Life after Guillain Barre Syndrome ….. Being Mooned at by the Man in the Pink Shorts!

Hallucinations….. A word I used to associate with a group of Ravers or Hippies! Well, now I would add ICU patients to that list! After mentioning hallucinations in my first post a friend asked me to elaborate more on the subject, which I’m more than happy to do.

The worst thing about hallucinations are that when you’ve suffered from them, despite people telling you those things never happened, and you knowing they didn’t, it’s really hard to separate the fact and fiction, because in your head they are real. It’s a bit like me telling you that you didn’t really have that sandwich for lunch yesterday, and you knowing you definitely did. My memories are as real as that sandwich, yet I know it didn’t really happen. I’m really hoping this is making sense on some level and I’m not talking a load of nonsense!

I suffered so many hallucinations in ICU I could start a whole blog on that subject alone! For many weeks I believed ICU was a glass building and it was only when I “sobered” up I realised it was in fact a dark, brick building.

The day I had my tracheostomy inserted I was taken by wheelchair to a conservatory to have the surgery. When I woke up the sun was shining through on to my bed, and there were lovely green plants everywhere. When I later asked my parents where this conservatory had been they advised me I never even left my bed space. The curtains had been drawn around, and the operation undertaken without me going anywhere.

I also remember thinking how “nice” it was of ICU to put pictures of famous dead people on the ceiling for the patients to look at. Why I thought that was nice is beyond me! But the only thing on the ceiling were ceiling tiles and lights, yet I spent days looking at those pictures!

The hallucination that will probably stick with me the longest took place whilst I was moved from Neuro intensive care to General intensive care for a few nights. One evening I was being given a bed bath by the nurses. I was on my side looking out of the window and there was a group of young men outside, one of them was wearing pink shorts, despite it being winter. They were laughing at me and one of them started filming me on their mobile phone. The man in the pink shirts then turned around and mooned at me. They were all laughing hysterically. I couldn’t alert the nurses to this as I couldn’t speak or move. ( I was a prisoner in my own body ) I spent all night worrying I would end up on YouTube or Facebook. However, as you’ve probably guessed it never happened. I was on the first floor and there wasn’t even a window!

I still, now, often lay in bed at night wondering what was real and what wasn’t during those first months. It helped to visit Neuro ICU a few months ago, and to see things with a clear head. I plan to do the same with General ICU when I go to the hospital for a check up in December. Hopefully then I can put the memory of the man in the pink shorts to rest!

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Life after Guillain-Barre Syndrome ….. The Stick is Bigger than Me!

“The stick is bigger than me” …. That’s how I feel when I walk into a coffee shop using a walking stick. I’m so self conscious of it, it feels as though it’s massive, at least six foot tall and has a personality of it’s own that gets noticed more than me! Having the stick, however, means that I was lucky enough to have got a parking space close to the entrance. If that hadn’t happened then I’d be in my wheelchair. At that point I become “invisible” I’m no longer Andie, I’m the disabled woman in a wheelchair. No matter how long I spent doing my makeup or how much my new top cost me, my identity is lost.

It’s not all doom and gloom though. I am overall very happy and appreciate being alive and well enough to even be out for a cuppa. It’s more an adjustment period whilst I get used to my new life. Not long over a year ago I was physically fine and enjoying a “normal” life. That was until September 2013 when I caught a tummy bug. Instead of just fighting the bug my body decided to start attacking itself and destroyed my nervous system. As if there aren’t enough things out there to get you, without your own body becoming an enemy!

To cut a very long story short I was diagnosed with Guillain-BarrĂ© syndrome, a very rare and life threatening auto immune disease. I became paralysed from chin to toe and spent three months ventilated in Neuro Intensive Care. I could only communicate via a letter board and the only noise I could make was a clicking sound on the roof of my mouth. I couldn’t move AT ALL. I was incontinent, catheterised, fed through a tube and had so many needles in me that my veins are now “limp” and refuse to even allow me a routine blood test! I can hardly blame them!

After three long months, two bouts of pneumonia and several bizarre hallucinations, (Which still play havoc with my brain!) I finally left ICU and had a short stay on a normal Neuro ward before progressing to the “Boot camp” that is Neuro Rehab! After lots of tears and tantrums I finally learned to stand up and take a few tentative steps.

Six months after my admission to hospital I finally came home, and am now adjusting to my new life as a “Disabled person” I am a single mum to 2 beautiful girls and have an amazing network of family and friends around me, and not a day goes past when I don’t appreciate them all.

Soooo, as I’m currently on long term sick from work, one of most closest friends suggested I start a blog, to talk about dealing with my new life as a person with disabilities and severe fatigue. I am a total blog virgin, and until today had never even set eyes on a blog, so please be patient as I find my feet (No pun intended) I intend to post as things happen in my life that I feel like sharing….