Sunday, June 12th 2011

Settling back in

Today has been my 11th full day back at the hospice. I’m pleased to say that some of the apprehension I was feeling when I first arrived has slowly dissipated. My breathing is still a big concern to me of course especially as I am reminded of it every single day. However it doesn’t preoccupy my thoughts to the same degree that it did a week ago. The memory of that frightful suffocating experience is fading away thankfully. Good job our minds have a built-in defence mechanism otherwise we would be forever tortured by harrowing experiences from our past.

I have been able to take advantage of the hospice’s wet room on several occasions so I can enjoy an exhilarating shower. How often I do it depends on what I wake up like. My positioning is still playing a key part in how easily I can breathe. The more upright I become the harder it is. I’m guessing this has something to do with all my weight bearing down on my diaphragm which is just about the only muscle keeping me breathing, a somewhat chilling thought. I did have a bit of a fright today in fact when I was left sitting upright for a few minutes too many and began to struggle to breathe. So it’s certainly seems like I have turned another corner and I am now resigned to the fact that I will spend a greater degree of my time in a semi-reclined position.

I’ve been trying some tablets lately to help me get some rest at night. Getting to sleep lately has been rather difficult so the doctor prescribed something which might help. Trouble is I now have the opposite problem because in the mornings I have a devil of a job waking up!

I had a meeting early in the week to discuss what happens next and would I like to go home? Good question. If I was literally at death’s door I would probably ask to stay here and spend my final days in the company of some wonderful people. However MND is a very unpredictable disease as I know full well from my own experiences. It’s true that my breathing is very weak but this situation could stabilise again and go on in a similar fashion for a few months if not longer. Therefore it is my intention to go home again. However before I can do that we need a mechanism in place so that if I should suffer another breathing episode there will be equipment and trained staff on hand to deal with it. And because of recent events it will mean a transition to 24/7 care for me. That of course equates to money and finding the right resources.

I’ve brought my Possum Primo environmental control system to the hospice as we discovered that it is capable of operating my wall mounted TV system. Now I can lay in bed at night and watch and control TV myself. Neat! It’s like a little bit of home from home.

The rest of the week has been a rather pleasant one. I’ve had three complimentary therapy sessions in which my shoulders, hands, and feet were subjected to a very enjoyable massage with sandalwood and Mandarin oil. I’ve had visits from my aunt and uncle as well as an old friend from work. Thanks Ted, your infectious laughter soon brought a smile to my face. Great seeing you again. The upbeat nature of the week has left me feeling a lot better in myself and more positive to. I’ve even been able to eat a little bit more than I have been lately. Clearly then feeling good is all about surrounding yourself with positive experiences and good people. It may not stave off the inevitable but it sure does make the time available that much more enjoyable.

With my friend Ted at St Michaels Hospice. 11th of June 2011. Photo courtesy of Suja

Mark

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3 Responses to Sunday, June 12th 2011

  1. val and jim says:

    hi mark just got up to date with your blog our pc has been in sims and chips for a repair . that must have been very scary for you but glad you are able to concentrate on more pleasurable things on offer at the hospice the massage sounds good .we have been away for a week to my sons dog sitting two king charles spaniels they are such good little dogs, we enjoyed taking them out for walks.roll on some more sunshine so you can spend some time in the garden, a lady i took for an appointment today said the gardens at the hospice were lovely.catch up soon Mark love Val and Jim

  2. Jan says:

    Hi Mark,
    Wanted to let you know that I think you are a true inspiration to mankind, your courage and determination is amazing. I do so hope you get the help and rescources that you need in order for you to return safely back to your own home. I so felt for you when I read about your frightening experience, I can only imagine how awfull that must feel.
    Best wishes and a hug. Jan (Bristol)

  3. Bill Spragg says:

    Hello Mark,
    I’ve just checked out your blog after a shamefully long absence. And guess what! there’s you and Ted smiling back at me. That took me back! What a good man that Ted is, I’m glad to see that of all your old Lilly colleagues he is keeping in close touch.
    I nearly became a neighbour last year. Vic and I were in the process of moving to Beggarwood, but it all fell through within 3 weeks of the move.
    So sorry to read about your breathing problems. I must say you make an amazing job of maintaining your journal. I lost the connection to it for long while but I’ve just hunted it down again. Just had to google your name and MND and follow the clues.
    All the best. Bill Spragg.

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