Dec 13 2018
22 Comments
Blogging

I Promised …

When I first started this blog, I promised two things:

That my blog would be honest, raw and at times, uncomfortable about life with MS. And that I wouldn’t write when there was nothing to write about.

I worry I’m reaching that point?

I am ok. The Teenager (bar recent events) is doing well.

I worry I’ll begin boring you guys with the same problems:

  • I’m still single
  • I’m still fat
  • I still trip over anything and everything
  • I am as tired as ever
  • I still worry about the future
  • And I still don’t play a musical instrument

I don’t want to repeat myself and weirdly, in writing that list above, I think, hmm, is there anything I could/should have done to change it?

Six years on, why is the list the same? And is that it?

Of course, that’s the negative list, and I’ve written about my upsides, the gratitude, my self-awareness that I’m beyond lucky to still be out and about with MS, albeit limited.

I wonder if I’m more cautious as I could be judged on what I write – I know people I would rather not read my blog read it, and maybe that makes me more hesitant to bare my soul?

I’d love to hear what you think?

Should I take my ‘Still …’ list and turn it into an action plan?

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Dec 09 2018
8 Comments
Daily Life

So This Is Christmas …

We are recovering – The Teenager from being attacked, my much lesser incident of a twisted ankle.

Damned foot-drop.

I remember lying at the back of the works van, having fallen and thumped to the ground, thinking, ‘this is just not happening’. But it did.

Do you remember those falls you had as a kid? That sickening thud of the pavement rushing to meet your head? That’s what foot-drop is like. Of course, it’s ‘curable’, if you concentrate on every single step you take and will your feet to rise to the occasion.

But who has time for that? So I fall. I trip. I can trip over dust, cables, pavements.

And it brings me up short, and maybe not in the way you might think.

Our dad died forty years ago this year from complications arising from his MS; I am one of four siblings he left behind.

When he died in 1978, nothing was available to alleviate his condition; he was sent home after brutal tests, with only a walking stick and a diagnosis of ‘crippling paralysis’, now known as Primary Progressive MS.

After eight years, he died at the age of 35, a husk of the brilliant man and scholar he once was.

I am lucky. I was born into an age of MRI’s, MS nurses, disease-modifying therapies, which is why I didn’t hesitate to accept the one that would allow me to be well enough to be around long enough to see The Teenager in to University.

So when I come up against seemingly impossible situations, such as The Teenager calling me in work saying, ‘Don’t worry, but …’, I am perhaps more sanguine than most parents.

He is alive, well, and healthy. It is him who called me, not a consultant, a police officer or an anonymous University staff member. I was only grateful that I could speak directly to him, despite his trauma.

Christmas is always a tough time for families. The Teenager will be home in a week, and the washing machine will be pushed to its limit. The cat will be giddy with delight and I will be over the moon to have him back in our little cottage.

However, gratitude is the most important emotion; gratitude that I can greet him at the door, welcome him in and be the same person (plus limp) he last saw at University. His bed is ready with fresh linen, the fridge will be stocked and we’ll have a great catch up.

It’s precious. I’ll never lose sight of what we could have lost.

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Nov 30 2018
4 Comments
Emotions

Never Rains But It Pours

It started innocently enough – my bargain Gumtree washing machine juddered and jumped around the kitchen floor with a full load and then died.

With one last gasp, it dropped its drum, then coughed some water out on to the floor.

My PhD student loan faced obstacle after obstacle and I was in danger of having my email access revoked for non-payment of fees.

The Cat decided she no longer liked Whiskas and a bumper pack of tender chunks lay dormant in the cupboard.

So far, so annoying.

Then that awful phone-call from The Teenager. I should have known; it was around 8.30 am, when few Uni students are awake.

He had been assaulted by a group of men after a night out.

What can you say?

I was numb. He had been to hospital, where they put his dislocated shoulder back into place. Two female students helped him and a homeless man bought him a bottle of water. He was bruised, upset and angry. The police interviewed him.

So far, so soul-destroying.

I went to see him last night. My overriding feeling is one of thankfulness that I am not in that group of parents who, instead of hearing from their child, have an anonymous police officer or surgeon on the phone.

He’s shaken up, bruised and shocked, as am I.

Driving back home in the vicious rain, my anger shook me to the core. It’s taken me 19 years to raise a fabulous child, through all the trials and tribulations, and yet a random group of people can flip that on its head, in an instant.

I collapsed into bed and got up for work four hours later.

As a random aside, foot-drop has been haunting me for a while and I thought I had the better of it, concentrating so hard on placing my feet where they should be. I had a narrow escape last week, tripping over a bit of dust and twisting my usually-weak right ankle.

This afternoon, at the end of a very long day in work, when I was at the back of the van, I saw it happen in slow motion. My left foot dropped, I regained my balance  (congratulated myself) and then foot-dropped a second time in a pile of mud.

I thudded to the ground, smashing my ankle and hands. Embarrassed, furious and scared.

I think/hope we have now had our run of bad luck. The Teenager will recover, older and wiser, sadly. We have new washing machine, ready for his Christmas break washing. My ankle will heal.

I’m hobbling around making our cottage Christmas-ready.

I’m still furious.

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Nov 18 2018
4 Comments
The Teenager

Back On Track …

These last few months have been heartbreaking.

The Teenager has struggled with a good few issues, but with a lot of support he now seems to be back to his usual positive self.

All your amazing blog comments and tweets really sustained him through some pretty dark days and he’s told me numerous times how grateful and completely overwhelmed he is that people took the time to write to him.

And not only that, most of you have watched him grow up through this blog and I know you’re all rooting for him. He can’t thank you enough.

I spoke to him the other day and to hear the happiness in his voice was fantastic. From feeling helpless, and watching as he crumbled has been truly dreadful. Being a parent is beyond painful at times.

But ultimately, we both have only one goal in mind – to rise above the constraints MS may have placed on us.

He is in a brilliant house-share (newly-renovated, it puts my humble cottage to shame), is eating well, exercising and studying. Through all the turmoil, he has never locked himself away, no matter how bad he felt. His determination, at his age, is remarkable.

I just wanted to give you a quick update and apologise for not blogging recently – and to thank you all so, so much for being there for him when he needed it the most.

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Nov 02 2018
28 Comments
The Teenager

Back Then, And Now …

In 2012, my only wish was to see The Teenager through High School.

Forward six years and we made it – it wasn’t easy, far from it. At times, it was soul-destroying and took us both to the edge of what we could reasonably cope with.

Yet no child can go through this hideous process without scars, and The Teenager has them in abundance. The support he could have received was patchy at best, mostly non-existent.

He wasn’t a ‘Child Carer’, at risk or falling behind at school, yet I could see the difference in him, and we navigated our way through the years bit by bit.

He is now at University, but struggling in his own way.

It would be great if you guys could send him messages of encouragement through this difficult time.

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