Announcement

Collapse
No announcement yet.

In Denial

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Lynne K
    replied
    Hi Panniertank. Thanks for the update. It’s great that you now have a wet-room conversation. I hope that your mum stays safe. You must be very worried since all the sad news from care homes. I also hope that your sister and brother-in-law recovers quickly.

    I’m glad that you have got help for shopping. I got priority with Asda and a weekly regular slot up to October. Sainsbury’s contacted me too offering me priority but I’d already sorted my priority with Asda. The Government has unusually ticked a box there. I wish that they could be as good getting enough PPE to where it’s needed and have much more testing.

    It is hard staying in and as you’re alone harder for you than it is for me. But I feel jealous every morning when Steve goes out for his (7 - 8am) stroll around the local woods. The recent sunny warm day was particularly difficult for me. We have a very small back garden space but we have to cross the upstairs flats approach to their garden space to get to ours. They filled their space with a trampoline months ago so when they were sitting out it was across the shared path. I couldn’t have got passed. I wouldn’t have wanted to either because of the noise being made. They had music blaring out, too loud and not our choice. I’m looking forward to warmer weather then if I get out for an hour or so I’d be happy.

    Stay safe, love Lynne x

    Leave a comment:


  • panniertank
    replied
    Hello Lynne.Yes, I am ok. My MND symptoms seem to be progressing slowly. I hate being stuck in my house all day ( even before coronavirus ), especially as Spring was one of my favourite times for country walking and going to steam galas. But I am just about maintaining my independence. I have been struggling to do my food shopping on line but my social worker has provided help and now a specialist care company will do my food shopping for me. Just before the CV lockdown the builders finished converting my garage to a wheelchair accessible wetroom. I received very concerning news yesterday. My totally paralysed brother in law has gone into hospital and has been diagnosed with coronavirus. My sister also feels Ill and has some of those symptoms so she probably has it as well. They both have relatively mild symptoms ( he is taking oxygen but he is not on a ventilator) so I hope they will be ok. I am also concerned for my mum who is in a care home.
    Thank you for asking about me . I hope you are ok. Take care.

    Leave a comment:


  • Madge
    replied
    Hello Hayls
    What a difference a day makes 🥶 my HSL chair I love as it enables me to get out of the chair on my own x my own bed is comfortable I love going to bed so I can stretch out but it’s not very good to get me up and out of bed x enjoy your furniture when it arrives x likewise if I find garden furniture I will let you know. Stay safe and stay young x

    Leave a comment:


  • Lynne K
    replied
    Hi Panniertank, not noticed you about lately until this thread. Is everything ok? Lynne x

    Leave a comment:


  • Hayls
    replied
    Hello Madge,
    glad to here your enjoying the garden, the Squirrels and pigeons have me entertained and the neighbours moggy is teased by them all, I get the giggles watching the drama lol
    Ooo HSL, I’ve finally been able to order mine and some of their adjustable beds, I’m waiting for delivery, I’m hoping that they are just as comfy as they were in the showroom, if not, I’ll be convinced their air con in store have more than cool air in them, I went from trying a chair (so much more comfy than my current one) and not only buying it and 2 adjustable beds, headboards, my current bed is so painful after a few hours, I think I’m holding on to a dream that HSL will solve the issue but oh well, I can dream
    As for age, all my family always said I was all grown up by age 10, I firm believer you can any age you want to be, I’m young at heart but much older in mind and my body, well don’t get me started lol
    Garden furniture is my next mission, hope you find an equivalent, if I do before you, I’ll definitely let you know,
    Enjoy the sunshine while we have it, all the best XxX

    Leave a comment:


  • Madge
    replied
    Hello Ellie

    It’s good to hear that I have support at the touch of a button because those on this forum are the ones that really understand what we go through x hopefully some sun will make me feel better.

    Stay safe
    Madge x

    Leave a comment:


  • Madge
    replied
    Hi Hayls
    Today I have made the effort and have moved from my comfy HSL chair to the garden bench chair. I am trying to find out if there is a HSL chair suitable for the garden but to no avail. Out of interest are you older or younger than me. I don’t have so many down days like I did in the early stages but I am certainly not accepting this.
    I hope you can enjoy some sunshine 🌞
    Stay safe
    Madge x

    Leave a comment:


  • Madge
    replied
    Hi Donkeyboy
    I am so sorry to hear of your struggles as I can imagine exercise is your life. We are told to exercise but is there too much exercise and when do you know when to stop. It’s devastating to read. I have read other messages on the forum and it amazes me how many people have done exercise and now have MND !!!
    I have cycled from London to Cambridge (60 miles) and the same distance from London to Southend-on-Sea and now I am lucky if I can do one minute on my exercise bike 😩
    I would be interested to know how you get on with acupuncture.
    Stay strong my friend.
    Love
    Madge

    Leave a comment:


  • Ellie
    replied
    Welcome to the Forum, Madge.

    You have come to the right place for empathy and understanding, for sure.

    Any one of us with an MND could have written your post - none of us ever envisaged our futures being as they now are.

    Everyone has good and bad days but hopefully many more good than bad and you've an audience here who can give you love and support on days when you need to rant and rave against the world!! Even when we're surrounded by family, we can feel alone with what we're going through.

    And don't ever feel bad about hating the hand you've been dealt - it's horrible - but with good support, both practical and emotional, you will get the most out of life.

    Stay safe.

    Love Ellie.

    Leave a comment:


  • Hayls
    replied
    Hello Madge, the sun is certainly shining today, I’m much the same as everyone else, I feel glued to a chair and my phone or TV are my only way to reach out and experience the world. The only good thing about this pandemic is that all my friend and old work colleagues have more time to get in touch and play games over the internet with me, I know technology isn’t everyone’s cup of tea but it’s made a huge difference to me and my family, I definitely know sitting next to an open window or at the back door makes me want to plan and gives me a reason to keep going, my hubby and Mum are provide my care, I know what you mean that you feel like you demanding but both have said to me ‘ if I needed help would you want to help me as much as you could? I nod repeatedly and they say ‘ let us help you’
    We all have days when it gets us down but we are here to help each other keep going
    Stay safe

    Leave a comment:


  • Donkeyboy
    replied
    I am 2ith you on this, i am in complete denial over my mnd. All my adult life i've been a firefighter in London, a powerlifter for GB keen sportsman in many ways. Yes my right arm is not far off useless and my left going but, im in good shape and still strong other than this! Im still squatting in the gym (only up to 100kgs) and dont intend to give up until i cant. I was due to cycle from john ogroats to lands end from the last week in may to raise money on the back of a personal challenge set. So, yes im in total denial, how the f..k me?
    I am taking 20+ supplements some 3 times a day, researching any little thing that could help, reading about reversals, on the mirocals trial. What more? Oh acupuncture is to be considered in next couple of weeks.
    I'm so with you Madge!!! X

    Leave a comment:


  • Doug Carpenter
    replied
    That's the spirit, Madge!

    Doug

    Leave a comment:


  • Madge
    replied
    Thanks PT. today is another day and the sun is shining.
    Take care
    Madge

    Leave a comment:


  • panniertank
    replied
    Hello again Madge,
    I understand how you feel. Like I said before , it is almost like MND is affecting you and me psychologically the same way. We both have the same thoughts and struggle to be positive. But you should consider it very positive and good for your dignity that you are taking part in a clinical trial. I hope you have better days coming up.
    Take care,
    PT

    Leave a comment:


  • Madge
    replied
    Hello Panniertank and Doug

    Thank you both for taking the time to respond. PT it breaks my heart as I know how difficult it must be for you to get ready in the morning as it’s the same for me. It’s very frustrating and my dignity is going. Do you get PiP ... I have just got mine (having been refused twice) but because of the CV I can’t have anyone in my house to help me with these tasks. Also I had been attending my local day hospice but no longer can because of the pandemic. They are very supportive and it enabled me to go out and meet other people. I am also taking part in a clinical trial and like you I so hope that a cure is found very quick. I am not having a good day today and it’s been a struggle. My husband and mum are a great help but I don’t feel I can keep asking for their help as I feel I am making too many demands and they have chores/activities of their own they want to do.

    Doug: I hear what you say but I find I can’t accept my lot and don’t know how to move forward as I never chose this route and never saw it coming. At the moment I can’t do anything other than use my phone/computer. I don’t have the get up and go that I used to have.

    I really do appreciate your thoughts and I know I am not alone. I do thank you so much but I find it hard to be positive these days. I want to do so much but I am just not able to.

    Happy Easter and stay safe and cyberhugs
    Madge

    Leave a comment:

Working...
X