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Surviving Guillain-Barre Syndrome

14/08/2014 16:51 | Updated 22 May 2015

Surviving Guillain-Barre Syndrome: 1 Year On

This time last year, I had just been discharged after a week long stay in hospital, after being struck down by the rare Guillain-Barre Syndrome.

My new baby was only three weeks old, and had just spent a week in hospital herself (after contracting an unrelated infection). Two days after she came out, I was back in (we really should have bought a season ticket for that hospital car park!).

Here is my story, and I hope that it will raise awareness of a (thankfully) rare condition, but one that can be deadly and strike post-natal women at their most vulnerable...

When Sasha was two weeks old, she became very poorly, and was admitted to hospital with an infection, one that would keep her in the children's ward for the best part of a week.

Adam and I were exhausted, taking it in turns to stay at the hospital with her, as well as being at home with Freddie (then 15 months). We were both fried, mentally and physically. I was still recovering from her delivery, and generally feeling run down (pre-birth I had a nasty virus that I'd only just gotten over, this will become relevant to my story later!).

Staying nights in the hospital with our baby girl was taking its toll, as we were constantly being woken up throughout the night as checks were carried out on her. All-in-all, even the healthiest person would have started to feel like crap!

Two days before Sasha was allowed home, on a Sunday, I started to feel a little achy again, like I was coming down with something once more, but it didn't seem to be developing into anything too bad. 'Phew' I thought, although my left arm was giving me some jip - it was really painful, and felt like I'd pulled a muscle.

The last time I'd had that sensation was after a tough workout at the gym, and believe me, that hadn't happened in a looong time! I was sure that it must have been from picking Freddie up or something, he was massive after all.

The next day (Monday), I woke up in the morning, and my whole body now felt like it had completed a workout, and one that I hadn't warmed up properly for. Every muscle in my limbs felt like it had been pulled. 'I'm DEFINITELY coming down with something again' I thought, and this time I just felt pissed off. Feeling ill AGAIN was SO not what I, nor my babies needed right now.

I soldiered on, Sasha came home, but two days later (Thursday), my body still felt the same. In fact, as the day went on, it was getting worse. Adam had finally gone back to work, so there was no one around during that day, and I was struggling to carry out some simple tasks.

My 'pulled muscles' were getting worse, and I could barely lift the highchair, or lift Freddie into the high chair for him to have his tea. Squatting down to tidy toys away was becoming absurdly difficult. By the time Adam was home from work, and we were getting Freddie and Sasha ready for bed, things were getting worse.

I could barely stand up from a sitting position without extreme effort. Gripping Freddie's toothbrush, or opening a door just wasn't happening.

Children asleep, I sat down, feeling exhausted, and little tearful. Adam suggested I get an early night, and see how I feel in the morning. "Good call", I said, but decided to give my mum a quick bell before bedding down for the night. I felt disorientated, and hearing my Mum's voice made me upset. I told her my symptoms, and that I didn't feel well but I didn't know what was wrong with me. I had never experienced anything like this before.

"That doesn't sound right, that doesn't sound right at all," she said. "Phone NHS direct, and see what they say. I think you should be seen by a doctor ASAP".

After giving NHS Direct a call, they advised that we head down to the EM-DOC (Emergency Doctors) clinic at the hospital to be checked out. Adam's always amazing parents stepped in to look after the children. After waiting a good hour there, we were called in to see someone.

By this point, I needed full support to go from sitting, to standing and walking. It was so strange. Once standing, I could actually walk OK, but my muscles had just totally given up on me when it came to standing up, or gripping hold of anything.

I told the doctor exactly what my symptoms were, that I had just had a baby, and that I was totally fed up because I'd just gotten over a flu virus-thing three weeks prior to this.

Doc ummed and aahhd, before asking me if i'd ever heard of something called 'Guillain-Barre Syndrome'? Er, no, was the resounding answer from both Adam and myself.

The doctor then explained that essentially it was when you've been run down, or suffered an illness or infection a few weeks before, then your body's antibodies, instead of trying to help you, turn on you (the bastards!), and start attacking your nervous system.

This is what causes the 'dead' muscles, or paralysis (for a more detailed explanation of the different types of GBS, click on the link in the first paragraph).

He called for a wheelchair, and said that I was to be taken to wait in A&E, whilst my details were taken, and I'd have to wait to be admitted, whilst also being monitored at the same time.

Doc said that I certainly wouldn't be going home that night. I was shocked, and more than just a little upset about being parted not only from Freddie, but from my newborn baby too.

Four hours later (oh I love the hospital waits, even when you're an 'urgent' case!), I was finally admitted at 3.30am. I had sent poor, guilt-ridden Adam home by this point, as he really needed to go to work the next day, plus make sure the children were OK.

He had already taken so much time off work when Sasha was born, and then subsequently in hospital. Bedsides, I wouldn't be in for that long, would I?

By the time I'd been wheeled off to be assessed in 'Urgent Care', I was absolutely knackered, and starting to feel very frightened, because as well as not being able to move any of my limbs, I was losing the ability to swallow properly.

I think this is when the docs and nurses realised that this might be quite serious, and I should have been seen earlier (no shit!). Luckily for me, this was as worse as it got (the not being able to swallow quite as well).

An (attempted) lumbar puncture was carried out on my spine at 5am (collecting spinal fluid is the main way of testing for proteins that confirm GBS), before the junior doc decided to abandon ship half an hour later, as apparently the vertebrae at the base of my spine were "tighter together than the norm, Miss Evans".

Hallucinating slightly by this point through tiredness, my main thoughts on being told this were "Ha! So THAT'S why I'm so shit at yoga and touching my toes!" and, "Great, I avoided epidurals during both labours because I hated the thought of a needle going into my spine, and this is now happening three weeks later". Oh the irony.

A successful lumbar puncture was carried out the next day instead by a shit-hot anesthetist who could deal with my stubborn spine and it's teeny gaps, but I can safely say I do NOT want to repeat that experience again, nope. Bloody painful!

Anyway, throughout the first 48 hours of being admitted I was monitored constantly, having a peak-flow breathing test every hour, even through the nights, in case potentially deadly paralysis of my respiratory system occurred (a possible side-effect of GBS).

Thankfully for me, after two days, I started to regain feeling in my fingers, and some movement in my legs. Reflex tests were carried out twice a day, and I was starting to show some signs of improvement. I was able to stand, and be helped to the toilet, after two days of using a bed pan. Which is probably a good thing, as I resolutely refused to take a dump in one of those things, and my, er, resistance, was weakening!

As an aside, for those wondering (although you're probably not), what it's like to wee in a bed pan, think back to when you were age six, and that warm feeling when you peed in the pool whilst swimming. Yeah, that.

I moved from intensive care to a general ward after three days, where I would remain for the rest of my stay.

The only way I can describe how I felt mentally at this point, was 'weird'. I desperately missed my babies, although I feel awful saying it was more Freddie I missed at this point. I feel terrible thinking this about my beautiful baby girl, but I still hadn't totally bonded with her, what with her being in hospital for a week, unable to cuddle her much, and just watching her hooked up to wires and drips (breastfeeding had totally gone out of the window by this point). And then there was me laid up for a week, away from her, and normal life.

She was bought in to see me by Adam, after I'd been in three days and was less poorly. But I felt a bit odd and detached. It almost felt like i'd never had a second baby, like it had all been a blur. I'm sure our enforced separation so soon after birth meant it took so much longer to bond with her, but i'm pleased to say I'm totally head over heels for my baby girl today. It just took a little longer because of all the upheaval.

After five days, I had almost all feeling back in my body, bar a few nerves in my feet that still weren't responding well to reflex tests. Adam had been a trooper on the home front, as had our families, making sure the children were cared for and we were well supported. We couldn't have managed without them.

I was to be discharged after a week in hospital, to be referred to outpatient clinics to have nerve conduction testing, physio (if still needed), and to see a neurologist. My lumbar puncture results did indeed reveal that I had contracted GBS, but that I had been bloody lucky. I was told that so many people suffer long-term life-altering side effects from GBS, and require months of intensive physiotherapy. Four per cent of all people who contract GBS will sadly lose their lives, despite all the best care available.

A year on, I have no lasting effects from contracting Guillain-Barre Syndrome, have been discharged by my neurologist, and am (touch wood) fit and well. We will probably never know exactly why I contracted GBS (it only strikes 1-2 in 100,000 people), but it has made me grateful for my health and family, and also for the excellent medical facilities available to us in this country.

I just want people to be aware of the symptoms, to seek help if they have any similar ones, and for new mums to be vigilant, as your immune system is at its most vulnerable after giving birth.

Twenty-something former radio lady, now SAHM to Freddie, 2.4 and Sasha, 13 months, living in the 'burbs of London!

Blogs at: Nearly London

Twitter: @beckingtons

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