Category Archives: Uncategorized

Stepping Into The Future

Grief has overwhelmed me since last year.

I am nowhere near over this but I know I have to take small steps to a different kind of life.

I have been poleaxed, hermit-like at home, bar a few special occasions. This has to change. I know now that I will always be carrying this grief; it may alter slightly but the ramifications of it never will.

Losing a sibling through grief changes you irrevocably and I can see that I will never be the person I was before. But I have to start looking after myself and my little family alongside treasuring precious memories.

I have been spiralling into somewhere I do not want to go. With a huge debt to my friends, I am starting to engage with the wider world once more and I want to stay here. At the turn of the year and decade, I am determined to bring some semblance of joy back into my life, and my son’s. He is the one who made me think; he came back for the University Christmas break in early December and his infectious zest and energy lifted me and our little cottage out of the fog.

I realised the other day that I have been blogging about life with MS since 2012 (The Teenager was 13, he’s 21 this year!), and you guys have seen me through ill-health, exams, the good times, the bad times and now the awful times. I feel immensely privileged to have this platform. You’ve been everywhere with me.

It’s too easy to feel we are alone when we are most vulnerable. I know, I felt that way. You, along with my close friends, have pulled me through yet again and I am beyond grateful.

I am trying to embed positive habits in 2020. I have started a journal-writing course with Mab Jones, which is an excellent way to reflect. I am changing one small thing every day to shake up my routine, something I first heard about through RD Laing’s literature – although there is a whole lot I don’t agree with him about. I am awake early every morning so I build in some PhD study time before starting work.

Very, very small steps. I will never, ever forget my brother. How could I? Yet, if I can incorporate some of his beautiful personality into our lives, surely this is a step in the right direction?

Arguing With Parked Cars …

disabledDisabled parking.

The only time we’re visible in society?

How many times have you exited your car in a disabled space only to be confronted by an angry person demanding to know the exact nature of your disability?

This happened to me the other day.

I took my mum out – walking stick, disabled parking badge, etc – and parked in a disabled space. Two. TWO people in cars (not disabled, waiting for ‘disabled’ people) got out their cars and harangued us.

‘Erm, yes, my mum can’t walk far (gestured to stick). How far? Really? Are you serious?’

They were.

‘Well, as I said, my mum can’t walk that far, and for your information, I have MS.’

‘Oh, yes? You expect me to believe that?

But who am I to judge?

Fast forward to our next stop, near the chemist. Three disabled spaces, handily near the local supermarket. So, obviously taken up with customers of the local supermarket. Without disabled badges.

But it’s ok. I spoke to them – they were only parking for five minutes – enough time to get into the supermarket, grab a pizza, bottle of wine and latest copy of Hello!.

Only five minutes. We wish. If only they could be disabled for just five minutes.

And there’s the nub. These people see disabled spaces, make a rational decision and decide that their need is greater than ours. Is that the only time they think this way? Or is it endemic in society?

Disabled spaces are fair game and our government has led the way – we are all wastrels, scoundrels, beggars. With this blatant misuse of disabled spaces, the general public send a stark message:

We don’t care. Prove yourself.

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Second Generation MS

life goes onMy dad had MS.

When he died, aged 35, it wasn’t from MS (which he had, PPMS), it was from TB. His immune system was shot.

From what I’ve been told, he was a go-getting, cheeky, funny  bloke with his whole life ahead of him.

Until, in the 1970’s, MS struck. Or, ‘creeping paralysis’, as it was known back then.

He was tossed in ice-cold baths to test his temperature tolerance. He was given a wooden stick and sent home.

He died and times changed.

Fast forward to 2011 and I now faced a future with MS.

We have a myriad of DMD’s. Support from MS nurses. We are lucky.

I remember, when we had to write about our parents in primary school, I would write, My Dad Is Dead and MS Killed Him’.
For that, I was called up to the teacher’s desk each year, to explain my single-parenthood.

I spoke to my mum before I wrote this. I was worried that by referring to my dad in my book, I was being mawkish or overly-sentimental.

She disagreed.

So. I have MS. I wish my dad had lived long enough to see me now, and everything all of us who live with MS today are achieving.

Who Wants an Online Book Club?

I’m breaking my usual Silent Sunday rule! We’ve been having some chatter about starting an online book club through my blog.

I’ve had a word with my techie expert (hello Jan!) to see how we can start a page that can be sub-divided into separate books and their comments, so we don’t have thousands of comments about all the books in one long stream.

Jan will do her usual magic and get back to me, so if anyone out there would really like this to go ahead, please comment on this blog post so I have a rough idea of whether it is a good idea to launch ‘Reading Between The Wines’?

Maybe thinking about doing one book a month to stretch our MS-foggy minds? So let me know (and please spread the word!!) and we’ll see where it takes us…..

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