Category Archives: Emotions

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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Ran Out of Spoons, Moved on to Forks …

spoonAccording to the Spoon Theory , people with an illness such as MS have a set amount of energy each day – spoons – and you use them up as the day goes along. Run out of spoons, run out of energy.

It’s a great analogy – simple to explain and easy for others to understand. In theory.

Try explaining why you feel like the world is ending when outwardly, you seem ab-sooo-looot-ly fine.

Last Friday is a great case in point for me. There was a Renovation/Building show in Birmingham, around a 90 minute drive from my house. An ideal work opportunity, as I’m in the building industry.

I was duly semi-presentable at 7am (!) for The Boss to pick me up. He’d helpfully inserted a mug full of extra-shot-caffeine into the cup holder and I was wide-eyed and bushy-tailed all the way up the motorway.

At the venue I got my name badge and started to wander around the 500 – 500! – stalls. I crumpled after stall 7. I got my walking stick out and The Boss took my arm for the rest of the 493 stalls. It was hot, I was off-balance, gibbering and going slightly bonkers.

I was muttering ‘bi-folds’, ‘ventilation systems’ and ‘coloured concrete’ under my breath. I took every free gift going and ended up with a decent stash of pens, notepads, mints and Gummi Bears. Plus a set of knives, bizarrely.

And then I collapsed. Fair play, it was graceful. My legs simply folded from beneath me. I had had warning signs over the last couple of weeks and dismissed them – ‘ach, it was nothing’.

Now I knew it wasn’t nothing. This was real and it scared the Gummi Bears out of me. I made it back to the car, just. And slept the whole way back to Wales, waking briefly around Monmouth, before slumping back into oblivion.

Back at my house, The Boss deposited me safely through my front door and I made straight for the sofa. I had to find some elusive spoons – there was a gathering from the writing group I attend, that evening in a local pub. I could do this.

Except, I couldn’t.

I emailed everyone my apologies through tears. A Friday night, and I was condemned to my sofa.

I had run out of spoons and believed I could move onto a trusty reserve, the forks. In real life, pre-MS, I had oodles of reserve energy (those pesky forks). They could be called upon at short notice and would pull me through any situation. But not this time. I was all out of them too.

So now I am cutlery-less. No spoons, no forks. As for knives, the closest I get is my free gift (they’re super sharp and quite lovely). My life at the moment consists of work (or similar activity) til 2pm, then Recovery until 10pm, when I go to bed and it all starts again. There’s nothing extra. It’s boring. It’s frightening.

Is this my future?

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Middling Along …

fineI’m going through some weird kind of middling relapse.

It hasn’t poleaxed me  – but it’s come pretty close – and it hasn’t rendered me absolutely useless for work (yup, The Boss would no doubt disagree). Although I was off work for several weeks over the Winter with a concrete, solid, horrendous relapse.

Instead, it’s calibrated itself just so:

  • Just so that I can go to work, but end up on the sofa for the rest of the day/evening.
  • Just so that I can manage to supply The Teenager with pocket money but only a passing interest in his Instagram photos of blurry figures bouncing along to some soundtrack in a dark and dingy club.
  • Just so that I can feed the cat but not take delight in the fact that she loves her £5.99 Play Tunnel from ‘Bargains R Us’, cunningly laced with a liberal spray of catnip.

Super-glued to my sofa, I have a whole lot of time to reflect, and feel ill. Part of me wishes the relapse was a full-blown beauty, blasting real life out of the water. The other part is eternally grateful I can still manage a semblance of normality.

Which comprises:

  • Bustling around when The Teenager is home from school (for four minutes, long enough to Meet ‘n’ Greet, bring him up to speed on the fridge contents and arrange a money transfer).
  • Bustling around when The Cat comes home, chastising her for staying out all night then feeding her special biscuits (a free gift from Ocado).
  • Replying to emails, using a jaunty, happy tone. Before dying slowly and feeling very sorry for myself.

I was chatting to The Boss today in the van on our way between jobs. I was trying to explain to him how it felt:

‘… you know, when you’re shattered, lying on the sofa wishing that someone could just make dinner? And the laundry was done. And the place was clean-ish?’

He paused. Then laughed. ‘My mum does my laundry and if I’m hungry, I get a Deliveroo.’

I give up …

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Building A Future?

woodUntil fairly recently, I had dreams of taking a Doctorate in Creative Writing.

After the utter implausibility of finally mastering a Master’s through much trial and error (plus a decapitated mouse which appeared in my first, futile attempt at short fiction), I thought, ‘why not?’

I duly collected leaflets about available courses and being a mature student. I scanned blogs of those gone before, downloaded information and looked into funding. I even attended a Postgraduate Student Fair and found myself surrounded by kids I was old enough to parent. But. I could do this?

I can’t.

I’ve read the case studies. Bright-eyed eager (young) people with many, many awards under their belts and obscure research titles to their names. I’ve read the tiny success rates about securing funding and have looked in to alternative sources of funding, i.e. living like a pauper for six years, existing on Super-Noodles and crackers.

I would love to surrender my life to this dream over the next three years, or six years part time as I still have to work. I want to be immersed in writing and carry a notebook confidently into the nearest cafe, flick open a fresh page and jot down suitably astounding and genre-defying remarks.

I can’t.

There’s not much funding out there for a getting-on-for-mature MS blogger who fancies herself as the next Sylvia Plath.

So, I have a brand-new, shiny idea.

After much googling and sending-off-for-information, I have decided to retrain (perhaps) as … a carpenter.

Brimming with excitement, I laid out my life-altering plan to The Boss, aka My One-Time Best Friend over a coffee. After he stopped laughing, he asked why.

Well. After project-managing many building projects, I felt confident that I could carry out such an artisan craft, all by myself. And a training course would merely solidify all that I have learned these last years?

I like the word ‘artisan’ and pictured a future workshop where I would wood-turn and create dove-tails and suchlike. It would be a dusty, arty place, with deliberately mismatched chairs, a Scandinavian name and hand-thrown pottery mugs.

He mentioned that I could already cut architrave, lay floors and use a drill. I was even a passable tiler (praise indeed from The Boss, although I am an excellent tiler, if the space is small enough and I can sit down).

He queried my MS – would I be able to cope with the course? Yes – he could be my helper, if needs be. This didn’t go down so well, so I won’t be telling him when I go for the interview.

What do you guys think? Have I got enough drive to cut it in the World of Wood?

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