Day Trips

I’ve been reminiscing about summer…

Do you remember it?  It was on the 8th April (thanks Facebook timeline for the info).

I remember it… Mostly for the wrong reasons…

It was the Easter hols, the kids were off, so we decided we would have a Day Trip.

I love a Day Trip.  Especially when we go Down The Back Lanes.  You get to see all the posh houses then…

When ‘Normal’ people go for a Day Trip, they get up, and go out for a Day Trip.

When you have MS it’s slightly more involved.

Me (The week before):  Shall we go out for a Day Trip next week?  The 8th is looking good.  We have nothing on the 7th or the 9th, so I can sleep most of the day before and sit in a corner and dribble the day after.

The Hair : Yes. We shall have a Day Trip.

The Scoundrels (pulling faces like teenagers):  Can’t we just stay here and go on the Xbox/Mac/Smartphone/DS/WiiU/Telly/anything-with-a-plug-on-that-disconnects-me-to-the-real-world?

Me: No…  It will be Fun… We shall go to West Kirby.

If you recall from last week, I had managed to Do My Back In, but I found if I sat with my back arched like a toddler does when they refuse to get into their car seat, I was reasonably comfortable, although it was quite tricky maintaining this position for the 45 minutes drive.  (How the hell do toddlers manage it?)    And I found walking was much easier than sitting.

By this time, however, I had a completely numb left leg.  My lack of sleep because of wretched back and usual MS type niggles had also compounded cognitive brain function, or lack thereof…

I heart West Kirby.  We used to live there before The Scoundrels came along.  I know every little nook and cranny…all the short cuts…the best restaurants…where the toilets are…the fact they have benches at regular intervals along the prom…

It’s these little things that make a Day Trip viable.  I’m not very good at going to New Places.

In New Places I do not know:

  1.  Where the toilets are.  This is key to any Day Trip.  The number of times I’ve been caught short…  Bladder control (or lack of) is one of the more classy symptoms of MS.  I once embarrassed myself in Herne Bay… although that did involve a six foot Welsh soundman doing a piece to camera after taking a massive breath of helium…thankfully I had a change of clothes…
  2. If there will be anywhere to sit down at regular intervals.  Some days I’m ok.  Other days I last 5 minutes before I need to ‘have a little rest’…  I’m starting to sound like my mother….

I’m also not very good with crowded places.  I get a bit confused and can’t seem to make sense of things.  Which in turn means I have to sit down more.  Which in turn means it’s very boring for everyone else.  Which in turn means I feel like a crap waste of space and The Scoundrels moan more than usual.  Unless there’s ice cream.

As you can see from the photos, we had a beautiful, bonding, family Day Trip….

 

What you don’t see is me passing the toilets in the car on the way to park up, being asked if I needed the toilet, saying ‘No’, then parking up and saying ‘actually I do need the loo’.  Cue moans from the back seats.

Then I couldn’t decide if we should eat first or have a walk first.  Brain Fart City.  Then I dropped the hummus in the sand because my hands were being stupid.  Then I needed another wee but couldn’t get up off the rock I was sat on…

Then I had my Day Trip.  It was quite funny, according to everyone else.  Arse over whatsit on the soft sands of West Kirby.

Bloody MS.

 

 

 

MS stands for… More Shenanigans

It’s been an interesting few weeks.

The first day of Easter hols was declared A Chill Out Day.  The Scoundrels could hardly believe their luck and almost wept with gratitude at the prospect of a whole day of uninterrupted screen time and not having to wash their faces.

I, on the other hand, decided I would Sort Out the Kitchen Cupboards.

I don’t know about you, but my kitchen cupboards harbour deep, sordid secrets and long forgotten packets of pearl barley.

I really went for it, throwing out mugs and side plates that no longer bring me joy as per Marie Kondo, and actually looking at the Use By dates on everything.  What a revelation that was.  I discovered we’d  I’d been using cinnamon that should have seen the inside of the recycle bin in June 2014.  The vegetable oil was long past it’s prime too.  Still, no harm done…

The time flew by in a herb and spice cloud of liberation.  The Scoundrels even made their own lunch so that I could revel in organising tins and snacks in the most ergonomic and aesthetic way.  I felt a bit creaky in the old back and my legs were numb but I was having a ball (I know, I don’t get out much…)

I was still in my pjs at three o’clock in the afternoon.  This is unheard of in our house as The Hair is ex-RAF and morning ablutions are held in very high esteem.  One cannot go to war without having a shower first.  The Hair, however, was at work.  Whilst The Hair’s away…

I knew I should pace myself.  Last year I spent six weeks on a Fatigue Management Course at The Walton Centre which was invaluable, and one of the coping strategies for dealing with fatigue is “Time not Task“.

Time not Task means breaking down jobs into manageable chunks of time.  Want to clean your kitchen cupboards?  Fine and dandy – but do it in twenty minute blocks with a rest between.

Sadly, this gem of advice escaped me, such was the ecstasy of ridding myself of outdated couscous.  I’d had the odd cuppa, but I was on a roll…

My kitchen cupboards being now worthy of a Turner Prize I decided I really should make myself presentable… but first…the dog could do with a bath.  The doofus had rolled in fox poo the day before and despite attempts to decontaminate him he still hummed.

This is where it all went a bit Pete Tong.

Wentworth is not a small dog, even though he thinks he is and often sits on our laps.

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Wentworth ‘helping’ the eldest Scoundrel with homework.

 

As I heaved him into the bath I thought “I might regret this…”

The next day I couldn’t move.  Back Gone.  I actually cried trying to roll over in bed.

Now, I cope with a certain level of pain and various other symptoms on a daily basis.  I take enough tablets to sink a medium sized dingy and everyday is a balancing act of prioritising what needs to be done with what can be left to another time. But this pain was off the scale.  I was also broken because of the cupboard cleaning frenzy the day before.

After three weeks of ibuprofen and co-codamol I went to the Docs.  I hobbled out with prescription for codeine and naproxen and a suggestion to up the pregablin I already take.

This combination plus my own meds should have been enough to cure a racehorse. It did not affect me in the slightest.  And now I had sciatica and leg spasms.  Back to Docs…

Doc: Have you had diazepam before?

Me: (a little bit too excited with a look of glee) YES!!!

Doc:  Ok, I that’s our next move.  It can be addictive though…

Me: (looking very solemn and nodding) I know but I will be especially really careful and only take it if I really really need it.*

An hour later and I was in a diazepam stupor.

Five weeks in and I’m still suffering.  I have to drag myself out of bed and carry on because with 2 Scoundrels and Loopy Dog you just have to.** It’s been a battle but I’m getting there.

Life is all about balance, with or without a chronic illness.  We risk it all when we push ourselves past the limit of what we can do, to detriment of our own health and happiness.

Time not Task.  xx

* I realise addiction to prescription drugs is a serious problem for many with a chronic illness so please seek help if you need to – a good place to start is this NHS webpage that has lots of advice.

** I did not drive whilst taking the cocktail of prescription drugs.  It is now a criminal offence to drive if you have certain levels of medication in your bloodstream.  Find out more at the DVLA website.

An Accidental Minimalist

Due to the fact that I am now More Skint because of the MS, I have travelled around the world wide web in search of all things frugal.  In my search I have discovered that money saving coupons upset me, and comparison websites left me whimpering in a corner.

The highlight though, was when someone suggested in their Top 5 Money Saving Tips to ‘skip buying disposable plates and cups and simply use your crockery’…

You can’t make this stuff up, can you?

Anyway, this trawling of the internet did bring to light an aspect of MS that I had thought very little about.

Stress Inducing Clutter.

Stress, for those of us dogged with this disease, can be a trigger for a flare up of symptoms and even cause a relapse.  When we think of stress, we tend to think of major life events such as death, divorce or financial struggles.  But actually, stress can be an insipid little bugger when it wants to.  A constant drip-feed of innocuous happenings can build up inside us and suddenly release a tsunami of pent up emotions that can bring on all kinds of unexpected mess.

It hadn’t occurred to me that the everyday objects around me were causing me stress.  Having The Scoundrels brought with it a whole host of dayglo plastic monstrosities that took over the house at an alarming rate.  I’ve never been a tidy person but even I have my limits.  But I also had loads of other crap hanging around…  ornaments that I no longer liked, books I knew I would never read, pictures I once loved but now held no meaning, yet they still hung on my wall because…well… that’s what you do with pictures.

To cut a long story short I came across The Minimalists and through their story, I realised that my clutter was causing me no end of woe.

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It’s taken two house moves and a few arguments with The Hair (I’m too tired to type The Husband Wi…. see?….)

Me: Why do we have a canal lock key?

The Hair: We might need it

Me: When did you last use it?

The Hair: I think it was circa 1976

Me:

…but I am well on the way to embracing the whole Minimalist thing.  The Hair argues that we are only Minimalists because we are so skint, and that if we were on two decent incomes we would be more materialistic than the entire cast of The Only Way Is Essex (not that he’s ever watched TOWIE, he’s far too highbrow).

Marie Kondo has become something of an idol to me, and following her suggestions in her book The Life Changing Magic of Tidying Up I have gone through my entire life’s possessions and have kept only those things that bring me joy.  It’s a bit woo-woo in places (she says thank you to her handbag at the end of each day…) but I’m almost evangelical about it.

The best introduction to the whole shebang is this great film  made by The Minimalists.  I had no idea when I began watching that one of the contributors, Courtney Carver, was inspired to start her journey to minimalism after a diagnosis of MS.  Her fantastic blog is called Be More With Less.

Minimalism for me isn’t about austerity living.  It’s about only bringing those things into my home that holds value.  It’s thinking about what I buy and what it truly means to me.  It’s about being passionate about my choices and living a good life with purpose.

I’m trying to persuade The Hair that we could start a new trend – Minimalist Hippies – and drop out completely in a sleek home built from shipping containers in rural Wales, but he made some mutterings about having football coaching and football and football matches and football.  Even The Scoundrels looked at me like I was mad.

I’m not giving up the dream that easily though.  Anybody got any land to sell in semi rural Cheshire?

MS stands for…More Skint

One of the most painful things about having a chronic illness is the massive hit you take in your purse.

Although there are many people who can carry on there lives as ‘normal’, the vast majority have to make major life changes.

I’ll be honest, I never was a great one with personal budgets.

Money in the bank = Champagne in the fridge *weeps into mug of cold tea* and eating out most nights.  That’s the joy of having two incomes and no kids and no clue there is trouble down the road.  We weren’t flash, mind.  No, we just bought a bit of what we fancied, when we fancied.  Nice bottle of  champers?  Why not.  Posh frock? Oh go on then…

Back then Aldi wasn’t the cool place to shop.  Nor Lidl.  How times have changed…

I’m typically British in that I am sat here squirming in my big girl pants whilst talking about *whispers* m o n e y.  But since being diagnosed I have had to run the gauntlet of whether I can work or not.  I always thought I would pick up my career in telly when the kids were in nursery.  The reality was that after each pregnancy I had a relapse.  Going back to a job that was fast moving, where you had to think on your feet, and travel extensively became more and more unthinkable.  I had to adapt.

I worked for a spell as a specialist lecturer at a school in Liverpool.  Schoolchildren would be bussed in from the outskirts of Merseyside to learn how to make films and edit them on swish iMacs.  I loved it.  Granted, I wasn’t a natural teacher…:

Me:  Why haven’t you finished your script yet?!  You’ve had twenty minutes!!

Small child:  Because I’m eight years old, Miss.  How do you spell ‘script’?

The job was part time, but within a year or so my body let me down.  The fatigue from travelling… the noise in the classroom…the lights in the office… then home to feed The Scoundrels and do craft (because Good Mothers do Crafts and Painting with their children, obvs).

I basically broke myself.

And then I entered into a world which I still cannot believe exists…

The Benefits System.

What. A. Bloody. Mess…

Me:  Can I sign on please?

BloodyMess: Are you looking for work?

Me: Sort of.  I’m too ill to work full time.  I have MS.

Bloody Mess:

Me: Can I?

BloodyMess: Computer says “No” because you’ve not paid NI for last 3 years.

Me: Well, I wasn’t earning enough and I’ve been ill and I’ve been on maternity leave.

BloodyMess:

Me: So…what now?

BloodyMess: Well fill in all these forms and come back for pointless appointments with seventy six thousand different people and jump on a merry-go-round of life-sucking, soul destroying misery.

Me:

 

I wasn’t eligible for DLA because I wasn’t ill enough, but I couldn’t work full time because I was too ill.  We scrimp and cut our cloth, we’re not destitute but the constant grind of making sure all the pennies are in the right place at the right time is exhausting.  There are thousands like me, I know.  Falling through a gap in the net because we don’t fit perfectly into a one-size-fits-all benefits system that is governed and run by incompetent nincompoops.

*rolls up sleeves*

I read today that more than 50,000 people had their Motability vehicle taken off them because of the new PIP system.  One woman with MS had her car taken away after her assessment which was carried out by being tickled on her hand with a feather.

Tickled…

On her hand…

With a feather…

A. Feather.

I cried.  Honestly I did, because I am one of those people who WANTS to contribute.  I want to work.  I want to be out making a difference in my community but I need a car to do it.  We run 2 crap cars and I would be devastated if I didn’t have a car.  It’s so hard to make people understand how important still having your independence is.  Contributing has a huge impact on mental health as well as physical health, and whilst I know the system is abused, there needs to be common sense applied surely?  Having specialist nurses doing the assessments would be a good start.  Or am I missing something ?

I know where I would have stuck that feather…

 

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A feather.  Face palms. 

I was eventually persuaded by a family member to apply for PIP.  I am ill enough to get the highest rate of one part of the PIP.  I am not ill enough to get any of the other part of the PIP.  The guy who did my assessment had lovely tattoos but didn’t know the first thing about MS.

TattooMan: So you can walk 20 metres?

Me: Sometimes I can walk for an hour with the dog.  Sometimes I can’t get out of bed.  It makes life very unpredictable.

TattooMan:  So on an average day…

Me:  You know absolutely nothing about MS do you?…

Something needs to change.

I admire anyone who finds the strength to fill in those forms and fight their corner.  I’m not a subscriber to the Entitlement brigade, but tens of thousands of people are slipping through the cracks and losing more than just a car.

They’re losing hope – and That is Unacceptable.

 

MS – It’s a dog’s life. Or is it?…

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Wentworth, our rescue hound.  Looka dat nose!

I’d always wanted a dog.

We couldn’t have one when I was little because my brother was A Lergic.  He was A Lergic to lots of things, especially doing the dishes after we got home from school, but he did genuinely have a rather splendid reaction to dogs.  Within seconds of arriving at my Grandma’s house (God rest her soul) his eyes would stream, he would sneeze like someone had shot pepper up his nostrils, and he would rub at his face like he wanted to remove all trace of epidermis.  All this was triggered by a tiny ball of white Westie fluff called Tresco.

Now I am all grown up and master of my own destiny (well sort of, it really depends what The Scoundrels and The Husband With Magnificent Hair are doing) I decided.

It was Time.

THWMH wasn’t keen at first.  Then he insisted if we were to get a dog it had to be A Proper Man’s Dog.  He did not want to be seen walking anything that had the word ‘poo’ in it’s breed name.  He already had a crush on a friend’s Hungarian Vizsla, and so it was that one sunny Saturday afternoon in late October 2014 Wentworth came into our lives like a ginger rocket of looniness, rehomed with us through the Hungarian Vizsla Welfare Charity.

We had the usual rules:

  1. He will NOT be allowed on the furniture.
  2. He will NOT be allowed upstairs.

By Day 2 he owned one of the sofas and came into our bed for morning cuddles.

Wentworth is raw fed, which has a whole heap of health benefits, makes his coat glossy and soft as velvet and costs a bloody bomb.  This dog eats better than I do.  I wanted to put him onto dry food but THWMH said, “No.  Because it is Important our dog has The Best.”

Wentworth is warmly greeted by The Scoundrels and THWMH as they arrive weary from their day back to the bosom of the home . He is fussed and patted and given a treat and generally love-bombed by them all.  Me?  Not so much as a kiss-me-arse.  I stand at the stove, slaving over a lovingly prepared family meal that has taken several minutes to bung in the oven out of the packet, trying to catch the eye of one of my precious tribe,  wondering when they will ask me how my day was, if I had met any new friends, if I’d been a good girl?

Tumbleweed…

Our lives revolve around The Dog.

If we go out, we have to be back soon because The Dog.

If we want to visit family maybe one of us should stay home because The Dog.

If I want to go to the toilet I have to choose my moment carefully because The Dog (They’re not called Velcro Vizslas for nothing…)

We spent a not insignificant amount of money on a bed for him.  It was the size of a single mattress!  THWMH chose it.  Say no more…

MS A Dog’s Life?  I wish!

He is gorgeous though isn’t he?  I mean, looka dat face…

 

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The Ginger Nutter

 

 

You may not like this

…because what I am about to say used to get my dander up quicker than a hiccup.

OK…here goes…

You are responsible for your own state of mind.

….are you still there?  ::peeps through fingers::

I used to want to hurt people who came out with all the positive affirmation stuff.  They always had that sickening smile on their face and everything was always ‘Great!’.

How are you? Great!

How are the kids? Excellent!

How are you feeling? Superb!

Can I cave your head in with a mallet?  Awesome!!

I’ve always been quite an upbeat sort of person, after all, there’s nothing worse than being around a mardy arse is there?  You know the type I’m talking about though, don’t you?  Those people who talk about ‘Vibrations’ and ‘The Universe’. The ones who have a post-it note stuck to every available surface in their home/car/office/shed with some self affirmation or other on it saying things like “I am the dogs” and “Money appears on trees when I look at them”.

I used to literally have a physical reaction.  It was a cross between a shudder and wanting to throw up.

When you have a chronic illness, you find that people come out with some very well intentioned crap.

“You’ve got this!”  Er, yes I know I have.  That’s the problem.

“Stay positive.  Mind over matter.” What a good idea.  Except my mind is bit buggered up at the moment.  Cognition and all that being turned into blancmange.

“Think about all the things you CAN still do and not the things you CAN’T.”  But I quite liked working in telly, travelling the world, earning a decent wage and doing a job that I ABSOLUTELY BLOODY LOVED!!!!!

I’ll be honest.  I still get a bit riled when people remind me of all the things I CAN do.  You may feel the same whilst reading this post – you may be thinking “Sod off with your happy -as-a-pig-in-muck face.”  I get it.  And I am fortunate that this rotten disease hasn’t robbed me of my independence, and hopefully it never really will.  Hopefully…

There comes a time though – an excruciating, truth facing, bum squeaking time – when you have to realise that you need to take some responsibility for yourself if you are to survive the devastating impact of being the recipient of a shitty diagnosis.

It’s really not been easy, and I admit I still find it difficult.   To change the way I think, the way I respond to people, to treat my body with the TLC that it deserves, even more so now that it has been taken prisoner.

You have to change your habits…your diet…your alcohol intake (still pains me write that one)…you have to exercise – even if that means just twirling your feet whilst sat in a chair.

I spent the first six years after diagnosis as a stay at home mum.  It’s all a distant memory that went by in a flash now I look back on it.  But I had some dark days.  I didn’t want to get up, I barely had the energy to leave the house.

But you have to dig deep. You have to find a way.  Because what is the alternative?  Become a recluse? (Although sometimes that is sooooooo appealing.  My recluse fantasy is set in an amazing luxury seaside villa, with fresh organic meals brought to me everyday by an amazing chef who never speaks…but I digress…).

I chose – and it is a choice, hard as that may be to swallow – to live.  I read books about self development.  I tried new things.  I made myself do something that brought a smile to my face.  I kept going.  One day at a time.

I know it hurts…

I know you’re so tired you want to cry…

I know you’re not as mobile as you were…

I know it’s more than likely we won’t get a cure in our lifetime…

I know you’re at the end with this illness, or this financial crisis, or this wayward child, or whatever challenge you’re facing.

But if there’s one thing I’ve learned over the years, and it has taken years to get to this point because I’m only human,  it’s this…

I’d rather go out fighting than give up and surrender.  

 

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Me and The Scoundrels living life in all it’s technicolour glory

 

 

 

 

 

 

“But you don’t look ill!”

I’m giving you fair warning.

If you ever say this to me I will be forced to poke out one of your eyes with a pointy stick.  I have a dear friend who is an Ocularist (make sure you spell that correctly in a Google search or all kinds of wrong appear…)and I can send you to her after poking your eye out and she will fix you up with a brand new false eye (for that is what Ocularists do).

I know I may not look ill, but it has taken monumental effort to get dressed, brush hair, and apply lipstick and mascara so I don’t scare small children whilst on the school run.

Also, when I move my eyes I can get double vision which can be a tad unnerving when trying to board an escalator in M&S.  Sometimes my eyes actually hurt when I move them.  Imagine your eye muscles being stretched to capacity and then twanged back in a Tom and Jerry style.  That’s Optic Neuritis for you.  You can’t see it, but it bloody hurts.

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A Diagrammatic Representation of Optic Neuritis 

And then there’s my hands.  Do your hands do exactly what you want them to do?  I see you, in Costa, picking up your skinny vanilla latte without a care in the world.  Shamelessly  carrying it over to the table, putting it down gently, sipping absent mindedly from the sleek coffee glass.

Me?  I have to look to make sure;

a) I’ve actually got the glass in my hand (it’s generally numb so I could be touching anything…)

b) My hand isn’t shaking and therefore spilling my hot beverage over the trendy hipster sat near the sweeteners.

c) I’ve still got the glass in my hand as sometimes my hand decides to just drop stuff without telling me first.

And what about legs?  Funny things legs.  You know Christmas tree lights?  The ones that flash on and off really quickly, and they’re all sparkly and beautiful?  That’s how my legs feel.  Like twinkling Christmas tree lights.  Except the twinkly bit is like lots of little shocks and cramps all happening at once.  And sometimes my left leg will just decide it’s bored of being a leg whose sole purpose is to hold me upright and instead will just fold itself up.

As for having a conversation…well my brain can get clogged up with treacle.  I know you are speaking to me.  I can even understand the words.  I know what they mean.  It’s just I can’t put anything in the right order or think of the right words to use in a response.  That’s why I like to write.  It gives my brain time to compose itself and makes me look cleverer than wot I is.

Before you think I’m being all “Woe is me…”, let me explain something.

I’m not telling you all this because I want sympathy.  Believe me, I’ve had my fair share of pity parties.  They were all crap.  I still have one occasionally.  They’re still crap.

I’m telling you this because I want you to understand that I can sometimes come across as really quite gormless, rude even.  I don’t have all these symptoms all the time.  I have to pace my day to make sure I still get to do the things I want to do.

So next time we run into each other, I apologise in advance for the vacant/bewildered look on my face.  I do love you really.  x