Stumbling in Flats

Pre-MS, I could never imagine a day I did not scoop up my kid and take him out.

The very idea of being stuck at home was absolute anathema. I collected cut-outs from newspapers, leaflets and magazines with a zealous streak, not wanting him to miss out on anything.

Post-MS, it was a very different scenario; devoted rugby mums would collect him and bring him back brimming with mud, injuries and victories. My friend attended parents evenings and took copious notes on my behalf, which she then relayed to back to me.

Those were dark days.

When you can’t take your Teenager to the beach as you know you’ll be weak and miserable, with a massive dollop of heat intolerance is distressing beyond belief.

I waved him off, a smile on my face, but inside I was crumbling.

Eight years down the line since my diagnosis, and three courses of Alemtuzumab later, I am in an ok-ish place.

And now we have this virus, which we may, as people with MS, be a little more susceptible to. I say this gently, as we are not yet aware of the whole picture. What I do know is that to have an MRI, which I do yearly, may show more lesions, and this could be the year for another course of Alemtuzumab.

If this is the case, I cannot see it happening for me, as it would reduce my immunity to near zero. And that is ok. I’m still working, still studying, I’ll get through this blip.

But the one thing us MSers are brilliant at is self-isolating, after all, most of us have been doing it for years.

So, let’s turn the tables and give others the benefit of our experience?

• Home shopping
• Friends leave cake outside your door
• Twitter
• Netflix
• Stay in touch, whatever way you can
• Learn something new

I’m actually amazed that our Government hasn’t yet called upon our superior experience in this matter, but we live and learn?

We all know life is short, but sometimes it takes a famous person’s suicide to bring this home.

I have been lucky, just one troll in all these years, and they were swiftly dealt with.

To die at 40 is horrendous. There are no words for her family.

And her family is all that matters at this point – not the usual suspects popping up to give their opinion on daytime telly.

Bit late?

Why am I saying this?

Anyone who is in the public eye, who voices an opinion, is culpable. I don’t want to hear about her last Instagram, her last photo. Her last meal.

She died alone, as all suicides do, without their family and friends.

It breaks my heart that someone so full of life could feel there was no other option, when all around them, they were surrounded by love.

We’re not here for long; if you know someone who is struggling, reach out, if you can.

They are not manipulative, seeking attention or playing games. Suicide is real, for far too many people , who are left forever wondering WHY.

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?

My 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.