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End of life, immobility.

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  • Gwynie
    replied
    Love and big gentle hugs to you all xxx

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  • Deb
    replied
    Thank you Gwynie for your lovely words . It sounds like you have alot going on in a short space of time you should feel proud of your positivity.

    Love and hugs to you,
    Debbie x

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  • Ellie
    replied
    Gwynie Isn't it funny what we consider as 'good news' these days 😊

    I moved to a bungalow and it makes life so less stressful for everybody, not just me.

    Good luck with your appointments and don't forget to make a note of any questions you need answering.

    Love Ellie.

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  • denise
    replied
    gwynie

    that a lot of lovely positive things i am so pleased for you.

    yes you are right. stay calm and peaceful. those are lovely words.

    love and hugs denise xxx

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  • Gwynie
    replied
    Aww, thanks everybody for your kind wishes.
    The power wheelchair will make such a difference to all of us. Matthew55, good luck with finding suitable accommodation.

    I have had a good day today.
    ​​​​​​I have received notification that I have been given enhanced PIP for daily living needs and for mobility needs. And they are now paying it weekly on a Monday.
    Also the lasting power of attorney has been done, the law says they can't register it for 4 weeks, so I will receive it by the end of July.
    Also the housing team have now put us on the list for a 2 bedroom property.
    I also have been referred for the peg, appointment is on the 19th July.
    Tomorrow is orthotics, as I have foot drop in both feet.
    Monday the respiratory physio is coming to set me up with a bi-pap.

    Hopefully we will all have a good week and weekend.

    Stay calm and peaceful, think mindfully about your words, thoughts and deeds. Only give out kindness and gratitude. Even when we are feeling frustrated or down. Changing your thought process will make this journey we are all on, so much easier for us, our loved ones and carers.
    xxx

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  • Heather R
    replied
    Hi Gwynie, really sympathise with your anxieties. Like you I think mindfulness is something I am going to try and concentrate on, with what I can actually do being constantly eroded, more appreciating being for me seems the best way forward. But fingers crossed for your move and powered wheelchair, and sending love and light to you x

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  • matthew55
    replied
    Gwynie I am so jelly! My very first ever manual wheelchair arrives today, and like so many others I waiting for my local council to find me suitable accommodation. Sending thoughts of Love and image.png Peace. πŸ˜πŸ˜˜πŸ˜πŸ€—xx

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  • Gwynie
    replied
    Thanks everyone.
    I think you are definitely right, that I will feel better when I have the powerchair.
    You have lifted my spirit.

    When we leave this life, we are going Home, it's the only way I can describe it.
    Sending you all gentle hugs, lots of love and light.

    Stay calm and be at peace.
    Blessings to you all. X

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  • Deb
    replied
    Hi Gwynie and thank you for your post, Mediation and mindfulness sounds like a good way forward and its great your daughter is an expert in head massage... send her round !🀣

    Looking ahead is so scary... I try really hard to take one day at a time because noone in life knows what tomorrow will bring but sometimes its hard not to be worried and scared.

    I think I am a little claustrophobic like you. When I was being diagnosed I found the most stressful tests were the MRI scans ... far worse than a lumbar punctar or EMGs because of the enclosed space. I hate lifts too ( i walked up 4 flights in labour to avoid a lift ) but I have learnt to cope with them and I close my eyes and zone out with my headphones and some good 🎢

    I hope you get a house suitable for you and a powerchair soon because it puts you more in control..I use a powerchair full time but I still hate being pushed eg in my shower wheelchair because of the lack of independence.

    it sounds like you have a great, supportive family and a really proactive attitude.
    Take Care of yourself,
    Love Debbie x

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  • LindaB
    replied
    Gwynie thank you for sharing your thoughts. I've found the forum members are always ready to offer sound advice. As they have.πŸ™
    I was thinking about Reiki for myself and so I'm pleased to hear you recommend. I need to find a local practitioner.
    Sounds like you've been very organised...which is great.
    Nice to meet you....virtuallyπŸ’πŸ’πŸ’

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  • Lynne K
    replied
    I hope the you have a light welcome wheelchair already Gwynie, to tide you over until you can get a powered wheelchair. I see that your questions have already been answered. Love Lynne x

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  • Ellie
    replied
    Gwynie Being in control of your own wheelchair, i.e. the powerchair, should make you feel better, less fearful, than being pushed along by somebody else.

    I hope you get good news on your bungalow soon.

    You sound like a lovely calm and spiritual lady, with fantastic family support - thanks for sharing.

    Love Ellie.

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  • Gwynie
    replied
    Thank you Mary C, Ellie, Matthew55 and EvelynMW.

    We are trying to move into a bungalow, through our local council.
    My partner Eddie has given up his life long career to look after me, and my daughter Hannah has left a job she loves to care for me 3 times a week, to give Eddie a break. He does a lot of volunteering, so he can escape for a little while.

    I have been referred for an electric powered indoor outdoor wheelchair, but they won't start the process until we move, as we currently live in a coach house, flat over garages.

    So much seems to be on hold, until we move.

    I feel nervous in a wheelchair, I was thrown out of one, my fault for not wearing a seat belt and my partners for not seeing the gully, we do laugh about it now. But otherwise I feel fine in it. (I have a fear of falling too, that goes back to my childhood) and I have had quite a few falls.

    I already have a funeral plan, all paid for. Plus a small insurance to cover all the extra costs. I will be cremated, I am not scared of dying, I strongly believe in life after death, I have had a few experiences.

    The lasting power of attorney is in the process of being finished with Gov.Co.Uk.
    I already have a will.

    I have a few other documents in process too.

    I have always been independent and very organised. Being like this means I can start to make lovely memories instead of thinking I have a list of things to do.

    My only worry is for my loved ones and as I stated above.

    I used to be an holistic therapist, I have tried talking therapies, I didn't find them to be helpful. So I will stick with Meditation and Mindfulness, and my daughter Hannah's fantastic Indian head massage and our shared love of Reiki.

    Sending you and everyone who reads this thread, peaceful lives and a gentle end of life.

    ​​​​​​​Gwynie x

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  • EvelynMW
    replied
    Difficult to know whether you are living alone, or with family/carers. i know that, long before i was diagnosed, i decided i couldn't agree with being buried. I know it might involvee a sort of coffin, but crmation is the way both my husnabd and i have decided to go. We may well arrange it as oon as we have moved to our final home. We aim this to be within the next 2 years.

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  • matthew55
    replied
    Since taking Prozac I don't cry from high emotions or get frustrated. I can't tell you how much it has helped me. Mine is called Fluoxetine.

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