Viewing 6 posts - 1 through 6 (of 6 total)
  • #75046

    Hi all

    As you may know I’m now progressing and coming to terms with the changes that are likely to follow. Since March I have been going downwards much more noticeably with increased daytime use of my BIPAP (Resp team are ok about it within reason), exhaustion, muscle pain that doesn’t respond to painkillers so is now stopping me sleeping and weakness on doing minimal activities. I’m trying to keep working through this but now looking at altered working conditions to making things easier. Emotionally I think I’m ok!

    Wondering how you all have come to terms to your worsening situation and what changes you made to make it easier. I’m going back to see Neuro earlier than planned to discuss.

    Thank you


    Posts: 267
    Joined: 17/08/2011
    Re: Changes

    Sorry our miracle has all these problems.

    Yes, I agree with all this, sadly it is all so depressingly familiar to me too. All comes under
    the heading of progression but does not help us get through it.

    Simple answer – Pace Yourself. Change things to make better use of your energy and diminishing

    Pain and weakness on minimal activity sums it up well.

    You mention work. Have you had them sort out your home as well? Each of the last three years the Regional advisors have sent
    in the care agency “Care Plus” and given me new aids and ways of doing things. Suddenly I am grabbing on for dear
    life on the bed leaver, the toilet frame, the seated shower and the 21 safety grab rails mean there is hardly
    an inch of my home that I am unsupported. The voice door entry system I thought was a luxury is a joyful necessity. I
    even have a seat in front of kitchen and bathroom sinks. These people know their stuff.

    Keep thinking yourself, anything you can do to pace yourself or save energy. I do deep breathing exercises to get
    more effective oxygen intake and preserve the CPAP daytime option.

    Every step in the right direction !

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    Posts: 4,630
    Joined: 27/09/2010
    Re: Changes

    I think I didnt really accept my disability till the powerchair was introduced at work and my outside wheelchair lift at home. even though I used a helper pushed manual chair, a powerscooter and the inside stairlift I think I squashed the idea of being disabled in a box and shut the lid. changes happened to me so gradually over the years till I had a fall and things went down hill rapidly.

    My biggest obstacle now is “funding” I have stood up and acknowledged my condition but things could be so much easier if I got the right help quicker and with out having to jump thru hoops. I think that’s where TalkMD has been of great benefit as reading about and talking to youz all has given me lots of support and encouragement and a source of info when the medicos couldn’t.

    I think there is still a inbuilt feeling of shame by being disabled or having a condition, it is a feeling I am trying to work on. but it does depress me when I need to buy a new aid. I need a new bed but cant go out and buy a pretty metal one with glass knob, I need to pay an arm and a leg for a “adapted” or “specialist” bed.

    I find I am always having to explain my condition which feels like apologizing for it. people think they can ask what they like. my stomach sinks when the given the line” you dont mind me asking” I have often been put on the spot and asked very personal things in very public places and I appear rude if I change the subject or decline.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Posts: 1,002
    Joined: 20/09/2010
    Re: Changes

    I’ve found that I can accept changes only when I’m ready to – that normally means quite some time after I should have. I’m thinking here of my first wheelchair, the stairlift and the through floor lift. By the time I got them, I was grateful for them because they made life easier, less tiring on my body, and saved my strength. I have to say though, that when I got the wheelchair, I hated to be seen in it. That was about 30 years ago and I’m a different person now. I don’t care what other people may think of me – everyone is different. Everyone has their own problems, be they physical, mental, emotional or otherwise. Just because I use a wheelchair makes me no less of a person than anyone else. Just wish I’d come to that conclusion many years ago!

    Sybylla 8-)

    Posts: 383
    Joined: 07/02/2012
    Re: Changes

    I know they’re difficult times, and everyone has to handle them in their own way. I’ve struggled with changes very badly at times.

    But the one piece of advice I would give is to plan ahead as much as you can. Try to stay at least one step ahead of the changes you’re likely to face. You tend to make far better decisions when you’re not dealing with a crisis caused by suddenly being unable to do something that affects your day-to-day life. Much as it’s sometimes hard to look into a future that may be difficult to face, then planning for it will help ease the transitions you may need to make. Good luck!

    Posts: 564
    Joined: 24/01/2011
    Re: Changes

    I didnt think change frigthened me but now wondering what life will be like further done the line. I am definitely getting weaker. Trying to get early review appt with my Neuro to discuss my noticeable decline in recent months. I am reluctant to allow the OT into my home at this stage. I will update in another post the outcome of my Occ Health assessment. I guess I know things need to change if I am to manage better but see the change as MD winning and me not! I have learned to pace myself much better this year.

    Thanks all for keeping sane whilst going through this crap


    Posts: 267
    Joined: 17/08/2011
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