1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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What Will Happen To M.E.?

Discussion in 'General ME/CFS Discussion' started by Karenironside, Apr 3, 2014.

  1. I have to say my desire for progress is nothing to do with being anti-social. More to do with my desire to get to the point where I can have a life even if it is in reality only a part time one. I'm aware that there is no guarantee this will happen but I believe this shouldn't meaning I shouldn't strive for it.
     
  2. stridor

    stridor Senior Member

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    @Karenironside
    When I read your blog I was struck by the fact that you still have this degree of investment from others - that in itself is pretty cool. My time as a 'shut-in' only dragging my ass to appointments and being reliant on others to drive, took a toll on my friendships. Not that I had that many to start with.

    I had personality changes with this illness as well. I was self-absorbed and only wanted to talk about certain health related topics. I am sure that people were muttering under their breath when they say me approach. There just aren't that many who think that mitochondria are conversation worthy :)

    I can hear the sadness...and ? self-rebuke in your blog? You seem to have become invested in this phase of your recovery - as much, if not more, than the people you worry about now (?) I am wondering how many serious set-backs you have had. I don't know what recovery means yet or who has achieved it - I am 80% some days and still whittling away at it. I still have bad days but have learned to roll with them. One thing that ME has taught me is how to cope with disappointment.

    Like you, I was a high energy person. My illness has two components. There is the ME with its PEM and there are the intertwined issues with my adrenals. I am not sure where you are at with this but the associated fatigue is immediate, incapacitating, associated with a drop in BP but does not produce PEM. At least in me.

    My wife is able to gauge how I am doing by my eyes. The colour, how they are focusing, whether the eyelids are drooping....I have learned to trust her predictions and it has saved me from self-harm. I can be a bit driven or so I have been told. brad
     
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  3. justy

    justy Senior Member

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    Hi again!

    my point is that for me 'life' IS and includes my illness and incapacity. I no longer imagine being able to work - ever again, or even strive for this. What I strive for is to live the best possible life that I can live WITH my illness.

    When I am able to go out and socialise or spend time at the beach or a museum with my kids is not what I see as life whilst the days and days at home pottering or resting is not life. It is ALL my life.

    Otherwise how would I get through each day, month or year.

    Another thing - I EMBRACED my wheelchair big time, and over time love it more and more. For many this may be seen as a sign of giving in, but for me it was a way to expand my experiences and interactions with others, without it I would still be unable to go on holiday with my family and spend all my time at home while my family goes out without me. Having kids makes this implausible and I consider myself very lucky to be well enough to use one occasionally and also to have a husband who has finally got his head round me using it and is a great pusher.

    I no longer care about the stares of others when I get in and out to walk up steps or to sit down in a café - It is other people who are embarrassed by this - not me.

    All the best
    Justy.
     
  4. alex3619

    alex3619 Senior Member

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    With progress being whatever someone else tells you it is?
     
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  5. adreno

    adreno 3% neanderthal

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    Turn on the news and listen. Everyone, businesses, governments and organizations are talking about moving forward, evolving and making progress. No one likes status quo. Therefore, if you are not contributing toward progress, you are antisocial.

    A recovering patient is a good patient. A non-recovering patient is a bad patient.
     
    Last edited: Jun 22, 2014
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  6. Today's Blog: Holidaying with M.E.
    Yes I'm being naughty and may regret it but I am doing it consciously.
    www.whatwillhappentome.net
     
  7. Today's Blog: A Man Shaped Print on a Wall

    A post I wrote in response to a request from Mesothelioma Cancer Alliance.

    Www.whatwillhappentome.net
     
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  8. Today's Blog: I've Got to Get Out of This Place: Holidaying with M.E.
    Do I regret it? No. Would I do it differently in the future? Yes!
    www.whatwillhappentome.net
     
  9. justy

    justy Senior Member

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    I imagine you will not care much for this suggestion, but I HAVE found a way around it - a wheelchair.

    It still means I am limited, as I am not able to even walk a mile, ore even a shorter distance regularly, but it has liberated my life in ways I could not have imagined. When only moderately affected I could go out every day nearly on holiday by making myself stay in my chair - it even meant I could swim in the sea once, because I didn't use my energy up on walking. We went round art galleries, towns and sat by the sea as often as possible.

    Recently I have relapsed back to a more severe level and could not actually go out at all without one - I even needed it in the garden to sit outside a short distance from the house.

    I wouldn't underestimate how much they can reduce PEM by not walking about upright. At times I wanted to walk and would get out and do so, but it meant we could range as far as we like, with no fear of terrible consequences, or fear of me getting stuck and worsening my condition.

    All the best
    Justy

    BTW you can borrow one for a few weeks or a month from the red cross to see how you get on with it, or if you want to pursue it further. I recommend a self propel, even if you do not want to self propel (which obviously uses energy) they are easier to manoeuvre, the small wheel ones are a nightmare to move around.
     
  10. AndyPandy

    AndyPandy Making the most of it

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    Completely agree with @justy about the benefits of a wheelchair. My passport to an expanded life.
     
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  11. I don't disagree with your suggestion at all. I guess I just don't feel I need a wheelchair. Sure I can't walk as far as I want but I can walk for 1.15 miles with a break midway. That isn't a lot but it seems more than one should be able to do if you use a wheelchair.

    This week I have started to use a walking stick to see if it helps me to go further with the same energy expenditure. At the moment, I don't know if it is helping are not. It definitely would help if I was having a bad day but then again on a bad day trying to go for a long walk is a bad thing.

    I do agree with your theory though 100%.
     
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  12. justy

    justy Senior Member

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    @Karenironside how often can you walk1.5 miles? every day? once a week? without PEM? If you can walk that far regularly then that's really great and you could probably get by without one. But for holidays they are amazing as it means you can go as many miles as you want. One could easily walk 1.5 mile around a big museum and then not be able to get back to the car park or hotel or whatever.

    If you can only walk that far without PEM once a week then you would benefit from a wheelchair for trips out. I can and do get out and walk as well whenever I feel up to it, which sometimes means I walk a lot and at other times not at all.

    Anyways, just an idea...
     
  13. Leopardtail

    Leopardtail Senior Member

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    I found it (melatonin) massively helpful too, but had to buy it in the USA..
     
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  14. Today's Blog: You Can't Be Serious?! Really?!


    Could one consultant appointment change everything about my illness?


    www.whatwillhappentome.net
     
  15. Valentijn

    Valentijn Activity Level: 3

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    One of the first things the physiotherapist had me do was try to breathe slower. It just made me feel 10x worse, like I was about to pass out.

    I don't doubt that ME patients often breath oddly, but there's probably an ongoing underlying cause, not simple hyperventilation.
     
    Last edited: Aug 11, 2014
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  16. Leopardtail

    Leopardtail Senior Member

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    I read your article on 'dysfunctional breathing syndrome' with great interest. I know 'air hunger' is a very common ME symptom, and I personally find my breathing it slightly heavy and laboured, (like I am breathing with a weak elastic band around my chest'. I also find it arduous to breath as deeply as I once did. When I tested by 'breaths per minute' it was 16 in my case so twice the normal rate and I still feel lack of oxygen, but any slower and I feel like I am wanting to gasp or air.

    It will be interesting to hear how you get on with your therapy.
     
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  17. Leopardtail

    Leopardtail Senior Member

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    the two obvious things that struck me were: low blood volume having between 25% and 50% depletion of blood volume means the oxygen in it needs to be recycled much faster; poor mitochondrial function may create higher need for oxygen due to less efficient energy generation. Both highly theoretical, but who knows one of them could be right.
     
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  18. I will let you know!
     
  19. Valentijn

    Valentijn Activity Level: 3

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    Sensible possibilities, I think. I often have oxygen saturation under 95% when my OI is acting up (low pulse pressure), and it certainly has a big impact on my heart rate. I wouldn't be surprised if faster breathing is just another coping mechanism for it.
     

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