Monday, May 30th 2011

Downtime

I’ve been in hospital for five days now hooked up continuously to an oxygen supply. Because it has been a bank holiday weekend staffing levels have been rather light so I’ve not seen much of the doctors. The hours have simply dragged by and these five days have been unbelievably boring for me. Being so heavily paralysed I am completely dependent on others for everything and all I can do is look around at my fellow patients with a degree of envy at how they are able to use their arms to read books, feed themselves, operate bed lights, call family from their mobiles etc. whilst all I could do was stare at the ceiling or the opposite wall. Even calling for help is difficult as my voice is so low that no one could hear me so they have rigged up a little brass bell that I try to kick with my foot. For the life of me I cannot understand why hospitals do not make provision for paralysed people to call for help. Everyone assumes we can all use our arms.

Since arriving I’ve been in a rather reflective mood. Last Wednesday’s experience has really shaken me up. I came very close to not being here and that is a chilling thought. Ever since I had MND I’ve been able to treat each physical loss as a disability which I would then use my mind to work out a solution for and then giving myself a pat on the back for my ingenuity. But now having felt the cold hand of fear resting on my shoulder last week I have been brutally brought back to facing up to the fact that time really is in limited supply now that a life critical system is under threat. At the moment I don’t mind admitting that I am quite frightened, especially at the thought that it may happen again. I only hope that after this we can put something in place in my home for emergencies. Suffocating is truly awful.

I’ve been trying NIV (non-invasive ventilation) for the past four days for short intervals. They connected me up to a BiPAP machine with a mask that covers both the nose and mouth. Unfortunately I don’t seem to be able to tolerate it very well (the longest session I managed was about an hour and a half). I find it very claustrophobic and nobody is able to understand what I am saying with the mask on which is worrying if I need it removed quickly (remember, I cannot pull it off my face myself). Every time I would open my mouth to say something air would rush in overpowering anything I would want to say. I also found that I could not ignore it and found myself concentrating all the time on my breathing which would defeat the object if it was left on overnight. On top of all this I found it very tiring. So for now it’s back to square one. I am aware however that there are different types of mask so it might be possible to try one that just covers the nose. Unfortunately though, they are not available from Basingstoke Hospital so it might mean a trip down to Southampton.

Mark

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One Response to Monday, May 30th 2011

  1. Danijela says:

    Mark, have you tried a nasal pillow mask? My partner tried six or sevel masks before settling for nasal pillows and now he is asleep within 5 minutes of putting it on. Also, you may wish to ask for ‘comfortable’ settings, rather than optimal – settings of your machine can make all the difference. Many PALS claim that they can not tolerate bipap but when settings are changed (often lowered) they get on with it much better. I hope you can give it another try, when relaxed and watching TV for example (during the day). All the best, Dani

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