We need to talk about the NHS

Yes.  I’m going there.

Let me start by saying I have the utmost respect for our nurses, doctors and other healthcare professionals. Without them I would probably be locked away in a padded cell somewhere in the Hebrides.

But the NHS is broken.  It is.  It’s broken.  Like a bag of broken biscuits.

Broken biscuit
A bag of broken biscuits

And that’s because the people on the front line are not getting the money they need to do the job they need to do.

It’s that simple.

Except… it isn’t that simple.

Because Politicians.

I’ve never been that bothered about politics in the past.  I’ve always thought of myself as a liberal (note the small ‘l’).  Like many, I’ve taken for granted that I can be treated for anything from a nasty cut to chronic illness without having to worry about the cost.

But when I see what is happening to me, to my friends, those with and without MS, I get really upset.  Ranty, angry out-of-all-proportion upset.  A friend’s child who has already been treated, is in The System, has had a procedure that didn’t work, now has to wait three months to be seen again.

No. No.

He needs to be seen now so that he can be fixed and his development doesn’t suffer any more than it already has.  His mum is having to fight to get him seen sooner.  And it is a fight.  She feels like she’s constantly being battered.

I recently paid to see a physio privately.  It was £35 for half an hour.  It meant a real juggle in the weekly budget (many tins of beans were purchased and no wine passed the threshold of our abode).  But I was seen within a day and had intensive treatment that has really helped the sciatica.  I would have had to wait six weeks before I would have seen by a physio in our local Trust.   In that time more damage may have been done and I wouldn’t have known which exercises were best to help the problem.  Yes there is a wealth of information on the internet, but I needed to be TREATED.

I voted Labour this time, purely based on the NHS.  I believe in it.  I have no idea whether the sums would work, it’s not my job to work that out. I want to see everyone being treated without having to pay at the point of service.  And that’s an important thing to remember.  It’s not ‘free’.  We pay for the service in our taxes and National Insurance contributions.  I’d even be happy to contribute a little more in taxes to get money into the system where it’s desperately needed.

As for privatisation…when I was first diagnosed I was examined by a lovely Consultant.  He sent me off for a scan very quickly, I was in an MRI contraption within a week of meeting him.  The hospital I went to was quite swish.  It was called The Spire…

A few weeks later I got a whopping bill for the scan.

The lovely consultant had got me mixed up with a private patient and being uneducated in all things private health care wise, I had no idea The Spire was not NHS (yeah, I know)…

Needless to say I didn’t pay it.  But it did highlight the difference that once you pay you are seen very quickly,  which sounds like I’m making a case for privatisation.  And part of me thinks, if it speeds up the time anyone is on a waiting list, I’m in…just make it work for everyone.

What we desperately need is someone in control of the purse strings who actually CARES.  Someone who cares about mental health issues as much as chronic illness.  Someone who cares about support for people with Autism as much as they do about people with dementia.

Someone who is willing to fight to the death to ensure no matter what your background or financial status, you can live your life to its fullest.

Someone who actually does something.

I know… I’m an idealist… but I live in hope.

 

 

 

Sending me Forget-Me-Nots (can’t remember why though…)

I’ve always been a bit forgetful.

It was a bit of an in-joke at work.  I’d leave the office after a hard day’s slog and within about five minutes I’d be back to collect whatever item it was that I’d neglected to take with me.  It was usually something important – house keys, purse, Tube ticket…

After I’d given birth to the first Scoundrel I contracted ‘nappy brain’.  (Although to be fair, I pretty much had all the symptoms of nappy brain before actually having children.)  I did the whole bracelet on the wrist thing when I was breastfeeding, but I could never remember when it came to feeding time if the bracelet was on the side with the boob I should feed from, or if it was on the side I had fed from last time.  What a conundrum.

I’m ashamed to say I once drove home from my Mum’s house and it was only when I went to get the youngest Scoundrel out of the back of the car, I realised I hadn’t put the seatbelt on his carseat… (Don’t look at me like that…I said I was ashamed!!)

There is hidden somewhere in Cheshire a graveyard of burnt out pans and baking trays which have been pushed beyond the limits of normal wear and tear.  I have lost count of the number of boiled eggs I have managed to burn, yes literally burn, because I forgot I’d put them on the hob.

IMG_2281

It was when I forgot to pick up the Scoundrels from school one day that I realised Something Must Be Done.

I couldn’t really blame nappy brain anymore, the Scoundrels being 10 and 8 at the time…

We take for granted so much in this life.  Our brains are such complex beasts and the way we process information through thought and experience really is miraculous.  You realise with a pang of guilt just how miraculous it all is when it starts to not work properly… it suddenly registers that you may not have used your grey matter to its fullest potential…

MS has a lovely symptom called Cog Fog.  It’s when cognition, that process of learning through thinking and experiencing through all our senses, slows down so much it feels like treacle has been poured into your brain.  Organising thoughts becomes difficult and even having a conversation leaves you exhausted.  It also makes you very forgetful.

Forgetfulness is not funny.

It’s frustrating.

It can be embarrassing.

It robs you of self confidence.

I went to see a Neuropsychologist and did  number of tests which showed that in a small quiet room with no distractions, my memory wasn’t too bad.

However…

I don’t live in a small quite room with no distractions…

Back in the real world I have The Hair whose schedule is crammed and I’m never sure when he’ll be home, The Scoundrels who have an even busier schedule, The Dog that needs walking, a house to clean, mouths to feed blah blah blah…

So I forget.  I’m sorry but there you are.

I forget birthdays, doctors appointment, I forget my house keys, I forget to shut the front door, I forget to return library books (despite the numerous reminders and text alerts.  I think the fines I’ve paid at the local library is enough to build a new wing…)

The Neuropsychologist did give me some great tips though.  Being mindful in each situation and slowing down really does help.  She suggested trying to use all 5 senses to stamp an image in the mind which would help to trigger my memory.

For instance:

When leaving the house, stop and FEEL the key in your hand

LISTEN to the sound of the door closing and the lock turning.

Really LOOK at the door and at what you are doing – don’t be distracted

Take a deep breath and SMELL the air around you (we used to have lavender plants by the front door so the smell of lavender always makes me think of keys…)

I’m not sure TASTE comes into this one, but you don’t need to use all the senses all the time.  It’s just being in that moment and taking notice of the detail.

Slowing down, being mindful, whatever you like to call it, it is a way of life for me now.  I’m willing to try anything that helps me through the day.

Now do excuse me, I seem to remember licking the Scoundrels this morning (On their faces, just so we’re clear…) so it must be time to go and pick them up…

Right then…

…where did I put my keys….

 

 

MS stands for… Makeover Show

x10948

I LOVE a good makeover.  Bloody love them!

When I worked on This Morning I used to LOVE being on the Friday team (we had a team for each day of the week).  Friday was Makeover Day.  I LOVED reading through the viewer’s letters and choosing who we would makeover that week.  I LOVED ringing them up and telling them they were invited onto the show.  I LOVED hearing them squeal with delight at the news.

And on the day itself…I LOVED seeing the transformation.  The Before and After.  There were some amazing ones… can’t remember much of the detail (well I have got a neurological thingy – and it was about 20 years ago!!!)  BUT the reaction and difference in people when they’d been ‘done’ sticks in my mind very clearly. I LOVED working with Andrew and Liz Collinge, Nicky Clarke (he could be a bit funny though sometimes, not in a ‘ha ha’ way) and Charles Worthington. Bloody good times.

I’m the same now.  I have lost days watching The Makeover Guy.  In fact, it’s probably more like weeks.  When The Scoundrels hear the opening chimes of the intro tune they look at me in despair…

The Scoundrels:  You’re not watching that AGAIN?…

Me:  I AM.  I will watch it, and watch it, and watch it, until I am sick.

You HAVE to watch The Makeover Guy.  Oh my goodness he does one woman who looks like a Disney villain (although to be fair she hasn’t got any makeup on and her hair needs a brush*) and turns her into a young Debbie Harry hot rock chick!!  Honestly it’s the most watchable telly ever! Have a look here!!!   I am officially hooked.  (I’ll be writing about my lifelong search for the perfect hairdo soon…the struggle is real people!)

Without exception there is delight, shock and sometimes tears, at the difference a bit of slap and a hairdo can make.

It’s pretty much the same when you hear those three little words…

“You have MS….”

…well except for the delight bit.  Obvs.

The shock and the tears are pretty much the general reaction though.

The Before and After pictures are, however, very different.

For me it’s meant having to quit doing a job I loved and living a much slower paced life.  I’ve tried changing my eating and drinking habits – although I am by no means perfect at this but I do try.  (The Hair is reading this over my shoulder and laughing with mirth at the fact I have just eaten a huge slab of banana cake… it was homemade though!!)

When I was first diagnosed I thought I could just keep on going.  In fact I went into overdrive and tried to do more, just to prove MS would NOT beat me.  I learned the hard way that wouldn’t get me very far.

As I’m getting older I’m also realising how much more I need to take care of myself.  I’m currently on a bit of a journey with my general health and lifestyle choices.  A makeover if you will.   And although it’s a bit late in the day (13 years since diagnosis!) my body is definitely feeling the ravages of this condition.  I’m also not getting any younger…

For now though, a bit of slap and a nice hairdo will have to suffice.

Now, do excuse me whilst I watch a woman from Texas have her life changed with eyelash curlers, some hair foils and an inverted bob.

* It may be true that people are made to look like mingers on purpose before being given a makeover on the tellybox.

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.

IMG_0481
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.

b086f98e7fc377976f584856a912edff

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…

 

maxresdefault
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.