Molar Pregnancy and Me

Welcome to the second instalment in the "and me" series!  Featuring myself and my range of rare medical conditions.  Ok, I actually have just the two CIDP and Molar Pregnancy.

Well, I don't have Molar Pregnancy, there is no having of Molar Pregnancy. But I am undergoing follow up for a Molar Pregnancy, and I know a lot of people don't really understand what that actually means so here I am, blogging about it.

Chris and I decided to add to our family last summer, sure I'd been having a few strange little twitches in my leg but we obviously had no idea of what was about to happen, otherwise we wouldn't have been contemplating trying for another baby.

When I say try, that's not really the correct wording. We're fortunate to be extremely fertile. The question is always whether the pregnancy will actually stick.

I discovered I was pregnant on August 29th, the same day I was diagnosed with having Guillain Barre Syndrome, and had all the usual doubts and fears, but an early private scan showed the teeny tiny beginnings of a baby, i.e. a blob measuring a week behind but with a clear strong heartbeat.

I've never had a miscarriage that followed a positive scan so I figured we were free and clear and concentrated on getting better i.e. re-learning to walk etc.

Unfortunately in this case I had definitely counted my chickens before they'd hatched. Literally. A scan at what would have been 10 weeks showed an embryo sans heartbeat. There was to be no third chicken.

Since my body is not always eager to admit it's failings and reluctant to let go of doomed pregnancies I had to have my miscarriage medically induced.

You'd think that would be the worst of it, right? So did I. Until 3 weeks later after celebrating Toby's birthday at Legoland, we came home to a huge thick envelope in the mail.

The histology results from the miscarriage were back and the findings were consistent with what is known as a Partial Hydatidiform Mole.

Fortunately I'd heard of the condition before, through work, otherwise I'd have been even more shocked and bewildered than I actually was.

In simple terms it means that at conception, two sperm fertilised the same egg. This should never happen, as eggs are supposed to form a protective barrier preventing a second sperm from gaining entry. So there was a glitch with my egg, and two lucky sperm got in. Unfortunately this meant that right from the beginning the pregnancy was not viable, and by viable I mean, could never have resulted in a live healthy baby at the end of it.

From the start there was an extra set of chromosomes- 69 instead of 46 (known as a triploidy). That extra genetic material causes the pregnancy to progress abnormally with the placenta outgrowing the baby. Partial molar pregnancy is a type of Gestational Trophoblastic Tumour.  Usually the condition is diagnosed at scan and the recommended treatment is an ERPC, which is surgical removal of all the pregnancy tissue. There is a risk that if any material is left behind it can embed in the uterus and develop into what is known as an invasive mole. Untreated this can lead to Choriocarcinoma.

Obviously I wasn't diagnosed as having had a Partial Molar until weeks after my medically managed miscarriage, and not having had an ERPC at the time, meant I was at slightly increased risk of there having been some pregnancy tissue left behind.  The idea of there being this random genetic material burrowing into my uterus and possibly becoming cancerous was pretty terrifying and I definitely struggled with the diagnosis more than I did with being told I had Guillain Barre, or being told I had miscarried, or even a couple of weeks later having my GBS diagnosis changed to one of CIDP. The molar was the hardest to swallow because it seemed so fucking unfair.

All we'd wanted was another child, how had it gone so wrong that I was now being sent pamphlets about Chemotherapy?!

Fortunately, all my stress and worry and research into whether or not I would lose my hair on Methotrexate proved to be unfounded. I have been monitored via regular urine and blood samples (I send a test tube of pee to Sheffield through the post every fortnight!) in order to check that my HCG levels are reducing.  In simple terms HCG is the "Pregnancy Hormone", so were it increasing, or even just sticking fast, then it might indicate that there was some tumour remaining and I would need further treatment. My levels started low and have continued to fall. My most recent level was 0.02. There really isn't much more NOT PREGNANT IN ANY WAY SHAPE OR FORM! you can get!

So it's all been pretty straightforward and next month (as of the 12th of April) I will reach the 6 Month Post Miscarriage marker and no longer need follow-up. Although were I ever to get pregnant again (regardless of at what point in the future, or the outcome of the pregnancy) I would need follow up afterwards, as it is always possible that the pregnancy hormone can "reactivate" the mole. Which sounds so sci-fi, I know.

I will finally be able to get life insurance (something I have been turned down for, due to there having been an increased chance of a cancer diagnosis these past 5 months) which will be a relief.

It also means that as of next month we will be given the "all clear" to try again, should we want to.

1 in 600 pregnancies is a Molar Pregnancy. Having already had one the risk increases to 1 in 100. Which is still pretty good odds of everything being perfectly fine, and in fact most women do go on to have successful  pregnancies and healthy babies following a molar diagnosis.

Of course most women do not also have a diagnosis of another rare and under-researched condition, like CIDP.  And that, is a whole other post in itself.

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.

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 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.

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.

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 well...at 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.

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?!

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.