The random rambler strikes again #fibromyalgia
I see myself. I am an observer. An ordinary holiday maker laying stretched on a white plastic sunbed; my towel scrunched beneath me, my hot cheek stuck to my hand as my head rests upon it.
Marinating in Piz Buin my ears are filled with 80’s, 90’s, keep going, pop songs. A paperback; yesterday’s pages crispy, today’s pages damp, is visual on top of my beach bag – Primark – £6.99 – more than I’d wanted to pay for a throwaway but it has adorable pink pom poms dangling from the handles.
Sauntering toward the pool, in a fitted floral bikini, I’m not self conscious; I’ve had a full leg wax and Brazilian. I’m slim in a comfortable way. My hair is styled in a short wavy bob. I look down at my feet; my nails are painted in Russian blue. I love them.
I linger at the poolside appreciating the hot sun baking me nicely at 39 degrees whilst I search out my children among the bobbing heads. Caitlan and Paddy are negotiating a gigantic rubber ring; laughing, plunging, splashing; their factor fifty legs and arms entangled. With large green diving goggles suctioned to their faces they are the sweetest frogs I’ve ever seen. They wave madly at me. I return with an SOS wave, smiling so wide there’s no posing for cool selfies here. I like my smile; the sensation of its corners stretching up and outward. I don’t care if I’m inviting wrinkles. I want a face that’s lived, not a smooth, alabaster bust capturing a version of me.
Leisurely swimming, my arms stretch out wide in a circular motion and my knees come together propelling me forward. I feel the strength in my limbs. My stomach muscles tighten as I surge back and forth. Twenty lengths – easy!
At the deep end, folding my legs, I use my hands to wall walk to the pool floor. I resist my body’s instinct to float up. I sit cross-legged, holding my breath, enjoying a moment that’s completely mine. Until I see a set of Russian Blue toes that match mine. Submerged I pull Caitlan’s leg. Surfacing I meet her mischievous green eyes; she constantly looks like she rolled down a hill, she’s bursting with adventure. Paddy’s face pops up over her shoulder. His smile is totally disarming. A friend To Everyone states a school certificate on the fridge door back home. I hold my hand straight and stiff, the thumb resting against my forehead to form a shark fin. I hum the soundtrack to Jaws and the games begin.
They play water polo. My husband is ultra competitive. He lunges for the ball, throws it to Paddy who tosses it to Caitlan who scores; she is her father’s daughter.
Resting my back against the pool side, the tiles rough against my skin, I look up at the glorious sun; its heat rejuvenating. I want to bottle this moment. I could selfishly say I wanted this minute to last forever but then Caitlan and Paddy would be 14 and 13 eternally.
My husband swims toward me. I like how he looks in sunglasses, his hair wet. Putting his arms either side of me, we kiss. It’s slow and tells a story. A marriage, not made in heaven but made from sunshine and rain.
Reaching up to the handles of the pool ladder, I put my foot on the first step and feel the muscles in my arms tense as I pull myself up. Water falls from me. I run my hand through my hair, droplets race down my already hot back.
I’m running with my husband, to the beach, the kids up front. My breathing synchronizes with my stride. The grassy ground, hard-baked and cracked by the intense Turkey sun, is beneath me. Running is my thing; I fall into a comfortable rhythm. I’m connected to the earth, to the infinitely clear blue sky above me; In my own way I’m beautiful: my strength, my gregariousness, I make every day mean something.
My husband passes me, he becomes a dot in the distance, I can’t see the kids and I feel a tightness across my chest and a hoarseness in my throat. At the beach bar I’m breathing hard, bent over, puffing out a stitch. My family are in the sea, jumping over waves with frothy white crests. I look a little mad but I’ve an aura that catches the attention of the odd passer-by. For a brief, infectious moment they too feel carefree. My happiness is contagious.
Sitting at the beach bar, my throat a little raw from running, I enjoy a cappuccino. I recall the night before. Our early dinner to avoid the all-inclusive rush hour The amphitheater sipping mojitos and tequilas with rainbow umbrellas pierced through limes and oranges. Below us, the stage with twirling mini princesses. We played gin rummy, twenty one and traffic lights, serious stuff with Euros at stake. Something niggles. I hadn’t won a game. I couldn’t keep track of what card, what suit, went down. Me the master cards woman outwitted by teens?
After the entertainment, the kids meet up with their German friends and we follow them to the beach disco. They are not shy – I like that about them; there’s no awkwardness. They prank around and dance in a circle. Pop and Garage beats out, its base shuddering through my feet and upwards. The kids jump in unison, arms punching the air, singing along, chanting. I notice the tall blond boy; he’s playfully pushing Caitlan around. I see the first spark of attraction between them.
I glance nostalgically at my husband. His eyes reflect a nineteen year old girl, in a bright red dress, playing pub darts. She’s at the bar counting coins from a pink, soft leather purse she purchased in Greece. He cheekily chats her up. He’s confident; she finds him alluring. He’s says his name’s Tinker.
Hips swaying, shoulders shimmying I’m dancing and I feel on top of the world. I look above at the glitter balls and the pink and blue LED disco lights and WHAM and DURAN DURAN pop randomly to mind. Tinker pulls me to him and we move in unison. Thirty years and we’re each other’s shadow. My head nestles into his neck. I kiss it gently. I’m still in love.
I think I’m tired, too much sun perhaps. The music becomes an aural assault. The glitter ball stings my eyes. Walking to the chalet the kids tell me the night was bangin’ but their voices are distant. Their is a nagging persistence in my brain that all is not well; nothing it what it seems.
I see myself; the rose tinted glasses removed. I’m the same but different. Still the short wavy bob, but my frame is fuller, my poise diminished, my posture stooped but the easy smile flickering at the first glimpse of my family is me. My heart is still huge but my head is muddled. My body is awkward. I laugh; it’s warm and real and I feel comforted by that.
I’m putting sun lotion on Paddy’s back; it’s what mums do. My arms feel weakly heavy; they are alien to me but I continue to rub and I massage a little into his ears. He’s so gorgeous, I want to encircle him in my arms and keep him safe; always.
A member of the animation team spots us. He knows Cait and Pad. Yesterday they went paintballing with him. He’s a bit of a joker. He’s young, about 26, his nose is large but it suits his face. He has a six pack and is hench as Caitlan would say. I note a glimmer of interest in his eyes; he’s not sure what to make of me, of us.
“Hey Paddy, Katrin (he can’t pronounce Caitlan), hoopa hoopa it’s pool games.”
In unison Paddy and Cait scramble off their sun beds and join the forming crowd of teens and menopausal men.
Tink is already in the pool. Shit! Getting off the sun bed, without help, is a feat in itself. I turn onto my side and raise my outer leg toward the ground – my bottom is now upright and on full HD view; wide angle). Straightening takes a while. The muscle spasms, the rigidness at my joints, the pain that’s deep in the marrow of my bones, make moving exhausting.
“Yeahhhhhhh – I’m upright – independently; joy!” I’ve begun to talk to myself. It began as quick, motivational comments and now I mutter most of the day, often incoherently.
Squatting I retrieve my camera from my bag. It’s not lady-like but I can’t bend over; I get dizzy and fall. “But it’s hard getting up from a crouched position; very stressful on the knees.” See! I’m talking to myself again.
Chart music vibrates from a large speaker, it floats into my ears and beats in my heart, I feel light and elevated and young. I linger momentarily and embrace it. My hips sway gently. I yearn to dance so fucking much “But it’s difficult, my legs beat to their own drum now”.
I reach for my cane; my fingers are stiff, it’s hard to grasp. Walking slowly toward the pool, I consider each step, it’s a slippery surface, I teeter then regain balance. My gait is unusual. I see sunbathers speculatively watching me.
“What do you think is wrong with her?” they ask in hushed tones “MS, Motor Neurons, Stroke”; they’ll never guess; on holiday with little to distract I’ve become the center of attention. “I’m a celebrity. Cool!“
Sitting on the poolside, my legs dangle in the water; they are lean no longer – such a shame. My husband swims over and lifts himself out of the pool.
“You’re scaring the holidaymakers,” he says abruptly. He’s not impatient with me, his voice just always sounds abrupt, a little rude, He’s telling me I’m at it again. Giving a running commentary to my life.
I look straight ahead and feel the increasing pressure of keeping my head upright, unsupported, only a neck brace, between me and pain. Paddy is racing across inflatable stepping stones. He’s a whippet in neon orange shorts. The way his body moves, hia quick reflexes astonish me. He’s on video, I rewind and watch, again and again!
Caitlan is so cheeky. She was out first round but no one noticed. Now she’s in the final of the ‘Spoon Diving Competition,’ with two bulky Belgiums wearing inappropriate shorts. We all know only Daniel Craig does Speedos. I watch her, she’s got a killer look, her toes just touch the edge of the pool and she’s leaning forward. She has a glass hour figure; her legs are strong and tanned; her flamingo bikini is perfect; feminine but modest. She glances at me and I give her the thumbs up; she’s already a winner. I love her so much I can barely breath.
My husband assists me to my sunbed. I’m a disaster: my leg dragging, my fingers involuntarily flicking, my neck hunched into my shoulders. Sitting on the edge of the plastic bed, I’m withdrawn as he covers me in sun screen. I say something benign, to fill the silence of reality, of disability. Something about getting a full flush at cards tonight. He says something equally meaningless, yet his pause speaks volumes. We both know I’m not the wife he chose.
I lay stiff; an embalmed mummy unable to alter position. I lose myself in music: Latin, Maroon 5 and Eur. I retreat to a parallel universe. I’m the old me, gracefully leaping from one inflatable step to another. Paddy is behind me but I’m too fast, I stick my tongue out at him and leap for the sky and plunge into the water.
I’m plunging to the bottom of the pool, waiting for the bubbles and white water to settle. Where is that spoon? My heart is racing and I’m struggling to breath. My lungs are bursting but as I spot the spoon excitement oxygenates me and I grasp it tight to my chest. Resurfacing, the animation team clap and my husband gives me that look and I know in about ten minutes we’ll be naked somewhere…but it’s SciFi.
Walking from the pool to our room is wearing; the day takes its toll. Friends don’t always understand…that when I’m with them, that’s my best genre; Chick Lit. Behind the scenes I’m Drama, Thriller, Horror. Pregabalin, Amitriptyline, Tramadol, Naproxen, Oxycontin; my hand trembles slightly as I pop pill after pill. I’m a rerun of Trainspotting.
Our room in spacious with two sets of twin beds divided by a lattice partition. We take turns in the bathroom getting ready for dinner. I sit on the wall of our patio; the kids intermittently appear with a snippet of information about endangered animals (satellite T.V.).
“You look pretty mum.”
It true I’m wearing a green emerald dress that cups my breasts, comes in at the waste and floats round my legs. My skin is golden. I look a picture of health.
It’s still hot; we walk together toward the restaurant. It’s ironic that the hotel gardens are home to tortoise. I watch Shelly move, each step she plods is laboured. ‘Forest Gump’ comes to mind. The impulse to drop my cane, pull my arm free of my husband and run, strikes from nowhere but I swallow it. Instead I move closer to him shutting out the loud voice in the silence, “Run Alison, run!”
Dinner is always a success. I absolutely love all-inclusive. I sit at the table and Patrick places a dinner plate in front of me with tasty morsels from seven continents – of course noodles go with chicken tikka! I look at my son who thinks of me before himself and I feel joy.
Getting food from plate to mouth is taxing. I’m grinning because my meatball rolled across our table and onto the floor; oops! I look at Kitty, she spotted my misdemeanor and we share a secret smile.
Laying motionless in bed, my husband asleep long ago, I feel sad. I live a life I didn’t choose. I won it in a game of fate. My bones are hollow, dry, brittle, dusty. I was born with this malformed spine, with its missing discs and fused vertebrae, that sits in a spinal column that’s too narrow, where the cord is pinched and compressed. My heart tightens; my husband and children didn’t chose this life either.
Tomorrow we go home. We say goodbye to adventure, to a hot, burning sun, to soft golden sand, to pool games and teenage romance. I say goodbye to me.
I wouldn’t say I was born to write. If I hadn’t become disabled I’d still be teaching in an FE college. It’s ironic that I worked whilst raising my children yet I ended up unable to work when my children were independent.
As a working mum I felt I had to do it all: contribute financially, maintain a career, cook amazing nutritional meals, clean my house till it gleamed, launder, raise happy, well-balanced children and drop it till it’s hot in the bedroom. I spent ten years close to exhaustion. I think that’s why my condition went undetected for so long; I thought every working mother felt this crap.
I think about how hard the suffragettes worked for equality, their risks, their compromise, even their blood and somehow that’s been misinterpreted. Women can’t do it all; nobody can.
As a woman I want opportunity, choice and equality for my daughters. On the same hand I want my sons to be able to take parental leave without feeling their jobs or promotions are threatened.
I won’t claim to have raised my girls and boys the same; in fact I didn’t raise my two girls the same. I took into account my children’s strengths and weaknesses. Their opportunities though were equal; they all did martial arts, swimming lessons, played with each others toys, learnt to cook, put a wash on, cut the grass and paint.
I was born in 1967, to Irish parents. I felt being pretty, well-mannered, happy and singing were my parent’s expectations of me. So I worried I was fat but covered it with a smile whilst singing Zip-A-Dee-Doo-Dah.
I married a man of Irish descent and continued on my path of being the woman who did it all as and that’s what he expected.
Yet stay at home mums criticised me for abandoning my children and colleagues resented the time I took off for my children. My mother in law decided I didn’t fulfill either role particularly well.
I raised my kids to be independent, to enjoy life as individuals, to be content with their own company and not be ruled by money but by dreams.
They still have childhood wounds and insecurities. My marriage, though happy, had glitches. As parents we’ve done a better job than our parents but we’ve made mistakes. My children have seen how I’ve deferred to my husband throughout our relationship and it’s led to the girls being assertive and the boys being respectful of women’s opinions.
I don’t differentiate between my children emotionally; boys are as susceptible as girls to doubt, identity anxiety and mental turbulence especially now they’re expected to be shredded. My husband had a hang up about boys crying but I wanted my sons to let it out, express themselves, be open with their feelings.
But today I’m focusing on women.
There are so many amazingly strong and focused women who have paved the way for the rights women have today. In a way it’s a lot for women to live up to. I’d probably be a disappointment. Even though I was emotionally strong and juggling the world I was letting the side down. What was I to do? Be someone I’m not? I was raised to please, to put others before myself, to be subservient. I didn’t know how to challenge my husband. How to negotiate sharing the load. I didn’t have that skill set when our marriage fell into a traditional pattern. Of course this all turned on its head when I became ill.
I went through a few bleak years; multiple surgeries, chronic pain, immobility. What floored me was losing my identity. I couldn’t teach or keep house. I spent weeks at a time in bed, high on drugs, low on energy. Who even was I? Other than a burden.
It was the impetus of three women together that changed, not just the course of my life, but who I now am; Grace (Gertrude), Alison; the writer; that’s me (T) and Caitlan (Kitty). My daughters said write a YA novel; mum you can do it. In among the regular round ups of how the novel was progressing we came up with a title The Rebirth of Henry Whittle. Which is the first in a trilogy; Henry Whittle’s Revenge and RIP Henry Whittle. The bantar was never ending because we’d turned it into a Netflix series and regularly changed the cast. We created a soundtrack. We looked and found an agent. We got our heads around rejection from publishers. The girls supported me when I decided to withdraw from my agent and take ownership back of my work. Part of me hoped to secure another agent but my attempts were halfhearted. Proceeding down the traditional route without the woman who’d taken a chance on me and supported my development as a writer was too sad.
I was very poorly in the Autumn and after a week in hospital in November I panicked that I’d get too ill to fulfill my writer’s dream and so calling on my daughters to scramble a cover together I plunged into self publishing. I didn’t research it; I have to conserve my energy for writing and I’d no spare cash for professional editing. I didn’t know the rules of social media or the protocol of book reviews so I bowled in with…look at my book! When you have a degenerative disease and spinal cord damage your health is unpredictable from hour to hour. Pretty much you’re in the shit. I’ve thesaurused; SHIT is THE word!
I’m Twittering; trying to genuinely connect with readers, particularly young adults, through posts that reflect me. My book shamefully has appeared in every post. In my defense, other than my children and marriage, my relationship with writing is my greatest comfort. Today Gerty advised me to stop the hard plug; she’s right of course. It’s because Random Attachment defies my disability; it’s concrete evidence of my empowerment. I am a woman of substance, yet a free spirit. I’m soaring so high even though my body is sluggish. So I know I’ve been OTT, pushy, presumptuous. Yes I’ve much to learn and I will learn. Yesterday I conquered widgets on WordPress.
I’m three months into my self publishing career; I’ve sold books; I’m an author. I have reinvented myself. Historically I haven’t exhibited feminist behaviour and I’m not writing groundbreaking literary masterpieces, more Mills & Boon with edge. Yet finally I’m a woman my family are proud of; a risk taker, a chancer, a dreamer.
I live with uncertainty but I know one thing for sure…I will write till I die.
The Sisterhood of the Travelling Pants was my daughters’ favorite book. Now I’m introducing The Sisterhood of The Travelling Book because between the three of us we are giving my book exposure.
I began the day with a vlog. I’d previously researched how to connect with an audience. Apparently you need to bring the energy. Unfortunately me and energy haven’t been in the same room for some time. Instead I natter about my latest read Sweet Little Lies by Caz Frear which begun promisingly. I’m about a third in and I’m not riveted but I love the London feel and the insight to the characters. It has a flavour of Ian McEwan’s Atonement, in that, a child’s perception is often flawed.
I put this thriller aside for my husband’s and my Valentine Lunch. It’s quieter a few days before the actual date; I’m not great in restaurants with tight spacing and lots of diners because my spatial awareness dives.
I was pretty excited…they’d rhubarb crumble for dessert….and it’s not often we go on dates; money is tight and I get tired easily.
I’ve been married twenty-eight years; my husband was my first boyfriend. I’ve been with him more years than I’ve been without him. We still find plenty to chat and laugh about which is nice at our age. Particularly my diversion into writing and self publishing.
Arriving at the restaurant I’m a bit disappointed they haven’t put much thought into Valentine; there’s not an inflated, shimmering heart in sight nor a sprinkling of glitter hearts on the table. Anyway my novel comes out and I make a pretty arrangement and snap. The waiter comes over and I ask for two glasses of champagne; it comes with the Valentine set menu. It arrives for the next photo opportunity!
Next we’re offered the standard menu yet my booking clearly states Valentine Menu. The waiter looks uncomfortable then says it’s only available on 14th. My heart drops to my socks. I’m sure it was for a whole week, starting today? But I get so confused. Fibromyalgia brain fog and medication has me second guessing myself constantly. It’s been the basis of my depression. It’s why it’s easier to stay in. Don’t worry my husband says, we’ll pick from the main menu…but that’s going to cost. I check the pretty valentine menu for dates; in tiny writing it says valid from 9 Feb to 16 Feb. I feel more than annoyed when I point this out. I could accept Madam, very sorry, we’re not offering the Valentine menu but here’s a complimentary glass of champagne – instead a lie – which had my confidence plummeting. I knocked my cutlery off the table. Reaching for it, I dropped my novel on the floor. I sip my champagne and think f**k; this champagne’s now outside the safety of the Valentine price.
We play the disabled card. There are NO advantages to being disabled. Thoughtless people say:
- you don’t work anymore
- you can park easily
- you get a free ticket at the cinema
I want to run across the beach. I want to dance to Wiley at my son’s eighteenth. I want to enroll on SAS Who Dares Wins!
I digress. My husband told them about my condition, how much I’d looked forward to today, how exhausting this mix up is for me – it was all true – but not exactly low key or romantic.
The restaurant sees the error of their ways and throw champagne and pudding in for free. We relax. My husband picks my book and camera up, walks off and returns with this image. Ok it’s not as clean and pretty as my shots but The Sisterhood of the Travelling Book has it’s first male member.
On Valentine’s Day my book accompanies me to a patisserie where I’m known as Mrs Banoffee. For Christmas my son’s generous girlfriend bought my husband and I Afternoon Tea and I booked it for 14th Feb. During our marriage we’ve only ever celebrated our children’s birthdays so this dating business is like our early days, when we thought about what we’d wear, what we’d take off. I’m not the person either of us imagined I’d be at 51. I seriously thought with mind over matter I could cheat Myelopathy…not so. I’m pretty broken in some ways…I accept that but don’t ever think I gave up. Life for the disabled is like special forces training…it’s a mental game as well as physical. It’s about the team not the individual. When I was so weak I couldn’t turn the pages of a book my husband tore the pages from the spine and attached a few at a time to a clipboard; we called it the swindle (kindle for the poor). When days were painful and I had no distraction my daughters said write a novel, a few pages a day. Those pages became The Rebirth of Henry Whittle, the next Random Attachment, the next September.
Now I blog, vlog and Twitter. I might be pushy, maybe I’ll oversell my book, annoy people, but for me Random Attachment is:
- my FY to Myelopathy
- my message to every teen who feels less than they are
- my affirmation to my family that I will get through dark times because I’m a mother, a wife, a reader, a writer.
Thank you for reading and to the lovely ASH @FTLOBooks for inviting me to guest blog.
It’s midweek and I’ve been yo-yoing between conquering social media and hiding under the quilt. Editing one book and trying to sell another. Wobbling about the coffee shop to whaling on the sofa. Oh and going to the loo like every fifteen minutes. Kids, Music, Marriage, Writing, Two Barking Dogs and Books are my life. Here’s my latest vlog, that I’ve edited badly but life is one long lesson https://www.youtube.com/watch?v=dXuDkpZeg84&t=91s
Today is my daughter’s birthday. She’s in Brugge with her boyfriend. My other daughter’s at uni, first year. My novels and blogs are mechanisms that keep them in my heart.
I was horribly unwell when I first started writing. What little energy I had I spent chatting to my four children. Kitty and I would get so excited about the weekly episode of #vampirediaries. We’d try to find films with a baddie that when faced with a dilemma would do the right thing like Damon. There are two films that were flops, but I loved them, purely because the male protagonist is beautifully, sexily evil; The Guest and No One Lives. Kitty and I would come up with scenarios for boys/girls of this ilk. This led us to a scenario where an assassin steals an identity and comes into contact with a damaged teen girl. This premise got forgotten for a while, mainly because I was so unwell. After my second operation, feeling regenerated our concept reignited and my other daughter Gerty came up with a title ‘The Rebirth of Henry Whittle.”
The following morning I wrote all day. Then the next and the next and so on. It was addictive. I was quite weak and housebound so the characters became totally real to me. I loved them. The girls critiqued, proof read, laughed at me a lot! I updated. We came up with a pen name Gertrude T Kitty (my girls’ nicknames and T because it sounded good). Then off went the first three chapters to literary agents. I struggled with that. I’m too old and too unwell to be anyone but myself or to sell myself. Luckily there was a lot of interest in the premise and requests for the full manuscript. I had lots of ‘we liked it but didn’t love it’ or it’s not one for us but that’s subjective’. I also had two offers of representation and an American publishing house that were considering it. I went with an agent I immediately felt comfortable with. Sadly it did not work out. But I learnt so much, from her and from the response of editors at publishing houses. I took a break then decided to go it alone. No having to compromise.
Readers for me are incredibly important. An unread book means I’m not an author. Yes I had the joy of writing it and sharing it with my daughters but it’s about identity. I’ve a degenerative spine condition; there is so much I can’t do but I can write. I can Twitter. I can blog/vlog and endeavour to connect my book with readers. Readers are magic because they sprinkle fairly dust and they’re with your characters; turning each page, making them real.
My book is an invitation to connect with new people, of all ages, all around the world. I won’t feel awkward or have nothing to say because we’ll have Random Attachment in common. Yes, lots of folk will tell me how wrong I’ve got it, but honestly it won’t upset me. I’m a newbie, a wildcard; I am going to make mistakes. I’m a different generation to my readership so I’ll be out of touch; sometimes say the wrong thing. I’m actually my teenage self again, trying to find a place to fit in, unsure of myself, a bit fragile at times.
My female protagonists are not perfect. Nobody is. We are all flawed and talented in some way but that’s what makes us special and unique. I want girls to read my books then look in the mirror and know they are beautiful. There’s always those that will make you feel less than you are. You might be unable to cut them from your life because you live with them. I think that’s why teen years can be the hardest because you’re trapped; at home or at school. I imagine that’s how a lot of battered wives feel. Unless you’re wealthy you can’t just walk away from a marriage.
My male protagonists will never follow a stereotype. I’ve never met the perfect, 6ft, chiseled cheekboned, 6 packed man. My husband is small and roundish; during our marriage he’s been a villain and a hero.
Today I woke up fresh and I showered. That alone caused me to crumble. I’ve had to lay still til Tramadol kicked in. I’m moving poorly, my body is sluggish and unresponsive. I’m weeing every 15 minutes. What’s lovely though is I have purpose. I’m eager to check things out on Twitter. Then Amazon to see if I’ve any further reviews (only have 4). I check KDP to see if I’ve sold a book. Then I read some blogs.
Having any illness can be lonely, even when you’re surrounded by those you love. Especially neurological diseases and mental illness because the unseen disabilities often have the least support. I yearn to be an author because I need to live a fulfilling life; it’s self help for someone who spends long periods at home. Life doesn’t stop for others when you’re disabled; friends work and socialise, your kids move out and rightly have lives of their own; so it’s up to me to make things work.
So when you read my book not only are you bringing my characters to life, you’re bringing me to life. Thank you for that. X
It’s been a difficult week. The news from my surgeon is that there is nothing surgically he can do, even though I increasingly become more disabled. I walk like a drunk baboon; it’s ugly. I’ve stopped pool exercising; it’s a blow because it helped combat my increasing weight and wasting muscle whilst lifting my spirits enormously…but it’s spiking my pain. There is no doubt in my mind that right now swimming vertically is off bounds.
The car is a blessing as I can’t walk far but it’s also a major contributor to my immobility and pain. Whatever is going on in my body, it does not like me sitting, or travelling. So I avoid it which is akin to being on house arrest. Many myelopathers have been like this for years but I’ve fortunately bounced back so well after each operation…but there is no outrunning your fate as Final Destination foretold.
I’ve made losses and gains; my writing is a life line. Being able to engage in an activity comfortably at home is incredibly lucky.
I have a beautiful family that love me and want the best for me. We’re not perfect, we have our Eastenders moments. My youngest is 17, in his last year at school, and if all goes well he’ll be at uni next year so it’ll be just my husband and I at home. So my ‘mum’ role has reduced considerably. Now, it’s about having the energy and health to live a life with my husband. For 40 years I’ve always thought of others before myself. Now I’m physically diminished and emotionally worn I haven’t the will or energy to contribute significantly to people’s lives other than my husband and kids.
I rarely phone friends. I hate the phone. Anyone who has suffered depression will understand; a main symptom is phone phobia. But I may pick up the phone if it rings. I will enjoy chatting once I get into it.
Random Attachment is medicinal. It’s important I don’t focus too much on my children. They need to feel unburdened and able to live their lives without thinking I’m going to throw a wobbly. I don’t need constant attention or reassurances I simply need to look after myself better.
Time for me is different. I don’t work. Often I have no sleep pattern. My routine is trying to see my son off to school. I call him long bean…I use to call him chicken or sausage but now I’m Vegan he’s a member of the Bean family…maddness…I know…it’s what becomes of you when you’re on house arrest. I’ve seen some shocking videos of barbaric animal welfare: a live rabbit being plucked for its fur for angora jumpers, never again will I wear angora. A cow that cried; real tears fell from its eyes as it was restrained. Sometimes it’s dwelling on the injustices in the world that lead to me feeling down. Anyway back to Long Bean. I think about his breakfast, even if I can only manage buttering a hot cross bun. It’s about spending time with him. I’ll tidy a little…sometimes I’ll tidy too much. I settle down at my computer and work on my novel…sometimes I’ll type too long. I attempt banter on social media with my older children, then I’ll twitter…sometimes I’m unsure about my responses to tweets and feel a bit anxious. If I’m well my husband and I go for coffee; I try to leave the house once a week. My spacial awareness is poor, I bump into people and things; I get flustered and very confused communicating which makes me nervy. Writing clears my head. When my fingers are slowly typing a life, a place, a feeling, it’s like I’m regenerated. In my head I’m doing the craziest stuff.
I’ve family who can’t reconcile my condition with my writing. They don’t realise the lengths you’ll go to when you are housebound, in my case 296 pages. I think they want me to give in, to throw in the towel, to stop living because that’s what they’ve done. I am fighting every day to live life. I have no room for negativity. People either get on board with me or not. I will keep writing, blogging, Twittering. I will never apologise for the time I spend writing.
It’s overwhelming how many books there are and how many book bloggers. I mean, you write a book, and you’re sort of amazed at yourself that you accomplished that but you are so far away from the end game, so far in fact, that if you’d known you probably would never have put yourself through writing a book. I’m being dramatic, I loved writing my book, writing is the absolute best.
Twittering is quite exhausting. I am easily fatigued. Hanging on in there takes a great deal of energy…but I’ve a book to promote. This is one of the things I tell myself when I wake. I equally love and hate my KDP sales bar chart. I love a sale, even though I might only be earning 25p; I fling open my door and shout it to the heavens. On days where there is no bar my mouth downturns and I feel sad for my little book, just waiting for someone to open its pages to free the words.
I’ve been contacting book bloggers, they have professional, beautiful sites. Even the humblest are witty, current, mini blogging stars. Whereas I’m an asteroid orbiting around their sun. I am going to have to be fully committed to social media to make my book stand out.
Be interesting says online advice. Well, you see the problem. Interesting is not a word I’ve ever associated with myself. I’m very ordinary, I do mundane, ordinary things like put a wash on, or sort out the spare socks…but upstairs…in my head…is a killer, a twisted mind thinking brutish thoughts.
Run giveaways. Yes! I sent my novel off to two deserving young adults. But I’m a mum, I know what kids are like. The last thing they’ll do is read. I’m gently coaxing them. I think they’d be hooked if they make it to chapter 5.
I did a bribery type promotion. Buy my book and all this is yours.
I think reviews are key. I’ve only got 4 reviews out of 52 sales, 7.7%. Not great. Gone are the days when all and sundry could review you. There are so many restrictions and bylaws to prevent the author hyping their own book. Reviews are now totally legit.
As with most things, it helps if you can throw money at it, advertise your book on Amazon and Goodreads, get it to pop up on people’s screens. I’m word of mouth, it will be a slow process. In the meantime I’m reading The Rebirth of Henry Whittle. It’s been a couple of months since I last gave it attention. My health is the determining factor of how long or short I work on it each day.
Unless you had a progressive degenerative condition it would be hard to imagine the determination and physical effort it takes to get rolling. If you knew you’d have the worst strain of flu with an evil migraine for the rest of your life you’d be traumatised. My husband and children see what a mess I am, how broken I am. So they want me to take things easy, put myself first, enjoy my writing, ask others to work around me. It is perhaps a selfish way to live…but living is the key word.
For all those struggling with mental health, you are never alone although it will feel like it, be vocal, to your family, friends, on line. People often say pull yourself together, be strong, think of all you have, think of your family but depression, anxiety, mental illness doesn’t work like that. The hopelessness is so bleak and weighty you don’t have the energy for positive thought and the feeling of wanting to sleep forever is the dominant emotion; the way out of your despair. For me, every time I’ve blogged, vlogged, Twittered, the weight of hopelessness eases. I’ll put the kettle on. Netflix follows. Sometimes when it’s particularly bad I go to bed, shut down, sleep it away.
Some think depression is self indulgent, is weak, but it’s often those that give most to others that struggle to give to themselves. For me, exhaustion is my trigger. Often I take on more than I can cope with. By the time I realise this it’s too late; everything bad thing that’s ever happened to me plays on my mind, like building blocks it intensifies till I’m drowning in self doubt and negativity. An hour later there’s not even a shadow of earlier depression; I’m one hundred percent my happy go lucky self.
We are all an enigma, trying to figure ourselves out, whilst others try to figure us out. At this stage of my life I simply want to be a kind person and have others be kind to me.
If you are on twitter, instagram of wordpress it would be lovely if you would give me a follow. If you have kindle unlimited you can download my book for free. I would love reviews, good, bad, shoutouts on social media, I welcome them all because they will make me a better writer. I will actively follow you back. If you love YA, romance, thrillers and you can afford to buy my book that would be amazing. 10% will go to myelopathy.support and 10% to YMCA West London.
Thank you for reading.
Twitter – @gertrudtkitty1
Instagram – gertrudet.kitty
Facebook – https://www.facebook.com/gertrudetkitty