Tag Archives: family

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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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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Guess What We’re Doing Christmas Day?

Every Christmas Day, me and The Teenager head up to my mum’s house and spend the day there and it’s wonderful, but this year we’re shaking things up a little.

As he’s getting older, I worry The Teenager perhaps isn’t understanding the whole meaning of Christmas, so we are going to help serve Christmas Lunch to forty-five pensioners. You can imagine how that little conversation went. After I managed to lure him from behind his slammed bedroom door with the promise of pizza, we sat down and had a chat.

I told him that over half a million pensioners spend the whole of Christmas day alone in this country, with only the television for company. Would it really be so hard to give up three or four hours to make some people smile? I found out about the event as an MS support group I sometimes go to is held in the same church hall. I’m not a do-gooder by any stretch of the imagination, but when I heard they were looking for volunteers, especially younger ones, I jumped at the chance. A lot of foreign students at the University who can’t get home for Christmas help out too. It’s a two-way process – me and The Teenager will benefit just as  much as neither of us has any elderly relatives nearby.

Fair play to The Teenager, he came round to the idea pretty quickly. The plan is to spend the morning in our own house, then head up to the hall just before noon, maybe picking up some people on the way if they need a lift. We’ll have some carol singing (gulp) and lunch will be served at 1pm. It’s all wrapped up after the Queen’s speech, then it’s back home for an hour or so before going to my mum’s for a lovely long evening of food, wine and chilling.

As the time draws closer, I’m a little nervous though. Will The Teenager behave? Will he be too shy? I really want to show him that life is about more than just looking out for Number One. Anyway, the big dilemma we have now is what to wear. My Christmas Day outfit, planned before we signed up for this is all black. Too….funereal? Too sombre? It’s got lots of sparkly bits on it – too nightclub-ish?  And should I wear flashing Christmas earrings or is that too tacky? A Santa hat? Any advice gratefully received….


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Happiness Starts Here…

I had a lovely response from yesterday’s post – thank you to those who took time to comment. This got me thinking about gratitude. My recent work and health situation has taken a lot of my energy and it is all too easy to forget that for 90% of the time, life is just fine.

Like mindfulness, it is about taking pleasure in all things in the present moment and being grateful. It means not dwelling on perceived hurts, slights, comments. They have happened, they are the past. To drag the past into the future is to set yourself up for failure.

So today, I want to give myself a kick up the backside and jot down everything I have to be grateful for:

  • My family – they are incredible and give me an enormous amount of strength and confidence.
  • My friends – who have been so supportive through this difficult time. They are always there for me.
  • The NHS – especially the MS team. I don’t know where I would be without their help, advice and shoulders to cry on.
  • My health – strange to be grateful for this. I have MS, but it could have been worse. Much worse. I still walk, I still have my sight, I am still independent.

These are only the main points. I also have a lovely house, a comfy sofa, a huge stack of books to enjoy and a firm belief that life will get better. My MS is almost under control with medication, bar a few hiccups. The work situation will be history soon enough. The Teenager is growing up to be a darn fine young man. A fantastic friend made me a Shepherd’s pie and cake at the weekend when I was poorly. Seems to me I’m actually very fortunate.

Sure, we all get dark days. I know I do. Days when the situation seems hopeless. And that’s fine too – we’re all entitled to feel sorry for ourselves now and again. But when the bad days start to outweigh the good ones, that’s when you have to act. The famous phrase is that we don’t regret what we have done in life, but what we didn’t do.

This situation will pass. Life will move on. Will it all matter a year from now? I doubt it.

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