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 ….. Available in sizes 8 – Wheelchair!

When I was discharged from hospital I was provided with a brand new wheelchair. At the time, in my excitement to finally be released from hospital after 6 long months (I never thought I would empathise with prisoners!) I didn’t look at the size and weight etc, I was just grateful to be given one. Over the last nine months, however, I’ve discovered that the said wheelchair is heavy and cumbersome.

It’s great that I have my new car with hand controls and the freedom to get out and about. However, the wheel chair is so heavy I couldn’t possibly get it in and out of the car by myself. There’s not much point driving myself to Asda, only to sit in the car park! Even if by some miracle I was able to get it out, it’s too heavy for me to self propel more than about 15 metres. Of course this has nothing to do with my body weight!!

I’ve certainly put on a little bit of weight since coming out of hospital. I have what I call my “Wheelchair middle” caused by sitting down for most of my days. To be honest I’m surprised I’ve not put on a lot more, as I can’t exercise. The only conclusion I have come to is that because everything I do takes far more effort than it would for an able bodied person, I am burning off more than average calories when doing very little.

Fortunately the NHS have taken pitty on me, and in October I was measured up for a new light weight wheelchair, which should be delivered to me very soon. Not only does it weigh less, it has quick release wheels, that means it can be broken in to small parts to be put in my car. I’m not sure if I’ll be able to self propel any further in it, but time will tell. It will also look more “trendy” than my existing one and will hopefully be easier for the person who is pushing me.

Having a wheelchair has changed many things in my life. Things are so different when I’m out and about in one. It took me ages not to feel suffocated in clothes stores, as it feels like I’m in a maze with high walls made of clothing! I have to also give extra thought to what I wear. When I went to my brother’s wedding last year I chose a dress that flared out, so it would look nice when I’m sat down. High heeled shoes and flip flops are a no-go when you’re disabled, so I have to think of outfits that look ok with flat shoes. (I so miss my flip flops and heels!) I also get very cold in my wheelchair as I’m not moving. I compare it to being sat at a freezing cold bus stop for hours on end. I’ve invested in two long warm coats to see my through this winter. I’m very grateful that those massive long Dr Who type scarves are in fashion, as I can place one round my neck and across my lap, without looking like a little old lady under a blanket!

I always try to look for the positives in any situation and I’ve managed to find a couple relating to having a wheelchair. For some reason people talk to me far more when I’m out and about. Not just the staff in stores but also the random general public. I find myself laughing and chatting with complete strangers on a regular basis. The other massive benefit of course, is that no matter how busy the establishment I’m always guaranteed a seat!