Monday, 23 December 2013

Happy Birthdays

It was my birthday yesterday and for the first year in a long while I actually had a very good day.

See my birthdays (and I don't say this to envoke mass sympathy) are usually pretty shit. It's partly that whole "Christmas birthday" thing. It's a cliche, but as anyone else with a mid-to-late December birthday can tell you- years of "joint birthday and Christmas presents", birthday gifts wrapped in Christmas paper, a lack of anyone to celebrate with because they're all visiting relatives/Christmas shopping/at their work's Christmas do/snowed in or just partied out, can take their toll.  Also there's the fact that at this time of year there's almost as many viruses flying around as there are cover versions of "All I want for Christmas", inevitably meaning that several years have seen me or my friend's capable of nothing more celebratory than proposing a toast with a mug of Beechams Hot Berry Fruits.

The eve before this birthday I spent some time reflecting on birthdays of years gone by. I had a good run in my early 20's when I somehow managed to use the festive season to my advantage, thus celebrating the passing of years with nights of drinking and dancing but since 2009 things have gone considerably downhill. That year my Dad died 2 days before my birthday leaving me in no mood to even acknowledge it's existence. 2010 I went to a carvery with my family and truth be told had a nice day but as I'd just had a twin miscarriage a week before I was to a certain extent feeling pretty shitty. 2011 was possibly the worst, I had mastitis and spent the day in bed wondering if I'd be forever 27 as I felt for sure my days were numbered. I did eventually surface at 4pm giving me just enough time to wrap a few christmas presents for other people before returning to bed. Then last year I went to the Trafford Centre so my boys could buy me some Dr Martens. That's no great hardship although given as it was The Trafford Centre 3 days before Christmas we were basically risking life and limb in doing so, and didn't stop any longer than absolutely necessary. We stopped off at Krispy Kreme and Starbucks drive-thru on the way home and sat in the car shovelling doughnuts in our mouths whilst Chris was on the phone to our letting agents trying to get them to fix our boiler. Oh, didn't I mention we didn't have any heating or hot water at all for 3 weeks encompassing my birthday, christmas and new year?!?

So I didn't have high hopes for this year. What with me being full of a cold, approaching another CIDP relapse, and with lots of sad and difficult things happening to people I love, I figured it would be best to just lay low and not get my hopes up. But then I realised that just as in life, there is little point complaining about how shitty things are without also intending to do something to change it, so it follows that it must also be true that I can't sit and whinge about my naff birthdays if I never make the effort to improve them myself.

And it worked! My Mum and sister and brother came to visit, which was lovely in itself and as an added bonus they looked after the boys' for a few hours whilst me and Chris escaped to Richmond Tea Rooms for afternoon tea. It's rare we get to spend any time just the two of us (this was our 3rd child free excursion in 4 years!) and it was great.

Sure I had to keep surruptitiously blowing my nose, and thanks to the CIDP I was so tired when we got home I wasn't sure I'd ever make it off the sofa again, sure between our chatter about fun stuff Chris and I also touched on sad or difficult topics but hey that's life. Birthdays, like every other part of life, are perhaps not supposed to be perfect. By waiting for that perfect birthday, or perfect christmas, perfect partner or perfect job, maybe we're not only setting ourselves up to fail but also failing to see the beauty in what is already right in front of us.

All I know is that I am feeling very thankful for everything I have at 29.

Not just the messages, cards and presents.  Not just the delicious little cakes and glasses of fizz (although certainly I'm thankful for those too) but also my beautiful boys, who admittedly were so grumpy when I returned from my birthday tea that they refused to even pose for a photograph together, but who without fail make me smile every single day.

Chris, who always does his absolute best to make my birthday special, battling against all the forces at work previously mentioned, in an attempt to make me feel special too.

My Mum, who in addition to the small matter of actually giving birth to me, never ever wraps my birthday presents in Christmas paper.

All our family and friends who think of us most days of the year not just the 'important' ones.

And this ridiculous body, that despite it's (mainy) failings, most notably- attacking itself on a regular basis leaving me paralysed to various degrees, has nonetheless allowed me another year in this crazy, harsh, exciting, complicated and wonderful world.

Wednesday, 11 December 2013

My Life Story- Abridged

If I had to justify this glass of wine I could write a fucking book.

It would begin with "My 2 year old just had diarrhea in the bath...a bath which contained not only every single bath toy we own but also his 4 year old brother".

It would feature the word "cancer" a lot.

And it would end with "...and my left leg will not stop fucking twitching!"

Good thing I'm too tired to write really as I doubt it'd be a best-seller.

Saturday, 26 October 2013

The Clocks

When my Dad died his wife threw out pretty much all of his stuff.  By the time I went round to the flat they'd shared, just a few weeks after his death, it was like he'd never really lived there.

He didn't own anything of any financial value, so I was aware I wasn't on the cusp of inheriting some remarkable treasures. but my Dad was a very sentimental man, and I know for sure there would have been books, photos, letters etc that he'd have wanted me to have and it broke my heart that I wouldn't.

I searched his place for clues of his existence, and managed to accumulate an odd collection of items including a gold ring, that I can't wear because I'm allergic to gold, a mug from Whitby (one of his, and my favourite places), a BNF, which will strike many people as bizarre but my Dad had been on a cocktail of drugs for years and was forever looking stuff up in there, and a couple of other books- a cookery one and the other about Fred Dibnah (who, for the uninitiated, was a steeplejack) who my Dad admired.  Oh and a fancy calculator.

Other than that I have only photos, and a shoebox full of letters/cards from him.

All of which I came across today whilst packing ready for our move to the new house.

You see, I'd had the bright idea of getting all our junk out of the loft so that it wouldn't get forgotten and so we could sort through it all (aka, chuck a load of it in the bin) rather than just blindly move it all over to the new place and shove it in the loft there.  So the last couple of days have been spent sifting through bags and boxes full of the most random items, each provoking a cascade of memories for either Chris or myself, or both of us. (Or, at times, neither of us, when it's been a case of "What in the hell is this and why have we been keeping it all these years?!")

Today I unpacked the pitifully small collection of my Dad's things from one box and carefully placed them in another, taping it up and labelling it "SENTIMENTAL ITEMS- LOFT"

It seemed very fitting to find them today of all days, as it's the one day a year, other than my birthday or christmas day when my Dad would always call me. If there's one thing that you learn to depend upon, as the child of an alcoholic, it's that you can't depend upon anything (or anyone).  And yet- every single year, without fail, from the year I left home and we got back in touch, he would call me on this day. From 2001, until 2009, the year he died. Why? Because of the clocks. He (and I) worried that I would forget to put them back before I went to bed, so each year, on the last Saturday in October, the end of British Summertime, he would call me and say "Don't forget about the clocks lovely".  He'd usually call me in March too, and remind me to put them forward again, but October was a definite.

As I flicked through bundles of birthday and christmas cards, some where his fountain pen had danced elegantly across the page leaving extravagant words and letters in it's wake, others, after his stroke, where it looks as though a toddler has been left alone with a biro, I got to wondering about clocks and time.

Every year we do this crazy dance with time, putting the clocks back and pretending it's earlier than it really is. What if I could really go back in time?  What would I change?

I don't know. In my Dad's case, it's easy. I'd change it so he wasn't alone at the end. Or rather, that he wasn't with people who were being paid to care. Or if I couldn't be there at the end, since he passed away at 4am, then I would at least make it so I'd have visited him the day before, and make it so that he'd have met his two baby grandsons, who had only just come in to the world, in the weeks before he left it.

Aside from the circumstances surrounding my Dad's death, there isn't much.

The night I left home, at the age of 15, my younger sister, with whom I shared a bedroom, woke up (unsurprising as I doubt I was collecting my things together particularly stealthily) and asked me where I was going and I said "Go back to sleep Sophie". I didn't know it but that was the last time I'd see her for four years. So for four years I agonised over, and regretted those last words. I wished I'd said "Sorry for waking you", or "I'm not leaving because you annoy the hell out of me sometimes", or a simple "I have to go but I love you". Pretty much anything other than what I had said, basically.  So there was a time when I would have gone back and changed that, but 13 years have passed since then, and so many more things have happened, time has moved on, as have both me and my sister. I don't even know if she remembers waking up that night to see me stuffing clothes into bin liners.

I often mentally kick myself for giving up my housing association flat. From a practical and financial point of view, it was a dumb thing to do. But I was 23 and full of the certainty of youth ("I'm a qualified nurse now, I can make it in the world without any assistance whatsoever!") Jeez. What a moron. So yes, sometimes that thought makes me wince. But what's done is done, and I'm happy with where I'm at now so what does it matter how I got here?  And I suppose that's what it boils down to: feeling content with where you're at.  Don't get me wrong, my life isn't easy, but then I'm beginning to wonder if that isn't the point.

So before I go to bed I'll be putting my clocks back (actually, there are very few now that don't sort themselves out, it's quite scary) without a reminder from my Dad, for the fourth year running. But I'll only be putting them back one hour. I've travelled back in time enough in these past couple of days to know that I'm happiest right here right now.

Sunday, 20 October 2013

How I Am

Several lovely people keep checking in with me to see how I am. I think they mean "How I am feeling" as opposed to say, "How I am still alive after everything that has happened these past couple of months", although frankly that feels like a relevant question too.

The answer is "Ok". And also, "I don't know".

I'm able to attend to most of my daily needs- showering, toileting, getting dressed, eating and drinking, entirely independently. I can walk without help and without falling down. I can even manage the stairs with my trusty crutch. I left the house for the first time yesterday and that was totally fine. So really, when I think about it, I'm doing ok.

Certainly compared to this time 2 weeks ago, when a bruised and defeated version of myself lay in a bed on AMU hooked up to the magical 2nd dose of immunoglobulins that seemed to kick start my recovery. In fact some days when people ask me how I am, I feel like resorting to hyperbole and images flash through my mind of me cartwheeling around the room shouting "Spectacular!" and "Superb!" because physically, although I'm probably only about 85% back to normal, compared to how bad I was I feel about a million times better.

On the other hand, when people ask me how I am, I feel stumped. A simple question leads to a spiral of confusion. At any given point in time I find it almost impossible to identify a singular emotion that would cover my current state of being.

I feel genuine happiness at being home and reunited with Chris and my boys. I feel so much gratitude and huge crashing great waves of relief at how well my recovery is going. I feel stressed about our impending house move, and frustrated at the timing and how inconvenient it is and how little help I can be on a practical level. Although there is also a tinge of excitement mixed in there, of fresh starts and new beginnings. I feel worried about family and friends, who have their own struggles and who's battles, unlike my own are not yet definitely won. I feel terrified that this may yet turn out to be only an interlude in my own battle and that my symptoms might come back or I might wake up one day to find I can't move again.  I feel sad about the loss of our baby, about the plans we made that now won't be and the space in our future that now waits to be filled, or not. And occasionally I feel overwhelmingly and irrationally angry. I'm talking pure unapologetic rage. Towards people, towards things, towards life itself. It comes out of nowhere and in a flash it's gone again, leaving me wondering if a side effect of IVIG therapy is some kind of Banner-esque transformation.

The fatigue aspect of recovering from Guillan-Barre has been spectacular. Always inclined towards narcolepsy, in the sense that I have an ability to fall asleep any time any place (a distinct advantage when it comes to juggling shift work and motherhood) I now find myself like a cat. Delighted to be alive and yet unable to fully appreciate what life has to offer because I need to spend about 16 hours of every 24 asleep. Waking up is a several hours long process compared to getting to sleep which doesn't even require my eyes to be closed before the process begins.

Today I didn't get out of bed until 10am. I spent most of the afternoon sat on the sofa in my pyjamas wrapping ornaments and picture frames in bubble wrap and placing them in a box because it was the most "helpful and yet restful" thing I could think to do. Even so by teatime I was unreasonably exhausted and I fell asleep whilst putting Toby to bed, before even he himself went to sleep and woke up an hour or so later, summoning up just enough energy to transfer myself into my own bed before zonking out again.

Admittedly I'm awake now but that's only because Chris came to check where the hell I had got to and his presence in the room woke me up (and scared the shit out of me) so I decided to sit and drink some ribena and potter a little on my phone before falling asleep at a slightly more reasonable hour for someone (well) over the age of eight.

When I think of how I used to spend entire days from 6am until 7.30pm in sole charge of the kids and then go work a busy night shift before getting back home at 8am and then sometimes sleeping for a couple of hours or maybe not at all before continuing where I left off with shopping and cooking and cleaning and playing etc. It's hard for me to comprehend how I was even still alive.

These days all I can manage is some light packing and/or childcare duties (after about 12 hours sleep) and I'm done for. It's like getting used to a whole new pace of life. Pace being the operative word and something I think I am going to struggle with because I like everything doing yesterday and find it difficult to differentiate between urgent and non urgent tasks. Chris calls it "impulse control issues" as it often leads to me undertaking ridiculous tasks at the most inopportune times because I can't bear to just let it go for another minute. I know I am going to have to learn though if I want to keep the momentum going with my recovery without setting myself back. It's just going to be hard.

So, if you ask me "How I am" and it takes me a few minutes to formulate a reply. Or indeed if my reply is a garbled nonsensical string of words, then you'll understand why.

Thursday, 17 October 2013

9 years

Today, Chris and I have been together for 3,287 days!  Or 9 years, if you prefer.

On this evening, in 2004 he came over to my flat to teach me SPSS (that's statistical analysis software by the way, not an abbreviation for something kinky) and the rest, as they say is history.

A lot of stuff can happen to a person in 9 years, and it turns out, even more stuff can happen to two people. We've lost, and gained family members, we've started and finished university courses, left jobs, got new ones, left those and got new ones again, we've moved house about a trillion times (ok, four and counting), we've made new friends, found new interests, become part of each others' families and even started our own...

First with this furry little monster in 2005:

Then this crazy mutt in 2006:

Then this gorgeous little guy in 2009:

And then this awesome little dude in 2011:

We've had good times and bad. It hasn't all been like a breakfast cereal commercial, or a hallmark card, hell- we don't even celebrate Valentines Day.

Right now we have an entire house to pack into boxes and he's sipping tea and sorting through old bank statements, periodically declaring "Ah, those were the days".  So it's safe to say he has the uncanny ability to irritate the hell out of me ;)

But even in our crappiest times, and life really has thrown some shit at us, I've always felt that being together made it that bit less crappy.  I've never once doubted that being with Chris makes my life better.  Having him makes the good stuff even more awesome, and the bad stuff just that little bit more bearable.

If you find someone who will love you for who you are, who will kiss you for hours, who will dance with you even though they "DO NOT DANCE", who will secretly have a custom Hello Kitty cake covered in glitter, made for your 21st birthday because they know how giddy it will make you, who will introduce you to their entire family just 3 months after you meet, because their Nan has passed away and they want you to be at her funeral, who will encourage you to quit something that is making you miserable and who will share your hopes and dreams for the future, then you should probably hang on to that person.

Later down the line they will be the person who will celebrate your first job with you, even when they're struggling to find one of their own, who be with you throughout 2 labours, without even once slipping into that demented cheerleader role: "Push, push PUUUUUUSH!" Who will lift you off the toilet when you inexplicably find yourself stranded there, and stay with you at the hospital whilst you're admitted for a rare autoimmune condition, and who will hold your hand whilst you sit in a hospital room waiting for your third miscarriage to begin.  All the while finding ways to make you laugh, and to know that you're loved.

There are probably not that many men in the world who will give you everything you need. I don't mean everything you want, that would be a disaster. God forbid. I mean, someone who knows you as well as you know yourself, and uses that to your advantage, rather than their own.  In 9 years Chris has promised me nothing and given me everything. For that, and for every one of the last 3,287 days I am eternally grateful.

Aww, back when we both had long hair.

Then Chris had long hair but I had all mine cut off!

Both with short hair and look- we have a baby!

2 babies!

Celebrating our fabulousness with champagne. (Actually we were celebrating Chris's 30th)

A bottle of champagne and a few other drinks later...

Happy Anniversary Chris xxxx

Sunday, 13 October 2013


Things In Which I Don't Believe


I am Santa. Which is almost as much fun as believing in him so don't feel too bad for me on this one.


Every day I see bad shit happening to good people and wankers walking around without a care in the world. Either my understanding of karma is flawed or the concept itself is a load of bollocks.


As a nurse I've had a lot of people tell me I'm an "angel". Clearly none of them have seen me just after being undertaken by an absolute tool in a BMW on the motorway.

Things In Which I Do Believe


Inconvenient, mind-blowing, illogical, life-affirming, glorious, love.


Less of the "water into wine" variety and more of the "this is so incredible I can't believe it could be real" variety. Like the 2 little humans walking around today who started out as a chemical reaction in one of my fallopian tubes, for example.


I don't care how busy you are, how important you think you are, or what other shit you have going on in your life, it costs nothing to say "please" and "thank you".


Whoever decided we should stuff our faces 3 times a day at set intervals was a moron. I'm a big believer in grazing. And cake.


You can't argue with it.

Modern Medicine

Enough said.

Friday, 11 October 2013

Funny Hospital Moments

I know tomorrow is going to be hard and horrible. And I know there'll be no getting away from that fact, physically or emotionally. And that's ok. I will go through it and come out the other side.

But for tonight I wanted to distract myself, just a little, by thinking of some things that have happened this week that have made me smile or given me a chuckle. And I don't mean the moment I realised I could walk again. Moments like that deserve a post of their own I reckon.

I mean silly stuff that cheered me up even when things were looking pretty bleak.

1. people repeatedly asking me if I'd "mind" a male nurse or support worker helping me. What is with that question?! I don't give a flying monkeys what gender the person is who helps me off the toilet. Send in Johnny Depp or fucking Santa Claus if you want! I'm not looking to date the guy, I just need them to help me up!

(On a serious note I understand its about privacy and dignity but it's a slippery slope when a HCP's gender is seen as an "issue". What about male midwives? Or females working in urology? Who decides what's appropriate? Where do you draw the line?)

2. As an inexperienced student nurse tried desperately to take my pulse manually, I tried to ease her nerves by joking "Don't worry, I've definitely got one" Unfortunately it passed her by as sweating and deadly serious she simply said: "Oh, I know".

3. This scenario, every single night in the middle of the night:

Me: Totally horizontal and sound asleep.

Support worker/Student nurse in an exagerated whisper: "DO YOU MIND IF I TAKE YOUR BLOOD PRESSURE?!"

Me: "Urngh" (Stick arm out of covers)

BP: 82/46

Support worker: "Your blood pressure is a bit low, you need to drink more..." Pushing a jug of water towards me (Bearing in mind that this is usually at 2am or 6am!)

Or, in the case of the aforementioned student nurse: "Erm...erm..." (Runs away)

I swear this happens every night! But I'm 28 FFS! And until summer I was running regularly. Why on earth would I need a systolic BP over 100 when I am completely asleep?!

After my 1st dose of IVIG my BP was 140/75 and I thought my head was going to blow off!

4. Whilst showering me in the hospital bathroom Chris said in a sad voice "It's not even sexy. You're just too ill". Haha. I think he can rest assured that you've got to be a pretty sick puppy to find shaving your newly paralysed girlfriend's legs sexy in any way. Sweet? Yes. Loving? Definitely. Sexy? Absolutely not.

5. Ordering a tuna salad for lunch 3 days in a row and never getting it. Tuna is like gold dust in this place. On one of the occasions I was asked if there was anything else I fancied. I asked if they had anything similar like maybe a cheese salad or a tuna sandwich? "No, but we've got a jacket potato with cheesy beans" ?!?!

6. A young pharmacy technician insisting he had to lock my Tesco Folic Acid 400mcg away in my drugs locker

7. The moment one of the sisters on AMU popped her head around the curtains and found Emma kneeling above me on the bed waxing my eyebrows and thought she was a doctor. This makes me laugh just thinking about it.

8. Chris' confession that at home the boys had been wearing mis-matched pyjamas "but they've had a bath every night!" God I love him so much. Both that he knew it would drive me crazy, and the fact that imagining Rudy running around in his Batman pyjama top and Green Eggs and Ham pyjama bottoms does in fact drive me crazy, even with everything that is going on is hilarious.

The Blow

Written on Wednesday 9th October

"I'm sorry". Two words you never want to hear coming out of your sonographer's mouth.

Our baby, who we saw less than 3 weeks ago, measuring 5mm with a nice strong heartbeat today measures 7.5mm but has no heartbeat.

My 5th pregnancy: my 3rd miscarriage. I can't believe this is happening again. And on top of everything else that is going on right now it seems especially cruel. Can my body actually do anything right?!

Written on Friday 11th October

Those of you reading this may be wondering what you missed. You may be tempted to scroll back through my old blog posts or facebook timeline looking for the "I'm pregnant!" announcement. Don't bother. There wasn't one. You see, the day I discovered I was pregnant was also the day I was diagnosed with Guillan-Barre. This baby was conceived when so far as I knew I had "sciatica" not a debilitating and potentially life-threatening neurological condition. So how do you make an announcement like that? "I can't dress myself but hey guess what- we're having another baby!" The answer is simple: you don't. So, for the past 6 weeks only our closest family members and friends have known.

The baby was very much planned and wanted and loved and has given us all something positive to focus on and look forward to.

It was also one of the reasons I wasn't treated with immunoglobulins during my 1st hospital admission. Not only were my symptoms quite mild at that point but the risks were too high.

Given my condition, and my history of miscarriage we decided to pay for an early private scan to ease our minds. In a tiny room in the centre of Stockport the wonders of ultrasound gave us a view into my retroverted uterus and sure enough there was a beautifully round pregnancy sac, containing the beginnings of our baby- a blob measuring 5mm with a flickering heart beating 122 beats per minute.

That something so tiny can have a heartbeat is mind blowing in itself. To see it nestled in there, oblivious to my struggles with Guillan-Barre and most importantly unharmed by them was amazing.

I have never had a miscarriage that started out with a positive scan so I felt pretty confident that all would be well. I decided that the most important thing I could do would be to concentrate on getting better. For myself, for my family and for the new little life inside of me.

After such a positive scan we decided it was probably safe to tell the boys. Afterall, we reasoned, Toby would soon guess anyway as we talked about it in front of him and in my last pregnancy I started to show at 11 weeks.

Toby was so excited. He's been begging for "a new baby" for months. Each day he'd tell me my tummy was getting "bigger and BIGGER!" (At 7 weeks pregnant- thanks kiddo?) and he was firm in his belief that the baby would be a boy because he wanted "another brother" Secretly both Chris and I thought the likelihood was he was right but took care to remind him that we couldn't actually choose and "a baby sister might be fun too..."  He was unconvinced.

I now wonder how I found it in me to be so blissfully naeive as to think it would all be that straightforward and easy.

After my readmission to hospital and my treatment with immunoglobulins I was told that this pregnancy would be considered "HIGH RISK" I grumbled to Chris "No homebirth for me then" but we both knew I didn't really give a shit. I loved my homebirth with Rudy but I love Rudy himself infinitely more. I was such a cliche: "All I want is for it to be a healthy" I'd say to the nurses who all assumed I was yearning for a girl after 2 boys. "Oh, and for me to be able to walk please!" I'd add.

I decided that if I could pull this off, recovering from Guillan-Barre and bringing another beautiful baby into this world then I'd have dodged a bullet and should never ask for or complain about anything ever again. Ever.

After consulting with obs&gynae the medical team decided I needed an ultrasound before home. Chris turned up to visit with the boys on Wednesday afternoon, just before the porter turned up to take me down there so I went on my own. I was feeling pretty confident right up until the sonographer said she'd need to do an internal scan. I've had a lot of scans in the past 5 years and if someone tells me at 9 weeks and 5 days pregnant that they can't see anything abdominally then I know it's not going to be good news. Retroverted uterus or not.

Sure enough, silence filled the room for the first few minutes of the internal scan and then came the "I'm sorry". A second sonographer came to repeat the scan but came to the same conclusion: There was no heartbeat.

They sat me in The Room whilst I waited for the porter. You know The Room. I looked around it and thought about all the awful things people must have been told in there. A room who's sole purpose is to contain all the sadness and tragedy and horror that an ultrasound can uncover. I cried and thought I was glad my situation wasn't worse and I was glad that Chris and the boys hadn't come with me.

Back on the ward I couldn't find the words I needed so I just shook my head at Chris. Between that and my mascara-lined cheeks it wasn't hard for him to guess the outcome. It was the first day in weeks that I'd felt bright enough to put make-up on. Which is somewhat ironic.

Toby asked why I was sad and I realised there would never be a good time or an easy way to tell him. So I had to explain to an almost 4 year old why we won't be "getting a new baby in the spring" afterall.

I told him I was sad because the scan had looked in my tummy and that the new baby had gone away. He cried and wanted to know why. I told him that we don't know but that sometimes it just happens and that it's ok to feel sad about it. He said "but I liked our new baby". I told him that maybe maybe when Mummy gets better maybe I could try to grow another new baby but even as I was saying it I wasn't sure if it was true.

Thankfully, he then spotted some blue pen marks on my wrist from the nerve conduction studies and asked about them so the conversation came to a natural end.

Of course I wasn't quite factually accurate in my explanation. The baby isn't gone. The baby is still there but it seems to have stopped growing about 2 weeks ago. Maybe when I had one of my falls. Or maybe just "one of those things". Like my last miscarriage though, my body is determined to hang on to it. It's a cruel world when your body can't even miscarry properly. I knew right away that I would want an ERPC. Unfortunately it's not an option for me. Too risky and apparently no anaesthetist in their right mind will go near me because of the Guillan-Barre.

So my options were to go home and wait and hope my body would eventually get the message. Or stay in hospital and have my miscarriage medically managed. So yesterday I was transferred from AMU in MRI to gynae in St Mary's (which in actuality are just down one long corridor from one another) and here I will be essentially 'induced'.

Maybe I was greedy to think I could have it all. That I could walk out of hospital, cured of Guillan-Barre and back into my wonderful life and have a healthy baby in my arms come May.

Still, I can't help but feel like I was robbed when my back was turned. The minute I stopped worrying about the pregnancy and started concentrating on getting myself better, it was over.

Except it isn't over. The worst is yet to come.

The Stairs

Written on Thursday 10th October

I just passed my stairs assesment! Woot woot. It was a pass/fail sort of thing but if it had been graded I reckon I'd have got an A-

Good attitude, ability to follow instructions and enthusiasm. Points deducted for nerves, occasionally forgetting where my crutch is supposed to go and speed (or rather, lack of it).

I can't believe that in just one week stairs have gone from being my arch nemesis to being just another normal everyday thing that I can manage. Admittedly with a lot of extra effort and a crutch but even so.

We no longer need to consider bungalow living, unless we want to. There is a certain appeal to it that I keep coming back to- of having everything right there on the same floor. Plus I like that it's a bit different and non-traditional, in this country at least.

On the other hand, the dog could and would go anywhere he liked. Cat fur on the bed is bad enough, Fudge sheds about a guinea-pigs' worth of fur each and every day. And cooking smells would get everywhere. Plus, it's just not very sexy is it, if we're honest? Living in a bungalow under the age of 30?

So, it's good that we now have other options :)

The Shocks

Written on Wednesday 9th October

So I have just returned from the strangest experience of my life, which involved sitting on a bed and.being administered a series of electric shocks in my feet, legs, hands and arms by an Irish doctor who must surely have one of the most bizarre jobs available in the NHS: Neurophysiologist.

The shocks themselves ranged from the mildly curious and slightly irritating to the profoundly excruciating and although I think I did a pretty good job of being brave (which is to say- I didn't cry, scream or punch anyone in the face) it would have been obvious to anyone in the room, from my sweaty palms and screwed up face that I wasn't exactly feeling relaxed.

Mid way through my torturer, sorry I mean doctor asked me where I was from. My brain, clearly scrambled from the pain could not compute..."From? You mean, like where was I born?..." He probably thought I had some kind of learning difficulty. "Yes, where are you from originally?" I told him Yorkshire and he seemed surprised. When I asked why, where did he think I was from both he and the nurse/technician (she never actually introduced herself so not sure of her official role) answered in unison "Welsh".

That made me laugh. I explained I had been living with a Welsh man for 9 years so maybe I'd picked up a twang or something. Although I'm certain his family would find the suggestion hilarious.

The results of my torture, sorry I mean Nerve Conduction Studies were abnormal. Which is good, in a funny sort of way, because it confirms what we already knew- that I have a demylenating (sp?! neuropathy aka Guillain-Barre Syndrome or possibly CIDP (the chronic version) but the neurophysiologist said that my results this morning are more indicative of an acute episode, which is very reassuring.

Being electrocuted and mistaken for being Welsh: what a morning.

The Plan

Written on Wednesday 9th October

The plan from neurology, when it came was simple: IMMUNOGLOBULINS.

A medical registrar I'd never met before came to tell me and to explain the risks. Chris was with me at the time and she told us that the biggest risk was of developing a blood clot but that they would try to reduce that by prescribing an anticoagulant. She also explained the risks of reaction and that there was a tiny chance of it causing abnormalities in my pregnancy.

I'd like to say that it was a huge decision to make, that we deliberated for hours, weighing up the risks vs reward, but it just isn't true. A couple of minutes of hesitation was all it took.

At that time I couldn't move independently at all. So yes, I worried about the risks, and yes even now I feel horribly guilty that I consented to something that could potentially harm our baby, but what kind of life could I lead without the use of my arms or legs, what kind of mother could I be to the 2 children I already have?

The chance of the immunoglobulins having a significant impact on my condition far outweighed the small possibility of harmful effects. To say yes was an obvious choice.

(And yet here I am, trying to justify it on paper).

I had my first IVIG (if you think I'm typing Immunoglobulins each and every time you can think again!) on Friday evening (the same evening I had to be picked up off the bathroom floor). On Saturday morning I could get off the toilet by myself. By Sunday morning I could shower by myself. By Monday morning I could walk alone with 2 crutches. Yesterday morning I went down to 1 crutch. I had my final dose yesterday evening and aside from a headache today I feel like I could take on the world! (Or at least be a functioning part of it!) It has been a truly amazing transformation.

Each bottle of IVIG comes from 1,000 individual donors. I weigh 68kg so was prescribed 30g but as the hospital don't supply 30g/300ml bottles each evening I had 2 bottles- a 20g/200ml and a 10g/100ml. Over 5 days that means along with all the doctors and nurses and researchers and drug companies and whichever brilliant bastard came up with the idea in the 1st place 10,000 strangers who could be arsed to go donate blood contributed to my recovery. 10,000 ordinary people who had a needle in their arm and a brew and a biscuit on their lunch break and I can walk again. That's pretty damned amazing I think you'll agree.

Thursday, 10 October 2013

This time...

Every year for the past 3 years I do at least one or two facebook status updates along the lines of: "This time last year I had just become a Mum for the first time!" Or "Look at the difference a year makes" (Insert photo of 2 year old Toby vs 3 year old Toby).

I just can't help myself. I like time and dates and the marking of important ones. Anniversaries, birthdays, even sad things stick in my mind. I keep all my old calendars and diaries and sometimes when I come across them (usually when we are moving house, which we do A LOT) I like to flick through and see what I was doing back then, what day of the week was it? Did I have any appointments? Was I pregnant? On maternity leave? Or at work? Were we in the process of moving house (AGAIN)?!

Maybe I'm weird. Maybe I should spend less time looking back and more looking forward- especially now, with my limited mobility and all ;)

Seriously though, I think so long as you're not dwelling on what can't be changed then a glimpse into the past can give a sense of accomplishment and bring a lot of joy and good memories.

Well, this time 2 years ago I was in labour with Rudy. I'd been contracting steadily at home for about 22 hours at this point but things were just starting to ramp up, although I hadn't called the midwives yet but Chris was inflating the birthing pool, blissfully unaware that the end of my labour would be fast and furious and that our baby would rush into the world at 3.16am tomorrow, born in his waters on to the sofa just 11 minutes after the midwives' arrival.  The birth pool would stay uninhabited until Chris and Toby took a dip the next day.

Fast forward 2 years to present day. I lay in a hospital bed, recovering from Guillan-Barre Syndrome and waiting to miscarry what would have been his baby brother or sister.

I have a lot to feel sad about tonight. But I know I have even more to be thankful for.

The Fall

(Written on Tuesday 8th October)

One day you will find yourself in a situation and you won't be able to believe it is really happening to you.

Hopefully yours will come when you're riding an elephant or swimming with dolphins or perhaps when holding your very own baby in your arms.

I've had a few but by far my most unbelievable came 10 days ago, on a Monday afternoon when I found myself sat at home, on the toilet and unable to get up. A situation that I had dreaded happening to me at 80 was suddenly a reality at 28.

You see, the consultants prediction- that I hit my plateau 6 weeks ago turned out to be incorrect and as of 12 days ago I found myself steadily deteriorating.

First it was the stairs. They'd always been an issue but suddenly they loomed like everest, mocking me everytime I approached their summit in need of a pee. After 1 actual fall down them and a couple of near misses they began to represent something more than just an obstacle to stress-free toileting. They were the epitome of my absolute failure to live life as a 'normal' person and my body's total non-compliance.

Still, I wasn't defeated. Even when I had a panic attack on the top step and found myself hyperventilating into Chris's arms. I didn't realise I was having a panic attack, I thought I was dying. I thought the Guillan Barre had finally got to my respiratory muscles and that I was done for. Chris, on the other hand with his experience and objectivity, could tell tdespite my protestations that I "couldn't breathe" that I was in fact hyperventilating, and certainly the tingly lips and dizziness that followed supported his theory. Even then, I wasn't defeated- afterall, there was always 1-storey living. Bungalows became my obsession.

On Thursday morning I collapsed in a heap on the bedroom floor on my way back from the bathroon. Chris was walking with me at the time, having already lifted me out of bed to go to the toilet, walked me there, waited outside the door for me and then lifted me off when I was done. Even with all that I still couldn't manage. I still wasn't safe at home. And that's when I had to admit defeat and return to hospital.

Unlike my last A&E experience- 9 hours of nonsense without so much as a glass of water, Thursday was positively efficient in comparison. 30 minutes to be triaged, about an hour in a cubicle in minors and then 2.5 hrs in a room in "ambers", most of which was spent undergoing the most thorough neurological exam I have had since my Guillan Barre journey began.

A lovely, perhaps slightly stressed, junior medical Dr ascertained that overall I was in fairly shitty shape. Not that he used those words as he was about as 'proper' as you can get without being a fictional character. Maybe it's just me but I find it reassuring to be under the care of someone who speaks the Queen's English. Perhaps it's the assumption that if someone takes so much care to enunciate properly then they'll be equally as attentive when it comes to my medical care. I don't know.

In any case, I had absent reflexes, couldn't distinguish between blunt and sharp touch, couldn't raise my left leg off the bed, couldn't raise my arms to 90 degrees when bent, couldn't touch my finger from my nose to the Drs finger with any speed or accuracy, couldn't stand or walk. Like I said, pretty shitty.

Unsurprisingly I was admitted but with no clear plan other than CONSULT NEUROLOGY.

If I'd thought needing to be lifted off the toilet by my boyfriend was to be my lowest point, I was sorely mistaken, as Friday night confirmed when a sit to stand from the toilet turned into more of a sit (on the toilet) to a sit (on the floor). Not a fall exactly so much as a drop. 2 support workers were 'helping' me at the time but genuinely weighed about as much as I do combined so it's hardly surprising it ended badly because: PHYSICS.

Fortunately my nurse for the night was of a more useful physique and after checking that I wouldn't mind him coming in to help, he lifted me off the floor like it was something to which he was accustomed to doing several times a day and no longer gave a second thought and then apologised for hurting my armpits.

If my feelings when stuck on the toilet at home were shock, horror and disbelief then by Friday when being scooped off a dirty hospital bathroom floor by a total stranger with my pyjamas around my knees my feeling was pretty much numb gratitude.

You see at home I'd been in denial- no I don't have GBS, there's been some kind of mistake, let's try to continue as normal and pretend this isn't hapening. Then, when it WAS happening and I genuinely could not get up I was angry- no no no No! This isn't part of my plan! I was frustrated and heartbroken.

By the time I was an inpatient again I'd reached something like acceptance- shit, this really Is happening and it's happening NOW and TO ME and I'd stopped fighting against the inevitable and accepted that, no matter how much I hated it there were things I couldn't do. Things I'd never dreamed I'd need help with but that I now did.

My frustration multiplied but was sidelined by fear. Terror actually. I made a pact with myself that Ok, I would accept that this was happening and that I need help but only if it wasn't going to be forever.

Saturday, 28 September 2013

Glass half-empty? Or full of shit?

Imagine if you will, that you arrive home one day to discover your house has been burgled. Half of your life's belongings, ranging from the valuable to the priceless have been taken.

I'm willing to bet that most people's reactions would be "For fuck's sake! I can't believe the thieving bastards have stolen half of my stuff!"and not "Oh least they only took half of my stuff"

I don't think that is anything to do with whether or not you're a so-called optimist or pessimist. I think it's just human nature.

Maybe later, weeks down the line you may get to a point where you think "Well, it could be worse, at least they didn't take my cat / glasses / signed copy of my favourite book / whatever" but most normal people need a period of disbelief, of shock, horror, grief and anger first.

If the morning after you were burgled, a well-meaning friend or neighbour suggested you were lucky, and encouraged you to look on the bright side, you'd probably be less inclined to agree with them than to punch them in the face. Or maybe that's just me?

This is relevant why? Well because it provides a good analogy for my life at the moment.

Only rather than coming home to a ransacked house, I woke up one morning in a body that no longer operated as it should. And as I struggle through each day, trying to continue with life as best as I can with limited functioning and mobility people keep telling me "It could be worse".

This is a moronic statement, akin to "smile, it might never happen". Yes of course it could be worse. There are not many situations that are so bad they couldn't possibly be worsened in some way. But let's be honest, if you're telling someone "It could be worse" then it could probably also be a lot better.

I can think of hundreds upon thousands of things that I'm sure are so much worse than having Guillain Barre Syndrome that they're incomparable. Does that mean I should feel delighted in some way that my situation is only as bad as it is?

Or perhaps, am I allowed to feel sad, scared, and down right pissed off?

Am I grateful I didn't end up ventilated on ICU? Of course! Am I devastated that this has even happened to me in the first place? Damn right I am!

It would probably be easier for me to "look on the bright side" if I could dress or undress myself without assistance. If I could pick up my own children. If I had made any progress at all since being discharged from hospital over 4 weeks ago. If I'd had even a glimmer of a hint of improvement or recovery. Maybe when getting up from a sitting position doesn't take every ounce of effort and energy I can muster, maybe I will have some leftover for "counting myself lucky".

Until then you'll have to excuse me if I continue to have moments of panic, terror, depression and fury. You see my glass is neither half empty nor half full. I'm just human.

Wednesday, 25 September 2013

Having it ALL. In a house.

We're deep into house hunting mode and I can't see the wood for the trees. Street names, floorplans and school catchment areas are flying around my head as I type this.

We've viewed three houses so far this week, which given we only found out we had to move on Saturday night is not bad going. Alas none of the three have been perfect. You see, in fact there is no such thing as the perfect house. Unless you have a limitless budget, in which case the (real estate) world is your lobster (to quote one of my nursing tutors there, I love it when phrases go awry). Sadly our budget is indeed strictly limited, so our quest to find the right size house in the right area that ticks all our boxes continues.

They say you can't have it all, and when it comes to houses you definitely can't. Ideally we'd like to stay in this area, but we also need a decent amount of living space and because I feel shitty that the boys are having to move again (this will be Toby's 3rd move and he isn't even 4 yet) I would really like them to gain something from it, compensation if you will, in the form of a garden with real grass, or a bigger bedroom, or a playroom to replace the one they have here.  But to get all that we'd need about twice as much money as we actually have OR we have to look at other areas.  See it really is impossible to have it all.

Especially, it turns out, if you also have pets. Just the word itself is enough to cause a visible shudder in an otherwise perfectly composed letting agent. Today I was told by once such agent that "Pets and renting don't mix I'm afraid!"

As though that nugget of wisdom from her was going to revolutionise my world view to the extent I'd be prepared to book my dog in for the next available euthanasia appointment.

I have been a tenant for the past 12 years and for the last 8 of those I've had a cat and the last 7 I've had a dog. In those 12 years I have lived in 2 flats and 4 houses and never once has either myself or either of my furry little companions (or indeed Chris or the kids) caused any irrepairable damage. And on only one occasion have we ever received less than our full deposit back, and that one occasion was last year when we voluntarily gave up about £80 of it to pay for a cleaner and gardener to tidy up after us because we didn't have the time.

Still, the chances of us finding our perfect house on our limited budget are slim.  Add pets (shock, horror!) into the mix, and it just aint gonna happen!

Right now my brain is a battleground- which is more important- the right house or the right location? And what constitutes the right house, the square footage? The feel of the place? How long we'll be able to stay there before being turfed? And what constitutes the right location? Our current area because we're settled, or make a break and try somewhere new? And don't even get me started on the schools issue. Having just been through the schools saga, having viewed 3 of our 5 local schools and finally decided on a favourite and applied for a place, I now find we're in a position where we may not even live in the catchment area for it anymore in a few weeks time.

These are all questions I could have well done without pondering at the same time as dealing with my illness and disability but now find myself worrying over all hours of day and night.

If anyone has any of the answers please let me know.

Monday, 23 September 2013

The Flood

They say it never rains but it pours. Right now it would appear to be fucking monsoon season in my life.

I was just sitting around with my Guillain Barre and thinking, "You know what might be fun? How about we move house in the next couple of months?!"  So we are.

I am of course joking. About the first part at least. One of the shittiest things about renting rather than owning your home is of course the fact that it's never really yours.  And thus, the people to whom it actually does belong can have it back any time they want, and that's the position we find ourselves in right now (and the position we found ourselves in 3 years ago...and 2 years before that...)

Yep, we've moved a lot.  Four times since 2008 to be exact, not including this move we now have to make.  Two of those moves were our choice (moving out of a place we couldn't afford, and then later moving out of a 2 bed place that was too small) but the other occasions have been like this one- we'd like to stay but we can't.

To say I am devastated would be an understatement. We've only been here 16 months, the kids are settled and happy, we've just applied for a primary school place for Toby...To say that it is going to be a logistical nightmare would be even more of an understatement. I struggle to walk, or even dress myself some days. Quite how I am going to pack up our entire belongings into boxes and transport them somewhere else is entirely unclear at this point.

First things first we have to find the somewhere else...

Anyone got a spare house lying around?!

Thursday, 19 September 2013

The Funny Thing (Part 3)

D-Day (Diagnosis Day) came on Thursday 29th August, when, armed with my Lumbar Puncture results the medical consultant informed me that it was "highly likely" I had Guillain Barre Syndrome and that they wanted to transfer me to a neurology ward at Hope Hospital where I could be observed, and if necessary, given treatment in the form of Immunoglobulins.

I called everyone who needed to know to notify them of the news and tried to prepare myself mentally for a longer stay in hospital.  Then after lunch I was seen by one of the neurology consultants from Hope, who after reviewing me, and my LP results decided that all things considered I may not need to be an inpatient after all. By that point it had been 3 weeks and 1 day since my symptoms had first presented, and I'd been stable, with no worsening of my symptoms, for a few days. He wasn't keen to treat me with Immunoglobulins as they're most effective if used soon after symptoms begin, and at that point were unlikely to affect my long term outcomes. He asked how I felt about going home. I could have kissed his shiny bald head but settled instead for "I'd love to" and he said I could so long as I agreed to come back if I deteriorated (obviously) and that I'd need to be seen as an outpatient in clinic in 6-8 weeks time.

So, just as they'd sorted out my transport to Hope it was cancelled and they started my discharge paperwork instead.

Coming home was surreal. Everything was the same but I wasn't. So there I'd been, in hospital thinking I was actually doing pretty well, mobilising around my little side room and suddenly at home I discovered I could barely make it off the sofa (too low and squishy) and don't even get me started on stairs. Bungalow living is the future, I'm telling you.

I think I cried every day of my first week back home.  Everything was so much harder compared to in hospital, and the shock of how much I'd deteriorated without knowing and how little I could really do was hard to bear.  I also couldn't, and still to a certain extent haven't, really come to terms with my diagnosis.  So much about my clinical presentation didn't quite fit GBS (which is why I suppose they kept me a week before doing an LP) that when I was discharged I kept thinking "What if they're wrong?"

In case you're wondering, googling doesn't come up with anything reassuring at all, the top 3 internet diagnoses for my symptoms are Multiple Sclerosis, Guillain Barre Syndrome and Parkinsons.  So out of the three I seem to have the best possible outcome (although also the rarest).

It's now been exactly three weeks since I was discharged and just over six weeks since that morning I woke up with "a dead leg".

In six weeks I have gone from being an independent, self-caring 28 year old, working part time, raising two young children, doing (let's be honest) the majority of the housework, walking, driving, swimming, hell even occasionally running, to...this. The new, hopefully temporary, version of myself.

I can walk.  Not well, not fast and not very far but I can do it. I can just about dress myself, it takes time and I can't fasten my own bra but since I rarely leave the house that isn't as big a problem as you might think.  I can shower myself but I can't wash, dry or straighten my own hair, or even tie it in a bobble some days. I can get in the bath but not out of it.  I can make myself a drink although I need both hands to pour the kettle and I wouldn't exactly say it's safe. I can make a sandwich. I can put clothes in the washing machine and take them out again.  I can just about dress my children although only if they're co-operative (ha!) and even then it takes a while and socks are a massive challenge. I can change a nappy, just about.

I struggle with stairs. They're a necessary part of my everyday life but also the bane of my existence. I have to have both hands free, and I have to go one step at a time. I fell down the bottom half of the stairs last week as one of my legs just randomly gave way and it was terrifying (and painful).

I can't work (obviously) I can't cook, or clean, or take my children out on my own. I can't drive, or swim. I doubt I'll ever run again.

I feel like a lot of the things that make me who I am (being a busy young Mum, working nights, getting out and about most days, being independent etc) are no longer true, in which case, what is left? Who the hell is this person who need someone to open packets for her, and wash her hair and put on her shoes?  I have no idea.

Friday, 13 September 2013

The funny thing that happened (Part 2)

So, where were we? Ah yes, i remember now- A&E. In total I spent 9 hours there, without so much as a drink of water or a comfortable chair. In defence of my local emergency department it was a busy bank holiday Friday afternoon and apparently my arrival with a letter had confused matters. At one stage (5 hours in) a porter arrived to accompany me to the gp referral unit, and I briefly thought things were looking up (comfy chair, jug of water, no bed but a stretcher with a sheet!) but just as quickly it turned out to be a mistake as it seems the medical consultant on call had advised my gp I should attend through A&E and be seen by the A&E doctors rather than go to the gp referral unit so just as quickly I was back in A&E again. Eventually, around 7.30 pm it was decided I would be admitted and at 9pm I found myself crying (again) this time on AMU (Acute Medical Unit). Faced with spending a night away from my boys, alone, in a hospital bed, I may have freaked out slightly. It probably didn't help that the medical registrar who'd decided to call his consultant and have me admitted had scoffed at my suggestion that "it might be a trapped nerve?" and told me I definitely had something neurologically wrong with me. Up until that point I'd been kidding myself it wasn't that serious. Suddenly here I was in an actual hospital bed. So I did what any sane rational person would do and resigned myself to my fate and got a good night's sleep  had an emotional breakdown at the nurses station and threatened to discharge myself.  Fortunately, I had a lovely nurse who calmed me down and had the consultant on call come talk to me and give me a more balanced, and accurate picture and plan and I did eventually fall asleep, which is hardly a surprise since at that point I'd been awake since about 10am the day before, so about 39 hours or something ludicrous.

The following morning I was seen by a neurologist who was considering having me transferred over to another hospital with a neuro specialist centre and access to an MRI scanner over the weekend but since I didn't appear to be deteriorating rapidly they decided instead to keep me and do it on the Tuesday instead. I got moved from AMU to ASU (Acute Stroke Unit) at about midnight that night, which was slightly alarming but thankfully I was only a medical outlier. There I had a lovely big side room with a huge one-way window (like in interrogation rooms in the movies) and my own en suite bathroom so even though it still totally sucked to be stuck in hospital missing my boys all weekend, it sucked slightly less and at least I was getting a good night's sleep (aside from the 2am and 6am observations that is).

Finally it was Tuesday! I had my MRI scan around 2pm and I was told in the evening that my MR Spine results were back and aside from "mild degenerative changes" it was all normal. I was a bit concerned that my MR Brain results weren't available but I was assured that was pretty normal and that they'd probably be back in the morning. Well, the following morning they still weren't back. The junior doctor I'd asked, asked me "Did you definitely have brain done?"  I still don't understand how I would know the answer to that question?! I was lay completely flat on a shelf and inserted into a machine, in which I had no concept of time. It made loud noises and sometime (Maybe 30-40 minutes or so?) later I was taken out. It eventually transpired that an MR Brain and Spine had been ordered by the neurologist but for some reason when I was there radiology had only scanned my spine.

By Wednesday I had reached Pissed Off Fever Pitch. I had stewed in hospital for days awaiting this urgent MRI scan of my brain to find out what in the hell was wrong with me and now I'd found out that only my spine had been scanned. They doctors kept mentioning Guillain Barre Syndrome and lumbar punctures but the stroke consultant seemingly didn't think it was appropriate for them to "get into" that on his ward and wanted me moving to a medical or neuro bed (of which there were none). Eventually I kicked up a fuss. Not trying to be awkward and make people's lives difficult but sick of being speculated over and not getting any answers I told the consultant that I was considering leaving. He told me "You surely know, given your profession and your intelligence that there is something wrong here and it wouldn't be a good idea to go home as you are". To which I replied "I also know that if you truly thought I had Guillain Barre you would have done a lumbar puncture already!" He asked me to bear with him while he "called a colleague". An hour later he was back, under instruction from his neurologist "friend" to do a lumbar puncture that evening and to notify him of the results once they were available.

So 6pm saw me hunched over a stack of pillows resting on a table having a ginormous needle inserted into my spine. I tried to be brave but as he put the needle in I got the most diabolical pain in my left leg, a bit like how I imagine it would feel to be shot and as he wiggled it in further it happened again, so by the time the needle was in and my CSF was dripping into the pots at an agonisingly slow pace my eyes may have been watering just a little. In the end he took it out and tried again and this time seemingly struck oil and everyone was desperately unscrewing lids off pots to catch my gushing CSF.

Afterwards I had back ache and head ache and was instructed to lie still and flat on my (sore) back for 3-4 hours. I was given 2 co-codamol (which to me, is like a bag of heroin, I'm so sensitive to codeine) so I duly obliged, dozing in and out of consciousness until I desperately needed to pee, fortunately enough time had lapsed that I was allowed to potter to my toilet rather than any less dignified toileting options.

That night was the first night I actually felt like a patient proper.  I was sore, I'd been jabbed (five times in total as after the LP my veins had seemingly retreated so it took 4 attempts to get bloods) I was in bed with a nurse call bell and I was a step closer to actually having an idea what might be wrong with me.

Alas, my wrists fail me yet again and you'll have to wait, with baited breath (I don't think anyone is actually reading this, I'm just amusing myself here) for the next instalment.

Thursday, 12 September 2013

A funny thing happened (Part 1)

Funny odd, not funny haha. It wasn't the least bit amusing I assure you.

So just over 5 weeks ago I woke up one morning and my left leg felt like it had gone 'dead'. You know, like I was awake but it was still asleep? Well, I just figured I'd slept on it funny or something and got on with my day.  I noticed it was slightly weaker than usual, as though I didn't have as much strength in my calf muscle as normal but I still managed to get on with life without it being too much of a bother. That night I noticed I had pins and needles in my toes and heel and that the sole of my foot felt numb, I guessed it was related to the weakness in some way but still wasn't sure what was going on and although the buzzing sensation made it hard to sleep, other than that life carried on as normal for a few days. When it started to get worse rather than better, and I was walking with a limp and finding stairs difficult, I went to see a doctor. A locum at my GP practice diagnosed me with "sciatica" and sent me away with an instruction to exercise more and a prescription for some ibuprofen gel (which I didn't bother to fill, since I had no pain or inflammation at all).

Almost immediately after that the weakness began in both my arms as well, accompanied by pins and needles in my fingers.  It was subtle at first, I noticed pushing the buggy was harder than normal, I struggled in confusion when lifting the kids in and out of their car seats.  One evening I decided to bath rather than shower and couldn't lift a jug of water to rinse my hair, I came downstairs and complained to Chris that I was feeling weak and pathetic and he had to comb my hair for me because I didn't have the strength to do it. I knew something wasn't right but it wasn't until I went to work 2 nights later that I realised how bad things had got. Once there, I realised that at home I had been adapting my every day tasks to accommodate my weakness but at work I couldn't do that.  I struggled to open medicine bottles or tear open packets of IV fluids, I bent down to sort out an IV pump and couldn't get back up again without grabbing on to the desk to heave myself up. My hands shook and hummed and buzzed almost constantly.  It was a busy shift with 2 admissions and I barely sat down all night. When I drove home that morning I kept missing my gears, and my left leg had a tremor so bad I had to put the hand brake on every time I paused for even a minute as I couldn't keep it still on the clutch. On a couple of occasions I came close to crashing and for the first time, since my problems had started a fortnight before I actually felt unsafe to be behind the wheel of a car. I got home and collapsed, literally in to a chair, and felt like I would never be able to move again.

Chris suggested I go to A&E or at the very least make an emergency GP appointment, but I didn't want to see another locum, and anyway I was adamant I had to be back at work for my 2nd shift that night so I struggled up the stairs to bed where I sat and cried, wondering what the hell was wrong with me.

I called my GP surgery and said that I understood there wouldn't be any appointments left for that day but asked if it would be possible to at least speak to a Dr on the phone, the receptionist said that my GP would call me back at 11am. She then rang back almost immediately after I hung up to say that actually, if I could get to the surgery for 11am she would in fact see me.

My boys joined me in bed for a cuddle. I was exhausted but wired, and literally buzzing so didn't think I'd be able to sleep. Toby offered to sing me a lullaby. Chris told me later that by the time he'd finished his rendition of "Jack and Jill" I was out like a light.

At 11am as promised I was called through to my Dr's room, I sat down on the chair by her desk and she said "What can I do for you?" to which I burst into tears and through hiccuping sobs explained what had been going on. I should explain that my GP is brilliant and when I'd finished she simply said "That's not right. This needs investigating" After performing a few examinations and establishing I did indeed have a significant weakness, particularly in my arms she rang the medical consultant on call at MRI and arranged for me to be seen and then sent me with a letter to A&E where the next stage of my saga began.

And as this is becoming somewhat epic and I am increasingly struggling to type I'll have to leave it there...

Stay tuned for part 2!

Friday, 12 July 2013

Who Are You?

I wrote this draft post in March but forgot all about it until today, when I came across something on Twitter that got me thinking about roles and whether "Mother" is a defining one.

Basically someone was asking, in a way which clearly indicated where their own personal feelings lay on the matter, why some people feel the need to have "mama/wife/mum of two" etc on their Twitter bios.

In the interests of full disclosure, this is my Twitter bio:

So clearly I come down on the other side of the fence on this one.  Although, you may have also noticed my bio has an element of "tongue in cheek" about it so is perhaps not to be viewed as me making a statement, so much as me struggling to sum up 28.5 years of existence in a couple of lines.

Similarly, there's no way I could limit my opinion to 140 characters either (when can I ever?!) so I decided to dig out this old blog post and publish it, unaltered (aside from a couple of typos!) and here it is:

What Remains?

I think it's widely suggested, if not necessarily agreed upon, that parenthood has the ability to, at least temporarily, if not permanently alter, blur, or let's face it, completely obliterate one's identity.

For me, and I really can only speak for myself here, it started when I got pregnant. I'm sure, in fact I know, there are people out there who conceive babies and grow fat whilst still continuing with all their usual activities.  Ok, maybe they stop eating veiny cheese and switch to alcohol-free beer, but generally, whatever they were into before, be it hiking, socialising, live music, running, working themselves to the point of exhaustion in their jobs, rock-climbing, they carry on with it all once pregnant.  Ok, maybe not so much with the rock-climbing.  But you see where I'm going I think.

I was not one of those people.  For me, it wasn't that everything else ceased to exist, it existed, but it suddenly wasn't important (to me). All I could talk or think about was the fact that I was growing a human being  inside of me. I honestly could not quite believe it, and I suppose if we're delving into my fragile pysche here (hell, why not) there was probably some part of me that thought that if I did stop talking or thinking about it for a minute, then maybe it would cease to be.  A previous miscarriage can do that to a person.  But regardless of the why's or wherefores, that was me, for 38 whole weeks and 1 day.  I'm sure anyone who had to spend any iota of time with me during those 9 months will vouch for what a thrill it was.  A laugh a minute.

Ok, I'm exaggerating, but not by much.  I did watch films, and I did read books, although I really really struggled to finish any, for the first time in my entire life, my concentration was so bad, I'd read a paragraph and then have to go back and read it again.  And yes I did go to see Nine Inch Nails about half way through my pregnancy, and I did go on holiday just a few weeks before giving birth, although only to hole up in a quaint little cottage in Whitby where I slept late, ate fudge, drank tea, read Dracula (all the way through!) and walked on the beach.

I did see the world around me, I just felt slightly separate from it, seeing it differently now I was bringing a little person of my own DNA into it.

I also felt differently about myself.  I don't mean because I was incredibly rotund (and I really was)

I actually loved (most of) the changes in my body.  But I began to feel differently about me as a person, my personality, my traits, my choices, I started to wonder (some might say, a little late) if I was really someone who should be a parent, who could be a mother.  So I looked to society and the images I saw told me this-

Mothers are: married, financially stable although financially dependent on others (confusing much?) endlessly patient, selfless, and sensible.  They dress in a way that allows them to blend in, becoming almost invisible, their homes are clean, and tidy and beige, very very beige.

For my unmarried, financially messy, full time employed, impatient, selfish, silly self who dressed like an emo and could never be arsed with housework beyond the bare basics, and detested beige with as much passion as one can detest something so dull, it was bad news.  Really bad news.

So I did what anyone in my shoes might do.  I got a new pair. For the first time in our (at that point 5 year relationship) I freaked the fuck out about us not being married- although seemingly not enough to actually do anything about it ;) and we moved into a house where the rent cost about half as much to save money.  I cleaned and tidied in a way I never had before, finding myself heavily pregnant stood on a breakfast bar reaching up to dust a light fitting for example.  I also cut my (very long) hair (*sob*) and tried (in vain I might add) to dress in a way I thought that someone about to pop a baby out of their vagina might.  Because any smart girl knows that in order to play the part, you first have to look the part.

Then I actually did pop a baby out, and discovered that no amount of beige in the world was going to save me.  Faking it wasn't going to work, I was a mother and I'd have to figure out how to be one as I went along, and rely on this tiny little critter to help me work it out.

Thankfully, when he was tiny, who I was, or what I was about, didn't matter because all he required was sleep and milk and more milk and then some more milk, and we both spent a lot of time in the house, in our pyjamas, attached to one another, emotionally and physically.  It was really as he grew and as I stepped out more often into society as this new person, this new mother, that I began to question again: What was my role? Where was the person I'd been and who was I now? Especially when I went back to work, and people were acting like I was the exact same Rebecca I'd been when I walked off the unit 10 months before. Couldn't they see? I wondered, that I was a different person entirely?!  But was it that I was a different person? Or was I the same old me but improved and with accessories? Had I lost myself? Or found myself?

For the record, I still don't know, and even now as  mother of two small boys, I struggle to come up with the answers.

Being a mother is definitely a huge and defining part of my life, and when asked to describe myself and my life it's often one of the first words that pops out of my mouth.  Maybe people will say it shouldn't be so, and that in allowing it to be, I'm losing my own identity and what makes me me.  I'd have to disagree though.  We're all, to some extent, defined by the roles we play and our relationships to others.  I could tell you lots of stuff about myself, and what makes me tick, that doesn't involve my children, and if you're around me for any length of time I will, quite happily, but when it comes to summarising, I tend to list the roles I play in this funny show called life and often I'll start with "Mum" because that's a big fucking role, and I'll be damned if I aint getting some credit for it.

Friday, 28 June 2013

My life in numbers

Lately I can't help but feel that my life is like a series of GCSE Maths problems.

Consider this a test paper:

Q1. Rebecca has 26 weight-watchers points at the start of the day.

For breakfast she eats cereal with semi skimmed milk (6 points), for a mid morning snack she eats a banana (o points) for lunch she eats 2 slices of pizza (8 bastard points! Can you believe it?!) then, because 2 slices of pizza does not a lunch make, she gets hungry and in the afternoon she has a packet of snack-a-jacks (2 points) and, AND a chocolate digestive biscuit (2 points). For dinner she makes delicious chicken fajitas for her family and thinks "I'll be fucked if I'm putting in all this effort and not eating some myself" so she has three (16 points) washed down by a nice cold beer (oh my god, 5 points right there). Later, she's pretty stuffed but there's always room for gin, and so whilst watching an incredibly emotional episode of Angel she has one single glass with tonic and lime (2 points because SLIMLINE TONIC- genius!)

How many points does Rebecca have left at the end of her day?

TIP: The answer will be a minus number!

Please show your working, and for extra marks, explain HOW THE FUCK SOMEONE CAN LIVE OFF 26 POINTS?!

Q2. Toby is taller than Rudy but not as tall as Mummy who is about four inches shorter than Daddy. Rudy is smaller than Toby but louder than EVERYBODY. Who makes the most noise in this family?

TIP: The loudest person is usually the one who wakes up first

Please show your working, and for extra marks, explain WHAT IS WITH ALL THE SHRIEKING? AND WHO TAUGHT THIS CHILD TO SAY "NO"?!

Q3. If a 3 year and 7 month old and a 20 month old are left alone in a room together, how long does it take before there is screaming?

Please choose from the following options:

a. Long enough for the responsible adult to take a pee and return to the room
b. 0.07 seconds
c.Just long enough for the responsible adult to get her pants down and sit on the toilet

TIP: This answer may vary day-to-day!

Q4. There are 7 days in one week. Chris works 3 days and has to attend university on one day. Rebecca works 2 nights but cannot work any nights when Chris is working during the day because no one has yet invented TELEPORTING so he will not be back in time for her to leave. In addition to this, Chris works 2 part time jobs, averaging an additional 16 hours per week and is revising for an exam. How often will Chris and Rebecca see each other in an average week?

TIP: The answer is likely to be in minutes rather than hours or days.

Please show your working and EXPLAIN TO ME AGAIN WHY SHIFT WORK IS GOOD?!

Q5. There are 12 months in a year and an average of 700,000 babies born in the UK per year. Showing your working, please explain why ALL THE BIRTHDAYS are in July? Making reference to what exactly is so dull about October?

For extra marks make suggestions on how to finances all the presents and fit in all the celebrations.

Q6. If a toddler usually naps for between one and three hours each afternoon, how long will s/he sleep for if his/her Mum sits down to write a blog post?

Please choose from the following options:

a. Between one and three hours
b.Three and a half hours without stirring once
c. Half an hour so she has to write the remainder of it with him on her knee bashing the keyboard with his big brother's old battered safari car

For extra marks, can you tell me WHY?!