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    #1

    Bed hugging

    Hi,
    So today two friends came this morning for a chat and mince pies.After they left I felt very tired so had a lie down.Foggy, grey day so decided not to go out for a wheelchair push.
    Read paper, watched TV,etc and now back on the bed watching a film and husband joined me.
    Does anyone else have days when the bed seems the perfect place?

    To be honest as I am not mobile I have the choice of sitting in lounge, dining room,wheelchair….but it’s sitting all day.I do exercises in the morning and stretches in the afternoon.

    Oh well…Tomorrow I need a change of scene.

    Best wishes
    Maryx
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    #2
    I think the bed is very inviting and most days I have a nap....I'm always glad to go to bed in the evening & watch tv or read...usually before 9pm.
    To be honest I've always been quite happy with a Sunday duvet day..I've perfected the art of doing very little💗
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​
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      #3
      I don’t enjoy bed because of back and hips pain when I lie down. But codeine and paracetamol together take care of most of it xx
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.
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        #4
        LindaB
        Yes it’s cosy to watch TV in bed.My granddaughter came and hopped onto bed too for a chat earlier.Got Tonight’s TV sorted .Hubby happy to join me.
        Sleep well
        Mary x
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          #5
          Mary C sounds lovely🤗
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #6
            Hi Mary C .Enjoy your bed hugging day.

            I often have a duvet day with my book and the TV. I used to think it was giving in but now I think of it as recharging my batteries. Its great your granddaughter was able to join you.

            I've had a lovely but very busy day today so am planning a lazy day tomorrow xxx😘🤗
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              #7
              Yes I find bed is essential sometimes when very tired, enjoy! xx
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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                #8
                I’m trying not to give in going to bed during the day but I only sit in my chair until bed time which often makes me agitated sitting in the same position.
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                  #9
                  Bed is where I feel safe.
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx
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                    #10
                    I would love to be able to enjoy lying in bed but I can’t breathe well lying down or propped up. I get really anxious at bedtime. I find breathing easiest sitting bolt upright in my wheelchair but it is very tiring.
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.
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                      #11
                      Rosemary6NT that sounds so hard, do you sleep like that? Are you not on NIV? x
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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                        #12
                        Originally posted by Rosemary6NT View Post
                        I would love to be able to enjoy lying in bed but I can’t breathe well lying down or propped up. I get really anxious at bedtime. I find breathing easiest sitting bolt upright in my wheelchair but it is very tiring.

                        Sounds like NIV could help if you're agreeable to try? 😘
                        Last edited by LindaB; 27 December 2021, 12:26.
                        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                          #13
                          Heather R LindaB I don’t have NIV yet as my CO2 was ok last time it was measured. I don’t wake with headache even now. Having put off my last appointment just before Christmas my next appointment isn’t until Feb 9th but not sure I can wait that long. Some of the problem is postural I think, I’m more slumped over than I used to be. I hate being like this.
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #14
                            Yes horrid if you can't lie down and relax, I find NIV helps although my oxygen levels may not be too bad, Yes I hate how I stoop now with the muscles going in my neck, better to have it balanced on top when sitting, but not as restful as lying down. Have you reported your difficulty to the respiratory people? xx
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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                              #15
                              Rosemary6NT using NIV means I can sleep in bed with the usual 2 pillows. As Heather R says it's worth a chat with respiratory team asap. 👍🏻😘
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​
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