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Please help, I'm in a predicament

Discussion in 'General ME/CFS Discussion' started by KateUK, Dec 27, 2013.

  1. taniaaust1

    taniaaust1

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    I know she has a severe issue with calorie intake but do not let that blind you to just how much dehydration (due to ME patients often having low blood volume) can be a serious issue for us too. You can not know that she will not get dehydrated cause she is drinking more then you do.

    I say this as this year, I had to be ambulanced to hospital for a collapse which turned out to be due to dehydration and I'd drunk 4-5 Litres that day! (that's double what a normal person drinks, I had not been vomiting nor did I have diarhea). Cause of my ME, my body doesnt hold onto its fluids well and my meds to help boost my blood volume wasnt doing a good enough job. I was so dehydrated that my kidneys had stopped working well.

    Kate cause she's bedridden is quite likely to have or develop POTS which is due to low blood volume, those who have POTS need to drink more then a normal person does. Kate and those who look after her, should always be on the look out for dehydration problems.

    Unfortunately there is a lot of serious ME complications which can occur which always have to be watched out for. It is extremely likely that kate already does have low blood volume.
     
  2. taniaaust1

    taniaaust1

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    Unfortunately if the doctors believe ME/CFS is a psych disease, it will be biased from the start! The worst the ME/CFS the worst the psych issue will be the thought going throu these ones heads and of cause those ones stop people from getting tests too.

    Anyway she can be put into a wheelchair and taken to another country to see a specialist who doesnt have to worry about the ME doctor witchhunt in your country (I know that would be unfamthomable but at this point may be the only way out of the mess and for her to start being treated right).

    I hate where this is all appearing to head and she may have little time now before they step in and hospitalise against her will and goodness knows what treatment she'll get!! (A few years ago, one dr who I saw for only 20 mins ONCE, who knew nothing on ME.. suggested "shock treatment" for me).

    The way Im seeing her situation is its a life or death situation and she NEEDS to be got to a good ME specialist who can give her IVs etc.

    Also consult a lawyer for power of guardianship to be handed to someone she trusts (which may make it a touch more harder for them to take her away and start making all her decisions). Once admitted to hospital as a psych patient, she can loose all her rights! Including the right for what medical treatments, doctors or hospitals she wants to choose.
     
    Last edited: Apr 13, 2014
    peggy-sue likes this.
  3. Countrygirl

    Countrygirl Senior Member

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    Tania's idea of setting up a power of attorney urgently that includes her health and social welfare is an excellent one. I have just been down this route myself and managed to prevent some detrimental treatments being forced on the patient. It is not cheap to instigate, but can be done without recourse to a solicitor if you take advice. I would strongly advise this is devised without delay in order to protect Katie from those doctors who could force dangerous management regimes on her.

    C.G.
     
    Last edited: Apr 13, 2014
  4. peggy-sue

    peggy-sue

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    In 2003, it cost £360 to get the welfare and money powers set up for me for my Dad. That was in Edinburgh, and with the lawyer coming to Dad's flat. It took about 10 minutes,
     
  5. Countrygirl

    Countrygirl Senior Member

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    It cost £700 for each of the two sections to be drawn up two years ago i.e. £1400. I think you can do it yourself on line though for a fraction of the cost and she won't need the financial section, just health and welfare

    C.G.
     
  6. peggy-sue

    peggy-sue

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    Lawyers don't seem too much affected by the recession do they? :mad:
     
  7. Nika

    Nika

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    Its only unfathomable for the moving reason. If she cannot even get out of bed without exertion, there's no way she can go through the process of moving countries. Not right now, anyway.

    In regards the the power of attorney, this is me speaking from memory so I might be wrong - but it was offered to her in the past, and she denied it. Katie is fiercely independent, and from what I can gather from being her friend, that would be giving up a part of 'her' that she's not willing to part with. I know that her well-being has to come first and perhaps it is an option to look into, but I can't say I blame her for being wary.

    Yes, its always a priority and something we are careful about every day. My concern at the moment is not her intake, rather how much she's retaining. Is there any way of calculating this?

    If hypovolemia/low blood volume are likely to be an issue here, what can I do to help her in the interim other than liquids? Should I give her salt? Electrolytes?
     
  8. Countrygirl

    Countrygirl Senior Member

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    Yes, Peggy-Sue isn't it a blessed relief that we don't have to lose sleep worrying how these poor souls will scrape a living:rolleyes:.
     
    peggy-sue likes this.
  9. peggy-sue

    peggy-sue

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    It worries me more that it means that recourse to the law, which is supposed to belong to us all and to protect us, is only available to the very wealthy, or the incredibly poor under certain circumstances, when legal aid steps in to pay the ridiculous fees. Closed shop union.
     
  10. Countrygirl

    Countrygirl Senior Member

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    Nika,

    A number of us with ME also develop diabetes insipidus whereby we pass unbelievably large quantities of dilute urine and we clearly cannot maintain our fluid level. It's a complete pain in the neck as one has to be within a few steps of the bathroom at all times. I suspect this is one of the reasons why our BP is so low. As an example, when I had this for many years my BP was in my boots, but it when it suddenly cleared up of its own accord I promptly developed dangerously high BP, accompanied by a number of stroke-like episodes which have left their mark, unfortunately. . Maybe Katie does not have this problem and other issues are at play which others here will explain.........I suspect.

    C.G.
     

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