Tag Archives: mum


goneWay back in the mists of time, when my dad died from MS complications, aged 35, I knew I would always have my mum.

Now she is seriously ill in hospital, and has been for four months.

There’s always that hope, isn’t there, that our mums will shrug any illness off, put the kettle on and give us our full attention.

They’ll bustle around the kitchen, nurturing plant cuttings, swapping local gossip and making us feel like we are the most important person in the world.

Not any more.

For me, it really hit home yesterday. I had been at a wonderful MS Society Council meeting (as a fully-fledged member!), and as soon as the train pulled into the station, I thought, ‘ah, I’ll give mum a call, let her know I’m home safe’. I felt safe just thinking it.

Except I can’t. She’s too ill to really understand.

She knows I’ve been away and now she knows I got back safely but the nuances remain left unsaid. I am floundering. My safety net, that generation above me, has disappeared. It’s me at the top of the tree.

You’d think, that after four months, I would be used to it. Not a bit. It still stuns me every single day. There have been brief glimmers of hope but they have been cruelly dashed.

Next week, I’m off to London, as a finalist for an MS Society award. I’m wholly unprepared – a recycled outfit, untrimmed hair, red face and snagged nails. I’m a mess. It’s been four months of non-stop angst.

I’m absurdly worried that I won’t be wearing a dress – but after my attempts, which have come to nothing, I’m resigned to my black trousers and top. It will be a miracle just to attend the ceremony.

However, in the midst of all the gloom, all the decisions, drama, horror, it meant the world to get away for 24 hours and be amongst an inspiring group of people who just understand.

Perhaps I do feel safe: just in some different, new form.

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Identity Theft

thiefMS is a dirty, rotten scoundrel.

A thief.

As soon as you surrender your details – your symptoms, your weird feelings, your wonky emotions – MS snatches it all and steals your identity in return. You are now a victim of MS Identity Fraud.

The person you thought you were – independent, strong, single-minded – gone – and it’s up to you to work out how to put the falling pieces of your life back together, just when you’re at your most vulnerable.

If allowed free reign, MS will take your future; you know, the one you had all mapped out. It might take your partner, your job, your security, and of course, your health. Sadly, I speak from experience.

I’d like to think I’m trucking along just fine after those awful Two Years of MS Oblivion, but sometimes, just sometimes, MS still has the ability to knock me sideways. Like yesterday.

I was on the sofa, natch, when all of a sudden my arms and hands started trembling. I wasn’t too worried to start with as I get numb hands on a regular basis and thought MS was just shaking things up a little, quite literally. Then I stood up.

My whole body was trembling and I couldn’t stop it. My head was jerking, I could feel my chest moving and my legs soon followed suit. Tremors, all over the place.

I pushed down the panic and started to make dinner. I stabbed myself in the hand trying to dissect some lettuce then dropped a plate on the floor. I sat down on the sofa again, panicking a lot more now.

I did the first thing I could think of, call my mum.

‘Muuuuuuum, something really scary is going on and it’s got nothing to do with The Teenager.’

‘Oh dear, has that cat of yours brought in another dead bird? You ok?’

I explained the whole story, this new symptom. She told me my dad sometimes had symptoms like that and I was to try my best to stay calm. Deep breaths. Did I want her to come down?

I just wanted to crawl in to bed and block out the world, but it was only 5pm.

‘Muuuuuum, I keep stabbing myself with the kitchen knife.’

‘Ah. Probably a good idea to put that down for now. How about some cheese on toast?’

We talked a bit more and I felt better, but in the back of my mind I was thinking, pah, for all my positive thinking and getting on with life, MS still holds all the cards.

Around half an hour later, as quickly as they had arrived, the tremors stopped. My panic hasn’t.

What if it happens again?

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Life Support

HeathNot the best week for a blog that’s supposed to show the lighter side of life with MS.

To cut a long story short, I had to take my mum urgently to A&E early this morning.

She’s chronically ill. It scares me. I may be 40, but I’m not ready to face all this. My mum has been my support system throughout the whole MS story and I feel kind of ….rudderless?

Don’t get me wrong, I don’t rely on my mum for physical help, it’s the mulling/chatting over stuff that has seen me through the last two years. She’s been there every step of the way. It pained her to the very core to see yet another family member become diagnosed with this disease.

She nursed my father through PPMS and was only 28 when he died.

And now I am the one being strong, reassuring and forward planning. It’s not easy. I feel worn out and exhausted. But in a strange sort of way, I have found some kind of strength, from somewhere. My mum needs me.

This post hasn’t been edited. I’m writing as I find. I just wanted to explain what’s happening. I’m not the sort of person who can skip over stuff. I’d love to write about stuff that happened recently that made me laugh – and there’s been plenty. But right now, I’m in adrenalin mode. I know I’ll collapse at some point, just not right now.

I’m waiting for my sister to take me to the hospital. I’m shaking too much to drive.

Wish me luck. I need my mum. I’ve just heard she’s staying in overnight, at the very least. I’m going to hold her hand and tell her I love her. Because I do.

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A Sense of Disconnection

life without the internetOh my days. Who knew that being with a much-reduced internet connection over the last week could be quite so traumatic?

The Teenager has gone through a whole range of emotions, from full-blown panic (‘how will I survive? I am utterly, totally disconnected’) to deep depression (‘wake me up when it’s over’).

I helpfully suggested he read a book or I don’t know, make something.

I was smartly told that whilst that may be acceptable for old people like me who went through their teenage years *gasp* without the internet, he’d rather sit in McDonalds like a saddo all day where they at least have free wifi, thank you very much.

Anyway, we’re back on track and a sense of normality has returned to our little cottage (it won’t last). In other news over this quiet week:

  • I had a letter inviting me to my graduation ceremony next May and did I want to hire a cap and gown? Which means my degree results must be on their way, eek.
  • The Teenager gave up his paper round. Enough said. You really don’t want to hear about it. Or the specially-extended lecture I gave him.
  • My smartphone (so badly-named) decided to get in on the internet act and freeze at inopportune moments, leading to a telling-off at work. Boss – ‘oi, get off your phone’. Me -‘ I’m not on it, I’m waiting for it to unfreeze’. Boss – ‘right, no more coffee or chocolate at break times’. Me ‘be right with you, boss.’ To show how sorry I was, when the phone worked I sent him pictures of cats doing funny things as that always cheers him up.
  • All the crafty bits I ordered for Christmas have arrived – candle wicks, wax pellets, craft knife, cutting mat, white card, Christmas essential oil, modelling clay and star-shaped cookie cutters. Much hilarity will ensue.
  • The cat kindly left a birds head outside my back door. Which I stepped on.

While we have been surviving without much internet, my mum (62 years old and a great-grandmother) whizzed ahead of us.

In between Skyping her sister in Scotland, she upgraded her phone from a brick-like Nokia to a Samsung all-singing, all-dancing model. The Teenager is quietly impressed, if a little jealous….

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