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    I am scared

    I am so scared, I am SP and live on my own, no carers or live in assistance. For the most part I can manage although I can no longer walk, can only transfer from one space to another. I rely on the use of a scooter, upstairs and down and a stairlift in between.

    Usually I manage okay however recently I have landed on the floor at least once a week for the past ... well since Friday the 13th (in September). Lately my leg seems to give out from under me which ends up with me saying hello to the floor yet again.

    I am slowly falling apart and have become afraid of my own body. I have often thought about planning my own exit because I can’t see any alternative however I am thoroughly convinced I would mess that up completely and end up even worse off.

    I live each day in fear of the next thing that will happen. I have had to call out the ambulance twice in two weeks and ask a friend to come over another time to help me up off the floor. The same thing seems to happen every year around this time, I get worse. I just don’t know what to do anymore.
    Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

    #2
    Originally posted by choco View Post
    I am so scared, I am SP and live on my own, no carers or live in assistance. For the most part I can manage although I can no longer walk, can only transfer from one space to another. I rely on the use of a scooter, upstairs and down and a stairlift in between.

    Usually I manage okay however recently I have landed on the floor at least once a week for the past ... well since Friday the 13th (in September). Lately my leg seems to give out from under me which ends up with me saying hello to the floor yet again.

    I am slowly falling apart and have become afraid of my own body. I have often thought about planning my own exit because I can’t see any alternative however I am thoroughly convinced I would mess that up completely and end up even worse off.

    I live each day in fear of the next thing that will happen. I have had to call out the ambulance twice in two weeks and ask a friend to come over another time to help me up off the floor. The same thing seems to happen every year around this time, I get worse. I just don’t know what to do anymore.
    Hi choco

    I'm sorry that you are living in such a state of fear due to falling, but it is certainly understandable.

    The thought of falling is one of my biggest fears also.

    I live alone too, and have progressive MS. I thank my lucky stars that I have 2 sisters and brothers-in-law who don't live too far away. They come to my aid when I get into 'predicaments', as we call them.

    The only way that I transfer safely is by using my walker to back-up to chair, toilet, etc. I have hemiparesis (my right side very weak) which makes other types of transfers awkward for me.

    I'm wondering a couple things.

    Does you health insurance cover for a home health care aide to come to your house?

    Could your doctor refer an occupational therapist to come to your home and evaluate whether there are better techniques that would help make your transfers safer, or whether physical therapy or exercises would help some?

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by KoKo View Post
      Hi choco
      Hello

      I'm wondering a couple things.

      Does you health insurance cover for a home health care aide to come to your house?

      Could your doctor refer an occupational therapist to come to your home and evaluate whether there are better techniques that would help make your transfers safer, or whether physical therapy or exercises would help some?

      Take Care
      Hi Koko And thank you very much for your reply. I live in the UK and unfortunately the NHS does not cover homecare. Besides I don’t need it except when I managed to say hello to the floor and then I just cannot get up. Otherwise I do everything on my own and quite frankly get annoyed when people want to do things for me LOL

      It’s just that every year without fail around this time, September November December, the same crap happens. It doesn’t matter because it is what it is. It’s just that I am losing bits and pieces of myself and I don’t know what to do. I don’t want to get morbid but where will it all end?
      Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

      Comment


        #4
        Originally posted by choco View Post
        I live in the UK and unfortunately the NHS does not cover homecare. Besides I don’t need it except when I managed to say hello to the floor and then I just cannot get up. Otherwise I do everything on my own and quite frankly get annoyed when people want to do things for me LOL
        I totally understand what you're saying, choco.

        Originally posted by choco View Post
        It’s just that I am losing bits and pieces of myself and I don’t know what to do. I don’t want to get morbid but where will it all end?
        Well, for now you mainly need to focus on finding ways to transfer safely. Is there a particular transfer that gives you the most trouble?

        For an example, getting off the toilet became very difficult for me, so I purchased a bedside commode, with armrests and adjustable height seat, which sits right over my existing toilet (bucket removed). The higher seat and armrests enables me to get up easier.

        Maybe there are ways to help make some of your transfers easier.

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Originally posted by KoKo View Post
          I totally understand what you're saying, choco.



          Well, for now you mainly need to focus on finding ways to transfer safely. Is there a particular transfer that gives you the most trouble?

          For an example, getting off the toilet became very difficult for me, so I purchased a bedside commode, with armrests and adjustable height seat, which sits right over my existing toilet (bucket removed). The higher seat and armrests enables me to get up easier.

          Maybe there are ways to help make some of your transfers easier.

          Take Care

          Hi koko

          Again thank you for your input 😊

          The only times that I need to transfer are from my Scooter to the (stairlift) chair and the chair next to my desk and toilet/bath. There are no devices that I can think of which would enable me to transfer to the (stairlift) chair.
          The the bath room and toilet is usually ok, it’s just that when my leg goes out on me I’m buggered LOL I’ve got ropes which help me to get in and out of bed (I’ve got a massively high for poster! LOL) and grab rails where I need them. Aside from putting a lift (elevator) in my house I don’t know how else to make things easier.

          I try very hard to focus on what there is rather than what there is not, what I’ve got rather than what I don’t have and what is good instead of what is bad. I’m always telling myself it could be worse and compared to what some people have to deal with my situation is a walk in the park. But every day is a struggle both physically and mentally and I am just tired / tired of worrying and waiting for the next episode. Sometimes I honestly believe I am cursed.
          Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

          Comment


            #6
            Originally posted by choco View Post
            The the bath room and toilet is usually ok, it’s just that when my leg goes out on me I’m buggered LOL
            Guess a new leg is out of the question.

            Originally posted by choco View Post
            I’ve got ropes which help me to get in and out of bed (I’ve got a massively high four poster! LOL) and grab rails where I need them.
            Good for you! I have to sleep in a lift recliner.

            Originally posted by choco View Post
            I try very hard to focus on what there is rather than what there is not, what I’ve got rather than what I don’t have and what is good instead of what is bad. I’m always telling myself it could be worse and compared to what some people have to deal with my situation is a walk in the park.
            All things considered, you manage to keep a pretty good attitude, choco.

            Originally posted by choco View Post
            But every day is a struggle both physically and mentally and I am just tired / tired of worrying and waiting for the next episode. Sometimes I honestly believe I am cursed.
            I hear you.

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Originally posted by choco View Post
              I live in the UK and unfortunately the NHS does not cover homecare.

              It’s just that every year without fail around this time, September November December, the same crap happens. It doesn’t matter because it is what it is. It’s just that I am losing bits and pieces of myself and I don’t know what to do. I don’t want to get morbid but where will it all end?
              Hi choco,

              I'm sorry to hear that things are getting a bit rough for you. NHS may not cover home care, but I checked out the MS Society of UK and came across this. https://www.mssociety.org.uk/care-an...ut-social-care

              "Social care is the support you can get outside of the Health Service (NHS). It's provided by your local council (or health and social care trust in Northern Ireland). It can include information and advice, equipment, someone to help you in your home, residential care and support for carers."

              Be sure to check out FIND 0UT MORE on the page.
              It sounds like you will need to contact your local council who do an assessment of your needs.

              I highly recommend reading through all of this!

              You might also want to join in on the MS Society of UK online community to speak with others who are closer to home and may have suggestions about your working through your health care system. https://www.mssociety.org.uk/

              Good luck with this, choco. Hope better days are on their way for you!
              Take good care.
              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator

              Comment


                #8
                Thinking about you.

                First off, I admire your strength and fortitude. You have successfully made it this far on your own. Secondly, I have experienced just a taste of what you have been dealing with. I've taken several spills recently and have finally relented to using my cane.

                I thought about you last night. I wanted to reply yesterday, but I was at work. You are in my prayers. Not sure about your insurance, but have you looked into hiring a home health nurse? Are you a church member or a member of any other organization? If so, perhaps some volunteers could help.

                I wish you all the luck in the world. I don't blame you for being scared. This disease is unpredictable. Keep posting. I know we aren't able to physically help, but we're here just to talk or vent.

                Comment


                  #9
                  Thank you koko 😊
                  Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

                  Comment


                    #10
                    That is very helpful Seasha, thank you 😊
                    Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

                    Comment


                      #11
                      Originally posted by kittysmith View Post
                      First off, I admire your strength and fortitude. You have successfully made it this far on your own. Secondly, I have experienced just a taste of what you have been dealing with. I've taken several spills recently and have finally relented to using my cane.

                      I thought about you last night. I wanted to reply yesterday, but I was at work. You are in my prayers. Not sure about your insurance, but have you looked into hiring a home health nurse? Are you a church member or a member of any other organization? If so, perhaps some volunteers could help.

                      I wish you all the luck in the world. I don't blame you for being scared. This disease is unpredictable. Keep posting. I know we aren't able to physically help, but we're here just to talk or vent.
                      You are very kind kittysmith, thank you. It seems that you are in the early stages of MS and the only advice I can offer is to use that cane if it helps avoid the spills. Risking a broken bone or injury is not worth it. Better stable than sorry LOL
                      Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

                      Comment


                        #12
                        This is not a help, but more of a "security blanket" in case of falling.

                        I have a button and you can speak through the button to the station's carers. My button also covers "fall alert" and if the system is jarred, someone will immediately speak to me through the bottom and asked if I've fallen. You don't need a home station, other than a charger station,

                        I have had similar buttons in the past from other companies, but they did not respond quickly and one never knew how long the response time would be, so we would cancel the service each time. I can't say which button I use, but I suspect there are more than one good service...we've just never found one so quick, and the sensitivity of the system is amazing. I do, on occasion, just place the button-down in an improper way and within seconds I am being asked if there is a problem. No charge for those mistakes they just need to know it was a mistake and then they recalibrate the system, no expense to me.

                        Like I said, it will not keep you from falling but make you more secure that you can get help if you are alone (oh, and it will also call someone for you, in fact it automatically calls your family and friends if you ask them to, when your button has been activated.)

                        Comment


                          #13
                          choco, My heart went out to you when I read your post. I can relate, I fall often but so far I can get up using a chair but it's not easy.

                          Living in fear is the worst for me. I am learning to give it to God.

                          Saying a prayer for you and I hope you can get the help you need.
                          God Bless Us All

                          Comment


                            #14
                            I also wonder about a "Fall Alert" button of some kind that will ensure that help is available in the event of a fall.
                            ~ Faith
                            MSWorld Volunteer -- Moderator since JUN2012
                            (now a Mimibug)

                            Symptoms began in JAN02
                            - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                            - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                            .

                            - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                            - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                            Comment


                              #15
                              Originally posted by rdmc View Post
                              This is not a help, but more of a "security blanket" in case of falling.

                              I have a button and you can speak through the button to the station's carers. My button also covers "fall alert" and if the system is jarred, someone will immediately speak to me through the bottom and asked if I've fallen. You don't need a home station, other than a charger station,

                              I have had similar buttons in the past from other companies, but they did not respond quickly and one never knew how long the response time would be, so we would cancel the service each time. I can't say which button I use, but I suspect there are more than one good service...we've just never found one so quick, and the sensitivity of the system is amazing. I do, on occasion, just place the button-down in an improper way and within seconds I am being asked if there is a problem. No charge for those mistakes they just need to know it was a mistake and then they recalibrate the system, no expense to me.

                              Like I said, it will not keep you from falling but make you more secure that you can get help if you are alone (oh, and it will also call someone for you, in fact it automatically calls your family and friends if you ask them to, when your button has been activated.)
                              Rdmc, Thank you for your suggestion. I would say this is something that I would do except for the fact that I always, and I do mean ALWAYS have my mobile phone with me. So there would never be a time that I could not call emergency services to get me up off the floor. I think I am their favourite customer! LOL
                              Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. ... Dr. Seuss

                              Comment

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