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?


Turns out, I dislike reality

Following on from my last post in which I told you all about how I’ve recently been forced to shed my cloak of denial when it comes to the issue of SCHOOL and particularly, the school we’d like Toby to go to I am here to once more bore you to tears with further ramblings along those lines.
See, it turns out I actually really dislike reality and want my cloak back now please.
We found 2 schools we liked and 1 we didn’t like.  All three of those schools have pre-school nurseries attached to them, and Toby would be eligible to start at any one of those this coming September.  One of the ones we liked was oversubscribed and just over half a mile away, when I asked if we could put his name on their list I was told they had filled their places with children all living with 0.3 miles of the school and in fact they had a waiting list of children all living a similar distance away.
As for the one we didn’t like so much, two days after we visited, we rather coincidentally received a letter offering us a nursery place there.  Slightly too coincidentally if you ask me but I may be just being cynical at this point because I got a really strange vibe off them.  Like the other 2 places we looked around had a “We’re here to provide a service to you, so you ask the questions and call the shots and tell us if you like us” attitude, but this other place had a “YOU’RE THE ONES BEING ASSESSED” kind of vibe, which was icky.  There were other things I disliked about it too, like the fact that the person showing us around didn’t talk to Toby at all.  In fact she resolutely ignored him.  Exactly what I am looking for in a prospective school- staff who seem to hate children.  Toby even picked up on it and asked half way round (really loudly) “WHY ISN’T SHE TALKING TO ME DADDY?!” Awkward.  Good question though kiddo.  Also, and this isn’t intended to offend anyone, but it is a church school, which I was not overly keen on the idea of, but willing to consider, and I was told the nursery did not have any religious aspect to it, as it’s multi faith, but there was a cross nailed to the nursery room wall, and a few things on the walls in fact that made me wonder if the school’s take on “multi faith” might be different to my own.  The nursery teacher seemed perfectly pleasant but looked stressed out of her mind, and like she might burst into tears at any minute.  Her expression was how I imagine mine is when we’ve been having a really bad day and I’ve got both kids in the supermarket, one mid tantrum and the other declares “I need a wee NOW!” You know- that on-the-verge-of-a-breakdown look.  She told us that the kids in the nursery have free access to the outdoors (which the other 2 places we looked did too, and had kids running in and out constantly) but here the door was locked, and when a little boy asked if he could go out he was told no because reception were playing out.  (Wtf?!)
The 3rd school though, the one we liked and that is also our closest, geographically (0.3 miles from our door to theirs, as the crow flies) have only just allocated their nursery places.  I got the call yesterday.
He didn’t get a place.
Now, if I am totally and completely honest here, Dear Diary, I am not sure that I actually wanted him to go to preschool nursery full time from this September, as it seems like a massive leap from his current two days a week at private nursery, and I had some doubts BUT I did also appreciate it would have been good for him to start at the nursery there and have the opportunity to get used to the building, the staff, the routine, the playground etc before starting school there next year.  We both figured his chances of getting a place were good BECAUSE IT IS 0.3 BLOODY MILES AWAY!
If I stand on our doorstep I can sometimes hear the pupils playing out in the school playground.  It takes 10-15 minutes maximum to walk there AT TODDLER SPEED.  I could get there in five if I was on my own.  It is our closest school.  IT IS 0.3 MILES AWAY!  They have 60 places in the nursery and they are all allocated on distance as the crow flies and guess where Toby placed on the list? 67th.
He is 7th on the waiting list.  There are 66 children who live closer to that school than us apparently.
HOW?! Is what I’d like to fucking know!  Where do they LIVE?! In the bushes surrounding the school playing fields?!  Do 50 of them live in the same fucking house?!  Did they put the postcodes of their cars parked out the school gates rather than the postcodes of their actual houses?!
Or, like, WHAT?!
There are about 10 schools within a mile of us, each with an intake of between 30 and 90 pupils per year and there are STILL NOT ENOUGH PLACES for every child.
The good (???) news is, that the school has just been made to increase it’s intake from 60 to 90 pupils per year so from the year Toby starts reception there will be 90 places (3 classes of 30) so given his position in the nursery queue I am hopeful he’d qualify for a place at the school.  But does that make sense to you?  I am hopeful, that he’ll get a place at our most local school?  What kind of a crazy fucking society do we live in where it isn’t a given that a child can take up his free education at the nearest available facility?
Oh that’s right, the same society that inexorably pisses me off in a myriad of other ways.  Gah.
And don’t even get me started on my thoughts, feelings, concerns, anxieties and general ramblings on the schools system, education and assessment once he does actually get in somewhere, because we will be here all day and all night and I have to cycle through frustration, wonderment, depression, mild annoyance and pure fury and despair and it’s not pretty.
*big sigh*