BBE Blog My Alter Ego, Sparky Two

Let’s see how far we get with this. It won’t be for everybody. Please click out now if you’re expecting book-related marketing for somebody, this one’s another personal update. It will have a good dollop of self-pity, a bushell of bitterness and hopefully just enough humour to stop it from being a Dave Peltzer, pity-me yarn. God, I hate those. There’s the odd editing tip in here, and if you follow them going forward, it will make your work just that tiny bit better. Here we go the first one, the just in that sentence is redudent. It says nothing, adds nothing and can be got rid of. Don’t pepper your work with the word just.

I thought I’d tell you, good folks, what’s been happening so that you don’t feel abandoned. However, my book covers are decorating the piece should you be so inclined.

So. (Weak opener. Never start a sentence with so). Add a smidge of rebellion to my blog recipe for the unrepentant so.

As most of you know, I’ve taken two weeks away from work. I have a brain condition called Trigeminal Neuralgia. This is not Neuralgia but people often confuse them. I call my condition Sparky because giving it a name and personality helps. He can be good fun. Like when you’re walking to the kitchen with a plate full of leftovers, and he causes a massive spike to make you tic. You try not to fall over. The dogs see the falling scraps before it gets to their bowls, and they go in for the feast giving you two more entities to connect and tangle with.

The Trigeminal is a nerve in the brain, and Neuralgia means pain.

Type one. We think I have this, but I’m under investigation for type two after six weeks post-diagnosis. Though it won’t be two, too, it will be one or the other.

Type one is caused primarily by stress but is a physical condition. The main blood vessel feeding the brain with blood–it wouldn’t be feeding it a cheese butty and chocolate pudding would it?– is next to the trigeminal nerve. This is the nerve in the brain—tri-three—that splits into three branches to receive messages from the jaw, nasal area and eye. The sufferer gets stressed, the brain sends a walloping great dollop of blood to the old grey sprout, and the swelling to the engorged blood vessel causes pressure against the Trigeminal nerve giving the sufferer excruciating pain. There are other causes, and I’m sure that staring at a computer screen for up to twenty hours a day hasn’t helped. However, the ever-helpful Hubster showed me that mine is stress-related, an example of his dedication to my increased stress is below.

Type Two, same result, same condition, but rather than the blood vessel pressing against the trigeminal nerve, it’s caused by a mass growing in the noggin. My doctor has decided I should be tested for this.

I’ve convinced myself that when I move my head, I can feel it—this lump of a thing inside me.

‘So, don’t move your head, Sooz.’

Cheers, darling.

I’m thinking brain tumour. Who wouldn’t? However, anybody that has read my books knows I have a more gruesome imagination than some. I can see the bastard banging around in there, bullying my poor Trigeminal nerve and poking it with a cattle prod—and an electric eel. Then I worry about who’s feeding the eel.

Another weirdness is fascinating. Even the Hubster, who takes no part in fancy and weirdness, says it’s amazing to see. Teagan—my dog—can sense when I have a tic. She shows concern and comes over. Many dogs would. But she sticks her nose right to the point of the pain every damn time. I’m touch-sensitive, so it sets me off on another bout of spiking and tics. They say dogs can smell cancer—so now my brain tumour—the size of a watermelon—is malignant. Of course, it is, and it’s green and dripping puss, and my head’s going to explode and decorate the office with brain matter—and watermelon. Dogs can smell epilepsy too, and the convulsion isn’t dissimilar, so maybe she’s picking that up on type one and it isn’t a cancerous tumour-monster at all.

Youngest son is used to the ticking now, but at first he thought it was hilarious and has given me the new name of Twitchy McTwitchface.

I had a Skype with Peter yesterday. ‘Yeah, Sooz. Maybe when you see the neurologist, don’t mention that your dog diagnosed you with a malignant brain tumour. Not sure the psycho-babble would go down too well.’

Don’t diss Doctor Teagan. She knows what she’s about.

That’s the science bit over. I think I got the facts right. And according to the NHS information pack, this is one of the most painful conditions a human being can have. And I agree, sometimes it’s worse than childbirth.

Against the doctor’s advice, I tried coming off my meds for a week and a half. I stopped them dead. Poor Mark suffered. The pain was constant 24-7 and went from a manageable 1-3 to an oh-my-fricking-God, 8-9 and into the bell tower when I spiked. Nope, that didn’t work. I’m learning to manage it.

Listen to the nice doctor, Sooz.

I hate the tablets.

I started on 100mg three times a day. Now I’m on 200mg four times a day. Well, to hell with that. I don’t want to rely on drugs for the rest of my life.

I went on them again yesterday because the pain was unbearable, and I’m trying 200 mg morning and night with no mid-day doses. The most important thing is to be consistent. It’s an accumulative build-up and takes time to establish in your bloodstream. Listen to the doctor.

Apparently, I know best and am constantly fiddling about with my dosage. Coming off them without weaning can cause seizures, but I did and was very smug with myself until a few days later when the last of it came out of my system, and the pain had an 18-30’s beach party in my head.

I don’t mind the night dose, but the day dosage knocks me for six and turns me into a zombie. As of yesterday, I’m on 400 mg a day. Straight in with 200’s, no build-up from 1’s as advised by the medical professional. I’m on and off them as we fall in and out of love like a par of teenagers in a highschool romance. I’m the Evil Knievel of Carbamazepine, and look how he ended up. You know that cage on fire with two crazed idiots doing the Wall of Death on motorbikes? That’s what goes on in my head. However, this morning is the first for over a week when I’ve woken up, and my brain isn’t hammering on the right side of my face to be let out through my eyeball. Result.

So, no meds equals pain through the roof and giving Mark a life that isn’t worth living.

‘Do you want a brew, love?’

‘Of course, I want a brew. What would give you the idea that I don’t want a cup of coffee, you moron? Do I look as though I don’t want a brew?’

I’m joking, it’s not that bad, but my patience levels aren’t great.

I keep coming back to the fact that I have to live with this—he doesn’t.

The weird thing is that I spike and tic more on the meds. Sparky comes out to play. The overall pain is less but maybe cushioning the pain with medication makes the electric shock-like spikes more prominent. I’m overly susceptible to the bad side of the medication, and it affects my balance and cognition. You wouldn’t want to be seen out with me in public. Some people manage it fine, but for me, it’s like starting the day on a cocktail binge. I’ve never been on a cocktail binge, I’m not paying those prices for a piddling little drink with ice and a sparkler. So I don’t know. I’m a voddie and coke girl, never change it up—but I imagine it’s like starting your day on half a dozen double Screaming Orgasms.

Sooz’s tip of the day. When the man knocks on your door with his cheesy Plastescine smile and asks you which broadband provider you use, start jerking about like an idiot. Watch how fast he cuts that conversation short.

I don’t need Halloween to scare people.

On the meds, I have no energy. I feel lethargic, and the smallest task is an effort. Jesus, I’m not a bloody Olympian at the best of times. Trying to understand something is like waiting for the words to force themselves through three feet of loft insulation before they get to me. Using the same analogy.

‘Do you want a brew, love?’

Do I want a what? What’s a brew? Oh yeah, coffee. Do I want one? I don’t know. Where does coffee come from? Brazil or Columbia mostly—or Tesco depending. Which animals are native to Columbia? Do I need to go to Tesco? Aldi would be cheaper. And then I answer, and it sounds like an old LP—that’s a record for the youngsters—on the slow speed.

Marshmallow talking. ‘Yeeeeaaaashh, coooofeeeee,’ Go on, let me have that one. Never use made-up words, only real ones. See, I am putting some editing tips in here as I make mistakes—on purpose because I’m a bad-ass bitch.

The other thing is balance. Oh boy, it’s like being the drunk middle-aged woman who can’t stand up at the bar. We’ve all seen her and either pitied her or despised her.

‘Oh, look, bless her. People are laughing at her. Should I go and help? Oops, she’s over. Come on, let’s get her up and into a taxi.’

I’ve never been that lady and don’t want to be.

The worst fall last week could have killed me. I’m mid, or maybe even post-menopause— and that, my darlings, is a whole other blog. My bones are too brittle to be flopping about like a raggy doll. I was putting a cover on our outdoor sofa. I stood up and thought I was upright, but I’d gone way past vertical. I’ve lost my sense of where straight up is and tend to lean backwards or to either side, thinking it’s perfect posture. If my fall hadn’t been broken, I’d have fallen straight back onto my skull, which could have killed me. I fell onto our glass coffee table—I loved that peacock table. My back was flat on the furniture. The table crashed to the ground shattering into a million pieces. My head fell into a steaming turd that Teagan had just left for me, and there I floundered, covered in glass and poo. I’m avoiding the obvious simile with whale references and going for, like a floundering thing that flounders floppily. Apart from a few cuts and bruises, I wasn’t hurt, thanks to the table.

But it scared me—and I was covered in dog crap.

I fall a lot, upstairs, downstairs, most often going to the bathroom at five in the morning.

I’m on 400 mg of this stuff a day. I spoke to somebody on 1,800. Holy rocking monasteries, can you imagine? 1,800 a day, and she can operate like a real human being. How? I’m like Animal out of the Muppets— he’s a bit of a hero of mine, actually, so not that bad a thing. Puppet crush.

Weekends seem to be bad. I think it’s because I’m trying to live a normal life and not let it beat me. So we do more.

Our friends Dave and Jacquie came around a few weeks ago. JD collectively. Another problem is light sensitivity, I live in darkness. As does Mark, our curtains are drawn, and he can’t put any main lights on. It’s awful for him. We had the rig set up with all the disco lights, so I was in dark glasses and looked like Roy Orbison. What a tit.

Any doctors reading this will probably disagree with me—but alcohol has no bearing on my condition. Thank you, God—who said I don’t believe in you, let me at them. I can still enjoy a drink with friends, and if anything, it helps to calm the spiking and the tics. The more I drink, the less I tic. The answer is simple, become an alcoholic.

We enjoy karaoke, and Jacquie thinks she’s Bez. She’s the percussion queen. I was on my fourth song before I could get through one without ticing. I feel as though it should have a K. I was with friends, and it was okay, but can you imagine if I was out in public and running a gig? I have since been to our Open Mic Karaoke gig and chanced two songs (off meds) and got through them okay.

This is where my sub-eds jump all over me with another editing tip. Don’t use brackets or parenthesis in prose. However this isn’t a novel. When you are writing a book, the purpose of brackets is to take you right out of the story and draw your attention to something outside of the text. It’s the last thing you want your reader to do. You want them in the moment and engaged. Don’t use brackets when writing fiction novels. Use either commas or the–M-dash to separate–your clauses. Blog writing is the exception–blogs, journals and diaries aren’t fiction novels so the rule doesn’t apply. But I’d still keep brackets on the down-low.

Now I have to steamline the reader back into that night with JD. I was two stiff vodkas in by the fourth song with JD, and the tics calmed down. I stumbled about like that drunk lady of earlier, bounced off walls, had to be caught, and generally bumbled. I only drink once a week and have never fallen over drunk. I can’t stand being out of control. Sparky gatecrashed and was enjoying the party.

Halfway through the night, I had a massive sneezing fit. One of my major triggers is sneezing, and I sneezed a dozen times. I was sneezing, spiking and ticking all at the same time (I am putting a K in it)—three actions, all involuntary. It was like tapping your head, rubbing your belly and singing the National Anthem, all while sneezing. I tried to suppress the sneeze, which made the spike worse, and when I tic, I have no concept of what’s happening. When I’m in a tic, it’s like a blackout for those few seconds. Spiking, ticking, and sneezing equals a massive oops. I lost control of my bladder.

It was only a little bit, a dribble rather than the Great Flood, a quick squirt of Flash on the setee, and it was fine. But it was enough to wet my dress, and I was mortified. I was wearing a variegated dress, pink to purple. Now it was pink, to purple with a circular black wet patch. Poor Mark. Dave laughed, Mark cringed, Jacqie hugged me, and I sloped off to change my clothes.

The next day we went shopping. It was horrendous. As I got out of the car, a breeze caught my face. Again, this is one of my worst triggers. That was it. I was off jerking the lambada all around B&M. I got stressed, which made it worse. I bounced off a terrified lady and bumped into every display we saw—they all stayed upright, no points there. Mark had to guide me around like a disabled person. We got to the end of an aisle, and I saw a father pulling his kids away from me. We can all feel sorry for the disabled, but walking in their shoes gave me a new perception of the daily discrimination and blatant staring.

I’m not soft, but I flew into the next aisle and was almost in tears.

‘Everybody’s looking at me, aren’t they?’

He didn’t sugarcoat it.

‘Yes, we’ve had a few stares.’

‘I want to go back to the car.’

‘We have to manage this. Come on, front it out.’

And then he did that thing. He’d been leading me around the shop, and he put on a sing-song voice as if he was talking to a toddler. ‘Let’s go over here, just a few more steps, that’s it.’

‘If you talk to me like a bloody idiot again, I’m going to sing The Wheels on the Bus at the top of my voice—with actions. This is your one and only warning—ever.’

‘Please don’t.’

We laughed, and it was okay, but we were both embarrassed.

Next, we went to TK’s, and of all the aisles to choose from, he led me down the one with the cut-glass crystal.

‘Are you flipping mad?’

‘What?’

‘If I do my wrecking ball imitation and crash into this lot, it’s going to cost us thousands.’

‘Live dangerously, girl.’

Mark has been amazing through this, but he won’t pander to me and pushes me to live our best life. He’s been a huge support. My insecurity says that he’ll get fed up and leave me, this is too much, and he didn’t sign up for it. But we take each day as it comes, and he says he’s in for the long haul.

That night he had a gig. I’d been looking forward to it because it was in Bowness, right in the heart of the Lake District. I didn’t want to embarrass him in front of the man paying him. He met his daughter there, and, even though it was my idea, I felt like Cinderella left at home. With the peeing and falling, bumbling about and ticking, I decided not to go.

It was after that weekend that I came off the meds, and the pain increased. Bears with sore heads had nothing on a Sooz with a sore head.

Teagan has always been a window barker. Now, with two of them, I made a recharged effort to keep them out of the front window. They were getting it.

Until.

Mark bought his daughter a convertible. It’s a pretty little green car—but it’s a car. I have as much interest in it as I have in fly-fishing. That’s none. Cars; things with four wheels. You drive them to get from one place to the next.

Mark was excited and wanted to show me this wonder of the auto world before he delivered it as a surprise. First, he pounded on the horn outside the window. The dogs were demented. When that didn’t work, rather than coming in to talk to me, he came up to the window—the very one that I’d spent all day keeping the dogs out of, and he shouted through it.

‘Sooz,’

No answer.

‘Sooz, I got the car.’

No answer. Just a lot of yelling at the dogs as I tried to get to the door. The worst thing you can do to train an animal is shout at it–or any time. They don’t need shouting at, they have to learn their boundaries and that should be taught quietly. Most of the time I’m pretty good at it–but I’m not a patient woman. .

‘Sooz, are you coming out to see it?’

Stress.

Bang.

Spike.

Pain like you wouldn’t believe.

I went out, holding my head and spoke to my beloved in staccato sentences. It wasn’t pretty.

After two weeks off, I’m going back to work on Monday. I will be working reduced hours.

In other news, as hinted at above, we have another dog. It’s love. The last thing I need, but I’d chop the fingers off anybody that tried to take him from me.

This little guy is a Jack Russell and belonged to a friend of my daughter-in-law. Would I have chosen a Jack if I’d wanted another dog, which I didn’t? Nope. Another editing tip, don’t write internal questions. Turn them into statements. But this fella is full of fun. He’s come from a very loud and high-energy household with five kids. Therefore his energy was on constant high alert.

‘Oh, everybody’s shouting. There must be danger. I’ll shout too.’

He’s a year old and untrained. Not even housetrained. We’ve had to start from day one—and it’s going very well. Living in a quiet, calm environment, the yapping is down 90%. He hasn’t pooed in the house for two days—we’ve had him six. And, so far today, we haven’t had any little ‘I’m here’ tinkles. It’s all good. We’re at the point where we can have a Who is More Likely to Pee competition—the dog or its owner?

He’s called Echo. I hate his name because it’s what I called my cat that was run over outside our house. More often than not, we call him Ten-men because he thinks he’s as hard as ten men. He’s the small guy in the pub who causes trouble and then stands back to let his mates deal with it.

‘Me and my sister here. We’re gonna kick your head in, Mister Rotweiller.’

There is danger around every corner.

‘Mum, it’s a burglar. I’ve got him cornered, yep, yap yap.’

‘No, Ten-men, it’s your dad. You remember? The man you loved this morning.’

‘Oh, yeah. Hi new Dad, yap, yap yap.’

‘Mum, it’s a mythical beast from the depths of Hades. It’s sitting on the wall and is going to kill us.’

‘No, honey, that’s a seagull.’

‘Argh, Mum, the noise. It’s a crazy sound not of this earth. We must overthrow it.’

‘No, Ten-men, that’s dad’s new speaker. I know it wasn’t there this morning, but it is now.’

We’re dealing. It’s all gravy.

A week in, and I love him and wouldn’t let him go for the world.

We looked into the future and saw what it would be like for him if we didn’t take him on. We had him for a week a few months ago and saw how quickly he settled with calmness, consistency, and a few ground rules. But he’s an untrained, hard work dog. Damn, he’s bright, though.

Somebody would see the cute puppy on Facebook and take him on with all good intentions. He’s a year old. He’d drive them mad, and they’d pass him onto somebody else. Who would pass him on, and give him, and pass him, until he either ended up being euthanased or with one of this town’s no-hopers that would beat him and break him.

He’s coming on well, and I love him—Dad, not so much yet.

Another plus in my life at the moment is time. After three years of not having a second to spare. I have time. I have more time for housework. I binge-watch reality TV—oh, shut up, you judgy judge thing, we all have dirty secrets. And I’m exercising again. It won’t last, but for now, I’m on a binge. Apparently, these bloody pills put an average of two stones on people in months. I’m a fat bird. I can’t afford another two stone—my two-small wardrobe is more populous than my ah, that feels good, wardrobe. Guys on the TN group say it can’t be avoided. It’s a chemical imbalance, apparently. Be buggered to that. It’s not happening.

Yesterday, in the midday heat of a horrendously hot day, I did a full treadmill workout. I went on a short course of death for ten minutes and followed it with a full yoga workout. I will better this condition or die trying—probably the latter. I’ve told my kids to start fighting over my most expensive Magic the Gathering playing card.

Nearly six hundred quid for a playing card. And I tell people I’m not mad. It used to be worth six hundred and fifty on the low rating, but I didn’t sell, and it dropped to four—but it’s rising again. I admit I’ve put it on the high rating to take the screenshot for dramatic effect. On the low rating, it’s still only four hundred and fifty and would sell for somewhere in the middle. I love my card collection. Something else I can make time for now. I cut everything except work out of my life. Not least my family—more time for them.

I want to go on holiday at the end of September or the first two weeks in October. I’m writing it here to set it as an intention—but it won’t come off. My destination of choice is Split in Croatia—but anywhere hot and easy with some amazing culture, good food and bars will do me. I might even get a travelogue out of it.

My ex-husband died this week, and it’s brought home to me that life can be tough—but hell, it’s still life, and it’s good. I’m gonna ride it. If you dance and fall over, isn’t it better than never having danced at all? If you pee in a headwind, aren’t you going to get wet? And if ducks paddle faster underwater, why don’t they just do backstroke?

And I suppose I’d better finish this with the announcement that BBE is taking submissions again. All restrictions have been lifted—and while it’s good to work, I really don’t mind if the input is gentle. I’ve enjoyed being off. There’s more to life that slaving to make a wage.