Category Archives: Emotions

If You Were Still Here …

dadFather’s Day has always been difficult for me.

Dad died aged 35 a couple of months before my 5th birthday, from complications arising from his MS.

I don’t have clear memories of him, just a few snapshots in my mind, but I do remember the day he died.

I waved him off to heaven from a window, still wondering whether the bottle of medicine I had dropped by accident had anything to do with him leaving. I remember feeling desperate rage at whoever had taken him and wouldn’t give him back.

As I grew up, the concept of MS receded into the background; I simply regarded it as an illness  that could make people end up in wheelchairs, like my dad. I studied photographs of him, tracing his life from bright-eyed optimism to darker ones of him slumped in his chair. The difference was shocking and incomprehensible. I filed MS away in my mind.

Every year throughout primary school, the week leading up to Father’s Day was torturous. I would have to tell the teacher I couldn’t make the card, the gift. I was given other projects to do, seething with envy as my classmates spent hours chatting about their dads while they cut out bits of coloured paper.

One year, we had to draw a picture of our family. I don’t know why but I had a sense of overwhelming shame that I couldn’t put my dad at the beginning of the line of people. Instead, I drew my brother standing on a large rock, followed by my mum and then us, in the hope that as the teacher glanced at is, she would assume the figure was my dad.

Throughout my angst-ridden teenage years, my outrage against the whole world at the loss of my dad led me to backpack to Norway for six weeks after my GCSE’s in a bid to trace one line of my dad’s origins. It would take another six years before I accomplished this, but during that trip I felt more connected to my dad than ever before.

As I got older and life opened up, it was the major events that I missed him the most – my wedding day, when I gave birth to his grandchild. I couldn’t help but wonder what he would say, would he be proud of me, what would he look like.

And then, MS happened. I was 37. Suddenly, I needed him more than ever. He would be the only person who would completely understand the confusion, the anger and the fear. I hated him and I loved him. I hated him for not being here and I loved him more as I now had an inkling of what he had gone through.

I felt incredible, overpowering sadness that he was born a few decades too early to have access to the treatment I now have. There were no MS nurses, no DMT’s and no real understanding of this illness. It was termed ‘creeping paralysis’ when he was diagnosed back in 1970.

From the stories I hear, my dad was a determined and wilful person, with a vibrant and somewhat unconventional personality. If he was still here, I would love for him to be proud of me and how I live my life despite MS.

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Manchester

darknessI was shaken awake at 1am this morning by The Teenager.

He had watched hours of rolling news of the atrocity in Manchester and couldn’t bear to be alone any longer.

We sat together downstairs, watching the tv, discussing what we were witnessing, both of us crying.

His father is from Manchester and it is a city he has frequently visited to catch up with his grandparents. He has friends there and they meet up to go to football matches, restaurants, shopping. He is due to travel there on Saturday to watch a concert at Old Trafford.

He was adamant his plans wouldn’t change and mentioned he has grown up with terrorism. It is a topic we have had to return to over and over, as I’m sure it is with other parents. We were still living in London when Hammersmith Bridge was bombed in 2000. The day the Towers fell, I left work early, picked him up from nursery and held him tight, watching the news in horror as the Manhattan I had lived in and loved seemed to disintegrate before my eyes.

When 7/7 happened, he began to have nightmares. He travelled through to London every month to see his father and had been doing so since he was four. He loved travelling on the Underground. Now he was six and it took months to work through his fears and he often woke screaming in the early hours.

Together we watched the events in Paris in 2015. There were more discussions. How were we to respond to this roll call of tragedy? We were helpless bystanders and could do nothing.

And now Manchester, an attack deliberately aimed at young people. People like The Teenager. I never like to write meaningless tweets or posts, but my heart is truly breaking for all the parents affected by this.

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What’s Five Years Between Friends?

fiveWhen I was a kid, five years was the difference between mittens with a string through both sleeves and a proper pair of gloves to make snowballs with stones in them (I grew up in Scotland, natch).

Or being in Primary School and Secondary, where you got your head flushed down the toilet on a daily basis.

Five years is huge. Massive. Like, really big.

Now, on the cusp of my five year MS-Versary, it feels … weird. I don’t feel that much older or more informed. I still tug those metaphorical mittens, making sure they’re safely attached.

Perhaps with an illness like MS, with so many new medicines and numerous medical trials, we struggle to find out exactly where we fit in the MS Scale, Bad to Worse.

I remember clearly the night before My Diagnosis. It was Make Or Break. I was going to present my neurologist with every last scrap of evidence (carefully assembled in my MS Notebook of ‘Most Notable and Curious Symptoms’). I was fully armed. After ten months of wandering in the wilderness, experiencing relapse after relapse, I was ready.

As it was, that same neurologist peered at my brain on his computer and said, ‘yes, MS’.

I was stunned, hugged my MS nurse for a very long time, clutched the leaflets she gave me, went downstairs and bought a Boots Meal Deal for lunch.

I went home. I cried. A lot.

Now, five years on. I’m much more savvy, sure. I’ve re-adapted a whole lot of things in my life. My main aim upon being diagnosed was to get my son in to University and I’m now mere months away. I’ve almost done it.

However, he’s no longer fooled with my Sofa Command Centre. It scares him when I sleep a lot and I don’t blame him. This last relapse has been a cruel trial at one of the most important junctions of his life.

But I’m still here.

I’m sanguine now, I think. I hope. Life is easier now I have accepted how much more difficult it is. Which sounds strange, I know. Last week, I thought my epic relapse was over and then, blam, I fell asleep twice in one day. First time was on a site visit. I was in the van, which was a bit awkward -the boss woke me up strapping soil pipes to the roof and I thought I was being attacked by vampire snakes.

I’ve taken to working in our new office, which is lovely as I have coffee on tap and I can play music on the Mac. I create colourful charts and add up scary figures for the boss.

Ultimately, this MS-Versary will be understated. Long gone are the days of my Pity Party For One. I don’t rant and rave. I don’t rail against the injustice. I will only put up one banner, and have two or three party poppers.

I will reflect. On what it is to be human. We will all get sick. Just some of us sooner than others, natch?

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Don’t Be Strong … Just Be You

Be youEver heard:

  • Oh, you’re so strong, I really don’t know how I’d cope if I were you
  • You’re strong … I just know you can do this
  • You’re never given more in life than you can cope with … you’re so capable, you’ll do it

All lovely, life-affirming sentiments, intended to bolster us up and make us proud that we are somehow ‘battling’ MS.

Well, here’s the secret:

There is no battle.

All this military talk, of battles and fighting. Did you ask for this? Probably not. So, there is no battle and no fight.  Most battles/fights are fought with both sides having some kind of previous information, i.e. ‘There will be a fight tomorrow, be there or else, and bring your flags and biggest blokes, ta. P.s. your trench looks great’.

MS does not fight. It invades, when you least expect it. It inveigles itself right inside your life before you even have time to draw breath. So where is the battle in that? It’s like a tug of war with the winning team walking casually away pulling the rope while you’re still in the pub having a Pimm’s and catching up on the darts or Putin. Or something.

Going through the MS diagnostic process, I heard all of this. I was pushed into a position of ‘Fighter’. Quite suddenly. I wasn’t coming to terms with an incurable disease, I had to fight it. Erm, how exactly?

Now, on the cusp of my fifth anniversary of being diagnosed with MS, I realise I have never been a fighter and never will be. I run away at the first sign of trouble, which is probably why I held an extended MS pity-party for a couple of years, wailing ‘It’s not fair‘ to anyone kind enough to listen.

We all deal with MS in our own, unique way. It is, by it’s very nature, a unique illness and no two people with MS are the same. It is impossible to fight an illness which hijacks your immune system; we can merely accommodate the symptoms with medication.

According to so-called internet experts, my MS is due to familial connections, growing up in Scotland, having Nordic genetics, drinking Diet Coke, chewing gum, being exposed to life.

All well and good – a bit like closing the door when the horse has bolted?

Believe me, if you’re fairly newly-diagnosed, please don’t feel under pressure to ‘fight’. Allow yourself time; time to grieve, time to feel sorry for yourself and most importantly, time to realise that MS just … happens. It is not your fault and you do not have to become a flag-bearer.

Look after yourself. I think all of us living with MS could do well to remember this?

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With A Little Help From My Friends …

trashNot only has this latest relapse rocked my working world, it’s made me appreciate the smaller things in life.

I’ve snaffled some cut-down branches from one job to make Easter branches and have rescued some spare wood from another, with a view, at some point, to crafting  hollowed-out candle-sized logs …

I was out at 6am this morning, hanging up washing. Relapse Tick.

I replied to some emails. Another Relapse Tick.

I made three coffees for myself. Relapse Tick again.

And that’s it.

This whole time, through this hideous relapse, I have been alone. And then it hit me. I no longer have friends who will just pop over. I’ve isolated every single one of them.

I scanned my contacts list. Some were in a relationship and had found their happy MS medium, and I am thrilled for them. Some had large families and a whole lot of support. Some were suspicious of a single MSer. And some had no idea I needed them.

Had I run out of MS favours? Am I now so used to surviving on my own that I have become the person I always feared I would be – the Single Female with a Cat?

In that way, I certainly do tick all the boxes. I talk to her (The Cat). I judge her moods and respond accordingly, which is rather sad.

But back to the bigger issue – I have a wide circle of fantastic friends whom I love and adore yet I miss having friends who are there, no matter what. I think I’m one of those. Most of my friends have had various crises over the years and I’m there as soon as they put the phone down. I do my utmost to be present, in whatever capacity they need me.

Last week was a shock. Have I got so used to solitude that this is now my New Normal?  Am I now condemned to talking to the laurel bush in my backyard?

I miss my friends, but more the point, I realise I have not been the best of friends.

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