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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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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Not In Front Of The Children …

childrenSo you have MS.

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


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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Teenagers …

teenagerThrough the unsettling last couple of weeks, The Teenager has, in his own indomitable way, never failed to put a smile on my face.

Teenagers are just fabulous – they may wreck your house, bankrupt you and leave wet towels everywhere, but you get a refreshing honesty from them in return.

Take yesterday. He leapt downstairs in boxer shorts en-route to his Special K, and paused to show me his body-building moves.

At the time, I was catching up with ‘Come Dine With Me’ (final episode of six), absent-mindedly dipping into a bag of crisps.

‘Aaaaand, this (new pose), aaaaaand this (deep squat), aaaaaand look mum (muscle flex).’

‘Wow, that’s lovely dear. Most impressive.’

‘You jel?’


‘Well jel, yeah?’

‘Oh, yeah, very jealous. Well done!’

‘You know mum, and don’t take this the wrong way, but you’re not fat, not like that programme about obese people who have a year to save their lives, like, you could do it in a couple, you know? I mean, if you act now you could even get a Valentine’s card, you know?’

‘Yeah, thanks for that.’

Last week we were in the car (I was probably driving him to the gym) when, out of the blue, he said,

‘Muuuuuuuum, do you ever blog about me?’


‘You know I do. You even have a compliment on an Amazon book review. So, yeah.’

‘I forgot.’


‘Am I like, the main character?’

‘Oh look, we’re here already, have a great training session, ta ra!’

A couple of days ago, I was trying to wrap up some uni work when The Teenager texted me (he was upstairs). Expecting yet another video of wrestlers/Adele in a car/cats scared of cucumbers (google it, it’s odd), I ignored it. My phone went again.

‘Mum. You are a Legend. I love you.’

I melted then texted back,

‘Aw, and you are the best son ever!’

‘D’uh, you’ve only got one.’

‘I know. Still love you. Monkey.’

‘Calm down. Can you make me some toast?’

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Life, As Always

stopLife is pretty grim right now, as my relative is still poorly.

So what better way to cheer myself up than dropping my trousers for a couple of doctors?

Today started like any other day at the moment – escaping to work to switch off for a couple of hours. I had a laugh with the lads, scoffed a couple of biscuits and had the first of several coffee breaks until I couldn’t take it any longer.

The pain in my right leg which had started up last week became unbearable. It was badly swollen, difficult to walk on and my ankle was puffed up.

I called my lovely chiropractor and booked an emergency appointment. He took one look at my leg, prodded it and advised me to go straight to my doctor Ah. The last time he said something like that in his Serious Voice, I ended up being diagnosed with MS so I was naturally hesitant and not a little alarmed.

He checked my Achilles tendon was intact – it was – then mentioned deep vein thrombosis, DVT. Ah. Ok. So I called my doctor and was miraculously slotted in for an appointment within the hour.

I made my way over there, thoughts whizzing round my mind. I could just go back to work and forget it all? Keep dragging my dodgy leg behind me in the hope it would somehow disappear? Maybe not the best idea.

So I sat in the waiting room, being coughed over by an elderly gentleman until my name was called. In the consultation room, I dropped my trousers, the doctor took one look at my leg, prodded it and set me on the DVT Pathway, which basically meant I was booked straight in to hospital and told to go there immediately with a bundle of paperwork.

By now I was kind of worried.

At the hospital, I was seen by a doctor within five minutes, which in itself was alarming. I dropped my trousers again. He ran a probe up and down my leg and squeezed it now and again. My leg, not the probe. I held my breath. He looked at the scans. I looked at him.

I was DVT-free. I almost kissed him, but he had a wedding ring on. He told me the swelling was impressive and probably due to a snapped ligament. I hobbled out of the hospital, got to my car and exhaled.

So now I am sporting a glamorous flesh-coloured compression stocking (if you have American Tan skin) and trying to keep my leg elevated as much as possible.

I’m trying to laugh in the face of adversity, but honestly, there could not be a worse time for this to happen. Life, eh?

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