Tag Archives: multiple sclerosis

Ya Flu Sucks …

fluLast Tuesday in work, the boss stared at me in a somewhat odd manner.

‘Oi, Half-Shift, you here or what?’

‘Oh, er. Yes, that colour scheme looks great. White looks fab with, um, everything don’t you think?’

‘Nice, but we’re talking about the roof plans?’

I tuned back in from wherever I was. I felt … wrong.

I left work early with, ‘ta-ra Quarter-Shift’ ringing in my white-noise ears.

At home, I collapsed onto the sofa (a recurring theme) and lay there, dazed (another recurring theme).

Strangely though, I didn’t feel like eating any chocolate. It was probably then that I knew something fairly serious was up.

That night, I crawled into bed and spent hours tossing and turning, covered in sweat and having the strangest dreams. I woke up long enough to cancel two appointments and went back to bed.

When I woke again, I couldn’t get out of bed. I tried. Then tried again. Eventually, I tumbled downstairs and collapsed again on to the sofa. I was feverish and aching.

Hours later, I dressed in yesterday’s clothes and dragged myself off to a chemist. He noted my long list of symptoms and finally told me I was one of the unlucky, ‘Had the flu jab, got the flu’ peeps.

I questioned him closely:

‘And that would explain the aching joints? The insomnia? The nausea? The headaches?’

‘Yes.’

‘And also the feverish dreams?’

‘Yes.’

‘What about the complete lack of appetite? And do you think this might be a lasting symptom (ever hopeful)?’

‘Yes. And, ah, no.’

Right. Panic stations.

I haven’t felt this ill in a long, long time. I can always somehow truck on, but this, this was on a different level. I was reduced to a gibbering wreck. No longer could I hide these symptoms from The Teenager when he found me on the sofa staring at ‘Judge Rinder’ with glassy eyes.

‘Hi! I don’t seem to be able to get up off the sofa. Not MS, just the flu. Nothing to worry about.’

The Teenager patted me on my head.

‘Mum. You know, you’ve always been kinda brave by keeping your MS symptoms away from me. I know that. I’m not like, stupid. But, like, let me help.’

It was hard, but I did. He cleared away glasses and cups, put out the rubbish, tidied up the kitchen and got me juice. He fetched my unread book-club book from upstairs, fed the cat, closed the curtains.

The next two days were a blur of willing myself to get better. Flu seems to exacerbate all manner of MS symptoms, so along with the aching and feeling of being run over, I was coping with more foot drop, bonkers balance and an interesting speech slur.

And now, five days on, I’m getting slowly back to normality. Or something like it.

One thing’s for sure. This has been a terrible year so far – surely I’m due some good news?

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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?

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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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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