The Christmas Nutcracker. 

The morning  before Christmas eve the post hit the floor with a whack. A tonne of cards, January sale books already, and some very familiar envelopes. After a while you get to know specific envelopes and where they are from. I knew someone from UCHL was in touch. I expected an appointment to be in one of the envelopes and a cancellation to be in another. I was wrong.

Two letters which looked like clinic flow up letters arrived. However I hadn’t been to any clinic recently and they were not follow ups. In fact I received a nasty surprise. Another four labels, delivered in the form of a letter. No one had discussed these concerns with me. No one had given me a chance to answer any questions. No one had stopped to consider the impact further diagnoses would have on my psychological well being.

At first I was angry. I didn’t feel it was appropriate to deliver this information in a letter. Then I was worried, with doctor Google being the only option  for explanation of what to expect. Then I thought it was a great big joke, because on December 23rd one of the conditions in the letter is known as ‘Nutcracker Syndrome’. And then I went back to angry. 

It’s some time on now and I’m still unhappy about it. But I’ve formulated a plan, and I hope to be able to return to work albeit on a lesser basis very soon. 

The labels are taking their toll.  I’ve had over 40 suggestions now. I’m beginning to view them as suggestions at this stage because it’s the only way to not lose the plot. I’ve taken the endless prognosis with good humour until recently. But once the acronyms and labels crossed about 30 I began to despair. I actually began to ‘take on a role as a sick person’, and that’s just not me. It’s time to turn it around. Maybe the abysmal mode of delivery has done me a favour ? I’m not sure… unfortunately I’m also not entirely sure on how to turn it around and how to repair any damage that over done in the process (unfulfilled orders while I’ve been too ill to be around for example. And no product development. No shows at craft fayres). But I won’t know if I don’t try. If anyone reads in from the big wide web who can help me solve this I’d be super grateful of your wisdom. 

The cracked nut. X 

A perfect imperfect Christmas. 

Christmas has been and gone, and to be honest ? Thank goodness for that ! I love my children to bits, they are my universe and everything in it. I love watching their happy faces over Christmas. Nothing bears those smiles. But for a Mum with a growing family Christmas is anything but a holiday. While everybody else sat playing with toys, eating sweeties and watching movies I continued toiling in the kitchen, just as I had on the 23rd and 24th.

In a house with so many people the gift pile is staggering. Even with fewer each than the u.k average there were still over 130 gifts to wrap all inc, and for the first time in 15 years I was very behind due to such a poorly year. I was even more behind on Christmas Eve because satan had clearly taken my children and replaced them with his harpies to piss my day up, so they didnt get the christmas eve box which I’d toiled to make over the last three months. Wr never got to watch the mlvie which I’d really bought because secretly wanted it for myself, and the little toads would not stay in bed. Even using santa as a blackmail tool just like billions of other parents were doing that day did not work! By 10 pm (2.5 hours after bedtime) my jaw musxles were tight that you could have used me as a bloody can opener! Even with 4 adults working at the last wrapping chores and trying to work out how we were meant to fit anything in the kids new stockings it was gone 3 am before we all got to bed. So as you can imagine we were super grateful that the children slept in until nearly 10 am. 

Present time was lovely. To see the children, even the adult ones, so happy makes the work worthwhile. It was magical. But it can quickly turn from happy to hyper, which it did. I broke the Christmas ‘no shouting’ rule and dropped my first fbomb of the day… 

Christmas dinner is nothing short of a banquet in my house. I dropped many fbombs, especially when someone turned the oven up while I was laying the table and cremated the starter. Oops. As dinner commenced I began considering recording certain phrases on my phone and just hitting a play button rather than repeating myself over and over again… 

“No poop or boogers at the dinner table!” 

“Stop hiding your veggies under your chair!” 

“Don’t put gravy in your brothers ear.” 

“No, it’s not ‘tits’, Turkey breast meat.” 

“Yes, I’m certain that’s stuffing, and that’s neck end.” 

“You’re sprouts aren’t bouncing bombs keep them on your plate.”

5 courses and 1.5 hours of answering questions about turkeys butts, poop jokes, and refereeing sly elbow fights I nearly cried at the industrial sized pile of washing up… I did get through it eventually. Finally, my chance to play with some of those toys which, again, I’d bought for my own amusement really. We watched trolls on our visiting friends amazon fire stick and bedtime rolled around all too soon. After stories and kisses and tucking in time I poured a cheeky Prosecco. I had intended to make friends with the bottle, but my refreshingly honest one Prosecco, two Prosecco, three Prosecco floor status was a fading dream. 2 slurps and I was gone, into lala land, absolutely wiped out. 

But in my book that makes Christmas perfect. It’s not about the movie scene, perfect snapshot Facebook status Christmas. Those Christmases aren’t real, they aren’t child friendly, and I  all honesty while I covet peace and quiet, I can’t see the fun in such a Christmas. Christmas is about excited children, about flicking peanuts at a loved one during a game of monopoly and then swiping a house or money from their like when they turn around to look for it. In my book  these perfect Facebook snapshots put real parents under too much pressure to achieve what looks like perfection  but may be the furthest thing from it… I was thanked for my honest Christmas status that evening, my Christmas confessions list. But I think it’s something we need to do more of. Perfection is nice, but authenticity is perfect . . . 

Merry Christmas guys. X 

Christmas from the BlueBadge Zone.

On Thursday I went out into the wilderness of Waitrose. Yep, I really went out of my comfort zone there eh? 

Why is she blogging about a trip to Waitrose you wonder ? Well, you see, Waitrose bought me a Christmas miracle this week. Awwwww, a warm and fuzzy Christmas miracle eh? Wishful thinking there mate. The Christmas miracle that Waitrose gave me was the realisation that “Shit! Christmas is nearly here!” Since the summer the extent of my trips out have been the front seat of the car, my little girls preschool, and the hospital or occasionally a doctors surgery. In all honesty, it’s been a bit of a pissed misery. 

But Christmas is everywhere, right? All over the TV, all over the online adverts, all over Facebook and Twitter ? Well, that’s a bit like saying that because there’s a Knicker factory on Corrie so I must be knowledgable on how to keep a thong from riding into cheesewire, or because i once watched star trek i can fly a spaceship. Until this week Christmas was simply a bunch of abstract concepts popping up around some places where I spend less than 5% of my waking hours (This being the only time I’m awake and not coughing blood).

The problem is, I have children. Young children. Children who believe in santa and are hoping for presents. I also have an autistic 18 year old. To put this into perspective, for all of his bluster and hormone fuelled unchanelled rage, he is stuck at 8 with a great many things. Cheeky,funny, somewhat materialistic… he also wants presents, and turkey. I’ve been doing little bits and pieces through the year, but compared to the explosion on a crap factory that is modern, competitive, commercially stoked christmas? I’ve done nothing.

Shopping, I am not even going to entertain the idea of shopping in the flesh at this stage. Im not currently in a position to go it alone. This means I’m tied to weekends mostly. The week days I could do now have nativities in the middle of them. Weekend shopping in December, in a wheelchair teaches you very quickly where good will to all men lives. It lives in the bank balance of Mark and of Spencer. It does not live in any of the bags that I’m likely to get smacked in the face with, the large bottoms which almost land on me when they decide to shoot past my wheelchair when they can see that it is moving and should be able to work out that its easier for them to wait or change course than it is for me to pull an emergency stop or change course in a split second. Stopping distance people, stopping distance !

And if I thought that shopping was bad, well it’s roll in the park compared to trying to see Father Christmas with my children. I should have thought of this a while ago really. When I did think about it in September I couldn’t book tickets. Now that tickets can be booked they’ve all gone for the bookable events. that leaves Santa in a caravan. I can’t get up the ramp. I can’t see in the van and so I can’t take a photo of the children. But this is undoubtedly the only way that they will get to see Santa this year. there are Santa’s where you can queue but the slalom of roped queue systems are not chair friendly. Waiting in the cold in a chair is not a fun experience either. Seeing santa with the children is something that I regret not making the most of now that I’m out of club Santa. 

Christmas from the BlueBadge Zone is such a strange place to be. You miss the build up, you miss the hype. It just plonks itself upon you rather unceremoniously. You sit rather dazed, and confused, as the rest of the world is putting up their tree and bragging that their shopping is done. The lead up to Christmas passes you by.

I miss getting out and about and making things that bit more special for the kids. If I could have one thing this Christmas season it would most certainly be an accessible santa. That look of joy on a child’s face when they see Santa is better than any othed gift. it’s something that I miss. 

Anyhoo, It’s Christmas in the shoe-shack now. Mr amazon saved the present disasters. The Dec’s go up tomorrow, oh, and “he’s baaaaaaaaaaaack’

The beauty of the future. 

There’s a big race! which one will win? Will it be the contender that I’ve backed, or the other one? As I watch a bigger player come along and swallow up both contenders as they all run down the window of the car on this grey, miserable day, I am consciously aware of the glow reflecting in the glass. It’s coming from my phone screen. The screen which I am avoiding looking at. 

It’s one of those weeks where we’re about a month into all feeling a bit sad (though that is not to trivialise SAD in any way) because the sun has abandoned us. It’s the sort of time that the ‘love yourself’ challenges start with a vengeance and boy, have they. This month’s ‘challenge’ which is doing the rounds is the ‘love yourself by sharing three photographs of yourself looking stunning.’ and the ladies on the photographs do all look stunning. I hope that it has worked for them and made them feel a little boost. I can’t help feeling that they are just are little bit pyramid make up or pyramid fruit pill diety. But the last 7 years had given me a 2.1 in cynicism. I’ve been tagged in sixteen of them. Yes, sixteen. 

This week is not a good week to have been tagged in the ‘look gorgeous’ type challenges. I feel like shit. In fact, I feel like I’ve been pooped out of a cat and then eatern by a dog, pooped out of the dog, and left on a verge to go white! I’ve got a monster of a chest infection, I’m overdue infusions so I’ve got 26 mouth ulcers, my skins busting open, both sides of my mouth are split. I’ve fallen down the stairs and bust my front tooth, and my hair is falling out (disability is pretty isn’t it? I’m afraid this is the unglamorous reality of it though). So on top of the day to day disabilities, all sorts of reactions have come up and I’m coughing up blood. 

My friends, this week, you’d be damned if you do and damned if you don’t. tag me and I hate you for reminding me. Leave me out and I cry my eyes out because you must hate me for not including me. You can’t win and that is on me, and for me to pull my socks up over. 

I looked through those gorgeous tags though. All of the women do look stunning. But all of the women are wearing make up. Lots of make up. And generally, night out clothes. Why ladies ? Why oh why? Why not show us photos of your day to day glam? Because you can, and do look gorgeous on a daily basis. I’d love to see a challenge like that. And fellas ? Where are you in all of this ? Men can look gorgeous too. I’d like to see more men posting  three self-esteem boosting pics. Or even couples doing it together. One you, one your significant other and one together ? 

I look back at these well made up, night out photographs, and I realise that although I am pretty certain that I do look considerably more unwell and hideous than the rest of you, that your minds are telling you the same as mine are telling me. I also realise that my children deserve a much better example in how to be kind to yourself. A daughter sets her Mother as a benchmark. She needs to see that we all have flaws but that we all have beauty too. A daughter deserves to know how to tap into that beauty, but she can’t do it alone. She needs to see you learn to tap into your own, she needs to see you compliment others and to accept compliments from  others. She needs to see the man in your life compliment you. She needs to see that its not conceited to feel gorgeous sometimes, and she needs you to tell her that she is gorgeous in a realistic way. Your sons see you as a benchmark too. To a son, for at least his formative years, his Mummy is the most beautiful lady in the universe. If you don’t take his compliments with good grace he will learn not to compliment the main lady in his life, he may start overlooking beauty. In short neither he or your future daughter/son in law will thank you.

Deep down, even though the ails and limitations of disability tend to be at the front of the worry queue, I am still a woman, wife and mother. I still have the same worries and crises of confidence as any other woman. And I still have the same influence and responsibility towards my children’s developing  perceptions of life, love and everything in between. So while I feel shit about my looks I’m kind of grateful for the opportunity to have ‘normal woman worries’. 

Falling like leaves

As the leaves change colour
And a chill fills the air
I turn on the news
And I’m filled with despair.

Cuts, caps and sanctions
Hardship all round
I stare out of the window
At leaves on the ground.

That voice on the radio
My god it goes on
Spreading the misery
The upset so wrong.

Work sixteen hours
To be exempt from the cap
Or if you’re disabled
But that’s total crap.

For us broken, us sickies
It’s not coming up great
We all get to dread
Our own special fate.

Work capability assessments
‘Cause our doctors are wrong
We made up our illness
Our bloody big con.

We choose to be ill
To get out of work ?
If you believe that
You’re a big right wing jerk!

Our finances strangled
Our social lives dead
Feeling so worthless
More struggle ahead.

Early one morning
Comes a thump on the floor
The PIP pack
Has arrived through the door.

The arbitrary questions
Don’t offer the space
To help the assessor
To grasp what we face.

The face to face assessment
Doesn’t cut any slack
A sympathetic front
But a knife in your back.

In a mere half an hour
An ATOS assessor
From a half arsed exam
Knows more than your doctor?

This is the day that you hope
For a bloody great flare
Not that it feels like
They’d actually care.

Now you’ve got coming
Long days filled with pain
You really can’t face this.
Again and again.

But you know it’ll happen
At least every decade
You’ll get a nice summons
For this ghastly charade.

It really doesn’t matter
The UN have said “No!”
“This inhuman shite
Is an abhorrent show.”

The able bodied elite
Call the feedback unfair
It doesn’t matter anyway
Why would they care ?

If you need help long term
In the austere UK
You must suffer more
To ‘appease those who pay’

Broken in body
Shattered in mind
Shut up, take your fate
And sit left behind.

But it wont last forever
The voting public
Deep down are good people
Who care for the sick.

Poverty porn is so old
Its ire long gone
Punishing the vulnerable
Where have we gone wrong?

May this great backdoor cull
And their empty sound bytes
Be the downfall
Of the Tory hard right.

© 2016, Wonderfully Wonky.

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Too busy to check in, thanks anyway faceache.

The winds of change are still blowing around here at the shoe shop. I may be feeling rank – as I tend to do as my hormones shift (Hot flushes anyone? Boy are they a bitch!) – but I am still adhering to the wisdom imparted by my brother in law. In fact, I’m working my guts out, and for the main part avoiding social media outside of work. There are up sides and down sides to this.

The downside is that it has taken less than a week to feel completely out of touch with the world outside of the biased mainstream media. But the ups outweigh the downs. I’ve got a tonne of work done. That is always awesome. I’ve got some direction with it. That too is awesome. But most importantly, my state of mind is a million times better. Really and truly. I feel like the someones metaphorical boot has been removed from the top of my head. I’m not worried about the crap that certain parties bring. I’ve gone from hating them to feeling a cross between pity and indifference. And I feel like I am doing things to be proud of.

I’m beginning to wonder how big a role social media plays in anxiety and depression. While I am  well aware that in part my study has unearthed that curiosity, it’s also been teased out through conversations with friends who are struggling at the moment, and by my own social media experience. It’s currently shaping the direction in which I may take my project work. I have a long time to read on it which is great as rigorous study needs basis on which to come to life.

It is sad that social media appears to at least have casual links with these issues though. For so many mentally, or physically disabled people social media is a lifeline. Many of us would have no contact with the outside world without social media. So it is bloody awful that the less pleasant individuals in life can take it in a sad direction for us. While you may be inviting your friends directly into your life through your mobile phone feed, it seems that you are also giving your friendly local bully a key to the back door while you are at it.

In January childline released stark warnings “Children are plagued by loneliness and low self-esteem due to the pressures of modern life”, citing social media as the cause. I wish I could say that tonight’s entry into my blog had a sure fire answer for avoiding the sadness. I wish I could say that. But I can’t. All of the ‘keep safe’ articles pertain to internet security, and financial safety. They don’t really cater for passive aggressive bullying via status, or via indifferent-type passive aggression (that usually fools no one). They arent particularly helpful for blatant bullying or “trolling” issues either. I suspect that there is much work to be done in this area, and it is something that I am now thinking about. The biggest tip I have is to walk away though. There is no one on this planet who has the right to tread your down, blatantly or passively. There is no one on this earth who has the right t make you so low that life doesnt seem worth it. Walk away. Don’t take your page down or anything, don’t stop visiting altogether, but take a big step backwards, unfollow anyone making you feel low. Block their presence on chat, find things that make you happy, things that you can celebrate success from, and engage with these things. Go out and hunt down your happy. It’s out there, for everyone its out there. But I can tell you where it is not… It’s not in the house of facebook, nor is it in the bottom of the tumblr. It’s not out with the tweeters, it’s not on the filters and the fakery of the instagram, it might be in pinterest porn… (Fairy houses here at the moment! OMG! The fairy houses ! *squeal*).

If  you’re reading this, and you’re one of the facebookers who has had the self esteem sucked out of them please, turn your computer off. Get a sheet of paper out, and make a list. 5 things that you aspire to, or that you enjoy doing. You’re not allowed to give up until you’ve got your 5. Then I want you to choose one. Choose an aspiration from that list, and seize it with both hands. I want you to put the amount of hours you’ve been putting into social media into achieving that aspiration, compliment it by choosing a happy pastime off of your list and indulge inbetween aspiring missions. I think you’ll b surprised at how quickly you see that goal come in to sight if you truly give it the time  you’ve given social media. . .

Come back and let me know how it goes sometime ?

He bought about the winds of change.

The weather changed here in the UK last week, from blistering sunshine and 34 degree temps, to cooler, wet and windy. A wise owl shared that the swallows are making their last circles in the sky above his nest before they fly south for winter. The winds of change have blown autumn in. They also seem to have blown across my life. I recently received some sound advice from this wise owl; my brother in law. He happens to be lecturer at a renowned university. He runs a business degree course around the world, so his expert advice was always bound to hit the spot. He advised that I should consider carrying a pad and listing my every activity for a week, including timings / durations. He explained that I could then make a realistic schedule to work to, and although his wording was way more dignified and tactful he explained that I could basically see where I am pissing my time and business hours up the wall and give myself a good kick to stop time wasting.

I followed this advice to the letter, and by heck did I find that I was wasting a lot of time. It was an eye opener, and the shake that I needed to bring myself back to a functional place. It hit me like a steam train that I was allowing myself to be pulled apart by a continuing situation, and that in order to take control and in order to put an end to the problem, I simply needed to cut the strings, and plough my time into things that build me up. The sage business advice turned out to be rather wise advice for the business of life.

I dutifully made my plan of action, setting out the next 3 months of goals. Breaking them down into levels of urgency. And I did feel good. I then decided to take it further and make enquiries regarding starting my masters degree. The enquiry turned into communication, and communication turned into application, and whoopsy! I’m back to working on my degree. And as I proudly announced my new steps forward, I received further proof that my brother in law has unwittingly helped me back on to the right path.

So, the plans are made, and the foundations dug. I just need to find my focus and drive now… which seem to be in the handbag of my two year old at the moment!

The kindness of strangers.

It’s been a funny sort of weekend. We took the nippers out on Saturday. As I mentioned in my last blog, there’s only one thing that will stop me mothering and loving my children with all of my might.And I suspect even when I am on the other side, I will still attempt to mother them if it’s at all possible.

So we headed out, in the wind, the cold, and the wet. The very wet and very soggy. Our 7 year old is studying the  prehistoric era – cavemen, the stone age, etc. So we took him to a place in Norfolk called Grimes Graves. It’s one of the country’s only preserved prehistoric mines. Usually you can see the filled in “graves” – which are actually just big dips in the grass (very big dips), which were once flint mines. There’s also usually a mine tour that involves going down under the ground and into an excavated mine. If I’m honest, I don’t know exactly what is down there, I didn’t before we went, an I certainly don’t now that we’ve been. Unfortunately due to our wacky weather giving us belting temps of 24 celsius throughout the week, only to hammer it down and drop to 11 – 15 celcius at the end of the week, the mine was shut due to a lightening strike. Being the crazy ‘plucky Brits’ that we are, we thought that we’d brave being soggy, and freezing cold, and have a look around the “big dips in the ground” that were once stone age mines…

Continue reading “The kindness of strangers.”

The path to Saturday was paved with good intentions.

But the off roading route was hiding a little slice of heaven!

Please note; This is an entry about disabled parenting, it’s a representation of my own experiences and as such is not intended to cause hurt to anyone who has found  themselves unable to have much wanted children, or has had difficulties with parenting freely due to any number of disability related reasons.
This morning I awoke full of good intentions. After a week of making positive steps in the fight back against my limitations I had big plans. A few hours with my student head on, a few hours with my business head on, a few hours with my writing head on, and a few hours with my Mummy head on.

As I sat down to study though, things changed rapidly. The smallest Shoes came in wanting a pony tail, and the next shoes up came dressed in some footless tights with a hole in the bum. The eldest daughter shoes came in wanting to chat, and the youngest boy shoes picked his nose and made it bleed again. My student halo slipped around my neck, and once I was done with hair, clotheses, chatting and noses, I couldn’t focus. So there my book sits, unopened. My brain remains in the closet, with a bit of dust on it. The newspaper came open though. We all had mass cuddles, and talked a bit.

I thought I should maybe try the second order of the day. The business wonky. Todays first focus was planning. I want my christmas campaign under way by the end of the day. And there was a lightbulb for a clever hashtag. “I’ve got this, I thought”. But as I spoke to my co-director (Doesn’t that sound impressive?) and my head of production (and that sounds impressive too doesn’t it?) who happen to also be my uni childcare, uni mentor, chauffeur, co-parent#1, bunk buddy, housemate, and exercise partner aka Mr. Shoes, the sparkle wore off of the hashtag. The concept appeared to fly right over his head, round in a circle and back over again (I swear, I could actually see tweety birds circling as we spoke!). And then I realised, today should have been a PJ and Disney day. I let the pen drop from my hands. It hit the table, and made a fun noise. I drummed it on the table. Within seconds I had a percussion section joining me. The kids were on board! Shame it wasn’t on plan … But Mummy head is on the plan for today. The kids are still here, drumming away, all dressed up with nowhere to go.

Continue reading “The path to Saturday was paved with good intentions.”