Still Here

In case anyone was wondering!

Apologies for the lack of posts over the summer, turns out that having two jobs, and two kids and trying to write a book is ever so slightly time consuming, and doesn’t leave time for much else!

Also *types under breath* I kind of hate summer and find it one of my most difficult times of year.  There, said it.  I know it’s a hugely unpopular opinion, but for me summer is mainly sweating, getting migraines from the sun, and trying to cram in as much QUALITY FAMILY TIME with my kids as possible whilst battling the urge to strangle them when I step on yet another mothafucking piece of lego with goddam bare feet.  This summer has been an odd one because I’ve been working four days a week, so I’ve not been around much and then when I have, I’ve felt this incredible pressure for us to have Perfect Family Fun together, which rarely if ever works out how I envisage it.

We have had some good times though, and thanks to Chris taking some annual leave each week to be home with the boys, they’ve enjoyed having him around a bit more and not missed me too much, I don’t think.

My new job is going…ehhh…well, it’s going anyway.  My CIDP is behaving itself, and the book I’m writing is the slowest project ever but it’s keeping me sane (ish).

And honestly, that’s pretty much it.  Every now and again I think about archiving this place, since I’m not really actively blogging anymore, but then I see people finding old posts about CIDP/Molar pregnancy/Miscarriage etc through their google searches, and I think- ‘well what if reading about my experiences helps someone?’  So it’s staying, for now.

Who knows, maybe one day when I have more time (not clear when that’ll be, but let’s play pretend) I’ll be a bit more active (and possibly even witty?!) but for now, this will have to do 😉





on being (begrudgingly) realistic

I am not renowned for realism, it has to be said, and so in cases where it is required I am a late-adopter, holding out hope long after it ceases to be sensible to do so.  That’s pretty unusual for someone with such high levels of anxiety I think, and at odds with my general belief that EVERYTHING IS GOING TO GO WRONG…and yet I hope, and hope that it won’t.

I particularly hate the need to be realistic when it relates to my chronic condition.  Even when I was really quite acutely unwell and newly diagnosed I was all “I totally can shower myself!” When it was quite plain for all to see that I could barely lift a spoon to my mouth to feed myself, never mind transport myself to a bathroom and attend to my hygiene needs without falling down flat on my face.

I was like ‘the little engine that could’, and this was my face whenever it turned out that actually I couldn’t:



(Incidentally, if anyone ever requires an image of a pissed off looking Thomas the tank engine- there are loads to choose from.  The dude has issues it would seem.)


Four years later, honestly, not much has changed.  I still like to think I can do everrrrrything, and you don’t want to be around me when I find out that I can’t.  I am getting better at accepting my limitations (I think?…Ok, maybe not…) but still don’t often fully realise them as part of my self-image and awareness.  This leads me to do things like apply for jobs that are actually beyond my physical capabilities.  That’s not a random non-specific example, that’s an actual thing that I did last week- securing myself an interview for a job that in reality, after considering it at length, I probably can’t actually physically manage- at least not reliably anyway.

Honestly?  It totally sucks.  Every time I tell myself that I can DO WHATEVER I WANT, and then struggle to drain a pan of pasta, or open a can of beans, or fasten a set of buttons without looking like I have the DT’s, I am reminded that actually Positive Mental Attitude is only a tiny part of the battle when it comes to life with CIDP, and that at the end of the day- it’s my nervous system that’s in control, not me (terrifying for anyone, but particularly a control freak like myself.)

But I decided that the right thing to do in this case, even though it felt pretty miserable, was to step back, and decline the post.  It’s one thing for me to be affected by CIDP, when I’m having a bad day or staring down a potential relapse, but in a job role where someone else would be physically dependent on me, it *wouldn’t* just be me that was affected.  So there it is.  Sometimes you want to do a thing, and think you can do the thing, but you actually can’t do the thing, and it’s better to realise it before you’re committed to the thing.

So that’s where I’m at.  Back in Job Search Hell.  I’m trying not to panic or feel too sorry for myself, because really what will that achieve?  But on the other hand I’m definitely feeling a bit sobered by the slowly dawning realisation that shit, I really am stuck in this malfunctioning body hey?

Job Search Hell

That’s where I’m at right now.  One of Dante’s lesser-known circles.

Possibly the worst bit is that I actually already have a job- one that I love and don’t want to leave.  So why am I looking for something else, you ask?  Good question.  The answer of course, is money.


Turns out that working seven hours a week as a library assistant, and about fifty hours a week as a ‘writer’ pays…well…pretty close to nothing actually.

I’m aware we’re not supposed to talk about money- that in doing so I’m breaking some weird universal taboo, but honestly- who is this secrecy helping?  We all need to eat and somewhere to live, and I’ve yet to find a landlord or supermarket that accepts poems in lieu of payment, (not that I’d do much better even if I did, since I can’t write poetry for shit).

So, with a heavy heart I find myself looking for other options.  I spend about half of my time feeling really MAD about the unfairness of the situation, and the other half telling myself to STFU and stop thinking I’m some special snowflake who isn’t subject to the same economic strain as almost every other working class person on earth right now.

In more dramatic moments I hear Jim Broadbent, as Harold Zidler in Moulin Rouge:


(just change love to live)

In less dramatic moments, I tell myself that I’m no different to anyone else and that I’m lucky to at least be (vaguely) employable.

One thing that is really pissing me off as I trawl through job search results, is the demand on applicants to not just be willing to do the job for the pay, but the requirement to declare it your life’s ambition.

Seriously, if you’re looking to employ someone as a neurosurgeon, or helicopter pilot perhaps, I can understand you wanting the role to be one of that individual’s defining characteristics, and for them to display a real passion and significant dedication to the field.  But when you’re looking for a cleaner?  Isn’t it enough that they’re capable of doing the work, and that they’ll show up and give a shit, at least within proscribed working hours?  If you want someone to display AMBITION, ENTHUSIASM, FLEXIBILITY AND PASSION about cleaning a toilet, you’re possibly going to need to offer more than £7 an hour, and appreciate that you’re appealing to a very niche audience.

Ehhh…I don’t know, this could just be me having a surly attitude and poor work ethic, but when I stumble across yet another minimum-wage job that not only wants me to spend forty hours a week away from my children, my partner, my home, and my writing but also wants me to demonstrate that I will treat it as my #1 priority and life’s work, I find myself getting a bit ‘Braveheart’, yelling at the screen.


It’s times like this I wonder if leaving nursing was a terrible terrible mistake.  But, when I (briefly) went back to it last year THAT felt like a terrible mistake, so how can that be true?


Regardless, I should probably get back to it.  Incidentally if anyone knows of any kick-ass jobs that would allow me to keep my Saturdays at the library, and pay me enough to feed my children who basically never stop eating, then HIT ME UP.  As you can see, I am totally AMBITIOUS, ENTHUSIASTIC, FLEXIBLE AND PASSIONATE etc etc etc 😉

I Quit My Job

As above really.  I’m not sure what else there is to say on that matter.

Well, there’s plenty to say, it’s just that for once I don’t know how to say it.

I have spent many (many) an hour fantasising about quitting my job, in those fantasies, I would usually sweep into my manager’s office after a particularly hellish night shift and declare “I quit!” before running through the double doors and falling onto my knees on the tarmac of the car park weeping great tears of joy at my freedom.  It was all very cinematic.

Then I actually did it.  Biggest anti-climax everrrrrrr.

BUT I do feel incredible.  Partly incredible in a “shit me, I can’t quite believe I just did that, what the hell was I thinking?!” but mostly incredible in a “wow, I feel amazingly light, like I could float off the ground and over the rooftops now the weight of that decision isn’t weighing down on me anymore…weeee, I’m floating…wait, am I high?!” sort of way.

You can see I think, why I said I was struggling to really find the words to cover this subject matter,

The truth is, I wanted to do this a year ago, but couldn’t.  And then I got ill, and was temporarily paralysed and blah blah…and now here I am.  Back on my feet but they’re leading me down a totally different path.  And it still isn’t really the *right* time for me to quit my job. (Actually, I doubt there’s ever a good time to quit your job- unless you have another one lined up) but I’ve gone and done it anyway.

I expect a lot of people will have opinions on my decision and I look forward to hearing those in the coming hours/days/weeks (Oh how I wish there was such a thing as a ‘sarcasm font’)  but for now I’m just going to enjoy the high before the inevitable low.  Like many a junkie before me, I’m telling myself it will sooooo be worth it.

Everybody was kung fu fighting

So, I’m feeling a little better about the schools issue since my last entry rant.  Nothing has changed but just getting it all out helps, in the same way that filling an A4 side of paper with the word “FUCK!” might provide a cathartic release.  What do you mean, that’s essentially what I did?  Oh alright, it was a little sweary.  And once again I lament my decision not to blog anonymously.  It would be so freeing to be able to write whatever I liked without worrying about who was reading it.  For the most part that’s exactly what I do but there are some things I can’t tell you, like how frustrating I am finding my job right now, and how yesterday for the first time ever I actually felt like karate chopping one of my own children’s heads off.  I didn’t.  But I felt like it.

You see Rudy has learnt how to scream.  Of course babies are born screaming, if you’re lucky, and they continue to exercise their lungs in this way throughout baby toddler and childhood, but I’m not talking about “waaaaa” I am talking about full-on teen-scream-movie-i-know-what-you-did-last-week-and-now-there’s-an-axe-wielding-known-serial-killer-maniac-approaching-me-up-a-flight-of-stairs screaming.  It’s blood curdling, ear-drum-shattering stuff and he does it all the time. ALL THE TIME people.  Sometimes it’s born of frustration, he utilises it to alert me to times when his brother may have snatched something from him, or perhaps the dog stole his biscuit, or his juice ran out, or he dropped his toy, or his socks and shoes are on his feet and he doesn’t want them to be or vice versa.  But he also does it for fun.  Like, you know, in moments of pure joy and giddiness, and also when he’s bored in the back of the car.  So yesterday he had done it about 6-10 times per hour from 6am through 6pm and my nerves were shot.  I got them both in the bath and poured myself what might be considered a generous serving of red wine and just as my shoulders began to drop and my jaw unclench he started up again, but in the bathroom, so complete with reverb.  In a flash I saw myself going kung-fu psycho-mum to make the noise stop. But fortunately I have shreds of sanity left at this point so instead called bathtime to a close (always an unpopular decision) and began the process of getting them both ready for bed chasing them both up and down the landing.

Toby has taken to complaining loudly of things that aren’t actually happening.  Like you’ll walk past him and he’ll say “OW YOU KNOCKED ME OVER” Usually still standing at this point, and unable to appreciate the impossibility of his claims.  As I gently towel dried his hair he started up with “MUMMY YOU’RE HURTING ME! OWWWW!” so I did what any frazzled-to-fuck mother of two small boys might and suggested he might want to dry himself and get his own pyjamas on if he didn’t like my efforts.  This was another unpopular suggestion.  It seems I’d grossly under-estimated how over tired he was because I’ll be damned if he didn’t commence the biggest meltdown on planet earth, complete with screeching to give his brother’s a run for it’s money and also, and this is a new one- physical violence, punching me on the arm when I was tidying his brother’s bedroom and therefore not looking and didn’t see it coming.

By this point I didn’t even have the energy for imaginary karate, so I just ploughed on and once they were both asleep I consoled myself with a long shower, more wine, and an evening in bed with my kindle.  I even lit candles, which when you consider I’d also washed my hair and shaved my legs makes it almost a date, except that Chris was working.  So, a date with myself.

Today is another screechy delight.  They’re currently “playing together” (fighting over a hula hoop, not the savoury snack variety) hence me being able to hammer this entry out.  Later we’re off to the hospital for my dermatology follow up after my mole removal in January.  Then tonight I have work.  A notion I feel quite violently opposed to since it will involve me being awake for the next 30 hours at least (Chris is in uni tomorrow so no bed for me until 5pm at the earliest tomorrow).

I keep thinking “I can’t do this anymore” about work and then I get a tiny bit of sleep and it seems more bearable and then I have a week of walking around like a zombie and I’m back to “this isn’t working out” again.

It’s not just the sleep thing, although that does play a huge part, but without anonymity I can’t share too much about work apart apart from to say it’s not the babies, or the families, who for the most part I love and feel honoured to care for, it’s just everything else that comes with it.

Alas, the hula hoop has now been discarded and Rudy is eyeing up the coffee table as climbing apparatus so that concludes this poor excuse for a blog entry.

The Ghost of Sick Days Past

We’ve all been ill.  Apart from Toby who must have some kind of superhuman immune system to have avoided all the germs flying his way.

It started with Chris who had a dodgy ear, then he had a cold, then i thought i had a cold but it turned out to be the flu.  Around the same time Rudy started with horrendous explosive diarrhea.  Three days later i felt that maybe, just maybe i had got through the worst of the flu when Chris and i both came down with Rudy’s tummy bug.

I have to say that i have been feeling a tad sorry for myself.  It is my annual leave week after all, and i’ve spent three days in a row stuck at home in my pjs.  It’s Rudy i feel most sorry for though, four days of toxic biohazard poop have left their mark (literally) on his behind.  He now has what may be possibly one of the worst cases of nappy rash i have seen. We’re talking blisters.  What he really needs is some lengthly nappy-free time. But what with a. the diarrhea, and b. It being November, it just isn’t happening right now.

I will say one thing.  Sick days are not what they used to be.  I remember sick days.  They used to involve nothing more strenuous than a telephone call into work (if required) and a decision on what box set to watch whilst lying in bed/on the sofa.  Possibly some sourcing of liquid refreshment/nutritional sustenance might be required.  And toileting.  But pretty much everything else used to fall by the wayside.

They certainly never used to involve laundry, housework, preparing meals for other people, getting up multiple times in the night to attend to the needs of others, or trips to Ikea (Don’t ask! It’s best not to ask!)

No, sick days are not what they used to be.

I have said before, and will say again, that the single hardest part of being a parent (practically, rather than emotionally speaking) is when they, or you, or both are ill.  You’re already so stretched.  And then the vomit/poop/fever hits.  And initially you cope, because you’re in crisis mode.  But then 2, 3 days in, it’s not a crisis anymore and that’s when you really feel it.

I am trying (so hard!) to be a glass-half-full mama though, rather than all doom and gloom.  And i’m half aware that all kinds of shit has hit the global fan recently so want it known that i do, really and truly appreciate what i have.

In that vein, i will say that i am so very very grateful that so far we have only experienced D rather than the full D&V.  I cannot begin to describe how pissed off i will be if i start vomiting.

Additionally, although sick days are not what they were in years gone by, they also never used to include this handsome bunch either…

So it’s a fair trade i suppose 😉


Under Pressure

Na na na na-na-na-na.

Well i did it! I can now officially successfully resuscitate plastic mannequins.  Which apparently i should spell “Mannikin” as they’re medical but i just can’t bring myself to do it…it just looks wrong.

As did the dolls in question, one had a peel-back face which was perturbing, and another one’s arm fell off during a particularly vigorous resuscitation demo by one of the consultants.

Anyway, i had prepared myself for the worst after everyone telling me how horrendous it would be, so it actually wasn’t as bad as i had expected and I PASSED! Wahoo! I got 94% on the mutiple choice (true/false) questions and i passed the practical assessment first time.  I did forget a couple of minor things but remembered them as soon as i left the room, and thankfully they weren’t automatic fail points, a bit like getting a couple of “minors” on your driving test.

It was a loooong day (8am to 6pm) but i made it home *just* in time to put both boys to bed, so i was exhausted but happy and had a chinese takeaway and a beer to celebrate.

Chris’s sister Emma was staying with us most of last week (Tuesday to Saturday) which was brilliant as the boys both love her and she kindly volunteered to sleep in Rudy’s room so Chris and i probably got more sleep in those few nights than we’d get in a fortnight! She also washed up every evening while we bathed the boys and put them to bed so for the first time in recent history the kitchen didn’t look like the cupboards had exploded their contents everywhere!

Since she left normal service has resumed and once again the kitchen counters are buried under dirty plates and half empty mugs of tea/coffee.  I attempted to tackle the situation this morning but had to break off due to Rudy getting his leg wedged between two of the bars on the safety gate in his attempt to join me in the kitchen, and then Toby declared an urgent need to use the potty and an inability to pull his pyjama bottoms down so i gave up…

We are now having some “quiet” time watching a dvd together and i’m typing this in fits and starts, breaking off every few minutes to explain things to Toby or prevent Rudy from pulling books off the shelves/licking the TV stand/hitting the dog on the head with a plastic spanner…

I had my introductory session for my mentorship on Friday and came away feeling that i have definitely bitten off more than i can chew.  The amount of reading they expect you to do, and time you need to put in is much more than i’d anticipated, and i can’t help but think that if i can’t even keep on top of my own washing up then how on earth am i supposed to find the time to do anything extra?

Just a couple of random photos from this past week as i haven’t really been taking many recently (bad Mummy)