Sunday, July 31st 2011

Feeling exhausted

Things have not been going too well for me these past few weeks and I’ve spent most of that time confined to bed thanks to my weakening breathing muscles which are really starting to dictate what I can and cannot do. Consequently they’ve been making life a little bit miserable lately. I’ve only got to be a few degrees out of my ‘sweet spot’ and I am gasping for air and unable to talk. To make matters worse I developed a bit of a rattle on my chest last week which culminated in a late-night visit from the doctor who prescribed some antibiotics which I am still working my way through.

The hot weather we’ve been enjoying lately has brought with it further difficulties for me making life distinctly unpleasant. The high temperatures have made breathing even more difficult and tiring and I’ve been going to sleep with an oscillating fan by my bedside not only to help me to keep cool but also in some way hoping it will assist with my breathing. My appetite has been fluctuating wildly. Some days I can do no more than sip on a few ensure high calorie drinks whilst on others I can be coaxed into eating some solid food. But walking hand-in-hand with my poor appetite are the feelings of nausea which make me feel even worse. Fortunately I have some tablets to help combat it.

To help alleviate the positional problems I’ve been facing when taking a shower, Caroline, one of my OT’s has made arrangements for a different model to be delivered, one which allows the chair to be reclined a lot further. It’s not perfect but at least I can breathe a little easier whilst being washed and that at least removes some of the anxiety. It was getting to the stage where I was becoming nervous about leaving the bed to take a shower!

Apart from this everything else is running okay although boredom is starting to set in due to lack of stimulation. The new night care is working out well and my lovely new mattress really makes laying in one position for a long period of time bearable. Just as well really as my world at the moment seems confined to 6ft x 3ft.

Mark

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6 Responses to Sunday, July 31st 2011

  1. Hi Mark, good to hear about your new shower chair. Hang in there, I am sure you will find something soon to stimulate your mind. Dani

  2. ida says:

    Looking in every day to see how you are doing. Guess you don’t have time to post … but I’m still waiting.
    Take care
    Ida

  3. Charlotte says:

    As an OT I really appreciate your honest comments throughout, they’re an inspiration. Thank you 🙂

  4. Kim Saunders says:

    HI Mark,

    Sorry this is so late in the day but I have been with my mum all day in Southampton and have just got back. I just wanted to wish you a Happy Birthday – not sure if it has been truly happy for you though as life seems quite miserable for you now, especially if you are confined to your bed. I still log on to read how you are getting on. Thinking of you.
    Kim x

  5. Hayley B says:

    Hi Mark
    I have never commented before but I have been reading your blog for a long time now. My mother in law suffered from the bulbar form of MND and she passed away just before Christmas. I used to tell her about things you wrote in your blog and I think it used to bring her comfort to know that there were other people feeling the same as her and experiencing the same issues. I really hope you are OK, I have been checking back every day to see if you have posted. Hope you are a bit more comfy now and have found some ways to entertain yourself, I can only imagine how frustrated your must be getting.
    Take care of yourself
    Hayley
    xx

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