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!

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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!

Life after Guillain-Barre Syndrome ….. Choosing the Packet of Broken Biscuits!

If you have a partner when you get ill, it’s almost expected of them to stand by you, and care for you after you’ve been seriously unwell. I was in a relationship with someone when I got Guillain-Barre Syndrome, albeit only for a few months. He stood by me whilst I was in hospital, but the pressure and reality of what has happened to me, and the disabilities I am now left with pulled us apart.

Being single is a whole different ball game to being in an already established relationship. I don’t mean in regards to doing housework and looking after the children, I mean as a couple. Dating after Guillain-Barre feels virtually impossible. I’ve dipped my toes in the water, so to speak ….. And sunk!

The first and biggest obstacle is finding someone who wants a disabled girlfriend. Declaring on your online profile that you need a stick and a wheelchair is hardly sexy! A man can tap his chosen age range and post code in on a dating site and find a hundred single women who live close by. Why out of those hundred women would he chose the disabled one? It would be like going into a shop and choosing the chipped ornament, or buying that packet of broken biscuits!

So assuming by some miracle I’m lucky enough to win someone over with my charm and good looks (Ha ha ha, who am I kidding!!!!) then the real fun starts. Starting a new relationship involves looking one’s best. On a child free evening all I want to do is curl up under a blanket in front of the TV, catching up on all my recorded programmes. Dating involves taking the time to do my hair and makeup (Even at the end of the day) and deciding what to wear. Razor??? What’s a razor?!! I’ve not had to bother with one of those in a long time!!!! (Joking!) Seriously though it takes a lot of time and effort.

In all honesty, there are a few decent, kind men out there, who do have the depth and patience to be in a new relationship with me, and I recently met one. Unfortunately it didn’t work out for us due to a number of reasons. Hopefully my Mr Right will come along soon. In the meantime I guess I’ll just enjoy being not-so-young, free and single!

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 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!

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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!