Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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My blog on Severe ME care endgame

Discussion in 'General ME/CFS Discussion' started by Wolfiness, Aug 25, 2017.

  1. Wolfiness

    Wolfiness Activity Level 0

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    Last edited: Aug 26, 2017
    Barry53, Joh, slysaint and 24 others like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Wolfiness

    I read the blog. It's one of those times when saying something in response is difficult. What is there to say. I hear you. I acknowledge your pain and your situation. I have nothing to offer and I experience the same if not as critically as you do. I feel horror for you and will will cleanly admit that your situation wakens terror for me that my future might follow the same tack.

    I am extremely sorry to hear that it has become so bad for you. We so very much need and deserve better care and understanding.
    We can only hope that it comes soon enough. It is already too late for some.
     
  3. Wonko

    Wonko Senior Member

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    The other side.
    I can't say it better, I've tried, and it wasn't
     
  4. Wolfiness

    Wolfiness Activity Level 0

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    Tx guys. Me too Snowdrop - as yet I’m only on the border between bad and horror…
     
    Jennifer J, TreePerson, Hutan and 5 others like this.
  5. AndyPR

    AndyPR Senior Member

    @Wolfiness I'm so sorry that I can't do more than say I'm sorry.
     
  6. Jesse2233

    Jesse2233 Senior Member

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    @Wolfiness so very sorry to hear about your situation.

    I'm not a doctor but is there anyway you can ask about a course of plasmapheresis with immunoadsorbtion? I have no idea whether or not this would help your particular situation, or if anyone would offer it to you, but I know it is used with some success in very severe autoimmune illness (if that is in fact what you have).

    Forgive me if this is inappropriate or impractical, my impulse is to offer some sort of practical advice or solution.

    Otherwise I will be keeping you in my thoughts, and hoping that you can hang on until there are better treatment options.
     
    Wolfiness, AndyPR and ghosalb like this.
  7. Wolfiness

    Wolfiness Activity Level 0

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    Tx but I don't have a doctor…
     
    Joh and Countrygirl like this.
  8. AndyPandy

    AndyPandy Making the most of it

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    Wolfiness and AndyPR like this.
  9. Jesse2233

    Jesse2233 Senior Member

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    @Wolfiness

    I'm very sorry to hear that.

    If it were me I would write a post-it saying "Severe auto-immune condition, paralyzed, need plasmapheresis ASAP", stick the note to my chest, call an ambulance, and hope that a doctor took at the hospital took the note seriously.

    Of course that's easy for me to say, I don't know the details of your situation or your health care system and it's hard to fathom what you're going through, so please disregard this if it's not appropriate, feasible, or helpful.
     
    pattismith likes this.
  10. Countrygirl

    Countrygirl Senior Member

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    @Wolfiness

    I have only just found your post. and I want to say I think it is a brilliant piece of writing. It moved me to tears. I think it should be read by everyone, carer and doctor, as you express the horrific situation so beautifully. It should certainly be included in any doctors' pack on ME.

    What can I say? My heart goes out to you! You are right, of course, there is nothing in place to help people with severe ME, and ordinary mortals cannot relate to such suffering because nothing can prepare them for the horrors that are ME. We need a care home specially dedicated to severe ME as no other illness requires the same level and type of care as the symptoms, I think I am right in saying, are unique to this seemingly bizarre disease.

    I hope this writing, which must have cost you dear, goes far and wide.

    I shall certainly print if off if that is okay with you.

    Thank you for writing it.

    Very impressed with your skills. :hug::thumbsup:
     
  11. Wolfiness

    Wolfiness Activity Level 0

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