Life After Guillain-Barre Syndrome ….. Spelling the Hind Legs Off a Donkey!

I’ve seen on various forums people asking advise on how to help patients in Intensive care who are paralysed by Guillain-Barre Syndrome. It’s a valid question and I know that my family and friends also questioned this.

My first month in ICU is a blur. I only remember snippets of things and of course my hallucinations! My parents sat with me day after day without fail. A lot of this time I was sleeping, but I always knew that whenever I opened my eyes they were there for me smiling, holding my hand and checking if I needed anything. Their presence was so reassuring and that in itself is what I needed most, just knowing that the ones I loved were there for me.

The physiotherapists in ICU showed my Mum how to exercise my arms, so every single day she exercised my fingers, arms and hands between therapy sessions. The medical team were really impressed at how quickly my movement came back in my hands and arms, and that was all thanks to my Mum’s hard work and dedication, and I shall be eternally grateful to her.

I couldn’t speak at all in ICU due to being ventilated and could only make a clicking sound on the roof of my mouth. Anyone who knows me knows that I am a chatterbox and can normally talk the hind legs off a donkey! Therefore, being unable to express the thoughts that were in my head was torture, especially as I was so scared and had hundreds of questions I wanted to ask. One of the ICU nurses kindly laminated the alphabet for me, with columns of letters on. People would hold the board in front of me, and point down the columns until I indicated with a slight nod of my head that they were in the correct row. They would then go along that particular row until I found the letter I wanted. Between us I could painstakingly spell out what I needed to say letter by letter. My friends and family that used to do this with me showed great patience and I never felt rushed. This meant the world to me as it meant I could communicate. At one point I spelt out “Am I dying” to which my mum told me I’d better not, bless her heart.

Although I was completely paralysed I could feel people holding my hands. This in itself was great comfort. Although I hated being stroked. Why is it that people like to stroke the hands, arms and hair of sick people?! I hated it, but often it was too much effort to communicate it so I just put up with it!

I loved listening to my visitor’s stories. It was great hearing what had being going on in their lives, even the bad stuff. People would often say that they didn’t want to burden me with their problems, as they seemed insignificant compared to what I was going through, but I wanted to hear about everything. Their arguments with their partner, the dog eating the child’s homework, the car failing it’s MOT. The mundane stuff gave me a sense of normality and made me feel human and “normal” again. Some people even managed to make me laugh during those darkest days which was incredible. Just chatting to me about silly things and telling me jokes, or perhaps eyeing up the dishy doctors!

Being punctual is also really important when visiting someone in ICU. When you are laying there, trapped in your own body, a visitor’s arrival is all you have to focus on (I didn’t even have meals to look forward to as I didn’t eat or drink anything for 10 long weeks) So if someone says they’ll arrive at 5pm and they arrive at 5.30pm, that half an hour can feel like a lifetime. Unable to text or call them, you just have to wait and wait for what seems like hours. However, the minute you hear that buzzer go and you know they’ve arrived, it is the best feeling in the world!

So my best advise to anyone visiting someone with GBS in ICU, is realise that just you being there is all they need. It will be a long journey so be patient with the patient!

Life after Guillain-Barre Syndrome ….. Repairing Spaghetti Junction!

I’ve never been much of a night owl, and have always needed my sleep. Even as a child I would often ask to go to bed. Unfortunately my children don’t take after me! Since I became ill my need for sleep has gone off the richter scale! On a weekend if I don’t set an alarm, I can easily sleep for twelve to thirteen hours, and still be tucked up in bed by ten the following evening!

Needing lots more sleep in itself is not a problem for me. My daughters quite like the fact that we all head off to bed at the same time, and being single I don’t have anyone complaining that I’m going to bed too early! Fatigue, however is a massive problem for me everyday. I like to use the word “fatigue” rather than “tired” because I feel like a whining child when I constantly complain that I’m tired. I tend to use the term “extreme fatigue” to try and express that it’s soooo much more than just being tired, but I still don’t think people really understand how it feels.

It doesn’t seem to matter how much sleep I get, or whether I had my afternoon nap, the fatigue doesn’t go away. My fatigue levels are not always in relation to what I did the day before. Some mornings the minute I open my eyes I know it’s a bad day, even if I’d spent the day before doing very little. However, being taken out to the shops all day by someone is usually guaranteed to wipe me out the next day. I struggle with fatigue to some degree every single day, but some days are far worse than others. On these days even the smallest of tasks seem like massive mountains to climb, and I find everything over whelming.

I don’t have a very good understanding of medical stuff, and only got a “D” in my biology GCSE! From my what I can make out, the fatigue occurs because my body is so busy trying hard to get messages through my nervous system, in order to carry out normal activities like moving and walking. Because my nervous system has been destroyed by the Guillain-Barre Syndrome the messages reach dead ends, and so the brain has to find them a new route. Imagine driving through Spaghetti Junction and every corner you turn you are faced with a “Road Closed” sign, and eventually after trying several different options, you have to come off and take the country roads! Also my body is constantly trying to repair the damaged nerves, which is a full time and tiring job in itself! This is exhausting for my body and consequently it doesn’t have much energy left for anything else! I think this is also why my memory is so bad, as discussed in a previous post.

Luckily my children are wonderful and help me out every single day. I also have brilliant parents and an amazing network friends, who all chip in. Without everyone’s help I wouldn’t be able to live my life as I do. All the things that each person does add up to make a huge difference to my life, and I am very grateful.

Right, time for me to put the kettle on, get out my onsie and park myself in front of the TV with a bar of chocolate….. Don’t judge me, I’m extremely fatigued I’ll have you know!!!

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….