Things fall apart

4 days after my last entry the kitchen ceiling fell in due to a leaking toilet and I had ad several wakeful nights with a blocked nose and constant sneezing fits. A visit from the hospice physio and my outburst of sobbing led to my admission to my local hospice where I ended up spending 10 days. The first night was a disaster with nurses unfamiliar with my weak respiratory muscles not realising that lying on my back makes me breathless.  Hysterical thrashing from me resulted in me passing out with  a full blown panic attack. They ended up ringing gareth as I refused to get back into bed and they didn’t understand that I need to sit forward in order to type and obviously thought I w was trying to throw myself off a chair. The next day full apologies were given and each night after that they were very careful with positioning me in bed. However, for 10 days I barely walked and by the time I got home my legs had turned to jelly and instead of feeling glad to get  back I felt very insecure and vulnerable. Never in all my previous catastrophic imaginings had I  listed the walk to the toilet as one of my fears but now the effortt now needed h ad suddenly become  immense. In ten days my legs had become almost as feeble as my arms. Depression descended As I realised everything had changed again and I had gone down a few more steps on the motor neurone staircase. A hospital bed arrived filling our tiny bedroom and leaving g and scrappy sharing a tiny z bed. Two falls resulted in a very sore arm and after Xmas we waited for my new carer to arrive: someone who would be spending all day with me.

5 thoughts on “Things fall apart

  1. Lindy – your writing is always so vivid, poignant and witty. I love reading what you have to say and feel, at the same time, appreciative, sad and frustrated – wish I could do something – anything – to help. Being able to mend a ceiling would be a start …
    I think you need to be on the front page of the Saturday Guardian family section – if you wanted to be, of course … With love and warm thoughts, Penny x

  2. Lindy,

    One of Viv’s schoolfriends, Anil, pointed out the article published in the paper about you on our Woodhouse School reunion FB group. I was at school with Viv (Queenswell and Woodhouse) and remember going to your house in Ravensdale Ave on 1 or 2 occasions. There, I was fascinated by Viv’s sister (was it you or was it Karey? I don’t remember – sorry) who brought the strange notion of vegetarianism to light. What was imprinted on my young mind was the fact that someone would not even wear leather shoes, out of concern for an animal’s wellbeing. That thought has stayed with me.

    I would have read your book without the connection, but that brought back some fond memories of time and place. It made me laugh, cry and at times smile wryly to myself. It seems oddly masochistic in some ways to say I enjoyed it, as you are very adept at allowing us to share some of the emotional pain. The graphic description of your illness is a compelling read in a thirst to empathise and understand what you could be going through.

    Good luck in your continuing journey. And thank you for the insight.

    Gillian

  3. Dear Gillian
    It was sadly not me you remember but my younger sister Karey!! I don’t think I had such moral standards about meat eating! Glad you enjoyed my book
    Lindy xx

  4. I wondered! :)
    Have been talking about your book to anyone who will listen to me banging on. Thank you.

  5. I never knew Karey had been a vegetarian! But then I’ve only known her about 15 years. I’m learning a lot from this blog.

    Maybe your mobility will improve with physio and time Lindy, if it only deteriorated due to the staying in bed, rather than the disease itself. Your mind still seems sharp – both a blessing and a trial. The hospital bed must be an improvement at home, allowing you more control over your position in bed.

    I look forward to hearing all about your new carer.