MS stands for…Mental Strength

It’s Mental Health Awareness week, a condition that so many of us with or without a chronic illness can identify with.

The Princes William and Harry (I don’t care what you think of them, I love ’em both, especially Harry) have been at the forefront of the campaign, as well as celebrities like Lady GaGa.  Their website Heads Together is a mine of helpful resources and encouragement and well worth spending some time on, whether for yourself or a loved one.

Mental illness still has a stigma, and I don’t know how we go about fixing it.  I’m so glad that people in the public eye are coming forward and talking openly about their struggles.  We seem to think if you’re famous you’ve got it sorted. The truth is very different. I’ve worked and socialised with many a well known face, and they have the same anxieties and doubts about themselves as you and I, if not more.  Is it a British thing that we just want people to pull up their bootstraps and get on with it?  I remember in my days working for British Forces TV, the number of young squaddies who would pour out their heart about things they were struggling with to the two female presenters and myself, eager for a listening ear that wouldn’t judge them.  Bloody hell, the stuff they had to face at 17 and 18 years of age, and this was on UN duties, not when we were at war.

I think we’ve all struggled with our mental health at some point, whether we realise it or not.  Or maybe that should be if we admit it or not.  I’ve had friends who have been so overwhelmed they have taken their own life, others that have lost their home and livelihood because they just couldn’t cope and felt they had no-one to turn to.  If that’s you, please, please reach out.  Look at the Heads Together website, contact The Samaritans…

Do something.

You are not alone.

I’m reading A Mindfulness Guide for the Frazzled, by Ruby Wax at the moment.  I was never a huge fan of her comedy, but I met her a couple of times and really warmed to her.  She was a bundle of insecure, frantic energy and that came out in her work.  Her battle with depression is well documented, but she took it one step further and studied for her Masters in Mindfulness Based Cognitive Therapy at Oxford University.  The book is part memoir, part scientific based research and part practical mindfulness instruction. This is no woo-woo-floaty-incense-burning-waffle.  It’s a fascinating insight into how our brains work and how we can re-train them with small steps. I highly recommend it.

Having MS has been a not just a battle for my body, but a battle for my mind too. Everyday there is a constant dialogue with myself …”You’re lazy”…”You’ll never be as good as you were”…”You’re on the scrap heap now”…

For me, being out in nature is the best medicine I have found, as are The Scoundrels, without whom I’d be lost (although far more wealthy…)

It’s taken a long time, but I’ve realised I don’t have to listen to those voices in my head.  I decided I would not be bowed by my inner critic.  I face the dark days full on and don’t cower to fear.

In the words of my favourite writer, Maya Angelou… Still I Rise.

 

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Houston, we have a problem…

So this has happened….

Obviously neither of The Scoundrels know anything about it…

I’m typing this on my phone and hoping to resume normal services ASAP if I can manage to revive the damn thing. Screen keeps going black and the spinning ball of death is a constant presence.

I may have to sell some of my organs to fund a new Mac…anybody want to buy a kidney?

 

 

Meh

It’s a bit late in the day this one. That’s because I’m feeling meh. I wasn’t going to post at all but then I had a mentoring session with Sian the Slavedriver and she cracked the whip and told me get my arse in gear (actually she said it much nicer than that, she’s lovely really 🙂 )

So here I am…

It all went downhill yesterday afternoon.  I was having a lovely catch up with my gorgeous Besty who had been “working” in Mexico (well, she was working hard on one day, doing her amazeballs wedding photographer thang, the rest of the time she was swanning around in her bikini flaunting herself at the Dorito Band) and I could feel the shutdown creeping up on me.  This is because I had Over Done It on the previous few days…

Saturday, The Scoundrels had hockey and football, me and The Hair squeezed in a quick shopping trip to buy some shoes between pickups, then off out to our old-hopefully-soon-to-be-new-again neighbour’s for delicious grub and too much wine. Then Sunday, up at the crack of a sparrow’s fart for the Eldest Scoundrel to be picked up for a hockey tournament in Blackpool, I should have gone back to bed, but no, I was feeling perky (probably still squiffy to be honest), so got on with chores. Then Monday school runs, dog walk, more Scoundrel taxi services in the evening followed by going out out with my antenatal group, we all met having our first child …and then Tuesday massive hike with the dog because I was still feeling perky, then quick dash to get The Hair some white Puma socks, then coffee with my Besty.

It started with struggling to remember what I’d been up to whilst Besty was away. I’m sure I did some amazing stuff but all I could do was mumble “Er…writing…a bit.”  I was dazzling company as you can imagine. I really had to concentrate on the conversation whilst also eyeing up the cushions on the long bench in the cafe to see if I could make up a bed. Thank goodness Besty had loads of properly interesting stuff to talk about, especially the bit where she was snorkelling and was ambushed by a shoal of big blue fish that came right at her face.

I should know by now, that if I do too much on one of the days I’m feeling perky I’ll pay for it later. It’s especially true now that the days are longer and Spring is in the air, allegedly. During the dark winter nights going to bed at 8pm is bliss, but during the summer months I feel like I’m missing out, especially on social invites, and I cannot sleep when it’s still broad daylight.

And so it was that I ended up with tremors and being unable to walk in a straight line and crashed in bed at 6pm last night.  I didn’t hear The Hair come in after work, and I woke up in exactly the same position I crashed in. It took half an hour to unfold myself.  Today was a day of Have To’s – the only thing I HAD to do was get the kids to and from school.  The rest, like writing this blog, walking the dog (we have a big garden so he’s been outside plenty and he senses when I’m tired and just snuggles up with me) could wait, and so it was a Duvet Day for me.

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It got me thinking about pacing and fatigue management. Everyday I have to make decisions about what the priorities are, I was going to share some insightful resources about the 4 Pillars theory and something called the 3 D’s, except…such is my brain fog that I cannot remember what they are.

I know the D’s are something like Doing, Delegating and Dropping, as in;

Do what HAS to be done

Delegate what you can, and

Drop things that really don’t need to be done

The 4 Pillars one is really good too, but to paraphrase my favourite children’s television programme from my toddler days, Tales of the Riverbank, “that’s a story for another day…”

In other words, I’ll post it next week if my brain is working properly.

My 3 Favourite Things About MS

This week is MS Awareness Week, which means I can talk all I want about the MS and you have to listen because that is the law of Awareness Weeks.

Basically my own body attacked itself at some point in the past resulting in the myelin sheath, (I always want to snigger when I see the word ‘sheath’ for some reason) which surrounds the nerves in the brain, becoming a bit tatty and buggering up the messages to the rest of my body.  Everyone with MS has different symptoms but for me it means fatigue, cognitive difficulties, pain, numbness, double vision and bladder problems to name but a few.  But it’s not all bad.  Here’s my (tongue-firmly-in-cheek) 3 favourite things about having MS.

  1. You get to spend the whole day in bed GUILT FREE!  When I was first diagnosed I went out of my way to defy this illness and pushed myself too hard, inevitably leading to burnout.  I’ve now learned the art of ‘pacing’ and if I feel my body needs a day of rest, then so be it.  Duvet days are a regular part of life for me now, but rather than spend the whole time fretting about what I SHOULD be doing I give in to it and turn off my brain for a few hours.
  2. It gets me out of the housework (and other tedious tasks). I have to be very careful how I expend my energy on any given day which means I have to prioritise tasks.  For instance, things I HAVE to do include doing the school run and taxiing The Scoundrels to various sporting clubs, walking the dog, making sure the fridge and cupboards are full at all times (woe to me if there are no snacks for The Scoundrels, they eat ALL. THE. TIME.) and writing.  These commitments mean I am pretty pooped and I have to rest in the day to be able to cope with running the kids around in the evening – leaving little time to put the hoover round.  Then there are the activities you have to weigh up against each other, eg: clean the oven or meet a friend for coffee? Well…what would you do?  Actually it’s vital to keep up social connections as it’s fundamental to good mental health.**nods head sagely**
  3. I can blame everything on the MS.  If I wake up grumpy and want to hurt people, …it’s the MS…forgot to get milk, it’s the MS…can’t remember where I put the car keys, its the MS…overslept and look like a minger, it’s the MS…drank far too much and had to be carried out of the taxi…you get my drift.  Obviously I don’t pull the MS  card all the time, that would be rude, but a girl’s got to get something out of this bloody illness…
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Lessons from a 13 year old

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They used to be blue…

 

The eldest Scoundrel took part in the Cheshire Hike over the weekend.  Something like 300 teams of 2, aged between 11 and 18 let loose with a map and a compass into the Cheshire wilderness to hike, in the Scoundrel’s case, 31km.  It’s the second time he’s done this event, but this year he was walking much further than before.

Scouting is one of the few places left in our scaredy cat world where kids can go and take (calculated) risks.  They are positively encouraged to use knives, light fires and generally run amok.  I applaud this.  I was Cub leader myself for a while.  And yes you do have to be slightly unhinged to be one.

The thing that, from a parental point of view, many may find slightly alarming is that you drop your beloved child at a checkpoint, having spent the night before checking, double checking, triple checking, then checking again to make sure that they have everything they need on The List crammed into their ginormous rucksack that cost more than the monthly shop, you wave a cheery goodbye, and that’s it…

For the next two days you have no idea where your child is at any specific moment on planet earth.  They themselves have no idea until they get to the start what their route is for the next two days.  When you look at it in the cold light of day, you are essentially abandoning your child with no clue where he or she will be sleeping that night.  Literally no idea.*

You then spend the weekend distracting yourself by Brasso-ing the front door knocker and ironing socks, whatever little jobs you’ve been meaning to do for the last year but never got round to.  Then on Sunday afternoon, you scurry to a rendezvous in Knutsford to collect your bedraggled, pungent offspring whose ginormous rucksack is now unrecognisable because MUD.  My sweet Lord, the mud!!

Seeing hundreds of youngsters who have fended for themselves, helped others when they got lost, administered first aid to their fellow hikers, pitched tents and cooked in the great outdoors makes your heart swell.

As we walked back to the car, making sure to stay upwind of the Eldest Scoundrel, we chatted about the adventure he and his chum had just had.  The Hair offered to take his ginormous mudsack, but he just said “It’s ok Dad, I’ve got it.”  I was so proud and full of love and admiration for my boy that I swear my milk came in.

Once home, decontaminated and fed, the Eldest Scoundrel was ready to crash.  As I hugged him goodnight and told him how proud we were he said, “You know Mum, I nearly cried at then end of the both days because I was just so tired, my back hurt, my hips hurt, the bag was so heavy.  But we just put our heads down and kept going and we did it.  I feel like I could do anything now,”  (which was just as well because he had PE the next day at school.)

Trying not to burst and make a mess all over the bedroom floor took a lot of effort.  My boy had learned RESILIENCE.

You can talk to kids until you’re blue in the fizzgog about sticking at things and working hard and commitment and attitude, but there’s nothing like being out there and swinging the bat to get the full experience.  He reminded me that it’s been a while since I was out there swinging the bat and have let life batter me down for too long.  Not that I intend to climb Everest or swim with sharks mind you…

But I want to be in the game again, not sat on the sidelines watching it unfold.

Watch this space. (Which is shorthand for “Not sure yet what I’m going to do, but I know that if I don’t do something I’ll regret it for the rest of my days.”)

 

* The Cheshire Hike is brilliantly organised and expertly run by volunteers from the Scouting family across Cheshire.  The hikers have regular checkpoints, emergency first aid on hand, they camp en masse overnight at a secret location (well secret to us, obviously the Scout leaders know where it is) and all precautions have been taken to make sure the risks are minimal. We don’t really just send them off into the wilderness for goodness sake…

 

How a fried egg helps my grief

 

Today my dad would have been 78.  We lost him when he was 63.  The last 15 years without him have been both desolate and joyful.  The ups and downs life inevitably bring are always coloured in some way by his absence, the happy times feel more poignant, the sad times you miss his comforting words or feel glad he has been spared such unhappy news.  He never met the Scoundrels, but I have no doubt he would have been up to all kinds of mischief with them from the moment they were able to walk and talk.  I know too that they would have loved him to bits.

Grief is one of those feelings that is hard to explain if you haven’t experienced it.  You can grieve over a loved one, over bad decisions, and, as I’ve discovered, you can grieve for a life that ‘could have been’.

A dear friend of mine is a counsellor for Cruse Bereavement Care and she recently explained grief in such an insightful and practical way.  It’s known as the Fried Egg Theory, or Growing Around Grief and was developed by Dr Lois Tonks, and it goes like this;

fried-egg

The egg yolk is your grief, it stays the same size throughout cooking (unless you split it, but let’s not get picky here, serious stuff going on…). The egg white represents you getting on with your life.  The egg white doesn’t stay the same size when you cook, it spreads out unevenly in the pan.  In some places, the outer edge of the egg white is very near to the yolk.  In others the outer edge of the white is much further away.  And so it is with grief.  Some days your pain feels far away, and the days are good.  Your grief hasn’t disappeared, it’s just that you are more removed from it.  Other days you rub right up against it and feel it’s loss just as acutely as the day it happened.  It blindsides you.

I remember a couple of years ago arriving at my mum’s in sobbing my little heart out.  The reason for this?  A lorry driver next to me at the traffic lights had leant out of his window to clean his wing mirror with a cloth.  This simple act was one my dad did hundreds of times when I was out with him in his lorry during the school holidays.  In a flash I was back there in his cab, Terry Wogan on the radio, the air filled with the smell of diesel and Old Spice, Dad singing all the wrong words to his favourite tunes.

I think in the UK we don’t do grief very well.  I think there is a feeling that it is something to ‘get over’.  I don’t think you ever do.  And that’s ok.  I’m not talking about a Queen Victoria dress-in-black-forever-be-in-mourning approach.  But we need to allow ourselves and others to have days where the pain is still raw.

The fried egg helped me understand that I’m never really without grief, but that some days my egg white is bigger than others.

Miracle Cures and Boob Catastrophies

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I’ve sat on this post for a week because I’ve been in two minds whether to let this particular cat out of its bag.

 

You may have seen or heard about the ‘miracle cure’ for MS that’s been all over the news and social media.  This is not new news to the MS community.  It’s been around a while, but what makes this headline so different is that it is the first international, large scale study into stem cell treatment (or HSCT as it’s called), and the results show it is “effective and safe treatment for people with highly active relapsing MS that are not responding to existing Disease Modifying Therapies (DMT’s).”

 

That last bit is important.  It is not for everyone who has MS and it is not going to be offered on a silver platter to everyone with this illness.  Although I applaud this research and am thrilled for those who may benefit from its results, this is not a ‘miracle cure’, and seeing the media portray it as such makes me want to smack someone with a wet fish right across the chops.

 

The reason I’ve held back from commenting is this – I like to be really honest about life and I want to be seen as being transparent and have at least a little integrity in a world that has forgotten what integrity really means.  In writing about the development of HSCT, I couldn’t ignore what is happening in my life right now.

 

If you’d have asked me before November 29th 2017, would I ever consider this kind of treatment (if indeed I was eligible and fitted the strict criteria) I would have said absolutely not.  Definitely a big fat no.  I would not want to put myself (and my family) through a course of chemotherapy, then have stem cells harvested and reintroduced into my body with the hope of stopping the MS from progressing any further. Not only does it mean my already compromised immune system would be pushed to the limits but the impact on family life would be substantial.  There is usually a strict post treatment isolation period of sometimes up to six weeks (although I have heard it can be more or less) to prevent any infection getting in.  Success was not guaranteed.  The cons definitely outweighed the pros.   But…

 

… on November 29 I was diagnosed with breast cancer.  Bit of a bugger if I’m honest.  The details leading up to the diagnosis are for another day, suffice to say that I am, and will be, completely fine.  It’s treatable and I am under the care of a fantastic team at Chester Countess Hospital.  I’m so sorry if I haven’t told you directly, it’s nothing personal, just, well, there never seemed to be the right moment – how do you drop that bombshell into general chit chat about the weather?

 

My first thought though when the cancer (2 tumours in right boob if you’re wondering) was confirmed was ‘If I need chemo I might as well try for HSCT, in for a penny…’  This is a u-turn worthy of any prominent politician, and I was shocked by my own fickleness.  I very much doubt it would be as easy as it sounds to set those particular wheels in motion, but the thought was ringing around in my head for several weeks.  As it turned out, a node biopsy just before Christmas revealed that the cancer had not spread, and after many consultations it was decided I would be treated with Tamoxifen in an attempt to shrink the tumours before less invasive surgery later this year.  HSCT was definitely off the cards.  I felt robbed.

 

During that short window of thinking I might be able to bring the MS to its knees and not have to face another day of battle against fatigue or trying to remember how to string a sentence together, I felt euphoric.  In the months since I have grieved again for the losses I’ve had to take on the chin because of MS.  And I’ll not pretend it’s been easy.

 

I don’t consider myself one of those fighty shouty warrior types, and I don’t feel particularly brave.  I will, however, survive.  I’m really rather good at that now.