The cruellest month

April has brought sleepless nights and total terror and desperation. Each night I have been waking with my heart racing and a dreadful feeling of breathlessness despite the Bipap and being propped up in my hospital bed and with an overwhelming need to get out of bed and sit up which of course I am unable to do by myself so I have to make moaning noises and hope gateth can hear me which he generally does.

Then the performance of getting me positioned correctly in bed starts again and you can imagine the strain of doing this 3 x a night has made us both ragged with tiredness and so I spent several nights sleeping on my chair.  however wearing my collar all night is hard and I never realised how heavy a head is- a stone apparently- until I had no neck muscles left. I am unable to lift my head myself and the pressure on my chin is unbearable at times. But my nurse who visits weekly has taken things in hand adjusting settings on Bipap suggesting stronger sleeping stuff and of course my family friends and carers have tried their best with my constant crying about living.

In this nightmare world, Today I remembered how on a Satueday we d go to the cinema about 4 walk down to the Tollgate in Turnpike Lane have a few drinks And then eat I liked lasagne or sausage and mash

Oh what I would give for one of those days again so ordinary at the time but so amazing and wonderful when I look back from where I am now. What was the last meal I ate? I wish I had known as then I would have savoured every Delicious mouthful and not worries about getting fat. This week I dreamt about eating toast Nd marmite oh how I crave food. So all of you out there remember to enjoy every sandwich as Warren Zevron once said.


7 thoughts on “The cruellest month

  1. Lindy, I am a prison visitor, and the prisoner I visited yesterday told me about the English teacher with MND who helped him learn to read as a child. At first, this “remedial teacher” as they were then called, was using crutches, but soon had to rely on a wheelchair, and as his condition worsened, my prisoner had to help him more and more in their one-to-one sessions. This was several decades ago, but the prisoner remembers him as one of the few people who helped him as an abused and rejected child.

    What do you think of Chris Woodhead’s comments on living with MND this week on Radio 4?

  2. feel so moved, Lindy, by you reminding us to appreciate how amazing and wonderful ordinary things like eating and drinking are. You’re right, of course … It’s so easy to take things for granted and/or always look forward to the next treat, pleasure, weekend instead of enjoying whatever it is we’re doing right now. I’ve been helping to judge the entries for the new (in its 3rd year now) Mayor’s award for writing competition in Enfield and thinking about the creative writing work we did together – you had such good ideas and inspired the pupils. Your writing continues to inspire – it’s so real, vivid and poignant. Thank you!

  3. Dear Lindy

    I also have MND ( bulbar onset) and I am a few months behind you. I want you to know that I have read every one of your blog posts and am amazed that you have managed to write them at all. Thank you! As for those night fears I absolutely sympathise. I have been saying some prayers for you to help you through the nights.

    I think about you every day and wish you some times of joy and peace, even within the bad times you are having now. I am sure there are hundreds of people out there gunning for you, because you have shared your troubles in this way and have touched hearts.

    With best wishes


  4. Hi Lindy, I read your book late last year and you have been in my thoughts. I’ve discovered your blog and although I know there’s nothing I can write that will make you feel better, I feel like I can’t leave without writing something. Your book was just bursting with honesty and passion. You are so right to remind us how lucky we (healthy people) are to be able to do the normal, everyday things we take for granted. Thanks for sharing your story – it has really touched me. Maddy x

  5. Thank you for reading my book and getting in touch bbest wishes

  6. Dear Lindy, a friend gave me your book and I just had to write to you. You write well and your descriptions are so vivid. I have loved your humour and openness. Your honesty has been humbling. Your wit has made me smile. When you have written of your sadness you have brought a tear to my eye. I feel privileged to have been able to read your book, thanks so very much for all your hard work in writing it. I am thinking of you. All best wishes, Carol x

  7. Hi Lindy. I have just read your book and I wanted you to know how much I enjoyed it. It is so refreshingly honest. I was diagnosed with MND over 3 years ago with mine starting in my legs. I can no longer walk and that coupled with the exhaustion of struggling from chair to wheelchair to toilet etc frequently reduces me to tears. However your ordeal sounds so much worse than mine and I feel ashamed for my self pity! I identify with so many of the emotions you wrote about. I have tried counsellors but no one understands what you are going through as much as a fellow sufferer. For that reason I will lend your book to as many people as possible. My friend has already downloaded it! Much more awareness is desperately needed. Thank you once again Lindy. I feel for you so much.

    Love Gill.