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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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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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    What did she think of you using her litter box? Cats can be quite tempestuous when it comes to sharing :D
    MeSci likes this.
  2. golden

    golden Senior Member

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    Just to jump straight to my point

    i cant remember if this option has been explored?

    There are volunteer agencies which try to pick up the slack of the lazy good for nothing government disability services..

    I have been searching for one that covers the Seaford rise, adelaide area.

    I sent off two emails (with NO personal info. -) but a rough outline to get feedback from these volunteers if your situation and area is one in which they coukd help with...

    Unfortunately one didnt go through and was lost :( and i have not heard from the other yet.

    I thought what if people c here could do the messy searching (which is neurologically difficult) - an initial outline of the urgent help needed eg.

    *Unpacking boxes and tripping hazzard
    *clean floors
    *clean pile of dirty dishes
    *take to doctors appointments
    *tidy garden (snake hazzards)
    *proper advocate who does her job properly

    *cooking meals

    Then the hopeful leads could be passed to you tania?

    There must be someone, some where, even a chrisstian organization maybe who will do the physical things that need to be done which can leave you to get rest.


    Does PR have any ideas on how to get some basic physical support in place?


    Sorry about your ankle. The boxes have a good message on though.
  3. taniaaust1

    taniaaust1 Senior Member

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    the inner side of my ankle 2.jpg
    photo of my inner ankle area (the other photo was of the outside of my leg/foot so other side), its swelling so much on this inner side now that the swelling bit is hanging out over my heel giving my foot a distorted look.

    Does having both the outter and inner side of the ankle swelling, does that mean Im far more likely to be dealing with a fracture? Anyone know the likihood of that with both sides of foot/ankle swelling (would that probably mean a very deep injury there?) But its still not bruising (maybe due to the reiki thou, it did actually start to do like deep bruising on the outter side of it but the reiki brought it back to a normal colour).
    Last edited: Jul 28, 2014
  4. taniaaust1

    taniaaust1 Senior Member

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    The cat is very funny with her toilet habits. I keep her kitty litter tray usually in the toilet (its so much easier for me to clean there as it involves me not having to walk any distance to clean it, I pick the clumps out of it when I go and I just throw it right in the loo).

    Whenever I go, she rans and gets into her tray and likes to go at exactly the same time as me. (Me using her kitty tray, showed just how well clumping corn kitty litter works!!). Im going to miss the toilet sharing when she leaves.
  5. taniaaust1

    taniaaust1 Senior Member

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    Thanks very much for that. One of the big issues I have is MCS so that means that no one wearing perfumes (chemical deodourants can enter my house/ it actually can cause me to collapse, I think it was a very old air freshener in the car of a support worker which put me into hospital last time. Chemicals can be a POTS trigger).

    One of my home support workers actually had to change or washing powder for her clothes back to her old one (as I got a bad reaction when she changed brands, fortunately she was able to figure out what had caused my reaction).

    This MCS issue is one of the reaons why I havent been able to get any volunteer services to step in and help me.

    The other reason is that I was deemed too ill by a couple of the volunteer services I spoke too, the wont have their volunteers working with someone who collapses as they view that to be a care worker thing rather then a normal support worker thing and hence believe only trained people should be taking me out. This was one of the issues with places like the Red Cross Volunteer service.

    The local council wont help me with the garden as one of their rules is they only help those who arent clients of other services eg DisabilitySA (otherwise I could be getting the council help twice a year for that garden).

    I havent tried Church groups (note Im not Christian).

    There is also the issue in which my brain can be completely going when Im out cause of having to be more upright, so having all different workers would be an issue as Im running into issues all the time. (my support workers have to step in a lot and do my thinking for me or we run into trouble. I need to be watched for things like I dont loose my purse while out etc etc, Im always loosing things, leaving bank cards behind etc). I may also have to help take me to toilet at a gas station on way to my appointments etc etc. so the person is having to do actual carework with me not just transport.

    Note.. half the time Im taken out to anywhere except a very quick shopping trip (and taking all kinds of precautions), I actually have a collapse or very near collapse (where my support person then has to be really taking extremely good care of me), unless Im using the wheelchair the whole time but I can even collapse in the wheelchair (and fall out with seizure symptoms).

    Ive got so bad that an ambulance has had to be called at 2 out of last 5 doctors appointments Ive had (and when Im getting them, Im only JUST gettting throu without a collapse), Im quite a bad way when I get taken out. (anyone that takes me out probably know how put someone in coma postiion etc case I can go unconscious on them. Im at a very risk when I leave my house). Even the trained carers who are used to dealing with sick and disabled people, get very nervous at times when Im heading downhill and they can see it.

    If you can come up with anywhere suitable for me to get a volunteer from which would be suitable dealing with a severely disabled sick person and taking on a carer role while out too (as it is needed in my case), I will certainly follow it up. Thanks greatly for your help.

    Things like the garden. It probably would be easier to find a volunteer for that (thou Ive tried and so far not got lucky). I do not mind paying them some (I just cant afford the prices the professional gardeners charge).

    Ive no idea to that.
    Last edited: Jul 28, 2014
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  6. golden

    golden Senior Member

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    This is a thought too...

    The Cat organisation who you foster cats for - they normally have a whole crewe of volunteers eagre to help.

    Since you are part of their team and look after their cats I wondered if they could do a one off clean - each time the changeover of cats occurrs...

    This is not unheard of as i have worked in rescue centres and also people who have their own pets but have gotten swamped have had volunteers go in and clean in order for the pets to be alliwed to stay at home.

    A good foster home like you provide is a real treasue and highly valued in cat sanctuarys

    I expect it would have to be delicately raised or subtely suggested though...
    Valentijn likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Right at this very moment my floors are okay due to the mistakes done in the past 2 weeks where the support agency (due to new person managing my case I guess?) accidently gave me 2 hrs extra time. Im sooo very glad of that other wise I would of bawling today over being on a horrific floor and having to be dragged throu the house over it.

    But that is an ongoing need. I do drop a lot due to the ME, food and other things so my floors really should be getting done once a fortnight.

    My support workers get my dishes done much of the time (not always thou, I hate it when things end up being left for a week as workers didnt get time to finish).

    So that leaves the rest of the things on that list (and sometimes the floors when needed).
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  8. taniaaust1

    taniaaust1 Senior Member

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    The rescue org I foster for, is actually far on the other side of the city (hence why its taken so long to pick up cat from me and drop them off etc, Im like 100 kms away one way. The also all work full time in other jobs (they are all overworked volunteers, there is no one paid) and the cat rescue stuff they do is outside of their full time normal day jobs.

    Its not at all a rescue centre but a rescue network where the cats are only in homes (so doesnt have a lot of people volunteering like what happens at rescue centres). Its just a very small team of people.

    I know they sometimes loose members of the network due to the pressure put onto them, , the person who dropped off my current cat, she quit volunteering for them due to the pressure.

    When Ive seen them before (only twice ever before have they come here), there was also other cats in the car too so couldnt stop at all (the cats in their carriers cant really be left in the car). They do prefer people pick up and drop off the cats themselves due to how busy they are but they know Im homebound and dont drive, hence why they drop off to me.

    When a person wants to buy a cat, its dealt with throu me and not them so I wouldnt even see them then unless Im being brought a new cat (they leave the cats adoption paperwork here and I'd send the money into them if someone come here to see the cat and it gets adopted).

    Its not a huge rescue, thou they do have a lot of cats for the number of people in the network (I know the one who runs it is has been in trouble with her council due to all the cats, she's been trashed in the media due to it (one of the current affairs shows actually) and due to struggling to cope with all the rescues (people complained).

    I dont know others in their network or other rescue communities as Im not involved at all in the FB of the rescue network (keeping up with this website is enough for me), thou I do know none of them lives out my way as Ive been told that (I thinks its around an hours drive or more (both ways) for volunteer who lives closest to me (ive never met or spoken to her)
    Last edited: Jul 28, 2014
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh, a ginger cat - I am jealous! I lost my old ginger girl last year and really miss having that lovely colour around (as well as missing her of course) and am trying to adopt a ginger-and-white stray who comes round.

    I hope they bring you happiness.
    taniaaust1 likes this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    For floor cleaning, maybe one of these would help? I don't know if they are safe with pets - you might need to shut the cat(s) out of a room while it cleans it.

    It looks as though you can get them cheap, although there are expensive models too.
    taniaaust1 likes this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Can't answer your questions for sure but this i
    I can't answer your question but this is what my sprained ankle looked like. The front of the shin/foot is facing the camera (I had an operation on the foot decades ago which is why it looks a bit weird).

    Attached Files:

  12. taniaaust1

    taniaaust1 Senior Member

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    Yeah I have thought about things like that but thought they were very expensive. (Actually didnt know you could even get them for the price of that one on ebay. Would they move throu mess thou?
  13. taniaaust1

    taniaaust1 Senior Member

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    Interesting, Yours has got a lot more bruising then mine has (thanks reiki). I actually got to see a doctor today and he said he thought it was a twisted ankle. (I'll give update in my next post of the chaos of today).
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  14. taniaaust1

    taniaaust1 Senior Member

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    Update on Todays Chaos

    Due to only getting 3hrs sleep currently per night due to all the stress Im under etc. I was needing to go back onto drugs for my sleep again (Temazapam), I hadnt had to do have this for ages and when I got the box out, I realised it was long expired. :(

    I thought maybe my GP may help me with a new prescription of this by phone, so I rang there to leave a message for her to phone me. Turned out thou (as my bad luck seems to hold) my GP has gone away for FOUR WEEKS. :wide-eyed:

    This sent me then into a panic. What on earth was I going to do with my GP away for a month, to not even be able to try to sort out any of my ongoing medical dramas at least by telephone or at least have a doctor to speak with if only by phone.

    I figured a locum who doesnt know me wouldnt probably wouldnt give me the prescription I needed esp since its been a while since I last took it (doctors here really really dislike giving people benzos and my original prescribing doctor who used to have his own clinic is now retired!

    So asked if one of the other clinic doctors of my GPs clinic (where all recent records are) could home visit. I once again got told thou they dont home visit (kind of strange seeing their clinics leaflet says they do) but they said they would see if one of the other doctors would call me back "some time". So I was then in the normal crisis (will I be able to get a prescription Im needing? or no sleep again tonight) "waiting for a call back" mode (I seem to be nearly always in), I really want and need a decent nights sleep.

    After several hours still no call back, my support workers came to take me shopping and I found out that once again the agency has screwed up my support time to my advantage and has accidently given me an extra hour today (guess I do need to get lucky at times, thou they could try to take it out of my future support time when they find out the mistake).

    Anyway due to this mistake of the person who books my workers and also the fact I had hardly much shopping to get today due to not eatting still and also less dishes sitting there to be do due to that. This ended up causing me to have 50 mins time left to do something else after the small shopping and dishes .

    I would of used this extra time to get the workers to help cook up some meals for me to freeze normally if fate caused me to be left with extra time but in the current situation Im in. I asked to be run down to the doctors clinic seeing noone there had called me back. (the past words of the receptionist still ring throu my head "people who come into the clinic are given more importance".

    So one of my workers took me to the doctors clinic (and the other headed back to my place with my shopping in the car to wait for us. As it is agency rule that the workers arent allowed to be in my house without me being there, she wasnt allowed inside so couldnt do anything. Turned out due to all the issues which then occurred, she ended up waiting there for over 1hr.

    Anyway, at the clinic, I told the receptionist my support time finished in 50 mins so I had to be home by then and asked was there anyway I could get in with one of the doctors fast. The receptionist said she'd see if a doctor could talk to me but said there would be a 10min wait. I went to panicing at this point as it suddenly occurred to me that I couldnt remember what dosage of Temazapam I usually take and I'd forgotten to bring the old expired box in with me. I knew this would probably make it even less likely I was going to end up being able to get the prescription.

    So at that point while sitting waiting for the doctor to see me, I decided to get the worker doing nothing, waiting for me at home in my driveway, to come to the clinic and get my house key and then go home and get the old tamazapam box and bring it back to me at the clinic. (I thought as she'd only be in my house for a minute without me being there, that may be okay with the agency in the situation as it was).

    As the home support agency also has the rule that the support workers arent allowed to give their phone numbers to us, this meant thou I couldnt myself contact the worker waiting for me to get back myself, so I had to ring the agency and ask them to pass on the message of what I wanted happening. "Please come to the medical clinic and get my house key and go back to my house again and bring me back the temazpam box which is on my kitchen counter, we will be seeing the doctor in a moment and I may need that box).

    The agency people on other end of the phone did seem to be okay with phoning the working and giving her that message but I guess that the one I spoke too wasnt aware of the rule of no workers in the house while you arent there as it turned out, the worker afterwards said wasnt allowed to do this. We were called into the doctors at that point.

    The doctor was nice but not good at dealing with Aspergers people and very quickly upset me by his wordings. He said "I'll only give you a few days supply of it, till your doctor comes back. As I have Aspergers words I take often literally so I thought he was saying he'd only give me a few pills of Temazapam (when I knew my doctor was going to be still away for four weeks). I was requesting to be given enough for 2-3 nights a week till she returned to sort it out so needed at least 10.

    So anyway I got upset at that point as I knew it was very doubtful I'd be able to get back there at all to get more, I didnt want to get only three pills. I also didnt know if my normal dose for this was 10-15mg and that would of meant 3 pills at only 10mg (so maybe only enough for 2 nights).

    My support worker at this point as she realised he'd confused me had to step in and clear up my confusion as the doctor didnt understand why what he'd said had upset me. **sighs, why do people use words like "few" if they dont mean a few?

    Anyway, that sorted out, he then looked at my ankle. said it looked like sprained ankle and not broken. I also got him to note on my record for my GP when she returns, that the hospital took a BP recording of over 190 when I was there last.

    So it was then back to the chemist second time today with the prescription, I'd put in another prescription earlier. When we walked into the chemist, suddenly it occurred to me "OH NO!! I actually forgot to pick up the med for the prescription I put in earlier!! Its still sitting here waiting for a pickup".

    My next issue was the TemTabs my prescription was for, the pharmacy didnt have any, they asked me if I wanted an alternative but when I asked for more info about it, they said it had different ingredients. **cant anything go right without giving me stress?**. Im like "no way, Im chemically sensitive and react to lots of drugs, I want to stick with one I know I dont get a bad reaction too and which I know works for me".

    They told me they could get some in tomorrow but when I said I wouldnt be able to get back then to pick it up and asked if they could do a home deliverly to me then.. they said no, they dont do home deliveries on Wednesdays. :rolleyes: .

    So at that point I asked them for the prescription back and said I would try the other pharmacy (by this time, my support time even with the extra mistake hour for today was all gone). We head to the other pharmacy, they do have the med I need but we are told its at least a 10min wait. So I call the support agency and tell her that I have the worker doing overtime as we are having to wait on a prescription.

    Anyway they arent happy (by this point I still have the other worker who cant be in my house without me due to their rules, she's still waiting in the driveway and its now been an hour. This means BOTH workers are going over time now even the one I cant use). The one waiting at my place has her gear inside my house to pick up before she leaves and as she has my shopping with her even if that wasnt the case, I wouldnt want that left outside where animals can get into it or someone steal it if it was all left at my front door.

    My support agency coordinationer Beck starts blaming this situation on me, said we should of done things in different orders, said I should of gone home with the shopping! **sighs**, well we had no idea that my normal pharmacy wouldnt have my medication!!

    The order we'd done things in.. one worker taking me off to doctors while the other worker was loading the shopping into the car and then taking it home, was supposed to save time by having them both of the go doing things at once rather both being with me (leaving one worker not doing anything), when I only needed one with me to push the wheelchiar after I'd done the shopping. None of us could of predicted the issues. How can one predict that the chemist wont have ones medication?

    Anyway, I got blamed today by the support agency coordinator for this (Beck "you should of done it differently") for sending the workers over time. I ended up handing the phone over to my support worker, to stop the coordinator having a go at me. I do not need that extra stress.

    Im still feeling like it would be best if I wasnt alive. Its not my fault, I constantly do my best but it is NEVER enough and then people blame me. I do not deserve this). It sucks Im blamed cause I dont get enough support time. All my support workers are very frustrated that I dont get enough support time hours, it impacts on them too!!

    I have so much bad luck that I feel like Im cursed.

    Im currently now sick with adrenaline due to all this (at least thou I did get the prescription so I can look forward to at least tonight getting some sleep!!).
    Last edited: Jul 29, 2014
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  15. Valentijn

    Valentijn Activity Level: 3

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    The agency management really does sound like it has some serious problems in taking your disability (and ME/CFS) seriously.

    Taking them to court is currently looking like the only way to ever get the situation resolved with them. I suggest requesting compensation for the past (and current) pain and suffering and emotional trauma which their denialism of ME/CFS is causing you - in addition to injunctive relief of course (the court requiring them to do their bloody job without discriminating based upon your disability).
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Don't forget to tell your advocate about this as evidence of insufficient support.
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Volunteers could do the garden work, that would not be working with you at all. If you promised to go to bed and stay there once you let them in, maybe they would clean floors, wash dishes, do laundry, and cook. Could they unpack the boxes without your supervision? Maybe you could sit in a chair and supervise. That would free up your trained support workers for trips away from home and other 'interactive' things.
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  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't know but am quite liking the idea of getting one myself! I note that @Indigophoton mentioned having one so can perhaps help with more info.

    I have decided to start a thread on them.
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  19. Indigophoton

    Indigophoton

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    Yes, I have one, it is really very good. I will post on the new thread.
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  20. golden

    golden Senior Member

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    i see. I know this type of rescue.

    Very good thing you do, thankyou.

    It maybe worth mentioning then in passing that you are looking for volunteers for your garden and house chores.

    This contact lady who will visit you to drop of cats sounds like a resource to me. If she networks and you tell her you havent got a network, she maybe able to just put it out there and see if anything comes from it.

    The grapevine is one of the best ways to get help.

    As far as MCS goes and the volunteer agencies you have already contacted - that sounded really hopeful to me as its a solveable problem.

    Its good news that you have local vokunteer support that covers you - it sounds like that could be tweaked and tapped into.

    How far did you get in communication with the volunteers?

    (please dont answer if it is of no help to you)

    You have all the supporting medical evidence, and are in receipt of benefits - so these are huge obstacles already overcome. I am sure you will qualify.

    I think given the right explanations , brand names of the washing up powders that you can tolerate with possibly an offer of supplying it for free....and making sure they understand just how sick it will make you which is counterproductice to your goal of help....

    Then i cant possibky see a problem with the vokunteers doing this and going perfume free....

    Also a user friendly link on asberges would help too...

    If you can get in volunteers- then the official carers can get you to ur medixal appointments? although niw i am recalling some rule or other u mentioned a while ago preventing this.

    If the volunteers do not understand MCS/M.E./Asberges... Maybe a brieft letter from a charitable organisation like PR woukd do the trick - sometimes it takes someone to say exactly the same thing e are saying on our behalf for it to be geard, acknowledged and understood.

    Although that letter from the Countess de Mar was very good explaining the discrimination and being left to rot.
    W
    I would have been to a computer by now to do this post better but had another urgent issue crop up.

    Eat, rest, sleep. Repeat. :)
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