Category Archives: Emotions

Feb 24 2016
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Emotions

What Gives?

escape2016 has been a cruel year.

A seriously ill relative.

Three health scares, one after the other, including debilitating flu.

Too much unexpected time off work, so less money coming in.

And MS is playing up.

All in all, when I raised my solitary glass of champagne as the last dregs of 2015 drained away, I could never have foreseen just how much my world would change only a few short weeks later.

Back in 2012, when I was first diagnosed with MS, I had one aim – to ensure The Teenager had as happy a life as possible, despite everything. And I’ve succeeded (ish), until now.

I’m rushing around, working, studying, catching up with Ill Relative Business. I’ve cancelled book club, haven’t been out with friends for three months and I can’t remember the last time I did something just for fun.

I’m months behind in my Uni work – my Next Great Novel is on hold. I pray I can carve out some time to catch up. I’m floundering.

So, what gives? What can I let go of?

I look a mess. My hair is straggly and un-cut. I veer from over-eating to existing on adrenalin and Lucozade. My plans to create a Scandinavian-style capsule wardrobe have been shelved. There’s mould in the bathroom and I just can’t be bothered to sort it out.

We all have to cope with unexpected scenarios and juggle a stupid amount of balls in the air. Behind it all, MS looms large. My foot drop is back with a vengeance and my memory seems to be shot to pieces. I can barely remember what week we’re in – in short, normal life is on hold.

But – I’m trying. Even the simple stuff like keeping on top of the laundry is keeping me sane. If I can meal plan a few days in advance, it’s a result. And if I can get to work and put in a full day (although my nickname’s ‘Half-Shift’), it’s all good.

Yet in the back of my mind, I fear the relapse. I fought back through a horrendous bout of the ‘flu, but a relapse is different. It will pin me down and not let go. And what do I do then?

Despite it all, I am trying to remember to look on the bright side of life. There’s daffodils for sale, the sun is shining and I am still going strong-ish.

I’ll get there. Won’t I?

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Feb 07 2016
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Emotions

Hope Beyond Illness

ShulamitShulamit Lando is my guest blogger today; she is an inspirational therapist and life coach – have a look at her website. You can also buy Shuli’s book here.

 

One develops great courage from traveling the journey of illness.

At the beginning it is like a strange, formless, indefinite entity that is born at the moment of the diagnosis –an undesired creature indeed.

But it was born and now it is right here with you, as you watch it stubbornly develop, nurtured by every step you take toward your capacity to accept things as they are, your ability to deal with your reality better and, ultimately, to your healing.

Every step of the way, from the simplest fear of tests and treatments to the overwhelming dread of facing and dealing with the endless “what ifs”, makes the creature develop into a specific shape until you can recognize it as what it really is: a POWER that was not there before.

One needs huge amounts of courage in order to face the fears that illness brings to our startled minds—fear of loss, of disability, of suffering, of uncertainty, of what will be and what will never be again, of depending on others, and of so much more. And ultimately, of course, the fear of our own mortality.

“Courage is Grace under Pressure”, Hemingway told us.

When we feel we are about to drown in a life-threatening storm, the human spirit is capable of extraordinary achievements. The human spirit is undefeatable, no matter the adversity. No matter what challenge is presented to it, sooner or later it will take up that challenge with a burst of hope, and find a way out, a way through, a reminder of the courage in you and of the undeniable way that you have already been able to overcome many hurdles in your past.

The human spirit is invincible; it is that part of you that endlessly seeks healing and doesn’t give up, that always needs to find a way out and to keep going until you heal. And you will know that you have arrived at your healing when you experience serenity in the presence of your disease.

I had the choice to continue being who I had been till that moment, with the same skills to face a life of illness, or I could choose to flow with what I was supposed to become. I chose the second path and indeed I became a new self.

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Jan 31 2016
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Emotions

Now? Really?

sofaMS played a real blinder yesterday.

I left my house early to attend an important meeting.

When I got back hours later and put the key in my lock, I was hit by a swinging bunch of MS boxing gloves, all aiming straight for me. I was utterly hammered and poleaxed by MS.

MS is very rude and completely lacking in manners.

I collapsed into the nearest chair and stayed there for an hour. I couldn’t move, couldn’t think. All I could do was stare straight ahead, stunned by overwhelming fatigue.

Eventually, I crawled to the sofa and stayed there for another hour, shopping bags at my feet, the cat demonstrating her increasing annoyance that her food bowl was empty and I wasn’t playing with her.

Inside, I was screaming. Thoughts came rushing back into my battered brain – if I can get up, I must feed the cat. If I can get up, I have to cook dinner. If I can get up, I can tidy up.

If I could only get up.

I have never felt more alone. The skies darkened outside, the curtains remained open. The rain hammered down.

I knew what was happening – a complete MS blackout. I’m surprised it took so long.

These last three weeks I’ve been running on adrenalin and carbs, looking after my ill relative (with the help of my wonderful family), working, studying, sorting out The Teenager and the house. I’m a bruised duck, gliding erratically along, paddling frantically beneath the surface.

MS is never far away. It’s a dark shadow, stalking and lurking, just waiting to strike again.

The evening rolled on. If I could just get through it and fall into bed, the morning might look brighter. When I was able to, I feigned productivity – reading a couple of chapters of my ‘How To Write a Novel’ book, starting a shopping list – Bloo, bin bags, strawberry jam – , changing the loo roll in the bathroom. Result.

At 9pm I melted into my bed and stayed there for eleven hours.

Today has been better but I’m still battling to keep MS at bay. I’m exhausted but still trucking on. This is not the time to square up to MS. There’s never a good time, but, seriously, now?

Anyway, this evening I will mostly be trying to complete my homework for Uni tomorrow; I will be attempting to compose my novel synopsis – something along the lines of, ‘this will be a superlatively wonderful book and I’ll do lots of research, honest.’

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Jan 28 2016
12 Comments
Emotions

Not In Front Of The Children …

childrenSo you have MS.

How much – or how little – should you tell your children?

Hmm.

In my case, MS appeared overnight. Literally.

The Teenager was eleven and just about to start high school.

I was 37 and enjoying a peaceful weekend with friends as he was in London visiting his dad.

Halfway through, I was suddenly incapacitated, unable to walk properly or string a simple sentence together.

He was due back in two hours and I was in Accident & Emergency, facing an uncertain future and terrified for both of us. I checked myself out to be with him and arranged a scan for a couple of weeks time.

That MRI showed up numerous lesions and the subsequent positive lumbar puncture just added to the MS picture.

Sadly his entire high school years have been undertaken with a shadow of this illness.

However, I’ve tried my best to shield him – getting home from work at 2.30, falling asleep on the sofa and setting my alarm for 3.20 so I can be awake to greet him when he comes home from school, no matter how tired I was.

I slowly introduced him to symptoms – the walking funny (oops – could I call it a swagger?), the dropping stuff (gah), the bouncing off the walls (who put them there?).

Perhaps I’m prejudiced. I grew up with two ill fathers; my dad died of MS back in 1978 and my step-father died a lingering death from cancer. I really, really, don’t want to put my son through a childhood dominated by illness.

In fact, I would rather he saw the positivity that has come about from MS – my blog, my book, being invited to 10 Downing Street, joining the MS Society Cymru Council, or just being me.

MS deals you two cards. You can either take the downward spiral – it’s degenerative, the unemployment rate is shockingly high, your symptoms will no doubt deteriorate, it’s MS for God’s sake.

Or, you can say – ok, I’ll have a  pity party for a year or so (yes, I did this – it wasn’t pleasant), then I’ll pick my sorry self up off the floor and get on with life. No longer will I lie awake at night rigid with terror about my future.

And here we are now – The Teenager, unbelievably, is sixteen.

We got through it. We are getting through it.

There’s been a lot of hard times along the way – I will never forget The Teenager crying in the bathroom or the time he was curled up in bed, worried about who would look after him if I had a relapse.

What should you tell the children?

Enough, but not too much.

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Jan 12 2016
10 Comments
Emotions

When Life Turns On Its Head

changeLife has a strange way of shaking things up.

Brutal, unexpected and shockingly painful.

A close family member has been taken quite seriously ill and normal life has been suspended.

It might be a cliche to say, but you really do find out just how strong you are when the chips are down.

I’ve been surprised at my inner strength, something I can only attribute to my trials and tribulations through MS.

This last week has been extraordinarily challenging, emotional, cruel and exhausting.

I’ve slept at odd times, eaten junk, had so many cups of coffee, I’ve lost count.

But through it all, life has to go on.

The Teenager has been superb, although my instinct is to protect him. Thankfully, his life is continuing as normal as possible. My family has rallied round and I think we’ve rekindled latent bonds.

I find myself with a whole host of new responsibilities, but we share them. When I feel lonely and lost throughout this, I know I have support.

Of course, MS has been making the most of it all and is up to its usual tricks – more foot drop, more tiredness, walking into walls, falling over my rugs. But for once, I’m dismissing it.

Sometimes – not often – but sometimes, life is bigger than MS.

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