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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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    @taniaaust1 - I'd go to the doctor for it. You might have picked up something nasty during your recent hospital visit.
    taniaaust1 and Little Bluestem like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    Oh, good thinking there, I hadnt thought of that.

    I havent been able to make more doctors appointments due to the deadline to get my responses to a letter into the equal opportunity commissioner. Its impossible for me to pace out all the important things Im needing to do!!.. so the only time currently Im ringing for medical is when I need to call an ambulance cause I need to be in hospital. Its terrible Im having to prioritise/pace to this degree to try to keep my health stable and keep me from crashing which puts me hospital.

    I have many important medical things which I should be seeing doctors for eg I still dont have my glucose test strips, I still havent been back to the allergist to confirm what I think extremely bad reaction was too...

    fortunately that rash is no longer stinky and much smaller then it was (thou still sore some) so I think its going to be fine. I'll just have to keep an eye on it till its fully healed I think. (I kept wondering if the area is going to go into ulcers or something).

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

    Today with some help, I finally got one important response making corrections and doing clarifications finished and posted to a 4 page "Assessment and Profile Plan" that disabilitySA had done.. (sent it to the EOC).

    I think there may be just one more letter from DisabilitySA to comment on if I can find it, along with also the latest letter I have from them re our meeting which ignores so much of what was said to them by my advocate and I during the meeting (this letter they would of sent to the EOC gives a false impression on the meeting so needs correction for EOC.

    My boyfriend told me that when he'd rang EOC (while I was in hospital the other day.. I had no idea he'd spoken to them) Ian Law, the guy there dealing with my case, said he was waiting on a letter from my advocate on how that meeting went with the states disability services, so maybe I wont need to do that letter after all (fingers crossed) if she's done it. (thou she too was missing a lot of the points I was needing to make at that meeting due to her lack of knowledge of ME so I'd like to see her letter to add to it but I guess it will get sent straight in?.. leaving me out of the loop?)
    ..............

    I still havent put in a complaint about what went on at the other hospital (repat) when t he nurse mocked me for my chemical sensitivity. I want to make sure that doesnt happen to me again! (thou that complaint probably has had to have been left too long now but fingers crossed). Ive vowed to myself to make sure I get complaints in as otherwise I just get treated badly time and time again and learnt now they need to be given priority (even if it means putting them over my medical treatment) or they get ignored.

    Hopefully the end of important paperwork will be in sight in the next couple of weeks and then my focus will be back to my medical needs. My friend thou who helps me when he can is going to be busier from now on as he's about to sell a house and trying to get that ready. Anyway.. all I can do is take things week by week and try to get throu all this stuff.
    ...............

    Ive only just got better from working on the letter today. After that my brain was so very bad earlier (felt inflamed) and ended up leaving me brain dead some for hours. I got taken down the street to get some money out but due to my state after doing that letter, I couldnt even remember my password. If my friend hadnt had my details, I wouldnt have been able to access my bank account. I also couldnt even remember my birth date either and wrote the wrong date down for it!! I made 3 attempts to write down my birthdate but couldnt do it.
    ..............

    My phone is badly playing up.. its never been since that day I collapsed at the hospital months ago and it went flying as I fell. Im having to recharge it twice a day and its stopped ringing half the time when someone phones. Today I missed soo many calls to me due to it. So this week Im going to have to go to a new phone and need to change all my numbers to it. Its just more work to add to the mix.

    I had aout 9 missed calls today, a couple from a private caller (maybe one of the gov agencies?? Im waiting back for a call from the high up health place, 3 of the missed calls were from someone from Saint John Community Care (someone called Madeleine) and I have no idea who she is or what this organisation is calling me about. Im figuring it must be someone I was told to phone for something so I did but cant remember any of it? So when she rings me, if I'd rung her first?, I hope she can tell me why I rang her! (OMG its so hard to seek help for oneself if one cant remember when people ring you back why you rang the in the first place).
    Last edited: May 5, 2014
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  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am almost sure that when I take one of my parents to the hospital they get a saline IV, if they need it, well before they see a doctor. I am appalled that you have to wait so long for one. I sure hope that you can get them done in your home in the future.
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  4. taniaaust1

    taniaaust1 Senior Member

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    When I went to hospital the other day, they didnt even end up giving me one at all hence it took me a few days to get back to my normal ME/CFS self which sucks as I should of been treated. It all depends on what doctor you strike at the hospital.

    What is irronic is another came in with suspected dehydration and was in the bed next to me (this is before either of us saw the doctor).. and they put her on a drip immediately even thou they werent sure if that was her issue or not... so before she even saw the doctor.

    Where as I told them what I was needing and why and was ignored. What I did wrong this time, is I mentioned ME/CFS too so unfortunately its on my file now. They didnt know that before as I only said POTS. That's what gets one discriminated against any mention of ME/CFS.
    .............

    Today, my rash is worst again, back to how it was 3 days ago, really stinking again too and wet.. and it finally hit me what the strange odour its giving off is, it smells that sickly, weird yucky smell like fly struck sheep (I grow up on a farm). Im not fly struck thou! so its interesting it smells just like that.

    So Im been googling this smell trying to work out what fungi or bacteria I must have but all I get coming up is stuff on cattle mutation (yeah how weird is that) or on sheep. Nothing on human rashes with that smell... so Im none the wiser. Im reaching the point now in which Im thinking this isnt going to go away without some proper medical treatment so Im starting to consider how this can be done. It will probably have to be the week after next unless I end up in a dire situation with it.
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  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    We've hit a language problem here (but then we are in opposite hemispheres on opposite sides of the globe). :confused: "Fly struck sheep" is not a term I am familiar with, despite growing up on a farm. I am wondering if you mean sheep that have had flies lay eggs in their flesh and the eggs hatch into larvae. We call that "maggots". The smell that produces is the smell of rotting flesh. :vomit: I hope that I am wrong because if I am right you could end up in a dire situation. If it doesn't get better, do get to a doctor as quickly as you can.
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    We've hit a language problem here (but then we are in opposite hemispheres on opposite sides of the globe). :confused: "Fly struck sheep" is not a term I am familiar with, despite growing up on a farm. I am wondering if you mean sheep that have had flies lay eggs in their flesh and the eggs hatch into larvae. We call that "maggots". The smell that produces is the smell of rotting flesh. :vomit: I hope that I am wrong because if I am right you could end up in a dire situation. If it doesn't get better, do get to a doctor as quickly as you can.

    ETA: I did a web search on 'fly struck sheep' and found that it is indeed an infestation with fly larvae.
    I still do not think it is a good thing to smell like a fly struck sheep.
    Last edited: May 7, 2014
  7. taniaaust1

    taniaaust1 Senior Member

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    sorry. Yeah "fly struck sheep" is a term used on farms here in Australia for sheep that are crawling with maggots eatting away at their flesh. Due that distinct odour I started trying to research what gives the odour to those fly struck (also sometimes called "fly blown") sheep and read that they get a secondary bacterial infection so then tried to research that and found four skin bacterias they get. Two were staph (Ive had lots of issues with staph before), one was the bacteria which can cause gangrene (so I will urgently ring a doctor if rash starts to bubble! and hope for best in that situation and yeah that would be terribly dire).. and another bacteria.

    So Im now assuming maybe its issues for me with staph again?? but Ive truely got no clue... the area should be swabbed and tested. (If its staph and the same staph, the staph I carry is immune to about 8-9 out of 10-11 antibiotics where tested last on it about 5-6 years ago).

    I still have that rash but its doing various things. It actually went normal skin colour in the middle of it the other day which left a huge rash ring with the rash very distinct still around the ring. The next day, the middle of it was all rashed again to the degree of the rest of it. Today its 2/3 healed.. so who knows what this rash is doing.

    Im now trying to observe if it gets worst when I get worst (Im sure my body is trying to fight whatever it is due to how it improves at times).
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  8. taniaaust1

    taniaaust1 Senior Member

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    Yeah Im sure you are right and wouldnt want whatever bacteria it is to go into my bloodstream.
    Little Bluestem likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    Services update

    I had a phone call yesterday from someone from ASSIST who said they were to do with seeking help throu my local council. (I currently have no idea if I have recently contacted them to try to seek gardening support.. guess I would have to go throu my posts here to see).

    I had last year contacted the local council re my garden situation.. which is shocking with grass/weeds over knee high and was dangerous in summer re possible snakes (for those who dont know in Sth Australia most of our snakes are deadly, we have the most deadliest snakes in the world). It was also bothering my home support workers with some wouldnt even hang a blanket out on the line for me due to them fearing snakes.

    Its probably been 8mths since that was weeded etc... my mothers boyfriend and my mum came once and spent 9hrs all up doing my front yard and didnt even finish that so didnt even touch the back yard but that was the only non me paying gardening help I got last year..was that one time. (Gardeners are charging over $50 per hour).

    Anyway.. yesterdays phone call as per normal was confusing as I had previously contacted the council last year to ask for assistance only to be told that I was under the age limit to get any garden assistance (I had to be 55yrs or older) but when they rang yesterday and I told them what I'd previously been told, they said no that wasnt right.

    So once again getting info on phone has let me down.. seems one needs to contact ANY org/agency or whatever in writing and get a response back in writing as you never will find out the right info. It makes things so much more work when all this is already not easy but its the only way to be more sure of getting correct info. Im now going to have to write to them and ask them to put this in writing so just adds to the long list of letters awaiting for me to write :( (otherwise they could turn around and say they didnt say that to me). I hate all these rejections done to me by phone.

    Anyway the Council ASSIST, yesterday told me now that I cant get any help throu them as Im a client of DisabilitySA and they do not help DisabilitySA clients as they expect DisabilitySA clients to be getting help throu DisabilitySA. They said they only help people who arent coming under an agency.

    so this truely sucks.. this would mean that those who arent sick enough to come under an agency get occassional gardening support while those more disabled or sick cant get any at all!! (unless my lack of gardening help throu DisabilitySA is discrimination towards me or rather ME/CFS..otherwise this must be happening with all their clients???? Is it? Is their other clients being left with overgrown yards their support workers worry about entering).

    I really need to do a letter to a member of parliament some time about this as this truely doesnt sound right.
    ...........

    Im currently wanting to sell some stuff but cant as I could never have anyone come to my home to pick up something as it would be tooo embarrassing them seeing my yard (they'd probaby change them mind of seeing the yard and leave).

    I was going to pet sit one weekend last year and someone was going to pay me to do that while they were on holiday. The person came to my house and when they saw it said no due to the mess.

    The situation Im being put into gives me very little opportunity for any opportunities which could slightly help me by having a little bit more money and having a little more for groceries that week. (Im currently once again limiting how many groceries I can by at the shop as I dont have enough money to cover my normal food shopping).
    Last edited: May 9, 2014
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  10. taniaaust1

    taniaaust1 Senior Member

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    Dr update

    I just found out from my elderly friend that he may not be able to help me with anything at all next week on either the days he sometimes does (he's too busy trying to get his house ready for sale and things will probably be this way for the next few months as he has a massive mess there to fix.. as he's been having to try to help me so much.. he hasnt been at his other house for 5 months and its got mouse infested, there wasnt a part of the house not covered in mouse poo so he's having to throw tons of stuff out).

    So seeing we wont be working on letters re getting me the more support Im in desperate need of, my focus will be doctors appointments instead. So Ive been trying to ring all my doctors trying to get appointments. I may be able to fit two into my pacing for next week (with the travel granted for me to get to a few of them) IF I can get the appointments.

    First off I tried to get a double appointment with the GP Dr Jasmin MacIntyre re the rash (I can only assume at this point it will still be there in 3 more days) and to fill her in on my latest hospital trips and what is still going on still with DisabilitySA.

    Unfortunately thou she's booked out for that next week for double appointments when I'd be able to go and I got told she'd become very popular so one now needs to book at least week in advance if I want a double appointment. (Im not surprised as this young dr is very nice and doesnt fake she knows something when she doesnt!!).

    So anyway I can only get a single 15min appointment with her and even that wasnt easy to get. So I did that as its the best which can be done and at least this rash can be dealt with in a 15min appointment.
    .........

    I then tried ringing my CFS specialist, Dr Del Fante (who I also see for my POTS) for another appointment due to all the collapses Ive been having, only to find out he's on leave till the 10th June (so one month!).

    I then tried ringing my allergist Dr Allen Gale, but his office had just closed for the day. I'll try again Monday and hopefully he'll be free on Thursday for me to book in with him then. **fingers crossed** I then can get the allergy testing Im needing.

    It will be such a relief to take a week off of doing the important letters and complaints and focus on the just as important medical appointments.
    .................

    My advocate still hasnt rung me back (has once again the message not been passed on to her?) and neither has Madeleine from Saint John Community Care in which I've twice now on different days, tried to ring back (and keep getting an answering machine)
    Last edited: May 9, 2014
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Are there any voluntary organisations that can send a couple of people to do your garden? I contacted a local one years ago as I could not cut my hedge, partly due to weakness and partly due to allergy to spruce. A whole team of cheerful chaps turned up and did it!
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  12. taniaaust1

    taniaaust1 Senior Member

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    Happy Update

    I had a medical appointment with my great GP today.

    It didnt get off to a good start as someone to drive me there didnt turn up as the message didnt get passed on to the right person it was supposed to at the support agency. So just before my appointment time I was panicing due to no one showing up. A quick phone call to the agency thou fixed the issue and they rang the doctors surgery (as by then I was missing my appointment) to tell them they'd screwed up, to which I then got told they'd try to fit me in if they could.

    So we finally got the doctors with me not knowing if they were going to be able to get me in or not... turned out they did and thou the doctor said my appointment was going to have to be even shorter (to start with I'd only been able to get a 15min one) she ended up spending much longer with me, long enough to go throu all my immediate issues (to which I had quite a few).

    She did me a prescription for my glucose strips (something she said she hadnt done before but I hadnt been able to get them throu the normal channels due to Im not properly diabetic and rather swing with my blood suger into bad hypoglycemia and only just under the offical diabetic range).

    She looked at my rash (it was nearly gone today, just a big patch now of discoloured skin.. I'd booked this appointment Friday and in the meantime it had decided it would slowly keep on the improving side. She said its fungal (thrush I think she said). She said to use canastan on it or get something stronger (she gave me the names of the creams) if that dont work.

    We had a good talk about what DisabilitySA is still doing to me... We then had a talk about my latest Nourlunga hospital episode and how they dont know enough there to be able to deal with me. She said we need to put a plan in place for whenever I need to go to hospital so I dont keep running into naive doctors who dont know how to treat me.

    She then told me about a letter from the Repat Hospital she got re me .. to which she felt angry at them over (I guess what they said was ridiculous! I didnt ask to see the letter as I can guess what kind of crap could of been in it, the tilt table testing peoples knowledge of ME/CFS was crap! they probably think its a psych illness).. she said felt even more annoyed after I told her how they had treated me there. (I took to her info/reading material to her on how I should be being treated which she will read). She said I should put in a complaint and that she will support it, she may put in one too (I think that is what she said?, I should of taped the appointment).

    I told her how Im trying to take legal action now against the state disability service re discrimination due to ME/CFS and she said she doesnt mind talking to the lawyer for me. (I get one of my support workers tomorrow to drop in to her the phone numbers of the equal opportunity commissioner and the other lawyer and my disability advocate too and hopefully she'll talk to them all.. she can back to the equal opportunity commission that the disability service has no reason at all to say they do not have enough info on my disability as she's done them letters etc!!

    Maybe it was good the support agency messed up with passing on messages and forgetting I needed a driver as in the urgency then to get one on the spot.. my normal support worker got called (as she lives the closest I guess) and she was also able to back up how bad things have been for me.

    Anyway..this was the best doctors appointment ever. The doctor is listening and not too stuck up to actually look into my medical conditions and is being properly supportive and willing to back me up. I left with her too the that big new NZ study over the stigmatism we face over the lack of knowledge of ME/CFS out there.
    Last edited: May 12, 2014
  13. taniaaust1

    taniaaust1 Senior Member

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    That was meant to be being looked into. I had contacted this other agency and did have an appointment with them, who does like referals for people to places Rotary Club and others and they were going to see if I could get help throu one of these other groups. No one has rung me back. (I rang 2-3 times too). Its one of the many avenues Ive tried to go throu. (I may be contacting them again sometime but its all much.. all the phone calls Im doing with people not ringing back).

    The garden job here is currently huge as its just been left too long.. It takes 10 hrs just to do the front maybe more (it took someone 9 hrs one time and they didnt even get it finished).. and there is the back yard too which is just as bad if not worst. That's not even counting the pruning. (its very sad this place has got this way as its only about a quarter or a fifth of the yard size my last house I moved from was). All Im managing to do of the yard right now is a wee court yard garden section at one side of my house which is 2.5m by 2.5m.
    ............

    One of the phone calls I got and missed a couple of weeks back which Ive rang back 2-3 times since but they havent returned call back.. possibly that one is something to do with gardening support? its for something?? (thou it could be another rejection).
    Last edited: May 12, 2014
  14. taniaaust1

    taniaaust1 Senior Member

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    I just rang up and tried to get in with my specialist Dr Alan Gale (allergist) on Thursday (with the one appointment Ive been granted to see him) but not surprising on that short notice without luck so booked in for next Thursday and also booked in with his nurse too for the allergy testing Im needing.

    Found out there there is an issue as my referal to go and see him has run out and hence now Im needing a referal .........thou the GP is being really nice and yesterday said she will do some things by phone seeing I have a lot of trouble getting there, so maybe she can do the referal without seeing me but Id hate to have her doing a heap of things in her time without getting paid for them.. that just wouldnt be fair!!

    I'll sort something out over referal tomorrow as todays out for doing stuff as its the day my support workers take me shopping today so I got to keep things down today to just that.
  15. taniaaust1

    taniaaust1 Senior Member

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    Just had a phone call from Madeline from St John Community Care so finally found out what her call which I'd missed the other week was about.

    Turns out the phone call was a follow up from one last year to see how things are going and if there is anything they can do for me now. We had a discussion and she's going to speak to her manager and they may send something to the Equal Opportunity Commissioner guy Ian Law, to say the referal to them which DisabilitySA has done is inappriopriate (as on the referal to them DisabilitySA has requested support to get me to medical appointments and that is what they dont do! They are an org to help people meet social needs!! Im too ill just to be person to person socializing for the sake of it). They also had down that I had anxiety!!! (darn.. DisabilitySA is really determined to label me with psych issues and ignore my ME/CFS and POTS .. any anxiety have is over the lack of being able to get appriopate necessarily support!!).

    I did ask them if it would come under their social support if they could take to the big ME/CFS meetings where they have a special guest speaker as that would be helpful to me (they have special medical guest speakers a couple of times a year) but got told no they cant do that as they only operate in this area and cant take anyone into the city.

    They are going to send me some info and told me to contact an elderly place to see if they have any suggestions of any place which can help me (elderly place couldnt themselves couldnt cause I arent elderly) but 80%+ sure Ive already contacted the elderly place and already tried to follow throu on anything they suggested. They also suggested to try the council!! (which has now been tried so many times!).

    circles, circles and more circles.... everyone is at loss at what to do and everyone things its DisabilitySA who is supposed to be helping me.
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    :thumbsup: I glad to see that she is going to put a treatment plan in place with Nourlunga hospital. Would that include having the ambulance crew give you an IV at home?
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  17. taniaaust1

    taniaaust1 Senior Member

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    I guess it could do if the Noarlunga hospital has a record to know to approve a ECP referral from the ambulance crew so the paramedics could give me an IV at home.
    ...........

    I just found a note from the doctor yesterday. It tells me to contact the patient advocate at the repat hospital (where I had the tilt table test issue and struck the mocking head nurse). I had no idea hospitals had a "patient advocate" till she mentioned this.

    Anyway.. I hope this info is helpful to someone.

    I also found out today, that my previous concern is founded and I have replied to the wrong letter recently and not the one I was supposed to reply to which was being waited on by various depts. (while going throu my paperwork today I came across the correct letter and a cover letter letting me know they needed a response.. this was dated to be done by the end of March!

    So Im going to have to ring tomorrow and tell them I've just became aware Ive screwed up and replied to the wrong thing (from a completely different dept). Im trying not to get upset at knowing now that I definately screwed up.. I guess its just more proof of just how incapable I am of trying to advocate for myself and sort things out myself here
    Last edited: May 13, 2014
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It makes me feel tired just reading about all the bureaucracy you are struggling with on a daily basis. :(:bang-head::thumbdown:
  19. taniaaust1

    taniaaust1 Senior Member

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    thanks. Just thank God Im able to do this right now, in the past I wouldnt have been emotionally strong enough to do so. So many others just cant do this (and then we get ME suicides). This does run my health down more.
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  20. taniaaust1

    taniaaust1 Senior Member

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    Its 5.30am and Im awake now due to bad dreams. Tonight I was dreaming about trying so hard to do all I could to get better but then having people around me sabbortaging my efforts (by that I mean gov people, doctors and all the others I come across who should be helping me but dont). They plague my dreams. I then wake up feeling sick. What they are doing to me haunts me day and night.
    .................

    Brain Issues

    We are all affected by ME brain issues I believe. Never knowing when our brains are going to like go on strike and the confusion it causes us. Others who arent around us much never get to see much of our brain issues so have no idea how hard this can be.

    We really need a brain functioning questionaire specially for ME brain assessments so the doctors realise just how bad this is for individuals, based on questions asking if we are affected in certain ways.. it is no good giving us questionaires designed for other illnesses as ME is a very individual illness which doesnt follow the same rules as other illnesses.

    Its no good to ask ask us "Do you have memory issues and concentration issues?" to which we say "yes" but then the doctors at just our simple "yes" still have no clue at all how bad we may be.. or asking us "What trouble are you having with your brain? as we cant remember things and usually cant think on the spot, we cant reply well to this. We cant advocate for our own issues and suffering due to our brains.

    I thought I would start a list which could be helpful to those I need to get to understand, of my current brain issues and how these affect me in daily life. (Im going to add to this list whenever I remember to and experience something so to end up with a good list of the things I regularly experience).

    Here's yesterdays shopping trip of less then 1 hr, this isnt an unusual brain day for me.

    - We get to the shops and I realise I forgot my pharmacy prescription (which was one of two main things I was going to get). I did have it all with the other things on the cupboard ready to take but I still somehow forgot it. The worker had remembered for me the shopping bags (I would of forgot those too) so at least I had those. She'd also had to prompt me to remember my house keys, I'd forgotten those would of locked us out.

    - Next issue is my shopping list... as per normal Ive ended up lossing it (often my support workers keep hold of it cause I this happens whenever I get hold of my list). So we are now hunting for that throu my handbag but I cant remember where in there I put it. I'd already forgotten it and only had realised this on the way out of my house when one of my workers said "have you got your shopping list?" so had to go back to my kitchen to get it. On this occassion I hadnt screwed up when I was writing the list as I usually do as I only put a few things on the list as Im out of money and having to wait till my next pay (so on this occassion, I have one of my workers adding the cost of my shopping as we get it, something I screw up if Im doing that).

    - I then tipped all my charge all over myself in the wheelchair (then was trying to get charge out from between my legs before it ended up over the shop floor). What I'd done is opened my purse to see how much money I had but then forgot to close it, it then ended up upside down with all my change spilling out everywhere. (loosing my money or dropping it on the floor is a regular occurrance for me if its not money Im dropping while out, its my shopping list as I forget Im holding it and then just drop it).

    - Another incident when out shopping yesterday. I had some how ended up with my purse inside out.. so that all my bankcards were all on the outside of it. Im sitting in the wheelchair staring at it trying to figure out what is wrong with my purse.. "why is this weird??". My support worker ended up having to tell me it was cause it was inside out and help me to get my purse right as I couldnt even figure out how to turn it back (sadly my purse isnt a complex one either).

    - Problems at the bank machine yesterday. I got my money out and then the machine isnt giving me back my bank card. Im waiting for my bankcard, wondering why it isnt giving me back my card. Im there for so long that my workers end up asking me what was wrong and I tell them. They then point out to me that I already put my bankcard away back into my purse.

    - Having trouble counting my money to pay. Ended up just handing the money over to the checkout person telling her she'd have to count it as I wasnt sure if I was giving her the correct change. (my workers were watching over this, I guess they were counting it as the store person was, so didnt step in.. they dont interfere but just step in whenever they are needing to do so.

    - Of cause I didnt have any idea at all where we'd parked the car when we left the store, not the slightest idea at all.

    (im at the shops for less the an hour, I probably did many other things during this time but I've forgotten and also many of the things I do with my brain issues, Im not even aware I do them unless they are pointed out to me. My support workers are having to help me A LOT! I need my workers there not just due to having them there in case I collapse and to push the wheelchiar but also due to my brain issues as I keep getting confused. They actually have to watch what is going on and be stepping in a lot to sort out my confusion.

    If the support workers werent there, things would be sooo bad. Take yesterday for example, my bankcards would of ended up falling out of my purse and I would of lost those... as I just couldnt figure out what was wrong with my purse and couldnt even properly get my brain around that they werent all meant to be hanging out on the outside of it. I would of also ended up going into the bank and telling them their machine didnt give me back my bankcard when it had already put it back into my purse.

    Whether its that Ive blanked out while the checkout person is trying to pass my bankcard back to me, making a worker have to prompt me "take your card" or whatever.. my brain is making it very hard for me. When one is unable to figure things out onself, the simpliest thing can become a quite major problem.

    Back before I support workers and was still able to take myself places.. most of my episodes out of my house were spent trying to sort the big issues I was creating myself due to my brain issues..trips out were disasterous and so often resulted in tears due to various reasons eg Id end up crying in a carpark due to not being able to find my car and ending up being convinced it had been stolen when in fact I was looking for a car I no longer owned and hadnt had for years or whatever but was too afraid to go to the police "just in case it was my brain" again. I'd soo often loose my car and at times then had to try to get myself home without it (by this point I was always at the point of being about to collapse), having to go back another day to do a car search while praying it wasnt stolen. Its amazing the amount of disasterous situations ones brain can create due to the memory issues.

    Its interesting how brain issues we face on a daily bases, arent to be seen in our posts and people reading a post like the one I made here, if I didnt share what Im experiencing, my typing (thou one cant see all the corrections Im having to make).. doesnt show the bad state of my brain and memory at all. How can my posts look so functional?

    (looks like my idea of writing a short simple list of how my brain affects me for the gov departments dealing with me isnt going to happen.. I struggle with how to put this in a short list).
    ................................

    Night air has me currently coughing the croupy like cough I get, my chest is all irritated right now and it looks like due to last nights bad dreams, I'll be needing to go back to bed this afternoon and sleep as I cant get back to sleep now thou its still dark outside.
    Last edited: May 13, 2014
    Valentijn, MeSci and Little Bluestem like this.

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