Day 31- The Faces of Guillain Barre: Kelly's Story

Tuesday, May 31, 2016 0 Comments
Wednesday December 16th, 2015 started off like any other working day but by early afternoon, unbeknown to me, GBS symptoms started showing.  At lunchtime I noticed a little bit of weakness in my legs which I dismissed due to sitting on my chair awkwardly. Late afternoon I had a little bit of drop foot and at about 5:30pm my right arm felt a bit tingly when driving home.  I got home after a 30-minute drive, walked up 6 stairs to my front door and it was like I was fighting gravity.  By 6:30pm I could not, with the strength of both hands cut through a raw carrot when helping my husband cook dinner.

I basically put how I was feeling down to a bad cough I had been trying to get rid of for the past few weeks.  Put myself to bed early and when I woke in the morning, my legs were lacking in strength but could get myself around the house.  Before I could make my appointment with my local doctor, I was on the kitchen floor unable to get back on my feet.  My husband was at work and my 17-year-old son was sleeping... So I lay there banging on the back door calling out until I was heard.

I was able to crawl to a seat in the lounge room where I stayed as my husband was on his way back home.  He helped me back up to my feet, scooped me into his vehicle and off to the A&E we went.  The first doctor I saw suspected GuillainBarre Syndrome and referred me to the hospital where I was admitted.  I had never heard of it before and could never have imagined what was coming my way.

From there things started to go downhill fast. Within 2 days had paralysis from the neck down and I could no longer care for myself.  I started IVIG treatment on December 19th, 2015 and moved to HDU the next day as I required more care than the general ward could provide.  I remember my son seeing me in HDU.  I was hooked up to monitors and a feeding tube.  I could see the worry in his tear filled eyes - and me (still trying to be a strong mum) saying to him - "It's Ok, it’s not as bad as it looks". Every time I think of that moment, I laugh to myself because it was clearly that bad!

ICU December 20th, 2015

Overnight I was moved to ICU and there I stayed until Christmas Eve!  I only remember bits of my time there as I’m sure I slept a couple of those days away.  Energy levels were at zero!  For me that time in ICU was fast but for my husband and son it felt like time stood still.  

My lungs partially collapsed, requiring ventilation was touch and go but I was lucky enough to start showing signs of improvement and was back on the general ward in time for Christmas!  Christmas day was something different... My husband and son were in to see me first thing and the rest of my family came in throughout the day.  It was an exhausting day but I loved every minute of it!

Christmas Day 

Over the next week, I gained more strength my catheter came out, I exercised every day and I was able to bare my own weight.  With the help of a walking frame I was able to walk very short distances - I was free from my bed and it felt so good!  Every day I had something new to show my family that I could not do the day before.  Small things in everyday life that at this point, were massive for me.  

Life was looking good!  Another week of great gains followed and I was discharged from the hospital on January 1st, 2016 now able to walk short distances on my own unassisted.

I left the hospital with unrealistic expectations of myself and my recovery. Thinking that I would carry on making improvements as quick as the last two weeks and that I would be back to the old me in no time.  But that is not the case and It was hard coming to terms with that. I wanted to live life like everyone else and not feel like I was holding my family back. The fatigue is so crazy!  I have learnt my limits and am now more aware of what my body is telling me.

I am lucky enough to be able to work from home on part time hours while I carry on with my recovery.  I am exercising regularly and am now able to get out and see friends without it being so taxing.  I am still lacking in general muscle strength, have pulsing like pain in my calf muscles that comes and goes and fatigue to deal with but I know that I am lucky.  It could have been a lot worse.  I am thankful every day for how far I have come and for all the support from medical staff, family and friends I have received.

To my husband, my son, my parents, siblings, family and friends... There really are no words to express how grateful I am to you all for all the love, time and support you have given me over the last 5 months! X