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’

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.”

Wheeling on borrowed spoons.

Just lately I’ve noticed that the more things are on top of me, and the more isolated I become, the more I use facebook as a crutch. This is both good and bad. Those who know me in real life know that I have no secrets. They always know who they are getting and where they stand. But those who are on there out of duty, and who don’t really know me well don’t have any concept of how isolating I have found my ailing body. These are people whom will not benefit from my complete transparency as we don’t spend any real time together.

It’s also handy for me. It means that once I hit a certain point I can look back, and reflect, and see that I’ve been quite low. I had a period of months of immobility, increased syncope, and non stop vomiting. During this time I became bound to my bedroom, near to the bathroom with no risk of serious falls and injury – fixable or otherwise. Over the summer I really kicked back against it all. A week with family helped to force the issue, it was both lovely and painful, but after that week of forcing myself to interact away from the bedroom I found that I have been able to continue on the same agenda. I have not taken to my room again as yet. Though with pain levels shooting through the roof at the moment it is always a possibility.

I’ve taken the current “motivated phase” to the extreme. I have set the path for my Psychology Masters degree, which I am determined to make happen. I have assessed my use of time, and I have reorganised my agenda to really push my business and promote my study. I seem to have Family : Home : Study : Work in balance on it. But I’m yet to see whether the practical aspect works out. Here’s hoping that it does. Especially as I’ll be running on borrowed spoons.

Newflash : Broken bodies don’t mean broken feelings.

When something goes wrong and your doctor refers you to the hospital there’s a process. The process is always the same. You have your GP appointment, the GP either books your hospital appointment with you there, or your appointment is booked and sent out by the hospital. There’s usually a wait (unless you pay to queue jump, though I’ve been advised that many institutions don’t accept private diagnoses which seems bonkers really), and a build up. The day comes, you meet your specialist, and that’s when the pathways start to go off in many different directions. You may receive happy news, feel reassured and get signed straight off. You may be sent away and have to return in x weeks, or be forwarded on to someone else, or as is likely, you may find that you are referred for tests. They may be blood tests, or scans, or they may involve you laying in big machines and feeling completely at the mercy of the people around you whether you go in to something or something goes into you. The bottom line is, whatever happens, whether you are wonky, temporarily out of commission or whether you are injured, the processes are the same. This means that the feelings are also likely to be the same. But this is where for myself, and many other wonky friends, the similarity ends. It seems that the world around us expect those of us who have to endure these tests or procedures all the time expects us to become hard, unfeeling robots. We’re not allowed to be nervous, or worried, or downright frightened. We simply have to put up and shut up.

I recently had an MRI on my lumbar spine. This in itself is not unusual for me. I have had over a dozen now. I mentioned it, in passing. I didn’t put a big “OMG it’s MRI day!” status up, and I did not check in to my hospital. The day rolled around, I got dressed taking care of the bra that I wore (ladies, if you wear a sports bra with no underwire then you can keep it on in the machine, checked my paperwork, and left for the hospital with my book in hand. As it happens I never read my book, the clinic was running efficiently and I was straight through. Hubby picked the music which the hospital play to you over headphones when you are in the MRI scanner – Guns & Roses, he chose well – and left with the children. I wheeled through, got changed, chatter to the nurses, larked around with a smile on my face, and got on with the job in hand. The nurses panic more than I do as I insist on transferring myself from chair to scanner. I have fallen or subluxated on them so many times, so they’re entitled to be anxious as an accident in the MRI suite really cocks up their morning. I got on the table, I kept quiet. I was given the squeezy ball in case of emergency, and I waited.

Continue reading “Newflash : Broken bodies don’t mean broken feelings.”

It always looks better on paper.

Especially to the author on the other side of the table!

Being the unusual brand of wonky that I am I was unable to switch my brain off during my recent period of down time. Aside from over thinking life, love, family, history, and running away, I decided to start a new business. A business which I can run from my bed, or a hospital waiting room, bed, or whatever! I decided to turn my creative musings into physical products. Mostly gift based, but all functional, all practical, and most importantly, all personalised!

So it began. A friend gave me the first tool that I would need on my journey. Mr. Shoe’s ordered the next tool that we needed, and came on board as a partnership, and I ordered some crafty goodies to play and practice with.Three days later and there we were. A bedroom full of our new business. Nowhere to move, but a business none the less. I created, hubby crafted, we boasted, self deprecated, and basically repeated the last three steps again and again. The manufacture side of things came on very quickly and within days we were producing saleable, unique goodies for people. Wow.

Continue reading “It always looks better on paper.”