ton of things I need replacing or havent got at all, I guess that is something I could think about being on that list)
     
  20. taniaaust1

    taniaaust1

    Messages:
    8,234
    Likes:
    5,200
    Sth Australia
    Update

    Today a support worker ONCE AGAIN didnt show up (4? times in three weeks this has occurred.. last week it happened TWICE, the person didnt show to take me for my blood test and then also one of my normal support workers didnt show).. due to this, its the normal story of my already too little amount of support hours not getting used (which then DisabilitySA then use as a reason not to give me the more hours Im needing) Im annoyed (and stressed) at the home support agency due to this happening over and over, its so draining having this issue one which they dont fix or sort with me always having to chase the situation up. (I have other issues I could be sorting out in my life but instead have their unreliablility and me having to chase up them all the time chewing at my limited energy reserves).

    CSI hasnt even rang me about last week to tell me why support worker didnt show to take me shopping and who knows why she didnt show today either. Once again no phone call from the agency at all, neither to warn me she wasnt coming nor to appologise for her not coming and to make me another time. Tomorrow on what is supposed to be my resting up day, Im going to have to be ringing their complaints deparetment complaining again and also be doing them a complaint letter.

    Dealing with Community Support Incorporated (CSI) is being so draining on me due to this regular issue which they dont fix even thou Ive complained... all they do when I complain is only then book another day to make up my hours but then end up standing me up again in the next week or so.

    One of my support workers is getting annoyed at the agency too as she's waiting for the second worker to show up to take me shopping who then dont show, so she's going to be ringing them tomorrow as well. The past two times she's had to take me shopping by herself which today was okay as I only needed a few things (it would of been bad if I'd needed more things as I was having a dizzy day) but last time, we really could of done with that second worker as there was problems.

    Its looking more and more like Im going to have to take this service to the Complaints Commissioner too to get them acting decently and reliably (Ive already got one offical complaint in over DisabilitySA).

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

    I did manage to find out today when I was enquiring that I can get meds from local chemist delivered to my home for free (but I guess I still need to get a prescription there first for those meds) but my Epsom salts they are ordering in for me as they dont have foodgrade themselves in stock, they are going to deliver it to my door when it comes in.
     

See more popular forum discussions.

Share This Page