Intensive Care and the road to recovery – my continnuing journey back from GBS

To say that intensive care was intense would be an understatement really, what with all the machines monitoring everything that is going on and the number of staff around and the continuous unfolding drama of the different kinds of care that those of us in ICU needed all made up for a confronting at times and intense 9 days for me.

I suppose on reflection the real difficulty for me was that unlike many other patients in ICU I was totally aware 24 hours a day what was going on and could hear, see and take in all of my surroundings.  I started in a private room but just for a couple of days and was then moved onto the main floor with about 10 other ICU patients.  I found myself really withdrawing into my self as a coping mechanism with all that was going on and also with the inability for the first few days to talk because of the tracheostomy I just became more and more insular. 

And it was not just hard for me it was a really tough time for my partner and family who all found it so difficult to understand what I wanted as I could not move very much at this time as I had very limited movement in my hands because of the GBS and so found it difficult to write out anythings that I wanted.  At this stage of course I was not eating but being fed by nasal gastric tube directly into my stomach and it was at this stage that I started to get a spastic colon and my bowel blew up as that area of my body had also become paralysed (the only way I can think of to describe it) and so I had not been moving my bowels at all and everything was just building up.  I had a catheter inserted to deal with my urine, which also had stopped letting me know when I needed to pee, up on he ward before I moved to ICU, after having to have a number of ultrasounds to see how much urine I was retaining and having a few singular catheter insertions to remove the urine before I went to ICU it was decided the best thing to do was to do a catheter that would be more permanent until all the waterworks began to work again of their own volition.

So back to ICU and the stomach that looked like I was 8 months pregnant and what followed was laxatives, suppositories, enemas, all to no avail and the tummy just sat there with the bowel refusing to work.  It was uncomfortable but in the scheme of what I was going through it was bearable.

Around me the machines continued to beep the staff continued to be the most amazing, caring and considerate people who were just wonderful throughout this whole time. I cannot say enough about the hard work and dedication of the nurses who were always there with a smile and the ability to keep me feeling okay about where I was and what was happening.

After a week of having the tracheostomy put in the team what was looking after me decided that it was time to try to put the voice disc on and see if I was able to talk.  Hallelujah I sure was and it was so nice to be able to finally express what I was feeling and to talk to my beloved, my family and those gorgeous people who were visiting me on a constant basis – all of them made this time much easier to handle, even if at times I was withdrawn and in my own world.

I had re found meditation in a big way at this time and visualisation as well.  These 2 things were instrumental in keeping me focussed on staying positive about what was going on and allowing me to see an end to all this, but to be completely honest some of that time in ICU was the darkest of this time in hospital and there was a moment when I really did doubt myself and whether there was a future or not but that was fleeting and I quickly refocussed all my energy on remaining positive and on getting well.

And after 9 days of ICU I was ready to head back to the ward for the next lot of treatment and also the road to recovery but there was one more hiccup to deal with before that could happen…

Next post will deal with that and more!

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