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 Bad Attitude is Really Really Not the Only Disability in Life.

Can we talk about this?

theonlydisabilityisabadattitude

Like, no.  Just, no. No no no.

If you’re short on time today then feel free to stop reading now and get on with your afternoon, because to be honest- that’s a pretty good summary of what I’m about to say.

I thought I’d blogged about this issue before, but a quick trawl through old posts didn’t turn anything up, so possibly I *thought* about blogging about this before, but then bit my tongue.  Hard.  The way I frequently do.

But I’m feeling a bit, umm…sensitive at the minute.  After a week in which the kids went back to school and I went back to my fitness regime (that had given way during December to evenings under duvets and increasing volumes of Baileys), my body is protesting, I guess you’d say.  Not quite dramatic enough for me to bust out the word ‘relapse’ but enough to mean that I am a quivering wreck- literally.  My hands have been shaking near constantly for about three days, which leads to anxiety, which leads to panic attacks, which leads to adrenaline- which REALLY helps*, obviously.

(*sarcasm klaxon)

And the thing is, throughout all this, I can’t get this fucking meme out of my mind.

It’s not the image.  Let me repeat, for the cheap seats in the back: IT’S NOT THE IMAGE! I don’t know why I’m even bothering to emphasize that, knowing full well there’ll still be someone out there who thinks I am bitterly opposed to such a powerful image of a disabled person displaying power and strength and all the things we’re told by society, a disabled person can’t have/be. It’s an incredible image.  My problem is not with the image.  My problem is with the slogan someone has helpfully superimposed onto it.

 

‘ The only disability is a bad attitude’

Really?

Really?

*raises eyebrow until it lifts off my forehead and floats off into fucking space*

Anybody who thinks that the only thing preventing people from accessing public spaces, education, work opportunities, social events and from taking care of their activities of daily living is their attitude, should refer to the diagram below:

wheretoputyouropinion

Most people reading this will know why this kind of able-ist bullshit bugs the crap out of me, but in case you’re one of those who doesn’t- here’s the deal:

Three years ago I went from being a busy young mum of two small boys, working part-time nights as a nurse on a neonatal unit, running (ok, jogging) 10ks and generally ‘leading a normal life’ to lying in a hospital bed, largely unable to move.

But the only disability in life is a bad attitude, right?! So I got my shit together and got me the fuck outta that bed and GOT ON WITH THINGS.  Because really, it was only my bad attitude holding me back, amirite?!

Umm…no.  You see what was actually holding me back, was my body.  Specifically my immune system, which had decided my nervous system was a foreign invader and begun stripping all my peripheral nerves of their myelin sheaths.  Don’t know what a myelin sheath is? Well, let me tell you- they’re important af.  Without them, your nerves can’t transmit signals .  So, to be clear- my brain was like: LET’S STAND UP

And my legs were like: …………..

*neurological tumbleweed*

 

This kind of message, this idea that anyone can overcome ANYTHING as long as they’re DETERMINED, sounds very aspirational and wonderful, but there’s one teeny tiny problem- it’s not true.  And it’s damaging.  It’s damaging because it makes people- vulnerable, scared people who’s lives might be falling apart, who might be in pain and terrified feel RESPONSIBLE FOR THEIR PROBLEMS.

I know, because I literally sat on my toilet, stared at my legs and thought “Maybe I just didn’t try hard enough last time…come on legs, we can fucking do this.”

And guess what happened?

Nothing.

Of course.  Because pure longing doesn’t actually repair biological damage.

I also know because I told myself, in the brief time I spent at home deteriorating rapidly, that I CAN DO THIS.  I SHOULD BE ABLE TO DO THIS.

THIS being: EVERYTHING.  Driving (yes, I cringe now but I drove around Manchester unable to feel the soles of my feet, unable to change gear one-handed.  I could have fucking killed someone but hey, got to admire my can-do attitude right?  NO.)  Looking after my kids- even though I couldn’t lift my one year old. Dressing myself- even though my hands shook so badly I couldn’t fasten my bra. Walking down the stairs- even though I fell, multiple times.  Yes one fall down the stairs was not apparently enough to convince me that I could not actually ‘do this’.  And what’s even more terrifying is that I was pregnant.  Pregnant falling down the stairs.  We all know how this ends of course, i.e. not well.  It turned out, to my relief that those falls- particularly the one bad fall I had, hadn’t actually caused my miscarriage, and that the pregnancy was doomed from the start.  But I didn’t find that out until a month later.  A month is a long time to carry that burden of guilt.

Able-bodied people (because to be honest, I’m pretty sure that’s who images like this are for- to make able-bodied people feel GOOD and INSPIRED and MOTIVATED etc) suggesting that anything can be overcome with the right mentality are not only grossly mistaken but also contributing to the societal idea that disabled people come in two categories:

1.Wonderful celebrated specimens of humanity- patient, humble, kind, achieving above and beyond what seems possible even for able-bodied people.

2. Bitter, twisted people who ‘let their disability rule their lives’.

We all love “Doctors told me I would never walk again but I did!” stories.  Not so much “Doctors told me I would never walk again and actually they were right and I still can’t walk but hey guess what I’m still a valid fucking human being and actually not your motivational piece” stories.

Disabled people, sick people, chronically-ill people are told “you don’t look ill/disabled” and on the face of it- yes it’s a compliment.  Who the fuck wants to be told they look like they’re about to dodder off this mortal coil?! But on the other hand, it’s a bit of a backhander isn’t it? “You don’t look disabled” i.e. “Well done hiding your disability.  God it would be awful if us ‘regular’ folk were confronted by the notion that we’re all just one biological failure away from disability.  Thanks for keeping it tucked away there, sport.”

I love an inspirational picture/article as much as the next person.  I love stories where people overcome barriers- regardless of what those barriers may be- to achieve things that are important to them.  I don’t want people to stop pushing themselves, to stop shouting from the rooftops when they achieve things that they, or other people thought impossible- whether that’s pull-ups in a wheelchair or just wiping your own ass when you’ve previously had to rely on others to do it.

But let’s not kid ourselves that pushing ourselves- that Positive Mental Attitude is the only thing that’s required.  For disabled and chronically ill people to achieve their full potential- their personal, individual full potential- not the dreams and goals YOU set for them, but their own, a can-do attitude is only a very small part of what’s needed.  Societal acceptance, and wide-scale change is also pretty essential.  Psychological input, a strong support network, and acceptance that some things might not be possible.  Reassurance that even if it turns out you’re NOT capable of pulling yourself up in your wheelchair, or indeed wiping your own ass. that you’re still- shockingly- a valuable person, who deserves to live and is worthy of time, and space and respect.

Of course, my story falls into the “happy ending” category- so far at least because I did walk out of the hospital.  It took time, but I hobbled out on crutches and now my remaining crutch waits in the hall, for a day in the future when I might need it again.  Because the reality is- it isn’t a “happy ending” until The End.  And I’ll be living with CIDP for the rest of my days, and I’m really hoping I have a lot of those left.  There’s no guarantee I won’t deteriorate, that I will remain ‘inspirational.’ Will I be less worthy as a human if I can’t ‘perform’ physically, if I can’t contribute to society in the only way it knows how to measure- labour and profit?

So when I see able-bodied people sharing the above meme, complete with caption (note, not the stand alone image) you should know that I don’t think “how wonderful that you’re celebrating this man’s achievement” I think “Do you even know what the fuck you’re talking about?!”

And if that makes me over-sensitive, well it wouldn’t be the first time I’ve been accused of it.  And perhaps you’ll be better able to understand my ‘sensitivity’ when I tell you that I had a panic attack in my bathroom this morning because as I brushed my teeth I caught sight in the mirror of how badly my hand was shaking, and from there it was only a brief leap for my brain to the memory of when I first bought an electric toothbrush (summer 2013) because I no longer had the strength required to move a regular toothbrush around my mouth.  Yes, I was really that bad.  And it only got worse- the electric toothbrush was a temporary fix, but as my condition deteriorated it became too heavy- I had to use two hands to hold it, and then eventually the concept of brushing my teeth unaided became a pipe dream.  But throughout it all, of course, I maintained my positive mental attitude- which only served to make me an utter bitch to be honest, because I felt I should be able to do all the things I couldn’t and if I couldn’t….well I just wasn’t trying hard enough. That kind of pressure is destructive.  Just ask my boyfriend who bore the brunt of most of my outbursts

“I should be able to do this!”

“Why can’t I do this?!”

“I don’t want to be like this”

“This can’t be my life”

It’s hard enough to accept you’re not in control of your own body, life, future, without being expected to OVERCOME YOUR BARRIERS and FIGHT YOUR DEMONS and ALSO BE INSPIRATIONAL FOR ABLE BODIED FOLK TOO PLEASE.

So please, stop with the able-ist propaganda.  Yes some disabled and chronically ill people might put your complacent asses to shame, but others might be struggling to exist without help, and perpetuating the myth that ANYONE can overcome ANYTHING if they only want it badly enough, is not just insulting, it’s damaging.

 

 

 

 

The Trial

Back in August when I wrote “One Year On”– a blog post marking the 12 months since my first hospital admission for (what we now know to be) CIDP, I mentioned a clinical trial I was possibly going on.

Back then, it was just a pie-in-the-sky “this maybe might happen at some point” kinda thing, but last week I finally got The Call from a research nurse, to let me know that they were now recruiting patients and to ask if I was still interested (the answer to that being a definite YES!)

See, the trial is to see if CIDP can be successfully treated with subcutaneous immunoglobulins (SCIG) at home, rather than intravenous immunoglobulins (IVIG) at hospital.  The idea of being able to administer my own medication in my own home sounds so good that ever since my consultant mentioned the possibility last summer I’ve been dreaming of the day when it could be a reality.  So when the research nurse asked if she could send me some more information about the trial itself, I was delighted.

Unfortunately, that was where my elation ended.  As when the information itself arrived, my happy-feelings quickly went away.  The trial itself is lengthly, in fact it’s really of an undetermined length as there are three phases and the first two are entirely dependant on you as a participant, or rather- your body/condition.  The final stage being a set 3 months.

There’s a lot to it (obviously, as it’s a clinical trial!) but I’ll try breaking it down very simply.  Basically first up, they need to be sure you are actually reliant on immunoglobulins as a form of treatment, so they take you off them (eeeeeeeeeeeeeeek!) and then when it turns out that you really do need it, they re-stabilise you, but rather than with your usual product/dose/infusion, it’s with the SCIG, and then, when you’re stabilised (however long that takes) they assign you to one of three groups, either low dose SCIG, high dose SCIG, or a placebo (eeeeeeeeeeeek!) and then after three months it’s game over and you’re back on your usual IVIG in the hospital.

Now some of that, I already knew.  My consultant had pre-warned me that they would need to be certain the participants actually NEEDED the immunoglobulins, so I figured there’d be a period where I’d be required to go without, and I also knew that I’d need to have some of my investigations repeated, like the electric shock torture, I mean, err…Nerve Conduction Testing…so some of it wasn’t a surprise, but a lot of it was, and not in a good way.  There was a lot to read through, and it laid it all out bare how many extra hospital visits it would require and how much upheaval and disruption it would potentially cause, and by the end of my first read through I was already thinking:

NOPE.

I feel so guilty in a way as I think it’s a fantastic study, and the results could have amazing implications for the future treatment of others with my condition, but I just can’t justify turning my life (and the lives of Chris, and the boys, and potentially a foster child!) upside down to take part in something with so much uncertainty when it’s going to have such a big impact.

So I went to see my neuro specialist nurse yesterday as I had a routine review appointment with her anyway, and the research nurse was with her, and I was just very honest with both of them about how despite my initial enthusiasm, I’d changed my mind, and they were both very understanding and generally lovely and made sure I knew that I was under absolutely no pressure whatsoever to take part.

My actual review went well- my scores are higher than they were in the summer, which is apparently unusual as generally us CIDP sufferers are worse in the winter (I do find I have more nerve pain and tremors, at the minute but I’m nowhere near as lethargic as I was in the hot weather, so…?) and then the topic turned to my treatment and what to do moving forward.  I still get a dip at the end of each month, it’s not as bad as it used to be, but there are still those last few days before my next infusion where I’m a bit shaky, a bit weak, generally lethargic, and well…a bit naff all round.  So the question was- can my dose be increased?  The answer being yeeees, but a tentative yes, because I’m already on 80g of privigen, so the next logical step would be 90g or even 100g, but those kinds of doses can’t be given over one day, so I’d be back to where I was at the start of last year when I had to spend two consecutive days each month at the hospital (not ideal, obviously).

In the end, my lovely specialist nurse called in my equally lovely consultant who’s answer was: “SCIG”

Which, I’ve got to say, confused us all, as the three of us all assumed he was talking about the trial.

“No, I mean, just SCIG”  he said.

Turns out, aside from the trial, a small number of patients are being started on SCIG at home already, as the small amount of research there is (mainly from other countries at this stage) is showing- it works, and is better for everyone involved.  So he wanted to know- did I still fancy it?  Without all the hoops of the trial to jump through, just- get trained up, and get going with it, doing it myself at home?  Errr….YES!!!!!!!!!!!!!!!

So that’s what’s going to happen.  I don’t know when yet, but I do know it will likely be quite soon, which is super exciting.

I know I’ve said this before, both here on the blog, and over on facebook, and probably on twitter, and definitely in real life too, but I’ve got to say it again: I really am SO lucky, to have been diagnosed so quickly, to have found a treatment that works so well for me, and to have such a fantastic team of professionals taking care of me.  It’s days like yesterday that really hammer that home for me- I go into an appointment feeling anxious, and come out feeling reassured and really positive about the future.

 

JanuaryIVIG

(That’s me having my infusion 2 weeks ago, it was about 3 hours late due to the ward being busy- something that won’t be a problem when I’m doing it myself- yay!!)

The Stand

I have finished the first book of my Great Re-Read of 2015

thestand

Usually, when I read this book (I say usually, because I have read it a fair few times now) I get ill or the people around me do, and I become royally freaked out (understandable I think, given the subject matter!) but this time it hasn’t happened, for which I am very thankful as my body seems to be struggling enough at the minute without adding any further burdens to it’s already strenuous load of having to exist and perform the daily tasks of living.

Anywho, before this turns into a health-related grumble- back to the book.

Stephen King’s The Stand is undoubtedly one of my favourite books, which is sort of weird, as it’s one of the very few books of his I’ve actually read all the way through.  I say sort of weird, because usually, when an author has written as many books as he has, people tend to go the whole hog, and list them as a favourite author, maybe cherry-picking a couple of their books as examples of their greatness, but for me, as talented as the dude clearly is, it is that specific book that I adore, and that manages to blow my mind every single time I read it.

My first experience with The Stand was watching the TV adaptation with my Mum in the late 90’s.  It terrified us both, her I assume because parts of it were genuinely spooky, and me because I was way too young to be watching it, in all honesty but I probably swore blind it didn’t bother me.  Even now I can close my eyes and conjure a particular scene- I think where Stuart is trying to escape the plague centre, and the bodies by the lift door, so obviously it hasn’t in any way mentally scarred me…*ahem*

Then as a teenager I was in a Waterstones and saw the paperback “uncut” version (apparently big chunks were edited out of the original that King later replaced) and bought it on a 3 for 2 deal, read it, had my mind blown, and have continued to read it fairly regularly since, although I think it’s been about 2.5, maybe even 3 years since my last read.

I have now read it so many times that I feel like I actually know the main characters personally, and reading the book again is like going to visit old friends, with that sense of familiarity and homecoming, a sort of catching-up “hey, how’ve you guys been since my last visit?” but my story has changed each time whereas their’s remains eternally the same.  That said, despite knowing exactly who everyone is and what happens and when, I still get All The Feels, each and every time.  It’s not even like I forget parts of the story and am freshly surprised, I know what’s coming but it affects me all the same- that’s some pretty impressive shit, if you ask me.  How well written does something have to be, that it can still cause laughter, gasps of horror, and real actual tears on it’s (estimated) 20th read-through?  Very, I reckon.

If there is anyone reading this who doesn’t know what the book is about, first up: WUT?!  Secondly- it’s about the majority of the population of the world being wiped out by a (man-made) virus, and about what happens after…and ultimately it’s a take on the oldest story there is- good vs evil.  But it’s also about so much more than that- it’s about people, and how they cope in times of crisis (or not) and their capacity for change, and about love and friendship and about western society, and politics, and war.  It covers so much, that it’s really hardly a wonder it’s so epically fucking long (my paperback edition has 1421 pages).

I usually end up staying up late, trying to finish pages/chapters/sections/the whole goddam thing, devouring it over 2-3 days, ignoring all other responsibilities, but this time I made a concerted effort to slow down.  I still read some most days/nights in the last week (and it has still taken me only a week to finish it) but I kept telling myself not to rush, that I already knew the conclusion, so just to enjoy the ride.  It meant I noticed things I haven’t before, things I was surprised by, such as the fact that there are two separate secondary characters in the book called “Rudy”.  If someone had quizzed me, I doubt I’d have known that fact off the top of my head and yet, there it is.  One of my most favourite books of all time, and it contains two characters who share their name with my youngest child, and yet consciously at least that never entered my head when naming him.

One of the Rudys is the guy who taught the “deaf mute” Nick Andros to read and write as a kid, and reading it again this year really cemented what I have always known to be true- that Nick is my absolute favourite character in the book.  I told this to Chris (who has never read it, but heard me talk about it so much he probably feels like he has) and he told me that Nick had also been his Mum, Joy’s favourite character too, and that made me smile.  I don’t know if she and I ever discussed the book, when you look back over years it’s hard to pinpoint specific conversations, or exchanges of information, it’s more a memory of talking with a person and feeling happy and comfortable in their presence, but it makes me happy to know we had that in common.  Nick fucking rocks as a person.  And so did Joy, actually.

That brings me on to another thing I noticed, or felt more acutely reading the book this time- the spiritual or religious element.  I appreciated Glen’s observations a lot more this time, and I think for the first time grasped the enormity of the outcome for him.  An atheist sociologist, paying the ultimate price in a war between good and evil- not because he believes in God, or the devil, but because he believes in a people and is willing to defend their right to live peacefully, even if it means sacrificing his own life in the process.  That’s some heavy shit right there.

I also sympathised more with Larry than I think I have in previous read-throughs, and even, to a certain extent, Lloyd.  I guess as I’m getting older I can appreciate more the subtleties of human beings and how many shades of grey there are in-between good and bad.

All in all, it felt really good to read it again after such a long gap since the last time, and like all good books that stick with you in some way, when you read it, you don’t only get the memories of the book itself, but your own memories from previous times you’ve read it.  I could see my past self trying to read it one-handed whilst breastfeeding (virtually impossible due to the thickness of the book!) or hunched over in the lamplight in the bedroom of our old flat, or sprawled out on the carpet, beside the floor-length window in my room in the children’s home.  And yet no matter how many times I go on this adventure with this book, it’s never exactly the same as the time before because I’m slightly different myself, so my focus shifts or different things spring out at me in different ways- like me just noticing the Rudy thing this time, for example.

So, my plan for ‘The Great Re Read’, had been to stick to set headings, such as:

What the book is about

Why I love it so much

How long it’s been since I last read it and

What it was like reading it again this time

but clearly I have totally failed to do that here, and have just rambled at large, although I think I’ve kind of covered all those things…sort of…so I guess that’ll have to do, and I’ll try to be more structured with the next book, which I’ve decided is going to be…

 

the gargoyle

Yep, so far I’m sticking to list order!  Before that I have a couple of (new) books I want to read, so I’m going to wait until February to revisit this one- see you then!

 

 

 

 

 

On Hats

I’m surprised not to see any tumbleweed blowing through here, so neglected has my blog been of late.

I have actually been writing a lot, I just haven’t hit “publish” in a while.

The truth is, a lot of what I have wanted to say, I wasn’t sure how to express in a way that did the subject matter justice, and as for the rest of it, well I don’t know if every thought I have needs broadcasting to the world (although arguably, that’s sort of the point of a personal blog I guess).

I’m here today to talk about hats.  Metaphorical ones.  You could also consider this my resignation letter from doula-ing.

Yes I know I only just started, but already I’m done.

Truthfully, there are many reasons why I’m calling it quits, but really when it comes down to it- it’s mostly the on-call stuff.  To be on-call 24/7 for 4 weeks in a row, with 2 children under the age of 5 is hard.  It was always going to be hard, so I didn’t go into it with rose-tinted glasses, I went into it saying “we won’t know until we try” and we tried, and now we know- it isn’t going to work.

There’s also my CIDP, which I hate to trot out in instances like this as it feels like I’m using it as an excuse.  But one of the (main) reasons I left nursing was to avoid having to prioritise work over my health.  Shiftwork + fatiguing chronic health condition= bad.  In my doula role I recently broke my “staying awake” record, (which was previously 39 hours) to a brain-melting 49 hour stint without sleep.  49 hours.  I woke up at 7am on the Friday and got into bed at 7am on the Sunday and during that time the clocks went back.

You can imagine, I think, what that would feel like as an ordinary person in good health.  For someone whose body trips-out by 7pm somedays having had a full night of sleep the night before, it felt like nothing I can begin to describe, and certainly nothing good.  Pins and needles, weakness, twitching, shaking.  Basically imagine your house needed totally re-wiring (as my body does) and that you put on every single piece of electrical equipment- washing machine, kettle, blender, hair-dryer, vacuum cleaner, every single light blaring…for 49 hours.  That was me after my client gave birth.  A house about to blow.

I can’t do that again.  And to be fair even were I to continue as a doula, it’s unlikely I’d need to.  Labours that long are rare, not unheard of- but it’s not the norm, but then even half that would be pushing it if I’m honest.

There’s other stuff too.  Lots of little things about the reality of life as a doula, that could only really be brought to my attention through actually living and experiencing it, and I’m so thankful that I’ve been able to.  If I’d never tried, then I’d always wonder- could I have done it?  What if x, y, z…then would it have worked?  At least this way I have tried and I feel without a shadow of doubt in my bones that it’s not for me.

Not because I don’t love birth.  I love birth.  Not because I’m not passionate about the importance of women having someone to support them during labour, because I am more passionate about that than ever.  Not because I didn’t enjoy the experience I had, because it has been incredibly special, and I feel like I have gained as much as I’ve given, and that’s despite me having taken it on as a voluntary case in this instance.

It’s not because I am disillusioned with doula-ing.  It’s because it isn’t for me.  At least not now anyway.  I suppose you can never say never, so maybe one day it’s possible I will be in a different position, and could come back to it.  The same way I would never say I’d never go back to nursing- who knows…maybe.

But what  I do know is that I’m totally at peace with hanging up my doula hat.  I confess I’m getting a little nervous about my old hats collection- it’s starting to mount up, and when you are remarkably at ease with quitting yet another thing, it does get you wondering if the problem might be you…

Maybe I’m not a hat-person. (Breaking the metaphor- I’m actually really not, at all).

But until I know that for sure, I’ll keep trying them on.  I haven’t been able to sample the fostering one yet, although things on that front are moving pretty steadily now and I’m looking forward to seeing how that will fit, but in the meantime I plan to spend a lot of time in my writing hat, which I imagine as being like a cosy beanie, even accommodating my dreads.

hat

In my parenting hat, which is awesome- a bit heavy at times, but definitely one of my absolute favourites 😉

A False Start

So, after my major freak out, the first two days of school were totally and absolutely fine.

He was fine, we were fine, everyone was fine, it was fine.

On the first day parents were allowed to stay until 10 past 9, so we did.  Then he gave us kisses and went and sat on the carpet for register without so much as a backwards glance and we left and that, as they say, was that.

The second day was much the same.  Both days we were able to linger on the school premises for a little longer as they’ve put on tea/coffee mornings every day for the first two weeks, which I think is a great idea as not only does it feel less dramatic than striding straight out of the gates, but it’s also been nice to meet and start getting to know some of the other parents.

So I wasn’t quite at the stage of congratulating ourselves on ace-ing the whole starting school thing, but I was feeling like I had a grasp on the whole situation, when The Puking Began.

Yes, it would appear 4 year old’s have their own version of Fresher’s Flu, and it involves a tremendous amount of vomiting and diarrhoea within a fairly short but intense window.  So, as it turns out, this whole plan we had, of Chris taking a week off work to help us all get into a routine etc has been shot to shit (no pun intended there, sorry) as days 3 and 4 of the first week of school were a total no-go.  We’ve spent them at home, in our pyjamas, doing laundry/watching movies.

So the first week of school, has actually been a bit of a false-start for us, and I feel like if we’re going to run into ishoos (his, or ours) then it’s more likely to be next week, because not only will he be doing five full days at school in a row for the first time, but it’s also my final week before IVIG, which will make the whole getting up at 7am and walking 4 miles a day errrr….interesting?!