1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Tania's journal of drug treatments and other ME things

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

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,526
    Likes:
    4,134
    Cornwall, UK
    Same here, Tania.
    taniaaust1 likes this.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    Im still really upset about the frogs, so much so I didnt come here yesterday, Im really wanting to withdraw. I just keep bursting into tears over it. I truely hate how many problems this illness is causing me (pets were good for my emotional well being, but of cause arent if Im killing them).

    Currently Ive lost my will to live as Im now feeling like my life isnt worth living, I CANT keep living like this, I will be better of dead. MUCH BETTER off dead. Yesterday I didnt eat at all due to this, I just now want to die (why put a heap of effort into trying to get myself food when I dont want to live?). I cant even sleep as Im so upset that I cant get my health needs and support needs met, its 3.30am right now. (I ended up with a headache, I think due to not eatting but its passed now). Can I will myself to die like the Australian aborginals do when a bone gets pointed at them? (I can only hope).

    Ive heard some religion in India (some religious ones) choose their times to die, they just sit in a street or something and dont eat till they pass and over there its seen as a strong thing to do. I want to choose to die now, I do not want more bullshit, I have no quality of life and the government doesnt care so why should I. I deserve some peace, I dont deserve what Im being put throu.

    I dont even have someone in my life who can just come here and give me a hug (everyone is too busy or just cant). How sad is that. My elderly friend is with his wife and hasnt been here for week. I was bawling on the phone to him yesterday, he had to hang up on me as he was at home and wasnt able to ring back. He didnt even send me a text back saying "sorry your frogs died" when I texted him over it (I texted him to phone me many hours later cause I couldnt stop crying before he rang).

    I cant even get a normal relationship due to this illness! as I cant leave my house to meet people and people at dating sites are sleezy and completely drain me, Im too unwell to be being able to meet people. So have no hope of a knight in shining armour coming along to rescue me eg advocate to the point where my health needs and life needs are being met.

    There is nothing at all in my life I can say is good. Yeah I do have a roof over my head but my house is a constant mess cause I cant clean it myself. Yeah I do get a gov pension but it wont cover me having to pay someone to be here to be looking after me and this home. I simply cant get basic needs met.

    Sorry no words from here can help this, words arent going to change my life and get me the help Im physically needing here to make my life more reasonable. Im in a hopeless situation and no words are going to change that. Hopeless cause Sth Australian government departments and our health system will not recognise ME as being a serious disease.

    I dont think Im healthy enough to have to go throu a court case, its probably going to kill me anyway trying to do it (with the no support, I dont even have a ME specialist here! but a CFS one who believes in the PACE trial and who doesnt properly understand ME at all eg once he told me one doesnt have things such as tremors in ME when I told him I'd been admitted to hospital in the past with tremors due to this illness and he things CFS and ME are the same thing. And he'd have to be one of my main supporting doctors in a court trial. What hope do I really have? for all I know he could tell the court I should do GET).

    Due to not being able to get medical treatment and get to doctors, Im out of sleeping drugs too so cant even try to do anything about this (I hadnt needed to take them for a while but do now with my current very distressed state and I really doubt the home call out doctor to which one gets a random one throu a call out service will give me more temazapam. Ive had no luck in the past with call out doctors as they do not understand my situation and just tend to "you need to get in and see your doctor for things like that" (so Ive given up ringing those, I tried twice in the past with things and it was useless). Im right now feeling like Im in a hopeless situation with anything, I just cant get the things I need.

    Im going to phone my GP tomorrow (she never called back when I left a message with receptionist saying I'd been in hospital again) and leave a message with her receptionist to see if she can do some prescriptions by phone for me. Im going to end up feeling even emotionally worst then I do now if I cant get NO SLEEP over this!

    Robyn from the Equal Opportunity Commission said I may have to live with the lack of services given to me due to lack of funding, well simply I do not think I can do this. My life is just too affected. I cant keep living without the medical care and physical support Im needing.
    Last edited: Jul 27, 2014
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,526
    Likes:
    4,134
    Cornwall, UK
    I wish I could offer more than words, Tania.
  4. golden

    golden Senior Member

    Messages:
    1,831
    Likes:
    1,071
    Clear Light
    Dear @T1,

    I had written initially about when i tried to save the pigeon, Or the two frogs which probsbly ended up freezing to death or the time when i used to rescue mice from my cat... I nurtured this little mouse back to health for three weeks and i mean intesnsively only for some freak accident to occur and he got out and under my mattress and i squashed him to death in my sleep.

    I had deep emotions from all these things and more.

    But then I wondered where on earth i was going - and it was nowhere. So i deleted my post.

    Even though there is no right thing to say, saying nothing is not right either.

    During these stormy times its MORE IMPORTANT THAN EVER to go back to basics. To eat simply.

    To rest, to be kinder to yourself. To detach from all thoughts of harm. These are just thoughts and they will pass. They will pass. They are just thoughts.

    You are stronger than you think you are.

    You must give yourself some space to grieve. Have a funeral for the frogs if you want to. Write a letter to them explaining how sorry you are. I really think they would forgive you. I really do.

    If you still do reiki you could try the sei-he-ki. If not, pull all your calming tools out of your box and slowly relax and breathe.

    Find all the tension in each part of your body and let it Melt. Surround yourself in white light.

    Breathe in, breathe out.

    Breathe in, breathe out.



    There are plenty of good things to come.
    Little Bluestem and Valentijn like this.
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    You can see our tears but you cant see our disability 2.jpg
    I usually never put my photo online but want to share this photo I just took.
    I'll titling this photo of me "You can see our tears but you cant see our horrific disability."
    Little Bluestem, MeSci and golden like this.
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    Even reiki isnt currently helping me any with my emotional state right now. I tried to sleep with my crystals too, its how I finally got to sleep last night with my moonstones. I tried rose quartz tonight, put it all throu my bed and thou its slightly calming Im cut off from my crystals energy.

    This has been a long time coming.

    ive been doing those things for past couple of days and even if I get myself into a calm state, Im still not wanting to live. I do not see any future for myself at all. (all those things are things I usually do to maintain myself emotionally normally)


    What good things? Ive been constant nightmare situations for as long as Ive been sick, trying to get my health needs met and then my support needs, it never ends. All that is going on here is Im getting more and more issues with how badly Im being treated which I cant at all keep up with so all the abuse I face just continues. Im going throu an long term ongoing abuse and neglect situation.

    There isnt any suitable options for me to get out of this situation without doing my body more damage and it takes YEARS for me to recover from dropping baselines (and that is only if situation changes and maybe I got lucky in the past, there is no guarentees at all I can recover any from this current level of ME and the harm done to me).

    My health cannot get better while all this abuse goes on and can only get worst with this. (the discrimination with the ambulance service I keep getting cause they dont understand this illness, the hospital abuse with that nurse at Repat mocking me etc so I now never want to go there again, disability services abuse). and my health just keeps getting worst with more and more dangerous things. (It will be a Godsend when it wipes me out).

    That in itself is a huge issue for me and actually hard for me even when Im doing what is my ME "okay" due to just how hard it is for me to be making myself suitable food. The basic of basics Im finding very difficult (even just to cook a roast, the effor of that has caused me to actually end up in hospital this year).

    So trying to cook right now which is hard for me anyway to be doing when Ive got no will power to be putting in the amount of effort needed (it takes LOTS OF EFFORT AND ENERGY for me to do food), is near impossible for me right now. I need huge amounts of willpower to keep surviving with living with this illness with the severity I have. I need to be more then just strong to keep going on (Im often putting in like super human effort here).

    No Im not, Ive almost successfully killed myself in the past and ended up in the ICU due to it. Im ONLY HUMAN! Im not super human like I feel like Im expected to be to keep surviving this. Why do people expect ME people to be super human?

    Frogs arent going to read letters (sorry Im typical Aspergers so see no sense at all in something like that). I wish I knew if they were okay about what happened.

    Im really sorry what happened to you with the mouse.

    Thank you for trying to say something even if it didnt help (at least I know a few here care).
    Last edited: Jul 27, 2014
    merylg and golden like this.
  7. AndyPandy

    AndyPandy Making the most of it

    Messages:
    213
    Likes:
    459
    Australia
    Thinking of you @taniaaust1 and sending you hugs. Many on PR care about you.
    Little Bluestem and MeSci like this.
  8. silicon

    silicon Senior Member

    Messages:
    148
    Likes:
    72
    Dear Tania,

    Your suffering is heartbreaking to me. I know that you touch many, many lives, especially here on PR, and that your thoughts and words are highly valued. You've helped me today. You will be very sorely missed if you were to leave us, and a huge, painful void would be left in your absence. I hope you decide to stay.
    MeSci and AndyPandy like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    1,555
    Likes:
    2,564
    USA
    @taniaaust1 I am so sorry to hear what you are going through and wish I had some way to concretely come help you if we were not in separate countries.

    What I can tell you though is how much you have inspired me by your spirit and presence. When I first joined PR and was asking about Florinef you spent as tremendous amount of time and energy giving me feedback and it made me feel very welcomed in the PR community.

    You matter and there are people around the world who care about you deeply. Right now while you are grieving your frogs and not eating or sleeping, it is not the time to try to make any big decisions, especially re: ending your life.

    Give it a few days and focus only on the absolute basics- drinking water, eating something that does not require preparation like a yogurt or protein bar and try to get your sleep meds. All else like fighting the ambulance company can wait.

    If Reiki or crystals or prayer or calm music or anything helps you, then focus on these things. And remember that you matter to us and that we care about you deeply.
  10. Ritto

    Ritto

    Messages:
    26
    Likes:
    30
    Sending you strength and love
    MeSci and AndyPandy like this.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,526
    Likes:
    4,134
    Cornwall, UK
    I second all of that and more.

    I completely understand why you are having to fight all these battles. You are in an impossible situation. The lack of support and the fight to get it are both making you more ill, meaning that you may need even more support, and it seems to be a never-ending cycle. You both need to fight and need not to fight.

    But I agree that when one is in a very emotional and fragile state is not the best time to make decisions.

    Things may seem clearer when you have had some decent sleep, and I hope it comes very soon.

    If you can take a few days to rest, or even one or two days, I think this would be beneficial.

    Please hang on in there, @taniaaust1.
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    This swollen has happened within  the past hour 2.jpg
    thanks all.

    Here's a photo of my currently swelling ankle, its going into a massive lump on the outter side of it as shown here.

    Due to the ME, today Ive injured myself **sighs** (its never ending), I had a bad fall, I hurt both my hip (where I slammed really hard into the floor and also my ankle. I went into like shock after this and my teeth were all chattering crazily for about half an hour (I think I was crying in severe pain for far longer then this due to this latest incident. I was in so much pain I couldnt even tell him what had happened, I couldnt speak properly).

    My friend was thank God visiting me when I fell so he was able to help me get to the toilet when I needed to go and back to bed (he actually had to drag me throu my house as Im too heavy for him to lift and we cant get the wheelchair trou my place due to boxes from not being unpacked). Im sure he really hurt his hernia having to drag me throu the house.

    Actually the truth is we only made it half way to the loo so he ended up having to bring me the kitty litter tray for me to pee into (and he was horrified when I ended basically sitting in it as I couldnt balance one legged while trying to pee).

    He ended having to put me in bed with my electric blanket on full and heaps of blankets over me for over half an hour before my teeth stopped chattering (and it wasnt even cold today, it was just the shock of the fall).

    Anyway after hours of reiki and 3 hrs of ice on my lasted injury the pain finally stopped (I seem to most of the time be able to prevent bruises or even make them vanish with the reiki) but within the last hour, my ankle is swelling. Its going to be a terrible way no doubt by tomorrow morning. (I hopefully there is no real damage done, last time I broke a bone I didnt even realise I had).

    At least with this fall I didnt this time almost fall into the hot oven when opened! (I think of that incident a lot and cooking a roast nowdays is scarying me due to that other incident).

    Im still not eatting, its not that why I fell thou, I often fall with the ME, sometimes my falls are due to POTS and other times not eg balance issue or some other issue, it was partly brain issues which caused todays fall as I put my feet down but I dont think I placed them properly or something, fell over my feet??? (Ive no idea how I did this) but also one of my legs completely gave way on me (so like stepping out and finding I didnt have a leg) so I just went crashing so hard down. I havent changed my mind, I cant live like this.

    If I was elderly, Im sure todays fall would of probably broken both my hip and ankle due to the way I fell.
    Last edited: Jul 28, 2014
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,526
    Likes:
    4,134
    Cornwall, UK
    Are you going to get the injuries looked at/X-rayed?
    Sushi, Gingergrrl and Valentijn like this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    I was going to share something strange which happened a few days ago (just before I killed the frogs), has anyone got any ideas on why this occurred?

    My under arm (just one of them) was giving off a very horrid smell, it smelt like old urine coming out from my arm pit, strongly smelt of urea. On top of the strong urea smell it was also giving off a mousey smell. It really really reeked.

    I ended up having to shower 3 times that day (which is hard!!! I usually only shower twice a week due to having to pace) as I kept smelling so dreadful (within an hour I was stinking again of urea under that arm). Just imagine a baby left in a urine soaked nappy for 24hrs or so, that is what that under arm was smelling like.

    When I took my top off, whatever was going on there, it ended up staining my top (that's what the picture is of). Note I was using bicarb soda as deodourant that day, so no way would that have stained my top yellow like this (it hasnt ever done so before).
    ...............

    Many years ago I got a strong discharge under my arms but on that occassion it looked like actual dried blood but it wasnt blood but who knows what. Some kind of strange detox of something in my body. That didnt smell like urea.

    What kind of biochemical??? issue leaves someone reeking of urea and like mouse?

    Attached Files:

  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    The only way I could do that is to ring ambulance. I dont even get to my important specialists appointments as I dont have enough support, Im developing diabetes which is being untreated among many other worsening issues. . My systolic BP is spiking up to nearly 200 at times .. dangerous!! (my dystolic can go just as crazy) and I havent even been able to get back to my doctor over it.

    The hospital said I need to get my doctors to manage things but I cant get to them, my doctors write letters to the disability service saying I need help with transport but they get ignored. This is all part of why my whole situation is hopeless. This ankle thing is minor (thou huge lump), its not going to kill me. We would of rang ambulance if my shock symptoms didnt settle (at one point earlier I almost passed out, we would of called the ambulance then).

    Last year I was coughing up blood at one point (I have a cough which can occur when I go into a ME flare, something viral reactiving?? I suppose and on that occassion I coughed for 3 weeks till I was actually coughing blood). I didnt call an ambulance for that (just ended up putting myself to bed and seriously wondered I'd die during the night but didnt care, too sick to care. I actually felt worst then when I'd been in hospital on a drip for double pneumonia).

    Im very very sick here a lot, lots of different things going wrong and unable to get to doctors without calling ambulance. Its no good calling in a loctum doctor for the ankle as he would just expect me to get to the hospital to get it scanned so that's useless.

    My friend was running late home to his wife today so had to leave me here injured and couldnt do anything (he would of got into trouble as it was, trying to help me with my toileting made him later to leave before then he should of done). My ankle hadnt swollen at that point, I was just in bad pain due to it and couldnt walk on it.

    If his wife suspects due to him coming home later then what he should of done from work, I'll loose him as help as he could be forced to cut off helping me (he's coming once a week for a short time when he can) and then I will NO ONE at all except the support workers for a very short time twice a week (one of those is to get shopping). He's all that is stopping my current situation in being soo much worst then it already is.

    Everything is being left as there is too much which I need help with eg my clothes are currently sitting all wet in my washing machine still and have been there for the past 5 days. My friend could of helped me with that but I prioritised sorting out my medical file to hopefully stop the ambulance officers discrimination so the wet clothes still there. (and tomorrow (tues) my support workers wont be here long enough to fix that problem either, they probably will get all the dishes done thou (as it is they are often ending up working over time, trying to help me). I wont then have a support worker back here at all till Friday for a short time again.

    There is too much needs such which needs doing here which I cant do or if I do I'll further crash. (My friend also had to sort out my online orders today too, things which I'd brought and gone wrong. It is too much stress for me to deal with when there is issues with online orders.. As it is somethings Ive brought and arrived damaged, some of that stuff has been left for 5mths as we always have more priority things and werent followed up enough so I probably cant even get my money back now.

    Everything in my life basically is currently in crisis currently due to not having enough support.

    My friend is old .. in his 70s (or is it 80s I keep forgetting his age) and Im in so much trouble now with my situation, if something happens to him, Im even more in trouble then I are now and Im already in severe trouble due to lack of support. Its endangering my whole life with me being unable to get medical treatment for treatable things (unfortunately thou none of it easy to treat). I constantly fear over what will happen to me if I loose my friend and his occassional help.

    My friend was attempting today before this happened to help me get my medical file together so I wont be so badly treated next time an ambulance needs to be called (the ambulance paramedics were annoyed last time as I didnt have my medical stuff together for them) . Im still also not at all over yet how badly I was treated due to the hyper POTS the past two times by the ambulance officers, (in the past so much got pulled out of my medical file to copy for doctors so getting my health info together again was a shambles, messed up in piles of paperwork).

    Unfortunately as I injured myself, we didnt even that done and that was todays priority goal. (him being old, he cant do much either, he's almost like me and he was actually sick today too so shouldnt even have been here but he does what he can as I knows things are desperate here).
    .....................

    Im getting brain drops outs of important info. The other day I couldnt use my mobile for half a day as I couldnt work out why it wouldnt charge. Turned out my brain wasnt registering to make sure the power point was on, it just didnt occur to me. (it took me 11 hrs or so to figure that out so I was left without a usable mobile phone).

    My friend spends the time when he comes, usually trying to fix up the issues Im having... always important stuff.

    Today he fixed up the DVD player (I usually fall asleep to a DVD but hadnt been able to as I couldnt get the remote and player working) turned out I'd put the batteries into the remote the wrong way!!! I could of swore I did that right. (I'd also plugged the DVD player up wrong). No wonder I couldnt get things to work!

    He tries to fix the things which help to make my life a little bit more bearable, as much as he can. He also fixed something up on my phone today which I couldnt figure out. I keep forgetting how to work stuff with my brain (its almost like Im constantly having to relearn things over and over again, lots of hard brain work).
    Last edited: Jul 28, 2014
    Valentijn likes this.
  16. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,292
    Likes:
    9,006
    Amersfoort, Netherlands
    I have a relatively healthy family member who tends to sweat somewhat yellowish. I don't remember why exactly. As far as stinky sweat goes, mine turns stinky if I've been pushing my OI limits and standing or sitting way too long.

    And that's one helluva cankle you've got going on! Any chance you can get some ice on it?
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    Its had hours and hours of icing and Im still icing it. As soon as I stopped the ice after hours, it then swelled. Im currently onto the second thick steak out of the freezer to ice it.
    ......

    When you over do it does it smell like strong urea? (I also get other bad smells, something to do with biochemical too as there is a bad smell I can get before I feel mood swingy but this smell is different to my other bad smell).
    Valentijn likes this.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,526
    Likes:
    4,134
    Cornwall, UK
    Do you still have the cat?
  19. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    My ankle is swelling more as Im posting. Now it isnt just a huge lump on the outter ankle side but now the inner ankle is swelling too (that kind of dont appear good, Ive never had swelling on both the inner and outer ankle before). Strangely thou I dont feel pain in it anymore.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,953
    Likes:
    4,935
    Sth Australia
    Yes, Im glad I do as I would of been even more distraught today if I lost her today so close to loosing the frogs. They rang and said they got too busy to pick her up today (and drop the new one in) and are now planning to do that next Monday.

    What's going to happen now is they want to drop two cats off to me (two really wont be much more difficult to look after then one). They said the very scared one, they want to pair it up with a young friendly one to try to show it that it can trust people. So now wont just be getting the silver? one but also a ginger 6mth old who is in the process of being flown to this city now (one of the plane services I think transport the cats free of charge for the rescue).

    Im soo glad the cats didnt come today with my ankle like this.

    When they drop the cats of Monday, they will drop off the kitty litter, cat food, another cat tray, flea stuff (which I may not be able to use depending on what it is, wormer. One of the cats is a sponsered one so the person who rescued it and handed it to the rescue, covers its costs.

    They said if a trial of two cats are too much for me, they'll come and pick one of them up. (I assume the 6th month old friendly ginger will probably get adopted before too long). At the friendly one should meow at me if I forget to feed him, I currently forget to feed the cat just like I often forget to feed myself but she certainly lets me know!!
    Last edited: Jul 28, 2014
    MeSci and Valentijn like this.

See more popular forum discussions.

Share This Page