Life after Guillain Barre Syndrome ….. The Air turns Bluer than my Badge when I Can’t Park!

To some people I think Disabled parking signs must appear to read ….”Parking for Blue badge holders AND People popping quickly into the shop, lazy, waiting to pick someone up, using the ATM or unable to find any other spaces, ONLY”!

The disabled parking bays are always the best. Close to the entrance, extra wide and often free of charge. I appreciate how tempting these spaces are, particularly if you are in a rush or the car park is full. However, to a person needing a wheelchair these wide spaces are essential, or if walking a long distance is a problem, a space close to the entrance is a necessity. I’ve actually driven away from places before because I can’t park in the disabled bays. I try to convince myself that all the spaces are being used by blue badge holders, but I know they’re probably not. I’ve seen people blatantly walk out of shops and back in to cars which are not displaying a badge, and they don’t care at all.

It’s the same with disabled toilets. I’ve waited outside them for ages before, only to see people come out with various things, including, toddlers, a mahoosive guitar and loads of clothes they’ve been trying on (I’m convinced those clothes were stolen, but I’ll never know). My wheelchair often can’t fit into the normal cubicles and there’s not always a safe place to leave it. I know that some disabled people need the toilet urgently, and waiting could cause them unfortunate problems.

The good news is that getting cross about parking spaces means I’m on the road again. (Yay!) The DVLA took my licence off me after I became ill, and then returned it to me with a clause saying I must drive an automatic car with hand controls. In August 2014 (11 months after I last drove) I had a two hour driving lesson, where I learned to drive purely using my hands. I’ve been driving for twenty five years, so to suddenly change what I’ve been doing all these years didn’t feel natural at all!

The driving lesson was invaluable, as a week later I picked up my new car. I was shaking like a leaf and sweating profusely as I drove it off the forecourt! My Dad is one very brave man for sitting in the passenger seat as I drove the 20 miles back to my house! I cross my ankles when I drive to stop my feet trying to get in on the action! My right hand controls the break, accelerator and indicators, whilst my left one steers with a steering ball. Wow, that ball can turn corners fast, I feel like a boy racer! After many sharp breaks and wheel spin accelerations, my hands have now got to grips with how much pressure is needed, and it is starting to feel natural. The down side is I often can’t thank other drivers for letting me out of junctions etc, as both my hands are occupied. I hope they notice me nodding my head and smiling! I don’t drive far because of my fatigue, but the freedom of having a car, and the feeling of being behind the wheel again is amazing.

I genuinely don’t think people mean to be cruel when they use the disabled bays or toilets. I think they are just being thoughtless or may be in a rush. They probably don’t appreciate the effect they could be having on someone who really needs them. That’s one of my reasons for starting this blog. I want to share awareness of the awful illness that is Guillain-Barré syndrome, and how life can be for a newly disabled person. Maybe if people are more aware of the difficulties and struggles we face perhaps they’ll park somewhere else or use a different toilet. Then they can walk that little bit further, happy in the knowledge that they are fit and able to do so!

Life after Guillain-Barre Syndrome ….. Who am I? Where am I?!

Before getting Guillain-Barre Syndrome, I was a very organised, switched on person. Never particularly academic (I left school at 16 and went straight in to work) but I knew what I was doing, and very on top of things. I would almost describe myself as being over organised.  However, in recent months my memory is seriously letting me down. For example the other day…..

Shucks, I’ve forgotten what I was going to tell you! Ha ha only kidding! …. Joking aside that’s what it’s like. The worse times are when a friend tells me they are unwell or something, and then the next day I’ve totally forgotten, and don’t bother to see how they are feeling. I then feel a hundred times worse when they tell me they are feeling better, to which I reply “Why, what’s up?!” I’m surprised I still have any friends left!

I live my life by alarms, a diary and little notes all around the house! My children finish school early twice a week and without an alarm telling me to collect them, they’d be stood at the school gates for an hour waiting for me! I would forget to take my medication if it wasn’t for the alarm reminding me throughout the day. If I don’t make a note to do something the minute I think of it, it will never happen.

My daughters have realised they can use this to their advantage. Having got so frustrated with reminding me that they’ve already told me things, they now decide to remind me of things that have never even happened! Did I really promise to take them out, buy them sweets, or let them stay up late?! The problem is I really don’t know if I did or not. I have to rely on reading their cheeky faces to see if they are trying their luck!

I’m very grateful that those who are close to me understand, and are patient with me. However, I’m sure I must appear shallow and uninterested to other people when I forget the things they tell me. So far, my notes and alarms have prevented me from forgetting important appointments or to action official things, but I’m sure it’s only a matter of time!

At first I was concerned it was my medication causing my memory problems, but having read other people’s stories on Facebook and such like, I understand it is an actual side affect of Guillain-Barre Syndrome. I know it is a neurological disorder, but didn’t realise it would actually cause memory issues. I also wonder how big a part fatigue plays in it. I am exhausted all day, every day. Albeit to different degrees, but never the less I’m always shattered!

As there is nothing more I can do to rectify this problem, apart from manage it with reminders, I shall continue to plod along in my own bubble of oblivion! The plus side to forgetting loads, is that I don’t spend time worrying about them, because they’ve been wiped from brain. Ignorance is bliss I guess!

Sent from my iPad

Life after Guillain- Barre syndrome ….. The Only Thing I Want Going Viral is This Blog!

I mentioned in my original blog that I got Guillain-Barre Syndrome as a result of a minor tummy bug that I caught off a colleague. I am no longer ill in the sense that my body has recovered and settled down. What I am left with is the aftermath. Which includes walking issues, numbness, pain and extreme fatigue. I can deal with all these things. What I am struggling to deal with those is the constant fear of getting ill again ……

If anyone so much as sneezes near me, I make my excuses and get away from them as quickly as possible! I’ve used enough antibacterial hand gel in the last seven months to fill a large swimming pool! It’s almost becoming an obsession that I have to antibac my hands several times a day. Even if I have an event planned that I’m really looking forward to, I will cancel at the drop of a hat if the person I was meeting up with is remotely ill. I appreciate that this must be really frustrating for the other person when I pull out of seeing them just because of a cold or such like, but I am petrified of going through it all again.

It was suggested to me (By someone who doesn’t know me, and what I went through, particularly well) that I could have Councelling to try to overcome my fear of getting ill. I have given this idea some careful consideration, but have concluded that unless someone has lived through my experience, how can they tell me not to worry about it happening again. Nobody can give me the guarantee that I need.

Guillain-Barré syndrome in itself is very rare. Only one or two cases per hundred thousand people. Out of us unlucky ones who got it, three percent can catch it again. Everyone tells me those odds are low, but the odds of catching it in the first place were extremely low, and I still managed that! The main Guillain-Barre triggers are Flu, immunisations, common cold, herpes and stomach upset. Which are all fairly “normal” bugs, especially at this time of year.

I’ve decided to embrace my new love affair with antibacterial hand gel, and suffer the dry skin on my hands, and the weird looks from others, as they realise I’m becoming obsessed with the stuff! I shall also continue to avoid people with contagious illnesses as much as possible. At some point my children will bring germs home, or I’ll pick up something whilst out and about, as I can’t wrap myself in cotton wool and never go out. Hopefully, whatever I catch will come and go without anything awful happening, and as the months and years go by perhaps I will be able to start trusting in my body not to start destroying me again!

Life after Guillain-Barre Syndrome ….. The Customer is Always Right, Unless, of Course, They’re Disabled!

When I’m not recovering from rare neurological illnesses, I find myself working for a High street Bank, and have done so since I was sweet 16, oh so many years ago! We are taught to value all our customers, and to ensure that those with disabilities are made to feel welcome and safe in our establishment. Unfortunately not all companies share the same values. I would like to share with you two events that took place whilst I’ve been out shopping over recent months …..

The first took place in a well known Fashion store. I was on one of my first shopping trips since coming out of hospital. I was accompanied by my Mum and my two daughters. Loaded up with various items of clothing we headed for the changing rooms, where an assistant directed us to the disabled cubicle. My Mum parked me in the far left corner, and then my girls promptly started trying on clothes. They are at the age when even my Mum and I have to look away as they change, but we’d bundled into the one room as we had a lot of stuff between us.

I was in the middle of trying a top on, when, suddenly the double curtains to the cubicle flew wide open. An assistant told us in an extremely loud voice that we were to move to another cubicle immediately, as there was a disabled person waiting to come in. My poor daughters were mortified and desperately trying to cover up, as everyone in the changing rooms were now gawping at them. My Mum asked what on earth she was talking about, to which the woman repeated herself, again asking us to gather up our stuff and move. My Mum said nothing, and just pointed towards me. The assistant then popped her head round the curtain and saw me sat in my wheelchair looking none too pleased! She then quickly retreated, apologising for bothering us. However, the damage had been done. As the four of us left we felt like criminals, and I felt as though everyone was looking at me. I’m still very self conscious of my wheelchair now, but when I first came out of hospital it was a hundred times worse. To feel humiliated and to be stared at was just horrible. We couldn’t get out of the shop quick enough. In their defence the company did compensate me with a generous amount of gift vouchers, after they received a strongly worded email from me!

My second complaint was sent to one of the UK’s biggest supermarkets. I had been in the store picking up a few bits and pieces in a basket, whilst my youngest daughter pushed me in my wheelchair. When we reached the check-out I placed my basket of goodies on the conveyer belt (Which in itself is difficult for me, as my hands and arms have pins and needles 24/7) The look the cashier gave me as I did so was unbelievable. It was as if I’d committed the crime of the century! My daughter then pushed me down to the packing end. The cashier then promptly grabbed my basket with one hand, and tipped the whole thing upside down. Several of my new items then fell on the floor “You can’t put your basket up here” I was then informed “You have to empty it first” I wish I could tell you I came up with a witty comeback, but unfortunately I heard myself apologising with embarrassment. She then continued to serve me in silence, looking at me as if I was something she’d just wiped off her shoe. Once again we couldn’t wait to get out of the shop. I did receive an apology in person from the store manager, as he gave me a gift card to spend in store, but again it was too little too late.

Disabled customers should be treated with exactly the same respect as an able bodied person. Yes I appreciate that baskets should be emptied, but if someone is physically struggling then help should be given, not criticism. As for exposing them and humiliating them in a busy changing room there is just no excuse. I hope in the years to come more and more companies will train their staff to show more compassion. However, if everyone just treated others as they wish to be treated themselves no training would be necessary. After all, these shop assistants will never know if one day a minor illness may leave them wheelchair bound, and they may just want someone to show them a little respect.
Rant over!

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!

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-Barré 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….