St Patrick’s Day

floor puzzle

I’m first generation British; my dad was from Dublin, my mum Cork.  As a teen I spent Easters and summers across the sea.

My granddad was six feet; a sinewy, strong fisherman of few words.  When I was small I thought he was an Apache Indian with his red, weathered skin.  He called me ‘girl’.  I was totally in awe of how he mounted his bicycle in motion; I’d keep him in my sights till he cycled off the horizon. He was so old school dinner was eaten in silence. After, he’d sit by the fire, roll up a smoke and watch RTE news on a black and white telly the weight of a people carrier.

My nan was five feet; I could pick her up and spin her round.  She was a lady; softly spoken who I remember picking mushrooms with, rolling pastry, playing cards, catching the bus into Youghal to mill around the quaint shops while she had a purple rinse put in her grey hair. We had soda bread with homemade jam for breakfast,  barmbrack for lunch then fish from granddad’s haul; no variations. Don’t sit in a draft; you’ll get piles she’d say.  Thinking back now she must have been so lonely, my granddad out on the boat from the early hours, in a house surrounded by fields of wheat, her three daughters in London. It makes me want to wrap my children in my embrace and keep them so close.  They’re grown now; real Londoners but proud of their Irish heritage.

goat-island-ardoMy grandparents lived on a cliff, in a whitewashed, stone cottage, which was painted pink one Summer.  An idyllic location surrounded by blue flag beaches, bays and coves. The house had no toilet or running water.  We had to walk up the road, only 5 minutes, fill buckets from a well, then spill half the contents walking back. It was a two up, two down; no kitchen as such just a cooker that worked off a gas cylinder, a table and a large churn of well water.

Up the road were my best pals; a sister and brother from Dublin whose cousins resided in an adjacent bungalow.  We were literally The Famous Five, but a threesome. I can say without reservation the best of my childhood was spent there, condensed into a few weeks reprieve from the loneliest years of my life.

As a young adult Paddy’s day was huge. There’d be Irish bands and dancing at The Galty and National. I’d waltz, jive and swing to the Seige of Venice…and alcohol would be consumed in large quantities by young and old alike.  Although I rarely listen to Foster & Allen now or The Pogues I still support young Irish music talent: Flynn, JyellowL, Tebi Rex and Liquor by Rushes. But the tune I’m featuring today is one of my favourites by Dublin band Kodeline.




As an adult I drifted away from Ireland.  I fell in love, started a family, had a mortgage and worked full-time.  I wrote my nan but not often enough. I didn’t attend my grandparents’ funerals; finances were anxiously tight and avoiding debt was priority.  I have few regrets in my life but not seeing my nan before she passed is one.

Before I ever thought about writing I had favourite authors who I broke up with because I felt our relationship was going nowhere. That they were taking me for granted and churning out books following an overbaked recipe.  So having written two romantic thrillers set in London I decided to attempt a romantic suspense with a hint of the supernatural set in a quiet seaside town in rural Ireland.  It’s not a fanciful whim, it’s a labour of love, a stroll down memory lane, a tribute to my grandparents. I hope they, along with my dad and aunt are looking downward and feeling proud of how I’m trying to hold it together and forge a future for myself.

I want my third book SEPTEMBER to be my strongest to date; I strive to be a better writter with each novel. I’m hoping to attract a fan base that will grow with me. That’s why I like to celebrate occasions with book giveaways because I want my book out there, being read and if I’m lucky getting feedback via reviews, ratings, social media. I can take the bad, the ugly along  with the good. It’s the only way to grow.

I always had in the back of my mind retiring to the little cottage by the sea. I’d be in and out my friends’ house, an old dear, with a bottle of wine, gassing like the years hadn’t passed between us. Maybe waiting at Arrivals at Cork Airport for my children, perhaps grandchildren even.  We’d go rock pooling, swimming, shell collecting, walking for miles and miles. I can’t describe the rush I feel thinking about how one foot goes assuredly in front of another. How I miss my meandering thoughts as I’d walk from one place to another. You take the car hon, I’d say to my husband, I’m walking. I had no idea I had a serious condition that would hinder my mobility and quality of life considerably and steal away my dream.

wellHaving myelopathy and spinal cord damage is not only debilitating it’s erratic; making it hard to commit to anything. At book club I sit all perky one minute and the next I’m up and out, even before dessert, struggling for home before very real pain strikes. Like yesterday. When after a week at home, following my last physical crash, I dared go out for coffee. My problems started with trying to get out of the car, then up from the coffee table, to finding I’d lost power in my legs and my arms hadn’t the strength to open the door. Next was the swaying, my feet not lifting, tripping…pretty quickly pain ensued. A kind of pain that seems intolerable at times  These are the before and after media; a difference of a couple of hours.



Today I am again on house arrest, not daring to go out, scared to trigger another grim day of agony.  My life is: coffee shop, pain, housebound, repeat. When your spinal cord and surrounded nerves are damaged your body mimics MS, ME, stroke, paralysis, delaying diagnosis.

It’s a mind game, to be well one day, in pain the next, mobile one day, in a wheelchair the next. My youngest can’t remember when I was well.  It’s difficult for others to understand the fragility of my health. I’ve lost friends who thought I did’t make the effort, even extended family have thrown in my face I went on holiday. Hopefully I’ll go on holiday again, loaded with morphine, tramadol, oxycontin and wheelchair support, to a very hot country. I need sun on my bones, a swimming pool and wheelchair friendly terrain but what I want is the coarse sea air, to walk along the cliffs, to scramble down to Goat Island, to walk into town. It’s a dilemma; my heart may be in Ireland but my spine needs to be in Mali. Still I find some comfort in the novels of Irish authors, connecting with Ireland through characters and places.


There will always be the part of me that wants to wind back time, to cherish what I had, to hold on to it longer than I did. Often we don’t appreciate moments until they are memories…and even happy memories can make you sad.



I applied to renew my passport this week.  It’s much easier now with online application; my son took my photo and I uploaded it.  Before I’d pressed the HM Passport Office send button I’m screaming fake. That sour faced, elderly, wrinkly is not me! But she is. She’s just so altered. Long gone are beautiful bright eyes and clear, even skin.  The me now looks exhumed. I could put it down to poor lighting and a straight face but it’s the two anterior dissections causing an expanse of chicken skin where my toned neck once was. My sparkly eyes are watery and sunken. It’s hard to swallow how much I’ve changed in ten years.

airplane blur close up desk
Photo by Porapak Apichodilok on

2009. I didn’t know it then but I already exhibited major symptoms of myelopathy; the black ops of degenerative disease. It’s so stealthy and gradual I never saw it coming.  Who knows how long it was that tell-tale signs were there; the doctors think my early thirties.  But I had limitations from conception; fused discs, a too narrow spinal canal.

2010. Following multiple mis-diagnosis I end up in A&E, spend considerable time in hospital, ending up with my first operation.

2011. My second operation

2014. My third – possibly my last – one lives in hope.

2019. I’m not living the life I imagined but I am living. I wake up each morning to uncertainty. I don’t know how much pain I’ll be in, how mobile I’ll be or what I might be able to achieve. But I’ve adapted.  I rely on my strengths: cheerfulness – which used to be fairly annoying but this is the toned down version, tenacity – I refuse to break, I do crack though and my love of music and literature.  I’m that determined not to be beaten I’ve written a book and it’s not one wallowing in myelopathy or self-pity.  It’s pure fiction: a thriller with romance, crushes, stalking, abduction.

man wearing denim jacket singing on stage
Photo by Eric Esma on

I’m blogging and vlogging. I’m learning how to edit clips. I’m finding a little social media family. My mind is buzzing away trying to find free ways of promoting Random Attachment. I’m editing The Rebirth of Henry Whittle. I’m trying to create a life for myself.  I’m not going to get better.  I need to work around my disability, not give up.

Sometimes I think how the f**k am I going to get through today.  Other days I’m so caught up in my new life I think where the f**k did  the time go?

I think my life is going to consist of contrast and contradictions. Realistically I will struggle with my mobility, mental health and general sense of well-being.  But life is a gift and adventures are ahead if I can keep mine.

So even though I’m a fifty-one year old disabled woman, I’m going to listen to hiphop and write Young Adult romantic thrillers until I can no longer type…then I’ll just listen to hiphop.



Invisible Disability

At five am-ish stiffness woke me.  Each move to manoeuver out of bed was laboured and painful. In the loo I sort of dropped hard onto the seat; my joints lack flexibility. Most times I raise by putting my hands flat on the wall and pushing upward. Sometimes I shout for help, hoping my frustration infiltrates my sleeping carers.

From the top stair the ground looked a long way down, like when I absailed a near 90 degree incline. I travelled downward in my chair lift wishing a turbo boost would propel me into a parallel universe where my body worked. I made a cuppa noting my stiffness and pain easing and a sense of calm tucked around me.

Back up the stairs I went to wake Kitty.  She’s hard to distinguish; her top half engulfed by the quilt whilst her legs are entwined in it. A bittersweet pang of  love and protection rushes me.  She returns to uni today and already I feel a little less. It feels unnatural for me to be parted from my children. While I want them to storm Ben Nevis, backflip onto the Oscar’s stage to claim an award, turn alligators vegan, I want them to stay close…safe.

Breakfast.  Long gone are the days of a full English at Moons.  Everything I eat has unshiftable calories and the monster Pregabalin increases my appetite.  Carrying an extra stone and a half on my frail spine, I procranstinate daily what foods will satisfy but not fatten.  My diet is mainly vegan and as it’s #Veganuary Kitty and I shared a tin of spaghetti hoops on toast. She has that glow about her, the shininess emanating from your heart when you’re in love. She’s spending the weekend with her boyfriend and I don’t begrudge her a minute of it, I miss her but that’s how it should be. Gerty too is floating around, shiny.

Every so often I have a bad day.  Bad in the sense that I feel beat.  It’s never one thing that causes it more a recipe of woes.  Usually I’m so Doris Day I’m annoying.  I genuinely do find enjoyment in simple things like perusing M&S’s food shelves. I’ve planned a visit for Sunday to pick up a Planet Kitchen meal from their new Vegan range. Do you see? Planning to go to a shop is an event for me. As is going for coffee. Today I couldn’t be arsed, as my kids say.  Getting showered and dressed is energy draining; I don’t apologise for answering the door in my pyjamas.  The shortest journey to the high street spikes pain.  My neck bobbing up and down from our little car’s poor suspension; toing and froing with accelerating and braking.  Even with a neck brace leaving the house is an activity I seriously deliberate. Disability IS NOT just being in a wheelchair, blind, paralysed, being an amputee, it can be a collection of small issues that compounded make you housebound, scared to go out, an empty shell with no energy.

I resent how my condition controls me. How it’s always the deciding factor. How it determined I couldn’t join my daughters in Golders Green for a vegan lunch because I physically can’t get there without consequences. How I missed out seeing #Years&Years at the #O2.

Before Christmas I had a total crisis. If you’ve never had mental health issues this dark, barren vacuum of negativity that sucks you in and strips you of everything good, is hard to imagine. It had blasts from the past; issues I’ve not dealt with. Since forever I’ve strived to be emotionally strong; I’ve never wallowed in self pity…I should have…it’s normal to feel sorry for yourself, to cry, to scream, to fuck off everyone around you. Not me. I’ve smiled through every bad thing that’s ever happened to me; even when I knew that adage ‘things can only get better’ was a lie. I don’t blame anyone for who I am. I’m 99% amazing, but that undermining, damaging 1% clings to me like a tapeworm in my stomach. When my condition forced me to give up swalking that 1% swelled up inside me and I just didn’t know how to quelle it. Other than writing, swalking was my happy place.  My physical freedom, the mobility I had in the water, the smell of chlorine, the familiar faces, the daily power showers, my banana…I’m slowly losing everything.

So if I send you a ridiculous amount of links about my book, or my blog, or I Twitter excessively, or I Instagram a tin of chickpeas please don’t judge. I’m literally on house arrest, my only crime stealing a roll of flowery wallpaper when I needed one more strip to finish a wall and the price was exorbitant.

I still dream.  That somewhere inside me is a best seller.  That I can escape the walls of my lovely home by writing.  That everyday, after the stiffness and pain; after I’ve swallowed my pick & mix opiates, I step into a world where I’m running for my life, scrambling agily over a six foot fence, kicking the shit out of some messed up pyscho abducting girls.

I want to write for the rest of my life.



Us myelopathers live in a higgeldy piggeldy world. Nothing is straight forward, nothing is set in stone when it comes to our condition. It’s eight years ago this month that I had my first operation. When I think of the physical and mental battle I’ve had since then it’s amazing I’m still here never mind have written a book. I don’t say this lightly; my battle with myelopathy has been as exhausting mentally as it has physically.  I can’t tell you how often I’ve been on the edge of madness.  Connecting with others sufferers through has helped me understand my condition as well as supported my mental health.  Any long term illness with chronic pain can lead to depression, acting out of character, gambling, drinking, debt – blogging is a way of letting off steam whilst connecting with the myelopathy community.

My husband and children have been total rocks. They understand the condition well because they live it with me. They’ve seen me on my hands and knees trying to get from the sofa to the kitchen to put the kettle on because I want to do it for myself.  They’ve seen me bent over double, breathing like I’m in labour because the pain is so acute it takes my breath away.  I’ve spent the last seven years stumbling, swaying, knocking into, tripping over, falling onto a world that seems to be erratically spinning around me.

I’ve always been a glass half full person. When I couldn’t work, walk, sleep I wrote.  I poured all my pain, frustration and despair into blogging and writing Young Adult romantic thrillers.

Two weeks ago I self published Random Attachment. For me this is a huge thing.  A massive achievement.  Also it’s my ray of hope.  I won’t bore you with what I’ve lost, with what my condition has stripped me of because I don’t feel sorry for myself. But writing has enabled me to reinvent myself, to be Gertrude T Kitty, author. It’s taken the spotlight off my condition and has given me back some self esteem.

I don’t imagine my book will make multi million sales or I’ll have royalties into the thousands but whatever I have once Amazon take their cut I hope will support my writing and help YMCA West London, Centrepoint and  Up to now I have written for myself, now I am writing for others.  I’ve worked this last fortnight on Twittering, Facebooking, vlogging, anything to get my book promoted. My husband has been photocopying and cutting up little adverts for Random Attachment. I’ve been very unwell and immobile during this time so have only left the house once but I did put it up in a newsagent and coffee shop in Pinner.  I am up and feeling well today so have my photocopies and pins in my bag ready to pin it up whereever I legally can.  I’m asking you, if you could print out the advert and pin it up on a board where you work, or where your children have clubs.

My lovely bookclubbers have bought my book. Thank you for supporting me. I’m dreading feedback because I know how high our expectations are when we critique some of the greats in literature…remember I’m a minnow.

So here I am before Christmas, with a book that is all the more precious to me because my daughters were so instrumental in supporting me during writing and getting it out there.

Yesterday I filmed my first vlog about my book.  It took me five attempts because I was so waffly and repeatedly said ‘you know’, ‘so’, ‘erm’.   But here is the link to it and the link to my Young Adult (unsuitable for under 14’s) romantic, thriller.  I would love if you’d follow me on Twitter @gertrudetkitty. If you buy my book that would be wonderful…if you read it that would be even better and your critique would be the icing on the cake…oh and sharing it. It’s a lot, I know, because it’s hitting your purses, wallets and your time. God I hope the book’s not terrible after all this.



Thank you.








The BB’s Book Club


I met my husband when I was 19 and he was 27.  He was in a friendship group of boys and girls he’d gone to school with, or that lived on his estate.  I was a loner; fairly reserved, so I was socially out of my depth among the tight-knit, strong, sassy, independent women in the group.  They knew who they were, they were in established relationships, they were loosely friends with my husband’s x – it was awkward.  But I was in awe of their bond, their easy banter, their shared experiences.  Thirty years later I’m still a little envious of their remarkable rapport; they have this honest and pure sisterhood.  They’ve been there for each other through school, boyfriends, breakups, pregnancies, miscarriages, raising kids, losing family; they are totally solid.  I still sit on the peripheral of this dynamic but it’s a warm, accepting, fun place for me to  be.  It’s a bit like when you are given a honoury degree.

There was a baby shower a while back.  It would have been so easy not to go.  It was a long enough car journey for my unsteady neck to be bobbing up and down.  My alcohol intake was down to water with a hint of wine and my conversation was dried up.  But I pushed myself.  And I’m so glad because Jen, who’d recently lost her husband, who I barely know, had formed a book club.  They’d met once and she said come along.  Whilst coping with her loss, she was thinking of me and my limitations and I thought fantastic; I can do this.  To live with myelopathy you need to focus on what you can do and let go of what you can’t…otherwise you’ll drive yourself mad and into a wheelchair.

So I find myself part of this sisterhood which I am totally embracing.  I have not missed a book club night.  They are a Come Dine with Me/Through the Keyhole fusion.  I’ve had great food, lively conversation and I’m living.  I’ve been so pleased with myself reading the book and engaging with friends.  It’s been a struggle because I am deteriorating and I am an unreliable guest.  Two weeks ago I was in Charing Cross, with head pain that immobilised me, half distraught thinking what the f**k’s gone wrong now, half angry that ninety percent of the health professionals attending me are clueless about my condition.

Since coming home my priority has been making it to Book Club.  Not tidying, not cooking, not shopping, not pleasing anyone else, just managing my pain and my mobility and getting to my lovely friend Paula’s birthday who was hosting Book Club.  I’d spent the week doing the complete minimum only stretching and moving around the house.  Come Saturday morning I laid in bed, pain in every joint, my head a ton weight sitting on a brittle neck, my stiffness wretched.

Three things got me to book club:

  • celebrating Paula’s birthday who’d put on a scrumptious dinner and dessert,
  • ensuring I remain in the inner circle because it’s a very lonely, miserable existence if you don’t help yourself to socialise
  • MYELOPATHY.ORG – being in hospital was a painful reminder of how misguided so many doctors and neurologists are.

My situation is ridiculous.  There’s Paula, at work all week, shopping for food for twenty guests, spring cleaning, cooking and I’m struggling to participate.  It’s my perfect night and it’s touch and go whether I’ll be well enough.  But what’s been lovely is no one pushes me for answers about my condition, I’m just accepted and treated gently.  I feel so lucky to have these ladies in my life.

But the icing on the cake is their enthusiasm and willingness to support our charity.   When I was in hospital I was so demoralised by the complete lack of interest neurologists have in myelopathy.  I thought, I’m doing something about this NOW!  When I say ‘I’ that means someone else because I can’t raise money for Myelopathy.Org without being helped myself.  So I asked the girls to donate a pound each time we meet for Book Club and Paula was so gracious about me hijacking her birthday to plug and collect for Myelopathy.  Particularly as I’m already the most needy member.  And I feel guilty that my participation is like hit and run.  I’m in there with the food and the book review and then I’m off.


But seriously when my husband came for me at about eight thirty my head was pounding and the car journey made me sick.  I was up till 2.30 am with severe body pain but I kept thinking this will pass and then I’ll count the money, blog and get my husband to deposit the funds raised during the week.  I’m still in pain, I’m doing breathing exercises right now like I’m in labour, I’ve taken Oxy and Tramadol but it was worth it; I had a great time last night.  I know I was fuzzy headed toward the end, I had to keep moving around because pain was creeping in and my balance was starting to waiver and my phone confused me.  It affected the quality of my goodbyes.  I wanted to hug and say thank you to each book clubber.  They probably don’t realise what a positive impact they have on my life…but I am so grateful – thank you ladies. xxxx.  Also you gave more than a £1.

On our Facebook page we often chat about how our disability comes into question.  That how we look doesn’t reflect our inner pain; which is true of many debilitating conditions like arthritis, autoimmune disease, fibromyalgia. Then there’s how our mobility alters so precariously; it’s no secret that I could be in bed, rigid with pain one day and in Nero’s the next.  Also age is used against us.  For some reason people think the younger we are, the better placed we are to cope.  Actually it means our spines have given up way too early and if we don’t conserve what we’re left with we’re in trouble.

There is so much heartbreak and agony in the world; it’s hard to know who to help and how; often we don’t have the time or the resources.  Usually I donate to Crisis at Christmas.  This year I want to donate something to homeless teens/young adults.  I can’t fix the world but if you help one person then that’s brilliant.  When those around me support Myelopathy.Org they are supporting me.  I find coping with day to day life challenging. It’s very hard to fight your corner when you’re in pain and exhausted and so we rely on our friends to accept us and charities to be our voice.

Thank you ladies you raised £33.10 for MYELOPATHY.ORG.  Thank you Paula for your patience, I’m getting disruptive in my old age, but it’s because you’re my friend that I had the confidence to butt in.







Head Case


I’ve been adrift recently.  Absent.  Not myself at all.  I’m in a relationship with a body that won’t compromise…it’s unreliable, unstable, unable to commit.

Of late my symptoms have been erratic.  My pain isn’t unbearable, it’s just constant and it’s spiking irregularly.  I don’t rush for painrelief.  I give it an opportunity to pass but it doesn’t and ten hours later I give in because it’s totally drained me.

My day, every day, starts with pain.  This isn’t a moan it’s just the way it is.   Generally waking up is a positive thing; ask anyone who’s dead.  It’s how my body feels when I wake.  It’s not rested and floppy it’s tightly rigid and the actual bones hurt inside and between the joints.  Every move is painful, it’s a deep hurting that can’t be rubbed better.  I get up slowly, in stages; sitting on the edge of the bed thinking can I do this?  Do I want to? I get up because I have two boys that I like to wave off at the door each morning.  My youngest son is in his last year at school and I love ruffling his hair and calling him stringbean.  My eldest son is always awake and showered before I stir;  it’s his first job and the hours are long and it’s stressful and so I support him by making his lunch.  I don’t have much in common with the boys.  I don’t like sport or the gym but it’s little things like we laugh at dad (husband) having a ‘melt’.  And I call the boys ‘G’. ‘ Yo G, that’s sick G, that’s bare funny G.  It just makes me laugh the slang that creeps into their vocabularly.   Some days my head pain makes it hard for me to handle their bantar or hear their rap and grime tunes and it’s sad the barrier myelopathy creates between me and those I love because I’m not present half the time…physically or mentally.

More and more I wander around the house confused…my brain leading me on a merry dance…did I make tea…did I put sugar in.  So many questions and then I forget to drink the tea. I live in a whirl of confusion; it’s exhausting.  So many things have gone wrong for me lately, my actions are wierd, my memory unreliable. I’ve started to lose confidence….I don’t trust myself with money or banking.  I go to the shop for an onion and come home with an orange?

I’ve fallen three or four times…at night trying to get up independently to go to the loo.   I know how it happens; it takes me so long to get up,  I fall asleep midway and then fall out of bed or off the bed.

Every so often I have a bad day.  Bad in the sense that I feel beat.  It’s never one thing that causes my downturn more a receipe of woes.  Usually I’m so Doris Day I’m annoying.  I genuinely do find enjoyment out of simple things like going to M&S food store or going for coffee.  Then some days I can’t be arsed, as my kids like to say.  Getting showered and dressed is so energy draining.  Ten minutes travelling and pain breaks through my medication. My neck bobbing up and down from our little car’s poor suspension.  My neck toing and froing with accelerating and braking.  Even with my neck brace on it’s guaranteed to set my symptoms off.

I have days when it’s like I’m in remission and so I fling myself at life knowing that it’s a mirage; one blink and it’s gone.

Last Saturday I partied.  It must be strange for people to grasp that one minute I’m walking with my stick and then I’m dancing; carefully and conservatively mostly holding a chair.  I want to grab the dj’s microphone and shout I’ve got spinal cord damage, it affects my central nervous system, yeah I’m dancing but I’m dancing badly! You should have seen me before I had three operations arsehole!  Anyway three dances later my head is like it’s being squeezed by the Hulk and I can’t lift a foot and I’ve only drunk one watered down wine and two bottes of still water all night.  But I had a slow release oxy codone before I went out, two tramadol whilst out then two tramadol every four hours for the next 24 hours.  I was up all night, the pain too much to lie down.  My skin was hot and horribly itchy especially my ears and scalp.  I kept waking up unable to breathe for a terrifying second of two. Wrecked I spent the next day in and out of sleep the pain too horrible to lift my head off the pillow…but I will do it all over again at the next party…because otherwise I’m giving up and not participating in life.  I love dancing…I’m just so bad at it now.  With myeopathy it’s not a question of what you can and can’t do it’s what you’re prepared to do…I will dance therefore I will suffer and it will be self inflicted.

My life is not doom and gloom because I appreciate how privaliged I am to live in a country that is peaceful, to have water and electricity and supermarkets with the shelves filled.  I love my family, my home, my garden, my dogs but sometimes I am overwhelmingly unhappy.  I have no control over how low I feel or when it strikes.  I can’t watch the news.  Every life lost, people going to food banks, gang culture, plastic killing sealife, a gay man beat up outside a club by a cricketer, David Beckham pleading not guilty to speeding and getting off,  strikes a cord.  It’s like I’m living everyone else’s drama as well as my own.  I don’t understand the world I live in anymore and then it feels all too much.

I’ve lived with myelopathy for eight years; I’ve got through three operations all with a smile.  Operations I can do; they have a start and an end, Myelopathy is infinite and the relisation that my life is on a loop overwhelms me.  I will always live with pain, myelopathy will always curtail my activities, it’s a degenerative disease so my symptoms will only worsen.

I wanted to go Ireland; want is an insignificant word…I really, really, really wanted to  go…I had every intention of going.  My family were not so optimistic.  They see how disabled I am.   How my legs are so heavy I walk to the toilet like a Hammer House of Horror zombie.  They’ve picked me up off the floor, seen me pop pills and drink tea through a straw because I can’t move my head the merest fraction.  They felt my mum’s seaside location was too challenging; I’d have to sleep on the sofa because I can’t do stairs, it’s not wheelchair friendly, it can’t guarantee a hot climate, I’d mainly be housebound and my symptoms, like arthritis, are excertabed by damp, cold, wind and fairy dust! But I had this vision of walking to Whiting Bay.  Listening to the tide roll in.  Smelling seaweed…and I couldn’t let it go…thinking about it got me down.  I have this vision of retiring to the little house on the clifftop…it’s a dream I refuse to give up.

When you’re known to your family and friends as the glass half full and yolo it’s hard to admit that you are seriously struggling with negative energy.  I smile less these days.  I haven’t blogged in months because I don’t want to drag anyone under the bus with me.  I feel bitter that I was so near to getting my book published but my physical health and my mental agility has slowed me down. Not going to Ireland was the last straw.  I felt trapped in my home, every unwashed plate left at the sink I wanted to smash, every hour that went by without an offer of tea I wanted to scream.  I felt like I was losing it and that myelopathy was sucking the life right out of me.  I wanted to go to Heathrow and get the first plane anywhere but even if I got a cab there I wouldn’t be able to get out of it independently!   I won’t explain how dark my thoughts were, dark enough that they scared me and so I talked to my doctor.

My doctor recognised that it was a culmination of things getting me down: my mental agility, my weight, pain, how restrictive my smptoms make things, how housebound I’ve become.  She reffered me to a memory clinic which I have since attended and already I feel positive that I’m not going to completely lose the plot.

My husband booked a weeks holiday in Turkey.  We are on a very tight budget, this is a luxury we had not prepared for, we haven’t been on holiday in four years. It wasn’t Ireland but it was the next best thing; a small b&b with a pool, very hot weather and a complete break from everything.  It was for seven days and honestly, I think I needed a month, but coming home it was lovely to see my children.   The house was tidy, Caitlan cooked dinner, we caught up and I felt happy that I had my own tales to recount…usually I listen.

I helped Caitlan pack for her first year at uni. I watched my husband drive my heart, my inspiration, my best friend away but I know Caitlan’s adventures will have me laughing all the way to christmas.  She’d only been in her new kitchen an hour when the fridge door came off in her hands.

I went to bookclub.  Great food, great company.  My watery wine.  A new book selected.  A new date to look forward to.

I’m not saying my melancoly is cured.   My sadness goes too deep for that.  Maybe it’s the start of depression, maybe I’ll suffer long term.  I have been referred for counciling.  I am seeing someone next week about my mental health.  That’s something I embrace because I don’t want to drown in my own misery .  I want to be happy and sing songy and get on my husband’s nerves with my chiperness.  I want to dance with myself in the kitchen.  I want me to be me.