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.