In Denial

[Madge]

Hi I just feel the need to put pen to paper .... I was diagnosed with MND in 2017 after being tested for about 18 months to find out what was wrong with me, I was having trouble to climb stairs and walking. I find my journey difficult to accept as I have always been fit and healthy.... why me. I can no longer do the things I love .... for example walking, driving, swimming, pilates and gym let alone trying to wash and dress myself. These are things I took for granted and now all I can do is sit and watch tv, I can’t even cook and clean the house anymore. Everything is such hard work and exhausting for me. I had a good job in London but can no longer travel or do my job. I have weakness in my arms, legs and stomach. I know I am not alone in this but I just find it all so difficult to accept when I had a busy life ....., I want to be me again !! The way for me to get out is on a motorised scooter... which isn’t how I planned my next chapter in life. I am 58 and struggle everyday. I have family and friends but to go to restaurants etc is very difficult for me to get out of chairs and using the bathroom. I feel so angry at times and sad.
Thanks for reading my story 😓 all the very best
Madge

[panniertank]

Hello Madge. Gosh, nearly everything you wrote applies to me as well. I can't do any of the things I loved doing:- country walking , steam railways and steam museums , real ale pubs, driving. I also loved taking my mum out of her care home for a day out to give her some quality of life. Now I am stuck in my house all day ( even before coronavirus pandemic ) and I find nearly everything difficult to do. It takes me nearly 3 hours to have my breakfast, shower and get dressed. The only things I find conventional are using my iPad and laptop and watching television. At least you have a motorised scooter. I don't have one yet. So, like you , I feel it all so difficult to accept and wish I could be me again, especially as I had to look after myself due to my spinal rheumatic condition. I bet there are lots of people with serious health conditions who feel like we do . But it has helped me a bit reading your thoughts and knowing I am not alone with those type of thoughts. So I hope this helps you a bit as well. And my denial often hopes there will be a cure for MND soon or I will be one of those very rare people who goes into remission. So, take care and happy Easter .

[Doug Carpenter]

Oh Madge!

Firstly: Welcome! And thank you for posting your very understandable worries and anger.

It may not offer much comfort, but you are not alone. Everyone diagnosed with MND has had similar thoughts at some stage.

There is no helpful answer, of course, to “Why me?” anymore than there is to that question asked by a cancer or heart attack patient. It’s the fall of the dice life threw for us.

There is however a lot of good psychological research and practice – not just amongst MND sufferers, but across much wider cohorts of people with seriously life limiting conditions – which shows that accepting one’s situation and moving forward, concentrating on what one can do rather than what one can’t, is hugely beneficial.

And what may be of no comfort whatsoever is this socially distanced, completely sterile cyberhug, but I’m sending anyway!

Hugs

Doug

[Shaun]

Dear Madge, we are all with you, you are not alone, and soon you will be able to get out on your scooter causing mayhem in your local high street, running over small children and their mother's as they hog the paths on their scooters.
Best wishes Shaun

[Madge]

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

[panniertank]

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

[Madge]

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

[Doug Carpenter]

That's the spirit, Madge!

Doug

[Donkeyboy]

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

[Hayls]

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

[Ellie]

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.

[Madge]

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

[Madge]

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

[Madge]

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

[Hayls]

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