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.)

 

 

 

 

 

 

 

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?

“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)

 

 

 

The Outcast

April’s book from my list of books to re-read this year was The Outcast by Sadie Jones and I totally cheated and read it early because I was stuck in a book rut and just itching to read this one again- oops!  It does seem rather fitting though because a couple of days later I heard (via twitter) that it has been adapted for TV and is going to be shown on the BBC later this year, which I’m very excited about.  So I think you should all GO READ THE BOOK RIGHT NOW before it is, so you can be blown away by it twice 😉

theoutcast

Like The Gargoyle, and The Book Thief, two of the other three books I’ve re-read so far this year, it was only my second time reading The Outcast.  I initially came across it totally by accident, having got it as a swap a few years ago from Read It Swap It.  In fact I found this little slip of paper inside it this time and ended up using it as a makeshift bookmark:

swap

I can’t actually remember the book I swapped it for but I am so glad I did, whatever it was.  The Outcast had me totally hooked from the first page.  The first time I finished it in two days, this time it took just one, but to be fair I was recovering from a vomiting bug this time, so spent the entire day in the bath/bed, which definitely helped.

The atmosphere in the book is so suffocating and the pacing so tense that putting it down even for a bathroom break or to get a drink feels a bit like coming up for a gulp of air after being submerged under water, but then willingly sticking your head back in.  Which actually, if you read the book, you’ll see is a rather fitting metaphor.

So, you’re probably wondering what it’s actually about?

Essentially, it’s the story of Lewis. a young boy coming of age in the stifling decade of the 1950’s.

Now, when I first read this book I was going on and on at Chris for days afterwards about how good it was and when I told him when it was set he dismissed it immediately, which to be fair didn’t exactly surprise me because I knew that would be his reaction BUT I still feel sad for him now because man, is he missing out.  So I hope no one else lets the era put them off.  It does play a huge role in the storyline- with his father coming home from the war when he’s a young boy and the social expectations of the time a constant nagging force in his life, and god just the unbearably repressed atmosphere- arrgghhh, even thinking about it makes me tense, but like- in a good way, I think?!  Seriously, this is one of those books where I get just so incredibly wound-up on behalf of the main character that I’m sure it can’t be good for my health, but it sucks you in so wonderfully, that you’re somehow wooed and enraged at the same time.

When I said it’s the story of Lewis- yes it is, but it’s also the story of his parents, and neighbours and about the effects of tragedy and grief and misunderstanding, the varying ways people cope (or not) and the importance of love and acceptance.

I don’t want to give too much away so won’t tell you all the things I love about the book but I will say that one thing I personally particularly liked is the way it handles the issue of self harm.  It isn’t trotted out for shock value (although taking a blade to your own skin is never not shocking, even when you’re the one doing it) and it isn’t given sole-focus in the storyline from that point forward, but is a thing that happens- a thing that he sometimes does, that he feels mixed emotions about, but overwhelmingly shame.  And as someone who self harmed for years, I think Sadie Jones does an incredibly good job of portraying not just the act itself- and the cover up but all the feelings that come with it and with being ‘found out’.

I also love how grief is portrayed, not as though it’s a straight line to walk down but a blur to pass through that at some times seems thicker than others.

I think my most favourite thing though is just the characters themselves, they are all flawed- some hideously so, but all very real.  It didn’t require much effort for me to imagine that this cast of people actually existed, which is sort of terrifying, but of course wonderful too because isn’t that the point of a good book- to make you believe it could be real?

Obviously, if you haven’t gathered by now, it is one of my favourite books ever and I absolutely think you should go away and read it.

I, on the other hand am going to go away and try NOT to read the next book on my list because I am supposed to be waiting until May to share my thoughts on The Tenderness of Wolves by Stef Penney with you…we’ll see if I can last that long I guess?!  It’s not like I don’t have a HUGE pile of unread books waiting for me…literally, look at them all:

TBRpile

(and that doesn’t even include the ones on my kindle!)

It’s just that now I’ve started re-reading all these amazing books I haven’t read for ages, I can’t seem to stop…

Letter to my 16 year old self

It’s Theme Thursday! And this week Jenn has gone all out and conjured a time-machine so we can all send letters to our sixteen year old selves.  Cool, right?!
I left home the month before my 16th birthday and life was kind of crazy and hard, really really hard actually.  So there’s a lot I could have written in this letter…but…I’m kind of of the opinion that everything happens for a reason…
(Screenshot from BTVS, courtesy of 20th century fox and the amazingness that is Joss Whedon’s brain)
Ok, good point Buffy. I actually don’t believe everything happens for a reason, but I believe that shit happens, and a lot of the time you can’t control it but you can try to control how you react to it and I also believe that my life, right now, is pretty damn awesome, so even though I had to go through some stuff to get here, I’d do it all again just exactly the same if it guaranteed me the same outcome.
With that in mind, I present to you- my letter:
Dear (16 year old) Rebecca
 
It’s your sweet 16!
 
I know there really isn’t anything sweet about it, apart from maybe the nauseatingly sweet smell of horse manure that is your life right now, and I know that when your friend Jenny’s Mum brings your cake out with everyone singing “Happy Birthday!” you’ll be bawling too much to even blow out the candles BUT I’m your 28 year old self so trust me when I say that everything is going to be fine.
 
Repeat after me: everything is going to be fine.  Things will work themselves out, and one day in the not-so-distant-future all this will someday seem like a bizarre film that you watched about someone else’s utterly fucked up life.
 
You just need to keep on doing what you’re doing and everything will kind of fall into place. Oh except, the self-harming, I know you’re angry right now- at the world and everyone in it, including yourself, but honestly you need to cut that shit out and find a healthier coping mechanism, talk to people, get some help, here might be a good place to start.
 
It won’t be easy but you’re worth it (According to L’oreal anyway, but I don’t think that commercial is out yet so I’ve probably just confused the hell out of you).
 
Other than that, you’re doing good kiddo so just keep swimming…oh sorry, that film isn’t out yet either, but it’s a Disney movie- you’ll like it!
 
Life is good, not so much right now I know, but it will be- just you wait 🙂
 
Love from (28 year old) Rebecca
xxx
For more letters click the Theme Thursday button above- quick!- before they’re transported back in time! 😉