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Tania's journal of drug treatments and other ME things

Discussion in 'General Treatment' started by taniaaust1, Dec 28, 2011.

  1. Valentijn

    Valentijn Activity Level: 3

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    To some extent there is the matter of prioritizing - something like taking care of a cat seems like it's less necessary than taking care of yourself. Or repairing a tank instead of unpacking, etc.

    But there are also quality of life factors to take into account. I get a kick out of watching the antics of the fat little birds we've lured to our yard with various treats, and I can certainly understand how other people need some form of companionship when alone so much.

    And sometimes there are big projects which simply NEED to be done, even if it means neglecting the little stuff for a while, to make things a bit easier in the long run (such as the water tank).

    So it's often not just a simple matter of only prioritizing day-to-day essentials. Rather it's something we have to constantly reassess - am I getting the most value out of my very limited energy? And what do I value most? What do I need right now, physically or emotionally?
    rosie26, taniaaust1 and madietodd like this.
  2. brenda

    brenda Senior Member

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    See Tania, you say things that can lead people to feel that you are not helping yourself. Kitchen timers can be bought easily, and can be set to inform us when something cooking is finished. Or can be used as a reminder, say, ten minutes after starting the meal to say 'check the cooker has been switched off'. I takes a mindset of being determined to find ways of managing things by oneself instead of constantly turning to others to do what we should be doing ourselves. I am trying to let you see what others might think and don't mean to be harsh. I know you are having a tough time. My mind though is being badly affected by late stage Lyme, and memory and concentration and memory are much worse since two blackouts and seizures earlier on. I have to find ways to cope and with a will there is a way.
    Valentijn likes this.
  3. madietodd

    madietodd Senior Member

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    I'm finding this discussion very helpful, as I'm straddling the line you're discussing. I never cook anything without setting the kitchen timer, and I'm lucky that I am always able to get up when it dings. But the reminders I write on my huge erase-board calendar are useless......unless I happen to glance at it. I just don't remember that there's a reminder on it. I also tried sticky notes, but I never noticed them.

    When the weather is right and I have some energy, I spend it gardening. Most people reading that would picture some pretty vigorous activity, right? But I only garden sitting on a big plastic trash bag, doing little tasks that can be easily abandoned til another day.

    I agree that many people reading Tania's Adventures with Life and Disability would be confused. Most people have no clue about the lengths we go to to be able to do some normal stuff once in a while. But PR is an appropriate place to vent and share. If disability personnel do dip into PR threads, hopefully they read deeply enough to see how much we're doing with so very little.
    merylg, taniaaust1 and Valentijn like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I think people often forget that it is very important probably more so then normal, to take care of ones emotional health too when one has ME/CFS. So many with this illness have depression maybe cause they dont prioritize that too and give it less priority then other things.

    I went throu a stage where I was actually crying at night in lonliness... having an actual pet to pat and most importantly sleep by me, actually stops me from feeling as lonely at night (that's when lonliness tends to hit me the most). The cat I foster, also has an added bonus of not just helping with lonliness but also making me feel like Im doing something good with my life (Im helping save an animal), so helps my feeling of self confidence too (but that is still something which I still do need to work on and is low).

    No one should devalve the importance of taking care of emotional health. It is equally important.

    I do bird watch too :) (I have plans to make that even more exciting for me in the future.. I want to make a nesting box and put it in a tree outside to hopefully attract a bird family) but that doesnt stop that night time lonliness (my boyfriend can never be here at night, he's got to be gone from here by 5pm, often around 4pm and no one ever visits me at night (my mum has been here at night for a few hours maybe only once since I moved in at start of the year), so I spend long stretches of time each night being alone, if I havent wiped out and fallen asleep, if I have insomina, if lonliness hits its even worst. I grew up in a big family of 6 and its hard living alone in the first place.

    The tank, was a finacinal thing and urgent too as if its not put in in winter , it will be maybe till next winter till I can stop buying in water. Due to the time of the year we are in right now here, its urgent it gets put up ASAP, it would of been put off if it wasnt this time of the year and what is done now will affect things long term. My finances are quite low, Im owing money everywhere right now which Im not managing to pay back (for tests Ive had done etc) and are currrently having to buy my water and Im drinking a lot (that's money which would be better being used on other things). Im just too well aware of how much Im currently spending on water. (due to my POTS, I drink huge amounts of water in summer I can drink up to 6-7 L per day!! (Ive drunken till Im vomiting cause my POTS is so bad). Im currently during winter when its not even hot so my POTS isnt being as much as an issue as it can be, Im currently going throu a 10L container and on top of that at least 8 soda waters per week!!, all this adds to my life costs and financial burden. Rainwater is FREE!!

    Its easy for people to go judging on what Im prioritising when they arent in my shoes and arent me and dont know in what ways things are affecting me. What is important for one may be less important to another.
    ...........................

    One thing Ive learnt from having this illness long term, is sometimes it is just better to get those once off jobs off ones list by doing them too, othewise, things build and build up and with that one ends up becoming overwhelmed and then ones mental state does end up being affected. Hence at times I may also prioritise something which doesnt seem to be urgent but in the long run I know its better getting that thing sorted out and in the long run I will be very happy due to it (rather then keep putting something off and have it sitting there needing doing which stresses me). Anyway, in my own case I balance up looking after my emotional health with looking after my physical health and think greatly about how I can take down that work list (focusing on the reoccurring things all the time, doesnt help one move forward in life and happiness at all).

    When I lived in my old place, I prioritized according to the now moment eg dishes need doing so I'd try to do them (but then be too sick to do anything else) and that had me in a constant crisis mode as I wasnt thinking about the future and my happiness in the future at all. It wasnt what I'd call "living", it was only just surviving if one can call it that. It was a terrible place to be, a depressing place to be.

    With my move, I decided to start afresh and "try too" (still not managing this well as I arent managing to do this right now in accordance to getting my medical issues sorted out) prioritise based on long term thinking eg I think "What are I going to get out of doing this, looking at things long term?" and then valuing what I do on that instead. Has this thing long term value to me? In the long run, I do think it will have my life being so much better (thou a hellish way to be doing things right now as it leaves all the other stuff needing doing in a shambles and not done). Thing is I cant do it all, so need to make choices, often very awkward ones which may sound weird to another.

    Living the other way thou, it was like my house fell down around me, things would break and would never get fixed cause they werent a priority (I had piles of broken things everywhere, things I really could of done with using but couldnt cause they were broken eg not a good example but still is a current one, I still cant play my piano which I'd love to play cause it is so out of tune its horrific to play right now, I havent been able to play it in years and really wish I could but cant till its fixed. I may be able to play the thing now which I couldnt when I was very sick, if it was fixed). After things being like that long term, nearly everything in my house being broken (food mixer not going in the kitchen etc etc lots of it was stuff which would of made my llife easier or better), it was like things were a complete train wreck. My whole life was a complete train wreck (till I started to get the home support and very very slowly over a year was catching up on things).

    We spent over a year tryiing to catch up on fixing all the broken things or for me trying to find me working things to replace things or trying to sort all the mess which needed sorting which just cause of the way I'd been prioritizing before (the common way most here prioritize), I was focused on the daily life things but when I do that, I have nothing left for anything else eg if I focus on dishes, showering etc none of that other stuff ever got done so long term, everything fell apart, not immediately but over being sick long term.. be very sick for over 7 years with all the "non essentials' building up and you may understand what I mean . (So now I just dont focus on the short term things eg I dont make my bed, I shower once a week, I dress only when I have to, I go without my meals often etc etc and instead focus on the long term stuff and getting my life together so it will be better in the long term rather then a slow progression fall apart).

    Being disabled, should not mean that we are having to live in a constant "survival state" of just living day by day and not beign able to think beyond that. This is wrong, what other illnesses except those in which the people are dying are doing that? We should be able to still be living "okay" (not great of cause as we are severely disabled and of cause will always have alot of thing s we cant do etc but just okay) with disability. Other disabilities (at least where I are) are supported so those suffering from them are not just living in a constant "survival state" where things viewed as important for all just arent happening.

    What happens when someone gets old? Usually they do get the services they need eg meals on wheels, gardening support etc. My support worker often takes her other disabled clients out to places, they get gov support for her to do that eg last week she took one to the beach!! Other illnesses get supported for their emotional wellbeing, when I was well enough to be working still for a support agency, it wasnt uncommon to have to take a client to the cinema to watch a movie, gov funded except the movie ticket (If we were even well enough to do something like that which many of us are not), us, we are left having to contantly make ridiculous judgements over basic life stuff, what can be done and what cant (can I stand to fix a tank or do I rather choose to cook my dinner tonight?). I cant even get gov support to get me to my medical appointments. We need to look after our emotional health as no one is going to help us with that. Its your emotional health which will get you throu living with this illness.

    Yeah its very hard short term to focus on the long term stuff but means long term, Im going to end up being in a far better place and be happy. Ive probably overswung the other way due to how bad things got with doing things how I was before but anyway, I know once Ive caught up with all that long term stuff, then I will have focus again on the things which are reocuring life things which a normal person does all the time.

    Anyway, this may be something which everyone could think about about themselves. How do you choose to prioritize when you are so limited that all the normal what most would see as important stuff cant be done? Are you a short term prioritzer so focused on just getting throu day by day that you are only focused on cooking, cleaning etc and everything else is left building up not done. Are you long term prioritizer, focused on getting the once of jobs out of the way, putting all your effort on having a better future for yourself while your short term things are suffering badly? Are you a 50/50 with those things. I think most may not have a 50/50 balance between the two ways of prioritzing as that is putting a heck of a lot of energy in the long term stuff but will have some kind of ratio balance between the two which is more focused on short term.

    I agree that is how must here are prioritzing.

    Thing is are you truely getting most value out of your energy by putting nearly most of it on the day-to-day essentials? The things which impact long term do carry a lot of value too and I think many are finding it hard to look outside of the daily struggle box to see that.

    What happens when someone has lived that way for over 10 years, what then has their life become other then still a day to day strugglewith doing the some things every day, with all the rest of the things build up or a huger loss of things in their lives eg like my old situation where I had no nice stuff anymore as everything was wrecked and not fixed.

    Anyway.. there's something people may like to think about. Do the rewards of doing the things which impact long term but are not immediately neccessary, carry less valve?

    Is it wrong for another to prioritize differently to yourself and hold those more at value due to holding a more long term headspace? (I often feel like some here judge me for the way Im currently prioritising just cause I think in a different way).
    Valentijn likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    You see problems with what Im saying due to a lack of understanding into just how severely Im affected by things. I HAVE tried kitchen timers and that was a big fail for me, I was still burning things. My health issues are extremely complex, I dont just have ME/CFS but also do have other health issues too further complexing my situation. I have Aspergers as well and that causes me if I get engrossed with doing something (which is common for me to happen) Have a one track mind one could say, means all my focus will be going into that thing and I hence dont even notice the timer going off. This kind of being so focused on something in which one then doesnt notice anything else, isnt uncommon with Aspergers. Those kitchen timers quickly run out and I usually miss that it went off. My alarm clock too stops after a minute and hence that too didnt always get my attention.

    *Aspergers is not a mental health condition (so I didnt mention it before when I said I have no current mental health issues) and no I cant get help for that if you are wondering. Ive tried to and the Autism society just recommended me use their library to try to sort out myself more, they only are really helping children. They wouldnt even allow me to attend their support group as "you have multiple issues and not just Aspergers".

    Other times due to the ME I can fall asleep with exhaustion, so deep that nothing disturbs me (in which case I can miss a phone call from someone as a reminder call too so then I still end up with a burnt meal). I seem to be getting some Narcolespy as a symptom of my ME when I over do things, I can suddenly fall asleep while doing things.

    My boyfriend can ring me over and over again on and off, until the phone gets my attention. An unbroken noise which starts out which I havent noticed, its like I then get immune to that noise as it just blends in with part of my background, if i dont notice it to start with, Im unlikely to notice it at all till I go to get up. (I know this probably sounds very weirdbut with the ME i also have noise intollerance occassionally so if you hear me say that. I realise you will think that is weird with what I just said here sighs, things with this illness are weird and get weirder still when one has other conditions on top).

    Its very easy to judge go and think ..well that person should just do this!! but often there is a good reason why that person isnt doing it and often I find that the suggestions people make to me are the very things Ive already tried. Before judging people (any of us judging another) maybe it would be better to offer the suggestion to the person and see what they say. It may not be at all the case of that that person hasnt tried to help themselves. I do appreciate suggestions thou in case it is something I havent throught of and tried (sometimes a suggestion can turn out helpful).

    One thing Ive also tried but didnt work either is putting signs up all around my house eg "flush the loo", one by the stove "is it off?" by the kitchen tap "turn the tap off" as I was turning taps on and then forgetting to turn them offetc etc. That didnt work for me either, I'd do something and not think to read the sign or just thou it was right in front of me, somehow didnt notice them at all (I probably got used to signs being everywhere). Fortuantely due to some of my supplements my brain is much better now and I dont have memory issue to the degree I had it previously (I can now usually remember to flush a toilet after a number 2 or turn a tap Ive just used off. Throu yesterday when my boyfriend arrived, he did find the fridge had been left open and hence then water all throu it we had to put a towel in the fridge and try to clean it all out **sighs**

    Yesterday I also when I went to top up the kitty litter, I poured the catfood in with the kitty litter instead and hence then had to spend ages trying to pick the cat food out of the kitty litter :alien: (my big brain screws ups are multiple times daily causing a lot of work, yesterday after the fridge incident, before the cat food one, I joked how Im having to do twice as much as a normal person due to my bad brain but my boyfriend then said he thinks its causing me 10 times as many issues, he was being serious when he said that).

    That may be easy for you to say but a lot of us end up getting so burnt out mentally, emotionally or whatever, that it can be very hard to keep holding determination..esp if one has tried things and they have failed. I still do have determination (I get told by some who know me more then most) but it has been chipped away some with all the failures. Some times I just want to take a break from trialing new thing which is likely due to my past experiences, fail me again.

    The most recent thing Ive trialed (last week and week before) is buying a big pad (it is huge, A3 size to make sure I noticed it on the kitchen bench to help me to remember to take my meds, with the days of the week on it and writing my meds into it on the lines down the page. So i could tick each off on each day of the week which was along the top of the page, as I take them, to hopefully stop my constant mess up with my drugs and supplements (I really arent managing them well at all, Im confusing them nearly every second day, last year I ODed after confusing my drugs and ended up in hosptial on a drip due to that). One would think that would stop one from confusing what one has taken and what one hasnt? Well I thought it would work, well it turned out it didnt. **sighs** I still screwed up 2/3rds of the time.

    After consistantly messing that up for over a week, my boyfriend then goes.. well why not use that pad you've brought still but also line them all up on the table too and count them all as well to make sure you didnt miss any. Crazily I still screwed them up the first time I tried that. I tried to line them up in order on my list (took focus to do that so hard work on head, I have a lot to take), with the plan to tick them off as I took them but somehow (I have no idea how) .. I took a several following the idea of doing that and using my list as well but then realised that what I just ticked off my list and thought Id taken, well that one was there further down the drug line I'd lined upon table. So Im then was going "what did I just take?" and then when I counted them the number of ones Id lined up on that time must of been wrong too. Ive still got no idea how I screwed up, I did okay the next time but screwed up the third time again so gave that idea up, it was more work doing it and I still was screwing up.

    My support worker sometimes helps me with drugs as she often sees me screw them up while trying to take (oh you forgot that! or You've taken that, she's amazing) as she's doing my dishes. Anyway I DO try to sort my issues out, it isnt a case of I havent tried. I usualy try multiple things and keep trying if I get a new idea.

    My support worker is trying to get me to rely on her more as she can see how much trouble Im having (those who spend time with me end up worrying a lot about me as they can see how much Im screwing up), the other day she offered to phone me when she left and I had something cooking but I said no I'd be okay.. sighs but I wasnt and burnt the meals she'd given me a hand to make (I got her to not do my floors to help me with a pot of stew). I should of taken up her offer but didnt as it as out of her support time and going to be a phone call for her and I didnt feel it was fair for her to be helping me by trying to remember my things and not getting paid.
    ...............

    Im sick of having to explain things to defend myself, its very tiring having to do so. I'm goign to take a break from my thread for a few days as its currently not heathy for me. I only just recently got out of bed and now feel drained due to this thrread. Im not healthy enoug to be able to keep defending, it saps vaulible energy from me.
  6. taniaaust1

    taniaaust1 Senior Member

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    thanks maddie, i just had a quick glance at your post before I took a break from this thread. Glad i did as it helped me feel better hearing another just say what I just finished posting about sticky notes being hopeless for me too (as I thought brenda may mention something like that next), same with calendars.

    :) you garden like I often do (when I are managing to do it, currently arent and its overgrown out there) most of my gardening will be on my butt and even then I dont last for long and have to do it in little bits each day.

    Thanks again for this post, it cheered me up having someone who experiences this stuff too so understands. It was feeling very strange having to try to defend myself on a ME/CFS forum!! (all why I wish ME would be separated from CFS and other illnesses).
    madietodd likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    I was just thinking (I wish my brain would stop, Im about to get a headache) that this thread is a very good example of how we are misunderstood and why we all need those who understand our illness eg well trained in it, dealing with us be it doctors, those doing assessments of our condition or whatever. It's unfair to us otherwise.

    I just got up after my last post and went to put on my deodourant just a moment ago but instead acciddentaly sprayed my hair treatment under my arm (which made my skin burn thou its a natural one). (I should record one day all the mistakes I make due to my brain in one day, everything Im doing, Im having to think very hard the whole time so I dont screw it up).

    I dont know if I shared it here (probably didnt as Im constantly doing stupid things) but a couple of weeks ago, I confused my fly spray (low allergy of cause, I feel I have to comment or people will question my MCS) with my olive oil spray and picked it up and went to spray all cooking stuff and meat with it. :eek: (Fortunately I did notice just when I was about to press it but the incident of what I nearly did and was so lucky not to have done, horrified me)
    merylg likes this.
  8. brenda

    brenda Senior Member

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    Tania I am truly sorry I did not mean to upset you. I was hoping to help you to see how the support agency might be seeing things as it is plain that you really need more support. I do appreciate the problems that Aspergers causes and you don't need to be explaining things to me or defending yourself. I truly understand what it is like to be overwhelmed. Please don't stop writings as it is obviously a great outlet for you.
    taniaaust1 and madietodd like this.
  9. Lynne B

    Lynne B Senior Member

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    Hi, Tania,

    Your amended letter is much, much better than either your original letter or my changed version. Good luck with it, it's really hard to get services and things fixed when so much is so difficult to sort out and the available agencies are so inefficient.

    I just read all your posts about the difficulties in noticing your prompts to do things. I have similar problems with remembering to direct my gaze to the right place. It's got so that if I have to remember to take something with me when I go out I have to put it on top of my bag, so I can't it pick up without touching the other thing. Even that's not failsafe. But I call it a physical check, and I actually walk around the house pointing at every lock and asking myself if each one is in the right position. I say what it should be out loud and also try the doors. It's amazing how often my husband or I keylock a door when its slider is in the open position.

    With pills, I try to remember the right count at 7 a.m. 12 a.m., etc. Still not failsafe. I also try to do certain things at certain times every (normal) day. That helps me remember what to do. And If I know I couldn't do a whole job like washing up I would try to do just the basics, like what I need to make and eat the next meal. Though my apologies here because I know I have it much easier than you, what with a dishwasher and a husband to pitch in when I'm incapable. (If he's actually capable at the time.) If not, we go for the absolute basics, namely porridge with fruit or baked beans on toast. But, once again, I know even that can be too hard for you.

    Anyway, I don't have any certain answers, but I suggest that if writing notes doesn't work, don't keep on with that prompt but try to think of another that might work better.

    Best wishes, Lynne
    taniaaust1 and madietodd like this.
  10. Valentijn

    Valentijn Activity Level: 3

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    For pills I use a screw box from a hardware store, now labeled with 5 sections for different times of days, for 5 days in a row. Then I fill everything at once, and if I'm not sure if I took something I can just look into its compartment.

    Otherwise I have no idea if I already took something once, or twice, or not at all.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I have daily pill box, so I load it once a day, but it's the same principle - look in the box to see where I am on the daily pills.
    Valentijn likes this.
  12. brenda

    brenda Senior Member

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    I have problems with using a pill box, as I test daily with kinesiology and besides, a lot of things I take, are not daily, and I titrate on hydroxyb12 and folinic. I am also adding in new supplements on a daily basis from my LLMD. So I have an A4 pad in a very prominent position on my kitchen bench and make entries three times a day over what I have taken and comments on how they have affected me as my memory is not to be depended on at all.
  13. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I also have some things that I do not take daily and add, increase, decrease, stop things on a regular basis. That is why I have single day pill box. If what you are doing is working for you, there is no reason to use a box.
  14. taniaaust1

    taniaaust1 Senior Member

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    Ive had a break (I actually ended up quite sick and spent a couple of days running an over 38 degree fever and had viral reactivation happen, maybe nothing thou to do with here, more so cause I over pushed things) so now more able to deal with these posts. Sorry I got upset brenda before.
  15. taniaaust1

    taniaaust1 Senior Member

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    Its like one actually looks throu objects without seeing them, I too can pick up my handbag and leave the stuff I got ready right along side of it. Sorry to hear you have the same issue. I try to put everything together on the cupboard top right by the door whenever Im going to leave the house, run throu a checklist too in my head and also walk right around my house, trying to see if there is anything I see which Ive missed "oh there is my phone!!" etc. Unfortunately half the time I will still miss something.

    I try to get ready to leave the house at least an hour (usually several hours) before I do to hopefully give my mind time to trigger on about anything Ive missed. My support worker will usually end up having to tell me about something Ive missed (or when we get to the shops, I end up having to send one of the support workers back to my house to get things I missed **sighs** so much more work and annoying as it wastes my support time. Fortunately one of my workers is very good and will always make sure Ive got everything if she's with me).

    Ive got a huge issue with managing to stick with time things (miss alarms etc as Im got so into whatever I was doing or miss them due to falling asleep which can happen during the day, Im sure Im experiencing Narcolepsy at times). So I try to tie the pill times in with when I have meals (but I often actually forget to eat and hence miss meals due to that).

    My big issue is the extremely strict diet Im on due to all my food issues, that leaves me unable to eat those simple things eg toast, cereal, baked beans, porridge with fruit I cant eat. I need meat ,fish or eggs every meal I have to try to prevent my insulin from spiking too high. If I could eat normal things, I wouldnt have issue at all with food and my meals as there would always be something easy that would appeal to me to eat (I love all those things you mentioned but cant eat them). Due to the diet Im on, I use at most of my physical time just cooking (and then have none for the cleaning right after and need to rest for hours after cooking). Its cook eat and wipe out.

    Thanks greatly for your help with it, it really did make a big difference to the letter. (I never got your email as my email address here was old, its now been updated since I realised I didnt get your other message). Im kicking myself thou about a couple of things to do with the letter, I didnt realise till after I'd had it posted that I forgot to date it!! (and that is kind of important as it helps record how long Ive been having what issues for and puts everything on a time line). I also had planned to post it registered mail to make sure no one could later use an excuse saying they never got the letter and I forgot to tell the person who posted it for me to do that. **sighs** Even with help I still screw up so much (very annoyed at myself for forgetting to date the letter, I didnt even think of it the whole time I was working on doing one, one would of thought I would of thought of that in the over a week this letter was worked on.. my brain frustrates me).
  16. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    The pill box thing still isnt working for me. The other day I didnt lose one of my florinef tablets but TWO while trying to take my pills, I still dont know what I did.

    Id got the florinef tablet out of my pill box and being so clumsy and fumblely as I are with this illness when Im tired, I dropped the pill (yeah I know, I should of been taking them while sitting at the table but was sick and had just got out of bed so was trying to take them quickly in the kitchen while standing and hadnt walked to the dining area to sit down to take (when exhausted last thing I want to do is walk more).

    I saw the pill bounce or roll (it moved) on the floor out of the corner of my eye but couldnt due to my brain slowness guage where it hit or which direction I'd seen it go in (I just got this thing of pill movement after it was dropped). So I was then down on my hands and knees on the floor, looking for the lost pill. I couldnt find it. The cat was in the kitchen so I was then freaked out that she may of eatten the florinef tablet so I was then worried if I should be taking her to the vet or not (so then was really stressing out).. I didnt notice her thou eat anything thou so decided to risk it (thou I shouldnt as she's not even my cat).

    So I go to the fridge which is only a couple of steps away, to get another florinef pill. I walk with it? back to the cupboard with my pills only to find when I get there, well I dont have it in my hand and I cant remember if I took it or not, Ive not a clue what I did (or did I black out for a moment?). :alien: So at that point after loosing TWO of the fIorinef gave up on the florinef for that day.

    AUGHHHHH!!! Frustrating. How can a person have so much trouble with pills, I would find this hard to believe if I didnt experience it.
  17. taniaaust1

    taniaaust1 Senior Member

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    The pad I was using was a A3 one (unless Im saying the size wrong?).. it was anyway, DOUBLE the A4 size and I still was overseeing it. I can often like look throu things as if they arent even there, brain just doesnt register my surroundings well and I miss a lot. Its like all my mind is going towards whatever activity Im doing at the time eg If Ive entered my kitchen for another bottle of soda water, it is like its taking ALL my attention to do that, so Im having very little awareness of other things in the room.

    Its another reason why I often miss alarms or even my phone, its taking me all my attention to focus on what Im doing at the time eg if Im at computer.. all my focus is going here, like im having to use all my concentration here with little left for anywhere else going on around me.
  18. taniaaust1

    taniaaust1 Senior Member

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    Symptom Update

    Im been up since a crazy hour this morn (so probably will be back in bed by lunchtime today) due to bad ME/CFS dream.

    I dreamed I had a states disability service person in my home assessing me while at the same time was on the phone to Helene from DisabilitySA. In my dream she was acting all nice making out she was helping me and I was believing her, she was trying to get me to do an exercise stress test. I then got off the phone after arguing with her for a while that it wasnt going to help me but would just show how sick I was and then realised that the reason why she was trying to get me to do that was due to her not believing I was sick, in my dream my emotions then all came crashing down esp after all the effort and stress of talking to her for a long time on the phone. This may not seem to be a nightmare but this dream caused me to actually wake up actually feeling sick (the feeling I get when its like my cortisol hasnt been enough to deal with my stress level, the unwell feeling one gets when one has got too emoitonal and crashed something with that. :( Im not happy that I cant get away from the situation even in my dreams.
    ................

    Ive been very sick the past few days and spent most of the last two in bed, fortunately Im feeling much better today after that (I think I was only out of bed for an hour or so yesterday, only cause I was getting too restless in bed and it affects my legs after quite a long time in bed).

    I'd done too much when my boyfriend came on Monday and hence got to the point where I was having trouble standing (always a bad point for me to get to). I was in bed before he left here in the afternoon and there the rest of the night and the next day too.

    I think my condition has further deterioated as my level was poor even before he arrived (I usually recover from Thursday and Friday activities on Sunday.. Sat and Sunday are my rest recovery days but this time I wasnt fully back to baseline which is unusual with the pacing I do). I was up for a couple of hours online in the morning and then exhausted so much from that, that I was in bed again when he got here at 11pm (and had spent another 1-2 hrs in bed by that point). After laying in bed while he was here for an hour, I got up to shower (fell asleep on the floor in there, cold water woke me up) but then crashed some because I did that so ended up right back in bed again. I then slept (he ended up coming to bed with me and sleeping too) for another hour or so. I then got up to do things I needed doing with his help which I got to make good use of seeing he only comes a couple of times a week and did stuff till i couldnt stand without his support.

    I didnt mean to overdo it, I was just determined to get "just one" of the four things which had been planned to be done done so ended up pushing hard, **sighs** it still didnt get finished thou as I got too knocked about by the activity so couldnt continue when I could no longer stand well by myself. Im getting frustrated at how long its taking to get me settled into this new house, its hard to progress, impossible without making me sick.

    Then I went straight to bed (it as around 4pm?).. and stayed there till my support workers came to take me shopping the next day after lunch (I only got up for toilet and to grab a couple more bottles of soda water). I really wanted to cancel my workers coming but as I cant make up the support time I need anywhere else (eg DisabilitySA wont allow them to come on a weekend and I cant fit them anywhere else into my pacing) meant I had to still have them come then when I was very sick. Due to the stupid condition on my support contract that I have to be helping them when they are here, it also meant that I couldnt stay bed while one of them went and got my shopping for me so this meant I had to go to the shopping centre while extremely sick, when I should of been in bed.

    The shopping trip was a bit of disaster due to that. I was completely useless and my body caused issues. I collapsed onto the supermarket floor within first 5 mins (I only just got into the door) while the other worker was still getting the wheelchair. As I get extremely embarrassed being on floor of supermarket with people having to go around me :redface: , my other support worker sat down next to me (so I didnt feel all alone down there, she's cool ,she so often predicts what to do to make me feel better).

    Due to getting to the collapsed on floor stage of things by the time the other worker had come back with the wheelchair, I wasnt even well enough to be sitting in it and started to shake while sitting in it as I really needed to be laying down or have my legs up and the wheelchair didnt allow for that (sign Im about to go into a seizure like incident and could completely loose consciousness). So I had to be taken to a bench in the mall to laydown on, being watched by one worker while the other one did my shopping. How ridiculous is this situation!! all due to a conditon being put onto my support contract that they arent to help me unless Im out of bed and helping.. umm not usure thou how me laying due to a collapse on a bench outside of a supermarket is helping thou.

    Then I collapsed again in the carpark, trying to stand from the wheelchair to get into the car (unfortuately one of the workers didnt have good wheelchair skills and had pulled the wheelchair away so when my legs wouldnt support, I went down) and ended up on the ground (fortunately it hadnt been raining!!). A guy who saw what happened ended up helping to pick me up and get me into the car (I get very weak with thse collapses and hence even pulling myself up from the ground into the car door was an issue, I needed someone to basically pick me up).

    All this has done is made me far sicker and had the support workers once we got back as I couldnt do anything, so then they were having to bring me my lunch, drinks and everything else I needed in be cause I then couldnt then do a thing for myself. Going shopping when in a crash state ended up taking my ME viral flare symptoms of sore throat, feeling unwell etc..it ended up sending me then into an over 38 degree celicus fever all night and I then had to spend all the rest of the time that day in bed and all the next day too (except about 1 hr or so when I was up).

    This is just one example of how the states disability service is actually making me sicker due to the lack of understanding of this ill. When Im feeling up to it, Im going to add this latest happenstance due to their conditions, to my complaint.
    ......

    I still havent got my washing machine issue sorted out yet so dont currently have one and while sick in bed, I knocked over the whole bowl of soup that my support worker had defrosted and brought in for me just before she left on Tuesday. It went all over my quilt, sheets everywhere!!.. so all the soup covered bedding got thrown down on the floor and I just managed to drag a clean quilt from out from under my bed (lucky I even managed that at the time seeing I was still too sick to be standing or walking) and was then sleeping in the bed with no sheets at all, straight on the mattress. Today being weller, I'll be able to make that bed.

    *Note.. the soup was on a tray but cause I was so dizzy, I wasnt with it with what I was doing and tipped the tray when I went to eat the soup (so I lost nearly all my lunch, by that time my support worker had just left ..so once again I went wthout a meal, even thou this time one had been brought to me). When Im crashing, its like everything I attempt is disasterous, the more Im trying to do, the more mess Im making.
    ......

    Im not looking forward to my support time today. My normal worker who comes on Thursdays is sick and hence I have the worker who is very nice but quite incompetant in care stuff coming (she's the one who caused me to fall in the carpark on Tuesday due to pulling the wheelchiar away from me while I was still trying to stand). When I start crashing this worker starts to panic and she tries to "push" me to bed when Im dizzy and trying to walk there (both me and my other worker have told her not to do that but she still does). She'll actually put her hand on my back and push to try to help me move faster :eek: and is very likely to end up making me fall flat on my face (I think she has made me loose my balance before other then the wheelcair incident). She doesnt listen well, ifIm on the floor feeling faint, she's very likely to try to sit me up and make me pass out or have a seizure.

    She exhausts me completely as shee constantly wants me to show her where things are instead of following my instructions where things are, she's highly reliant on my other worker. (I ended up crashed in bed last time she was here by herself within 50mins of "her care" and that was on a good day, she also drains me with her talk). No idea how Im going to handle her for 2hrs today without going downhill.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    In this country liquid medicines, such as bismuth and cough syrup, come with a little dosing cup. When I am ready to take some of my pills, i take them out of their section of the pill box and put them in a dosing cup. It is easier for me to keep track of them and not drop them this way.

    I don't think a morning goes by but what I don't drop at least one pill while filling my pill box.
    taniaaust1 likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    yeah, I usually drop at least one of something.

    I tend to often knock things over when I got to pick them up or misjudge on picking them up (my hand to eye coordination is often not good with the distance judging. I even manage to knock glasses of water at times right over when going to pick up a glass (so I tend to drink my water straight out of the bottles). (Its one of the issues I have which can make doing the dishes hard esp if Im tired, misjudgement on picking up things). Those light little medicine cup things, I'd probably knock over and spill all the pills.

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