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?



That’s the only way i can explain why the past two weeks have been so much better than the preceding two.  Positive mental attitude.

Nothing tangible has changed.  Chris is still super busy juggling placement, uni and part-time work, Toby is still testing his boundaries, Rudy still fights sleep, and as an added bonus, now also feeds more frequently during the night and has started waking up earlier too?!  So all this considered, you’d think i’d actually be feeling pretty stressed/worn down/fed-up, especially now that we’re all ill again (as of yesterday) but in fact i’m feeling…well…pretty good actually 🙂

We’ve had quite a busy couple of weeks, which i think helps.  It’s always nice to have something to do, especially if that something means you get to see your little ones enjoying themselves, and there has been plenty of that happening.

Last Saturday we went to a joint birthday party for my friend’s two little boys who are turning 1 and 3.  They have almost exactly the same age gap as Toby and Rudy (but are a bit further ahead, obviously).  I remember when it was their eldest’s 2nd birthday and so their youngest was 3 weeks old, and i was pregnant with Rudy at that point (although only just!) and thinking “so this is what i am letting myself in for!” but my friend is pretty amazing, so made it look a lot easier than i probably do!  Anyway it was a bit of a trek over to the party (an hour’s trip in the car) but that worked in our favour as both boys slept soundly pretty much the whole way so were nice and refreshed for the party itself, which was held in their local church hall.  I wasn’t sure what to expect but they had tables set up with activities like card-making, cake-decorating, seed-planting etc, plus a big space for the kids to just run around (which a lot of them were making the most of!) and there was party food and games and face painting.  It was a really nice day.  Maybe more so for me than for Chris as for me it meant the added bonus of a quick catch-up with a few of the girls i did my training with, whereas he didn’t really know any of the grown-ups.  Toby had a brilliant time though…

We did cake-decorating:

And cake-eating 😉

Lots of running around

Had some party food

And sang happy birthday to the birthday boys

And at some point Toby turned into a pirate!

Excellent! 🙂

The next day (Sunday) Chris was working a long day (8am to 9.30pm) on placement so i took the boys over to my best friend’s house and we had a really lovely day, with yummy lunch (and cake!), lots of cups of tea and a much-needed catch-up, as we don’t get to see each other all that often.

Then on Monday we all headed in to town, in the rain as Chris had an eye test and i needed to pick some glasses out.

No that wasn’t a typo, it was his eye test, but i also had an eye test back in November and was told i need glasses (which i knew to be honest!) but i couldn’t find any glasses i liked, and perhaps was also a bit in denial about needing them.  We did try picking some out a couple of weeks back but Rudy was hungry and Toby was bored and i was frustrated with the whole idea so we gave up.  This time though, both boys were asleep and i found a pair i liked almost straight away.  Unfortunately then Chris came out of his appointment and also needed to pick a new pair of glasses, and that’s when it all got a bit trickier.  He’s been wearing the same glasses all day every day for a few years now, so fancied a change.  I have got used to his face looking a certain way with a certain pair of glasses on so immediately rejected every single pair that made him look even a bit different! I wasn’t being deliberately obstinate, it was an involuntary reaction! Also, financially, one person needing new glasses is an inconvenient expense, but two people needing new glasses is quite a substantial investment! So those two facts, also coupled with the fact that the sales assistant guy was a bit of a pushy arsehole, meant that Chris gave up on the whole idea and is going to have a look around (no pun intended) before making his decision.  Mine have been ordered though, and will be ready to collect next week, at which point my transformation into geekdom will be complete 🙂

I should add that i don’t actually think other spectacle wearers are geeks, it’s just when i see myself wearing them, i know for sure, that i really am the actual biggest geek alive.  Which i am, but this way the truth is out there on my face, in plain sight for all to see.

Anyway, it was pouring with rain while we were in town.  Initially Toby was asleep in the quinny (facing forward) and Rudy was on my front in the connecta.  Then when we glasses shopping Toby woke up and wanted out of the pram.  Rudy then woke up shortly after and was getting all hot and bothered in his fleecy sleepsuit in the sling, so i took him out and put him in the empty pram, which he really rather enjoyed, so when it came to heading back to the car we were initially going to try persuade Toby back into the quinny and i was strapping Rudy back on to my chest, but the rain was really coming down and Toby was determined to “do walking” so i put Rudy back in the quinny, but switched the seat to be parent facing and Toby walked holding Chris’s hand.  It was the right thing to do as Rudy would have been soaked otherwise, and he was nice and snug with the rain cover on, but he just looked so far away from me down there in a little plastic bubble, it was a bit strange.

Toby thought it was hilarious running through the rain with his Daddy though.  I had my camera in my changing bag as that’s pretty much where it lives and did a quick snapshot as i didn’t want it to get too wet and ended up with this fab picture of the two of them:

Tuesday was Pancake Day and that was a disaster.  I burnt most of them, Toby wouldn’t eat his (even though i gave him the non-burnt ones), Rudy was screaming, seemingly not wanting ANYONE to eat ANY pancakes, the smoke alarm was going off.  In the end i gave the pancakes to the dog, strapped both boys in the double buggy and went for a walk and felt a lot better after some fresh air (plus, as a bonus, they both fell asleep, so i had a bit of peace, albeit briefly!)

On Wednesday we went to the sling meet social at a soft play centre we’ve never been to before and it was fantastic, i was really impressed.  I don’t know if i’ve said this before but Toby isn’t the most daring of toddlers when it comes to the whole running, jumping, climbing-trees thing that boys are “supposed’ to do, and needs a bit of encouragement when it comes to his physical capabilites, but after we’d been there for a bit and he’d settled in and i’d accompanied him into the actual play area a couple of times and he’d got a feel for it all, he started venturing a bit further into the play area, and then at one point i was having a conversation with someone and realised i couldn’t see him anymore, so did a quick scan and thought “Is that?…No…it can’t be…It is! It’s Tobias…all the way up there!” and he was basically, well, as high as it gets! Clambering up a squidgy staircase towards the ceiling! It was brilliant to see him so confident and having such fun.  Later he seemed to make a little friend and they were riding together in this “Ice Cream Van” ride that someone kept putting money into (no idea who- i certainly didn’t!) and then chasing each other around on trikes and generally having a great time.

I also made a couple of new friends, or talked to a couple of people i hadn’t met before anyway 😉 and one of the sling meet organisers gave me a demo on how to use a wrap to do a side/hip carry which was great as i’ve been considering getting a ring sling for Rudy as he’s so nosy and interested in what is happening that he’s finding the stretchy wrap really restrictive/frustrating now and seems to be trying to battle his way out whenever he’s in there, but at the same time does enjoy being carried and does need to be able to go to sleep when he gets to that point.  Anyway i saw this particular mama using a wrap to carry very much like a ring sling and was really sold on the idea of doing that instead.  That way, i am spending the same amount of money (more or less) but getting more for it as i can do lots of different carries with the same wrap.  Or at least, that’s the theory anyway.  Whether or not i actually manage to master lots of different carries is another matter!

We shall soon see though as fortunately (or perhaps unfortunately, depending on how you look at it!) i had paypal funds from the ebay selling i have been doing recently, and our very first wrap will be on it’s way to us come Monday- yippee! I’m actually pretty excited, just hoping it’s not too much of a steep learning curve after the stretchy!

Then yesterday (see, i did say it has been a busy couple of weeks!) it was Rudy’s first Aquababies lesson.  He enjoyed the first half of it and screamed for the second half, but he was hungry, bless him and after a good feed in the changing rooms he was quite contented and blissed out.  He fell fast asleep on the way home and stayed asleep for quite a while, then woke up briefly had a bit of a look around and some cuddles but still looked shattered so i took him to bed!

Today we did zilch.  We went to the shops for a few bits but other than that nothing at all really.  We’ve all come down with a cold (again!) and are all snotty with rattly coughs.  Chris had to go into placement anyway so me and the boys just took it easy at home, watching Charlie and Lola on DVD and doing colouring-in for the most part.

And so, you see, two busy and on the whole, fun weeks! Let’s just hope my PMA survives this latest virus!

Let’s end with a cute photo just because 😉 Taken on Valentines Day: