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    Jan Q. help!

    Hi all , I am having trouble sleeping at moment and feel tired out very quickly when I do the smallest of chores, any suggestions with regards to possible medication. I am struggling in as much as I have deteriorated a lot in the last month mobility wise and now my speech going quickly,feel very down and as I live on my own and feel family don't realise that I am struggling so much as they don't see me trying to look after myself, I don't feel as though I can cope at moment. Sorry to have a moan I have been so independent until now and suddenly I am in need of some help. X JAN Q.

    #2
    Hi Jan Tiredness comes with the illness, I'm afraid. No one will appreciate the daily struggle. You need help. Maybe give something for the family to read on mnd . Speak to mnd connect and your social worker. Dude x

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      #3
      Thank you for your quick reply, it's good to speak to people who understand, I read blog every day for information and I have found it very useful, have tried to get family to read up on mnd but somehow I feel that they still don't fully understand what is happening to me. Will speak to mnd connect . X JAN Q.

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        #4
        Good Afternoon Jan,

        It must be difficult living on your own and I know what you mean about becoming tired after performing household chores, I'm finding most beyond me now. You could ask your GP to give you something to help you sleep, Zopiclone seems to work well and should help you through a difficult patch and you can always come on line here for company.

        John x

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          #5
          Hi Jan:

          If you don't sleep well than you will have problems during the day time.

          I listen to talking books during the night as it takes my mind off things.

          I also take Larasipan about every third night to relax me and help me sleep.

          I could not imagine what some of you go through living on your own.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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            #6
            Hi Jan,

            Sorry you're feeling low. It's really hard when you're losing the ability to do things you did automatically before. You grieve for what you lost.

            Sleep is so important, both mentally and physically. Do you know why you're not sleeping; pain, sleeping position, stress?

            Your OT can help with aids. Could a family member spend time with you to get a sense of how difficult your life is practically, let alone emotionally?

            Thinking of you,
            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #7
              Thanks Terry, I appreciate your reply very much it is comforting to speak to someone who understands, and think I will need to see my Dr for some help with my sleeping ,as for the last few nights I have hardly slept at all , very grateful, Jan Q.

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                #8
                Thank you John, I am grateful for your reply and will contact my Dr about something to help me sleep , xxx Jan Q.

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                  #9
                  Hi Ellie, so nice of you to reply and I would love one of my family to spend just enough time with me to see how I am struggling, funny isn't it when they visit it is not for very long so they only see me sitting comfortably and think I am ok. I think my sleeping may be because I am getting very worried now about my deterioration so possibly it is stress related, thanks for your support I really appreciate it. Xx Jan Q.

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                    #10
                    I don't do much now but just going out and trying to communicate exhausts me. When I was more active, I eventually learned I had to pace myself and allow time to recover. It must be tough to be on your own.

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                      #11
                      Hi Miranda. thanks for your reply, I can't do anything much now either just getting ready to go out is tiring, and do find that I have to rest for sometime after to recover, and certainly pacing myself has been necessary for sometime now. I have coped on my own until now but I am not coping very well at the moment. Will have to sort out some help at home very soon. Xx Jan Q.

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                        #12
                        Getting in help is a hugely positive step Jan, albeit an acknowledgment you need help , but it'll be enormously helpful to you and remove a bit of stress.
                        You can still be in charge & call the shots, that's important. I'm very stubborn and private, but quickly accepted help as it made me a more relaxed and nicer person (less grumpy ) The companionship could benefit you too.

                        It does get easier to cope, honestly.

                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                          #13
                          Thank you so much Ellie for your so very positive reply, I have tried to stay positive for the last 6 months but as I am deteriorating rapidly I have lost some of that positive thinking, I will definitely go further now and sort out some help and as you said it would be company too. X Love Jan Q.

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                            #14
                            Jan,

                            Not sure about your position. Are you still working? What family do you have ?
                            I wondered if you could go and stay with your family for a few days so they see your limitations. May make them realise where you are at how much support you need and will need as the illness progresses. You should be able to get support from your local social services and ought to have a contact there. The help will be means tested so if you have savings or an income you may have to meet some of the cost. Further down the line of your illness you may get continuing health care from the NHS. This is not means tested but as you are coping (with difficulty) it is unlikely that you will yet qualify for their support. Is there no one from your GP 's who is supporting you and helping find solutions for your problems as they arise. Similarly there are volunteers from your nearest mnda support group who could give practical advice on solving your problems.

                            John

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                              #15
                              John, thank you for your reply, I am. 74 years of age, I have two sons who have family of their own all hard working,so not really in position to accommodate me. I live in sheltered accommodation which is lovely and I have just started to get some private help with my domestic chores. I am not able now to do anything like the normal household chores. I was diagnosed in June this year after a year of looking at what was causing my problems. My worry is that in the last couple months I have deteriorated rapidly cannot stand or walk and because I am on my own will have to have more help at home, speech is failing now too. I just have to arrange more help now I think. That is my problem I have been widow for 11years and very independent it's difficult to accept but am grateful for the support and information from this site and all you lovely people who understand what is happening. Thank you , xxx Jan Q.

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