The Ugly Spectre Of MS

noThe Teenager collapsed last week.

As with most teenagers, he had his phone glued to his hand at the time and managed to text me in work:

‘can’t get off the floor, come and help me. I’m scared’.

I couldn’t get there straight away so sent others, who managed to pick him up off the floor.

By the time I arrived home, he was marooned in his bed, in pain and confused.

I took him to the GP and the chiropractor.

The evening before, we had been in A&E with extreme nerve pain. And were referred back to his GP.

Some tests were run.

He has been referred to a neurologist.

He mentioned a few symptoms that made my blood run cold.

He has been working out at the gym. That will be it?

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OMG … MRI …

mriI had an MRI scan today to throw some light on my recent relapse.

I know the score now – I leave the watch and earrings at home, wear a sports bra (no metal clips), don a tatty old cashmere sweater (usually freezing in the tube) and took my best friend (where would I be without her?).

At the hospital, I mainlined caffeine before we made our way to the clinic.

Once there, I answered all the questions, disclosed my weight (state secret), confirmed I wasn’t pregnant (hah!), accepted the ear-plugs and laid down, squeezing my eyes tightly shut.

Ho hum. I was whooshed into the tube and had that momentary burst of panic, which I knew if I let it grow, would condemn me to squeezing the emergency button and calling a halt to the whole thing. Claustrophobia + MRI = gritted teeth and the promise of looking round the hospital gift shops if I make it through.

After a while of zoning out, working out a shopping list in my mind, I was slid back out and injected with a dye to light up any active lesions in my brain. Then I was popped back in again. More banging sounds, which I attempted to ignore and concentrate on whether I needed one or two courgettes and had I run out of loo roll?

I was slid back out yet again, fully baked, and rolled off the plastic tray I’d been lying on, relieved it was all over. Except it wasn’t. Someone lifted a huge plastic square over to me, like a massive head brace thing with bolt bits on it. A different head rest was put in to place. Ah, they were preparing for the next patient?

Nope. For the first time ever, my neck was to have it’s very own special MRI. It was terrifying. My head was locked in to place, like some Medieval form of torture and I was slid yet again back in to the tube.

This time it was even weirder. Far from being cold, I felt as if I was being cooked. The heat blossomed all around me and then a pressure started on my head, like a gentle crushing, but crushing nonetheless. Hmm. The panic took root and I frantically tried to recall the courgettes. Three?

Over the intercom, I dimly heard ‘only two more scans to go’, listening to a brand new MRI theme tune. I swear it sounded like some bloke saying, ‘dah, dah, dah’ to a backbeat of drums.

Finally, eventually, I was slid out for the final time. I was shaking as I popped the earplugs in the bin and fell against the wall as I tried to put my boots back on. I staggered back to my friend, went to the loo (pesky coffee) and set off for the shops.

My heart was beating so fast, I couldn’t decide whether to buy a coaster with ‘Live, Love, Laugh!’ on it or a pencil with a tiny windmill topper. I went home, images of courgettes following me like a teasing hallucination.

I hate courgettes.

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You Won’t Know If I Don’t Tell You …

BBCI took part in filming for BBC Wales last week.

I’d responded to their question, ‘What Would You Do If You Were Prime Minister?’, as part of their #MyManifesto2017 campaign. How could I resist?

They contacted me, we set up a date and they popped into the office for a chat, cameras in tow.

We discussed a whole range of issues, including disability rights, discrimination, PIP and benefit cuts.

One issue that came up again and again was describing MS at its worst. Having come out of an epic relapse, my longest ever (February to May), it was surprisingly hard to convey just why I looked so weirdly happy and brimming with optimism.

Between takes, I thought about this. Leaving a relapse is like being let out of jail. You’re handed back everything you signed over when you entered this awful state; perhaps not a watch and wallet in a plastic bag, but your innate energy, curiosity, vibrancy.

I found myself constantly saying, ‘no one sees me at my worst’. And you know, they don’t. As the only adult in my household, I shield The Teenager from the majority of a relapse’s effects. I can also work from home, alone. Or in the office, alone. During my endless days off work, I kept myself to myself. Most people were surprised to hear I’d even been through a relapse. It’s because they don’t see me. And I don’t tell them.

Pride? Obstinacy? Or am I just becoming a brilliant MS actress? I’ve had a few emails from you guys saying you know I’m not doing great as I haven’t blogged so much. Absolutely spot on.

I really don’t know why I lock myself away. I do know that one of a relapse’s effects is survival – you just have to get through it, so you put your head down, grit your teeth and keep on keeping on, as much as possible. This doesn’t leave much room for societal niceties – I don’t tend to have friends over, I don’t meet up with friends (my Excuse Bank is extensive) and I don’t do anything except putting what’s left of my diminished energy into getting through a horrendous time, with no idea how long it will last.

Relapses are reflective – you only know how bad they are when you start coming out of one. Part of me wishes the BBC could film me during a relapse but I also know that I wouldn’t have picked up my phone and sent that initial tweet if I was still in Deepest Darkest Relapse Dungeon.

So hopefully I can harness my rising energy levels for something positive. My short film will go live next week, on the telly, radio and internet (I know! Me – in all my glory), and they said they will Photoshop me down to a size 8 and make my chubby cheeks a bit more pointy. (I fear they are joking … )

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Kicked The Basket, Stayed Calm …

don't take me homeI worked the whole bank holiday.

I didn’t mind too much; I’d had to stay at home during the height of the sudden heatwave and had ploughed my way through numerous box-sets on telly, fanning myself with one of The Teenager’s discarded school files.

I was hot, bored and bothered. MS heat intolerance is miserable.

Friday was The Teenager’s last official day at school. Ever. I unpinned his timetable from the notice board in the kitchen with a deep, sad sigh. I woke him up for school for the last time, waved him off to his last ever school assembly, with his last ever lunch money in his pocket. He popped back briefly a couple of hours later and I daubed his face with camouflage make-up, hung dog tags around his neck and waved him off again.

He was taking part in the Sixth Form Leaver’s tradition – a pub crawl around the local area, ending up in the city centre. This year’s theme was ‘military’ (last year’s was ‘American Football’). There’s a long road between pubs outside my house and every year I see the endless line of kids walking past, chanting loudly. Perhaps with Manchester in mind, watching the procession of students walk past dressed in various forms of khaki, singing ‘Don’t Take Me Home‘ made me cry.

That was 2pm. I heard him come back home at 3am, rise again at 5am and leave to get the train/bus/tram to Manchester to watch one of his favourite bands at Old Trafford. Plus, he’d remembered to lock the door and let the cat out. Impressive.

Anyway, on my way to work this morning I stopped off at a local shop to pick up some lunch. I was wandering around the aisles, debating microwave lasagna vs. chicken pieces when, wham, I went flying. Foot drop? Nope. Someone had left an empty basket in the aisle, one of those wire ones, so not readily visible. I picked myself up, a little bruised and embarrassed. I heard laughter. I turned round and the woman at the counter was looking at me and … laughing.

Not asking if I was ok, not coming over to help. She stayed behind the counter. Laughing. I kicked the basket. It knocked into a display of sun-cream (Are You Protected?) which wobbled a bit and a few bottles fell off. I kicked them too, the irony of sun cream too much to bear.

I picked up some chicken pieces and went to the counter. She was still laughing. I asked if she was serious. She said, ‘You wha’?’, raised an eyebrow, finished checking her phone and rang through my items with a studious boredom that was actually pretty impressive.

I got to my car. Took several deep breaths. I should have gone back. I could have kicked myself along with the sun-cream.

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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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