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 😉

 

 

 

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New Beginnings

Happy 1st May / Beltane Blessings!

beltanealtar2017

I thought I’d better brush aside some of the tumbleweed blowing through this place, after only posting once in the entire month of April.  In my defence I’ve been very busy, but I look set to get even busier in the coming weeks so I thought I’d better at least say hello and give a brief update for anyone who’s interested, before disappearing again for a few weeks!

This time last year I was on the verge of some big changes, and had some major decisions to make, so on the 30th April, aka Beltane, I lit some candles, got myself a cold beer and sat cross legged on my bed and dug deep to figure out what it was I wanted and needed to do in the coming months.  Looking back now, I can see how important those decisions were, and appreciate how brutally honest I was with myself that evening.

So again last night I did the same thing, (except, switch beer for wine, and add some dubious-smelling incense into the mix), and this morning I’m feeling good about the challenges that lie ahead.

This summer I’ll be starting a new job (probably within the next couple of weeks), starting therapy (this Wednesday) and starting a brand-new writing project  The job is back at my old hospital, although in a very different role, the therapy is high-intensity CBT, and the writing project is a young-adult fairytale with a twist.  All of which I’m pretty excited about (well, I don’t know that I’d say ‘excited’ for the therapy actually, but…’positive’, maybe?!)

Between those three things I’m not sure how I’m going to have time for much else to be honest, but I will try to share as much as I can about my experiences, in case it helps anyone else.

I’m still posting my YA contemporary over on Wattpad, and I have a loyal fan base of about ten readers (most of whom are friends/family) who are consistently reading every chapter update and telling me they’re enjoying it, which I think is all most of us really want when we share our work, so I’m calling it a success so far.  I’ve also been pushing myself outside my comfort zone in other ways, like entering writing contests, submitting short stories for anthologies, and taking up burlesque dancing!

My CIDP continues to be well-managed and I’m hoping to reduce my dose of immunoglobulins over the summer months, and my PCOS is also behaving, so for once I don’t feel like I’m using up half my energy in a battle of wills with my own body.

Generally, aside from crippling anxiety, (which the therapy will hopefully help with), and a distinct lack of money (which the job should surely help with), life is good.  (Although obviously I hate typing that for fear of jinxing myself in some way, damn anxiety.)

 

 

 

 

 

 

 

A Year Without A Car

One year ago we sold our car and braced ourselves for living the next twelve months car-free.  I’d love to say this was a purely experimental move, for environmental and social reasons, but the truth is we were skint and couldn’t afford to run a car anymore.  So for the past year we’ve been entirely at the mercy of public transport, aside from the occasional lift from friends and family/rare taxi to the hospital.

When we made the decision, I intended to document our journey, from a family who’d always had a car (at least since having kids) to one trying to navigate life without, and I even went so far as setting up separate twitter, instagram and blog accounts specifically to post about our experience.  However, after writing two blog posts and taking a handful of pictures of the kids waiting for a bus/train, I discovered a few things…the first of which, was that what we were doing- what we still are doing- is not actually remarkable at all.

I actually knew this already, having grown up in a working class family with parents who didn’t drive.  My childhood consisted of bus trips and looooong walks everywhere.  So I already knew that going without a car didn’t make us special in any way, so much as remarkably privileged that this was the first time we were having to factor bus times/fares into our daily lives.  And although Chris did grow-up with a car, he has always commuted to work on public transport, so for him it hasn’t been such a radical change, although I’m sure he’ll agree that it’s still been a massive pain in the arse in many ways.

And that’s the other thing I discovered- that not only did I feel silly documenting something so very ordinary, but also, journeys were often such an absolute ball ache that the idea of reliving them in a blog post, to debate the pros/cons of taking the train vs the car, was just…well…urgh is the noise that springs to mind.

But, our year is almost up, and I have a new job (yippee), which means a car could soon become a real possibility once again (double yippee) so to mark our ‘year without’, I thought I’d do a basic round-up post of what it’s been like.

CONS

Buses are rarely on time.  We live on one of the busiest bus routes in Europe, buses into the city centre are supposed to be every 3 minutes at peak-times.  They are not.  My frequent experience is of waiting for one for between 10 and 15 minutes, and then having two or three turn up at once.  I don’t know how people in more suburban/rural areas manage without a car.  It’s genuinely inconceivable to me.  The only reason it has felt do-able for us, is being so close to the city centre with it’s multiple tram stops/train stations/bus services.

Public transport is inordinately expensive.  A day ticket on the bus for an adult costs £4.30.  A family ticket is £8.50.  We got a family and friends railcard which has made local train journeys much more affordable, but we’ve yet to use it to go anywhere further afield, because even with the extra money off, train fares are pricey, plus the idea of more than an hour on a train with the kids makes me feel a bit wobbly at the knees.

Which leads me onto my next point very nicely.  Motion sickness.  I’ve always had it, but thought I’d grown out of it as an adult.  Turns out, what actually happened was that I just learnt to drive and never went on transport for more than ten minutes at a time.  That’s obviously had to change this past year, and I’ve spent a lot of journeys staring resolutely out of the window and looking very green around the gills.

gag

(me, every time I’m forced to ride on a hot bus/go backwards on a train)

Public transport forces you to interact with strangers.  Rude bus drivers that you’re then at the mercy of until you reach your destination.  People with differing hygiene standards, and musical tastes to your own.  People with no concept of personal space.  People who can’t think of a better way to pass their journey than to spend it judging your parenting.  They’re all right there, and you can’t get away from them.

Which again leads nicely onto another major con- kids on transport.  When we had a car, yes the kids would sometimes ‘act up’ in the back- hitting each other with a Buzz Lightyear, spilling raisins all over the footwell, waiting until I’m in the outside lane of the M60 doing 85mph to tell me that they’re ‘desperate’ for a wee, etc etc.  But at the end of the day, they weren’t bugging anyone other than us.  Chris could turn in his seat and offer some kind of bribe/threat, I could pull the car off at the next services to use the toilets, whatever.  On public transport- when they’re tired, and want to slump across two seats and fall asleep on a commuter train, when they spill food everywhere, when they whine ‘are we nearly there yet’, you’ve got to be prepared with entertainment (no cd player remember!) and snacks, and reasons why they should stop kicking the chair in front, or why they shouldn’t lick the window, and if they need a wee?  Well good luck with that.

Basically you have no control.  Which for a control-freak is so bloody difficult.  Knowing I could leave my house two hours before an appointment and still not get there on time, because I’m not in charge is infuriating and mind-boggling.

Your world feels a lot smaller.  The only times we’ve ventured outside of the city limits have been either to visit family and friends, or when we’ve actually rented a car for the week and decided to make the most of our freedom.  Most of the time we’ve just bumbled around locally, because anything else is a. supreme effort and b. bloody expensive.

Also, over the winter, when my anxiety was bad and there was a spate of assaults in my local area, I felt totally trapped in my own home after dark.  With the car I’d have had no problem nipping out to the supermarket, or to a dance class or wherever, but faced with the prospect of walking places on my own in the pitch black?  No thanks.

Weather.  It’s unpredictable.  It’s generally shit.  And when you’re actually trudging through it in the dark with two miserable kids carrying school bags. and PE kits, and a week’s worth of shopping, then you really fucking FEEL IT, in a way that you don’t when you’re dashing between the front-door and the car.

Which leads me onto- shopping.  So many people urged us to do grocery deliveries, not perhaps fully appreciating that the reason we gave up the car was because we were TOTALLY SKINT.  So paying for someone to drop the shopping off seemed like a luxury that we couldn’t afford.  Hence, more frequent shopping trips and only buying what you can carry (which for me, with my CIDP, and generally piss-poor upper-body strength, is not all that much, it turns out.)

PROS

There has to be some…right?!  Well- yes.  The biggest pro, and the reason we did this was to save money.  We’ve probably saved about £300 a month (the cost of car finance, car insurance, car tax, and the annual MOT combined.)  We haven’t saved on petrol because the car was really economical, and because that money has been spent on transport instead.  So yes, if your car running costs are high (i.e. if you’re paying your car off in instalments, or live in a high insurance area etc) then you will definitely save money, providing you don’t just get taxis everywhere instead of course.

Another pro (I guess?) is that there was a certain novelty value for the first couple of months.  The kids had been on buses/trains before but not very frequently, so they were pretty enthusiastic about our transport adventures to begin with, which probably buoyed us a little too.  And it’s made me more confident on transport (knowing which stop to get buses from in Piccadilly, and even using the metro for the first time all by myself!)

Environmentally, I figure our impact will have been minimal, but NOT having the car definitely made me realise how many ‘quick trips’ I used to use it for, just because it was there, so that’s something I’ll consciously try to avoid if/when we get a car again in the future.

Which I guess leads onto another pro- which is that health wise I’ve had to do a lot of fucking walking.  We all have.  So that’s something.

And finally- daydreaming.  You can’t do that behind the wheel at high speeds.  Long bus journeys, especially if you sit at the front upstairs, jam your headphones in and resolutely refuse to make eye contact with anyone, can be really good for the imagination.  I have done so much people-watching this way, and thinking-time is always hugely beneficial for creativity.

______________

So, there you have it.  A project I intended to space out over 52 blog posts across twelve months, I’ve just summarised (probably quite badly) in one.

The fact is, if you’re in a position to weigh-up the pros and cons, i.e. you can actually afford to run a car without getting yourself into crippling debt, then to be honest, it’s probably worth it.  Unless you live and work in a city centre, and don’t have a driver’s licence, which is possibly the only scenario I could imagine being car-free NOT being a major pain in the ass.  But for anyone else- especially people with kids, then I wouldn’t recommend it.  Unless you don’t have a choice- in which case, my pros and cons aren’t going to be relevant anyway.  Needs must when the devil drives, and all that.

flintstones

(Our new ride, probably.)

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:

pissythomas

 

(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.

giphy-1

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:

zidler

(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.

giphy.gif

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?

Gah.

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 😉

“a bag of nerves”

I guess that’s essentially what we all are, but I feel like it sums me up quite nicely, as it manages to encapsulate both my damaged nervous system and my propensity for anxiety.

My anxiety, and in fact my mental health in general, is not something I’ve ever blogged, or really spoken about before to be honest, and I can’t say as I feel a great yearning to suddenly change that now, but as those of you who know me “IRL” will be aware- I have started making a nod to it on Facebook now that I’m actually at a stage of acknowledging it and seeking help.

I think it’s really telling that I have written at length about my experience of being diagnosed with and living with CIDP and had a lot of (mainly positive) feedback around that, and yet still not felt willing or able to share my similar experiences of suffering from startlingly common mental health problems.

As it’s 2017 (although you’d be forgiven for some days wondering if we’ve slipped back in time to the 1930’s) I think we all like to think that we’re pretty open-minded, and terms like ‘depression’ and ‘anxiety’ have lost some of the negative connotations or power that they once held, and in a way that’s probably true. After all, this morning I admitted to no less than four separate people in the playground that yes, I did have a good time on Friday night thank you, but I then had a panic attack in the early hours of Saturday morning that kind of took the shine off.  Being able to share that information with people and not think they’re going to start slowly backing away and turning down my childrens’ party invites, means that yes- we’ve definitely moved on from the notion that suffering from mental illness makes you inferior, or to be avoided.  But on the other hand, here I am still feeling incredibly hesitant about hitting ‘publish’ on this post, because the truth is- there is still that suggestion- whether internal or external, that your mind is something you can FULLY CONTROL.  So if it’s not working quite right- it’s within your power to fix it, and your fault if you then can’t.

I’ve been experiencing anxiety attacks for well over a decade and am only just now holding my hands up and saying, “so this is a thing I need some help with.”  I live with a mental health professional who has been (supportively) encouraging me to get help for the majority of that time.  So if it’s hard for *me*, then how much harder must it be for other people who don’t have someone holding their hand (either literally or metaphorically), rubbing their back and reassuring them that no, they’re not actually going fucking insane, or you know- if they are- then it’ll be alright and no one will hold it against them.

Until recently, my mental health mirrored my circumstances quite accurately, so when things were not going well, my mental health wasn’t great either (makes sense really), and so I told myself that it didn’t really matter how shitty I felt because sooner or later, things would calm down and I’d calm down too.  And that kind of philosophy worked ok for a while.  But for the last couple of years it hasn’t worked out that way- the sea can be flat, crystal blue without so much as a ripple on the surface and I’m still there in my boat yelling “WE’RE GOING TO DROWN!!!!!!”.  This juxtaposition has finally prompted me to actually admit that this is something I can’t just keep ‘riding out until it settles’ and that I need help.

Three little words with so much power.  How terrifying that is to type, let alone say.  But it’s true- I do need help.  I can’t keep waking up feeling like my heart is about to explode out of my chest, struggling for breath and wondering why the hell my body and mind are conspiring to kill me off while I sleep.  I can’t keep squashing down all the inconvenient, messy and downright traumatic bullshit that I’ve put off dealing with.  I need some help, and although that help might not take the cure of a magic wand wafting all this ridiculousness away, I hope at least it will mean I can steer my ship safely, regardless of the tide or the weather conditions, without constantly feeling like I’m about to be nommed-to-death by sharks.

I’ve also decided to be as transparent as I can be about all of this.  Because frankly, if I can blog about my feelings on fostering or that time I collapsed on a bathroom floor, or about pregnancy loss, or my Dad’s death etc etc then I should be able to be open about this kind of thing too.

So…my name is Rebecca and I have anxiety.  The level of anxiety that means that the woman who did my assessment a week ago called me up today to tell me I’m not suitable for low-intensity CBT and she’s referring me for high-intensity instead.  The level of anxiety that means answering phone calls is terrifying, the level of anxiety that wakes me in the dead of night to go check that my children are breathing, the level of anxiety that means I am constantly expecting SOMETHING TERRIBLE TO HAPPEN without knowing specifically what that might entail, so just worrying about every possibility- as a precaution.  The level of anxiety that means my panic attacks have gone from an occasional annoyance to a regular feature that if I wasn’t hyperventilating and crying at the time, I’d probably roll my eyes at.

So- that’s a thing and I’m getting help for it, and because there might be someone out there who is remarkably similar to me at any other point in the last decade, going “oh that’s familiar, but the idea of asking for help is scary”, I’m going to try to keep you all updated on just how scary (or not), this whole ‘getting help’ thing is.

In the meantime- have some helpful links:

https://www.selfhelpservices.org.uk/

(support, services and signposting- this is the link a friend sent me, that finally prompted to action, and I’m now on a waiting list, so if you’re thinking about taking that step, do check it out)

https://mind.org.uk

(Mind are a well known mental health charity and there’s loads of useful info on their site)

http://www.nhs.uk/pages/home.aspx

(nhs choices website, you can type literally any condition in and get some reliable information on, and usually some information and advice about getting help too)

https://anxietyuk.org.uk

(a user led organisation)

 

 

 

2016

Well, here I am again, rounding-up a year in which I hardly blogged at all, in a blog post.  It does seem a little disingenuous, but the alternative was to continue letting virtual tumbleweed blow through here, and have all five of my regular readers wonder if I was ever coming back.

Well, hello to the loyal few, and thanks for sticking around.  2016 was an utterly bizarre year for a whole host of reasons on both a personal and global scale and honestly, there were several parts of it I would rather not revisit mentally here, but there was a lot of good too.

I started out the year with ALL THE INTENTIONS.  We’d just said goodbye to our foster baby and I was about to throw myself into the return to nursing program and full-time work and I also had other more personal plans afoot- but quite quickly, like literally by February- I knew that the year was not going to turn out how I had planned it would.  I quit the course- sorry, stepped off (sounds much more considered and responsible) and I’d been in a minor but fairly traumatic car accident, and totally separately to that been given an official diagnosis of PCOS.  Basically, by spring I’d scrapped every single resolution/goal I’d set myself and instead was in a place where my mission for the year was to- get a job, and survive.

Fortunately I managed both. And not only did I manage to find a job- but a job I actually really enjoy- working as a library assistant. Bonus! I also set up my own etsy shop, and managed to break even before the end of the year (another major bonus) and started work on no less than three separate WIP’s- two of which I abandoned and the third of which I’m still working on right now, well…not *right* now, since I’m here writing this, but you know what I mean.

The thing is, 2016 felt almost quiet in comparison to what I’d had planned for it- I was braced for so many HUGE changes to our everyday lives, that what happened instead- my quiet contentment with my part-time library job, and pootling away with my crafting and writing- seemed almost sub-plots, with me waiting to see what the over-arching storyline would be, but then there wasn’t one (aside from the world seemingly crumbling around us that is) and now it’s over and we’re three days into January and I’m wondering if I should even bother to make any GRAND PLANS for 2017 or just suck it and see.

I’m tempted to go with the latter although I do have a couple of things I want to pledge to myself- I WILL finish the first draft of this story, no matter how many times I read it back and groan or find myself writing notes to myself like WTF IS HAPPENING HERE in the margins, and I WILL NOT give in to the temptation to just shave off all my hair despite it’s unbearable appearance during this weird in-betweeny growing out stage.

Hugely important life goals, as you can see, but whenever I try to think bigger/look wider I feel overwhelmed, so for now a commitment to getting words down on paper and leaving my hair alone are all I can manage, and that will just have to be enough.

Happy New Year to my readers- I can’t promise a greater frequency or quality of blogging in the coming year but I won’t entirely abandon you either 😉