#family

St Patrick’s Day

Posted on by Gertrude T Kitty

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.

writers

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.

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Invisible Disability

Posted on by Gertrude T Kitty

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.

 

 

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Slump

Posted on by Gertrude T Kitty

Sometimes friends ask you – if you were a dog, what dog would you be?  I like the idea of being a pug.  Everyone loves pugs.   My myelopathy body has numerous folds now so there is a resemblance.

But I’m a husky.  I’m strapped into a harness pulling Scott and his bloody kit across the Antarctic.

I’m in a slump.  No matter how positive I endeavour to be I can’t shake it.  It’s like I punish myself because six years of having myelopathy you’d think I’d know my limitations.  Yet I keep going around in a circle, chasing my tail the way disturbed dogs do.

I get these short periods of time, when I’m not in pain, I’m not dizzy, I’m not so rigid, I’m sleeping well and I think, yeah, I’m feeling pretty good.  I quietly, slowly reintroduce some of my old routines.  It always starts with a wash, I love the smell of clean clothes as you pull them from the drum.  I lower the clothes line so it’s at shoulder height.   It’s so rewarding folding dry, fresh clothes.  Next comes the dinner.  Pre myelopathy I was never a microwave/takeaway/chicken nugget mum.  I’m not skilled in the kitchen but I do the basics well.  It’s not easy preparing  food when you have poor grip and little oomph but I put the radio on and putting a dinner in front of my kids is so rewarding.  Already the spasms are returning, the head pain is increasing, but I haven’t done the taking the bus independently to the shops yet.  I wait for the right moment, for when my husband has gone golf, so that he can’t list the thirteen reasons why not to leave the house alone. I potter in the charity shops, peruse Aldi, I can’t actually buy anything over featherweight because I can’t carry it, so I splurge in the bakers for cakes for the kids.  Ok they’re sixteen and seventeen but a Belgium bun still puts a smile on their faces.  On the bus back I’m breathing hard, shit my head hurts, I want to cry by the time I get off the bus and as soon as I put the key in the door I’m nearly sprinting to the medicine cupboard.  I’m alone, no one to see what a fool I’ve been, what I’ve needlessly put myself through – Mission Impossible – The Bakery.  No one home to make me a cup of tea.  My hands shake trying to get the tea caddy top off, it takes two hands to lift the kettle.  The pain is intolerable, I mean I just want to shoot myself.  I sometimes feel, just fleetingly, that I don’t want to do this anymore, I don’t want to suffer but the pain passes, sometimes in an hour of taking pain relief, sometimes in a week.   What knocks the wind out of me though is that reinforcement that I’m pretty f**ked.  Nothing is going to make me undisabled.  I will always be on hard drugs.

It’s never much good feeling sorry for yourself but it’s not healthy  thinking it’s mind over matter.  If your spinal cord is damaged, it stays damaged.  If you have a degenerative or progressive disease you are going to get worse. I won’t say you can make it easy on yourself because that’s never going to happen but you can make it harder on yourself.

My last point is this,  I think I’ve always been disabled aware.  I see people struggling like the oldies and I’d hold the door, help. them on the bus, things that the normal ok person does to be helpful and considerate.  I’ve never been very mental health aware.  I could say I don’t know anyone with mental health issues but I probably do, they’re just bottling it all up.  I think honestly I have mental health issues.  I feel so low sometimes that it’s like I’m fathoms under the sea, so unreachable that I feel totally disconnected from the world.  I cut myself off from Facebook, from writing and sometimes hours pass, days go slowly by, I’m staring at the tv but I don’t connect with it, I sleep a lot and it’s like I’ve disappeared.

Today I’m back.

 

 

Hermit

Posted on by Gertrude T Kitty

I think I need to join a self help group; Hermits Anonymous.  But that might mean leaving the house.  Let’s pretend that I’m there now,  it’s my first time and I’m sitting in a circle with you.   We are in a cold, dusty church hall.

I really, really do not want to be here.  I don’t know what to say to you.  Well I wouldn’t would I…I don’t go out.  At  Alcoholics Anonymous there would be bleak, hilarious touching stories – being a hermit is quite boring really but as I’m here now I may as well unload.

My name is Alison, I have cervical myelopathy and I’m a hermit.

I’ve been a hermit on and off now for about six years but since Christmas it’s got progressively worse.  I don’t Facebook, or blog, or write, or call my mother in law. Periodically something happens to me.  I alter in some way.  It’s not gamma radiation or kryptonite but it is something insiduous and weakening and I don’t know whether my physical deterioration effects my mind or whether a bout of depression effects me physically.

I think with any kind of disability or mental illness it’s easy to withdraw from life.  It’s not something I did intentionally it sort of crept up on me.  I probably need to tell you what sparked my addiction to my home but I know it’s going to sound like one long moan so I’m going to skip it and tell you a fairytale instead.

Once upon a time there lived a mother or four who was so busy working as a teacher, raising her family and loving her husband that she didn’t realise she was ill.  Her illness was so stealthy and so unpredictable that years went by but the longer her disease went undetected the more irrepairable damage was done.  The mother got slower and slower and tireder and tireder until one day she collapsed in a heap.  The End.

My time in hospital was the bleakest, lonliest, most desperate time of my life.  I was in so much pain and on a cocktail of drugs that seriously I wanted someone to shoot me and put me out of my misery.  It was here that hermitting got a hold on me.

Leaving hospital was the second step toward hermitting. I was wheelchair bound with an operation scheduled that I didn’t really grasp. I was in immense pain.  It was crushing – it’s in your head, between your shoulder blades, down your arms, in your toes.  I had pins and needles in a body that was a fizzing bath bomb.  It was like a constant low voltage taser.  The two months before my op I was so debilitated I sat slouched in an archair;   I physically couldn’t leave the house.  It was the sort of pain that you can’t snap out of because it was constant and deep.  I deliberated over my bag of drugs amongst which I had a large supply of morphine.  Prior to myelopathy I was rarely ill.  I only took paracetemol a handful of times. I think I had anitbiotics twice.  Taking the drugs seemed like giving in. Should I take them all the time? Should I only take them when I’m in actual pain?  I didn’t know.  Family and friends said only take them when you’re desperate.  I was desperate.  I was bordering suicidal I was so knocked off my feet.  Be strong, hot water bottles, vitamins, pilates!  All those snips of advice might be helpful for someone who has strained a muscle or tweeked something but not for someone who has spinal cord damage.

I have my operation.  When I come around I’m in pain but it’s normal pain, pain that you expect when your neck is opened up.  Two hours later I’m sitting up, having a cuppa and the next day I walk from Charing Cross hospital to Hammersmith tube and take the train home.  So you see I’m not a wimp or a fusser; I’m a can do woman.

Then things get a bit awkward.  No one has heard of CSM.  It sounded like something I’d invented.  Also because I had an operation people presumed I was fixed.  Other than Sharon and Paula when friends saw me out and about ‘you look so well’ they said but what they’re really thinking is ‘there’s nothing wrong with her’.  But they don’t see me the next day when I can’t raise my arms to wash my hair, I can’t put my shoes on, I’m swaying around the house like I’m on a catamaran, I’m popping pills, my husband pulling me off the loo, I’m in bed and can’t raise my head off the pillow.

Imagine you are running a marathon and the last mile is killing you.  Your limbs feel heavy, they’re burning from over exertion, you’re uncoordinated, your vision is blurring, it’s hard to breath…well that’s what moving around is like for me. It’s so challenging it’s easier to stay put.

Just because I have a smile on my face and a chirpy voice doesn’t mean I’m not disabled and being disabled doesn’t mean you have a leg and one eye missing.  Myelopathy operates under the radar.  You can’t see the head pain that has a stronghold on the brain or the muscles tightly twisting one day and loosy goosy the next.

After my second operation people begin to get the idea. Me too.

I have a third op eighteen months later.  I do not want a forth.  Ever. I now can’t raise my arms or bend without severe headrush, dizziness, pain.  I can’t scramble eggs my wrists are so weak.  Everything flies out of my hands, my grasp is poor.  I’m slower and more unstable on my feet.  I get confused easily.  I can’t sit for long.  I can’t stand for long. I can’t go far in the car, the poor suspension gives me nodding dog pain…but if I condition my hair, paint my nails, put some nice clothes on I look ok.  So people make unthoughtful comments, they make judgements – why was she using a wheelchair last week but not today – they think its mind over matter.  This all contributes to being a hermit.

To type this blog I’ve had to take 2 x paracemol, 2 x ibruprophen and 2 x tramadol in addition to my regular perscription of 600mg pregabalin and 75mg amitriptyline.  My fingers hurt, they keep involuntarily flicking onto the wrong keys and I have to repeatedly backspace, it’s very frustrating.

I haven’t really facebooked, emailed, written, left my home much since October. I find Winter a difficult season. Getting dressed is hard work; so many layers; it’s so much easier staying in my pjs.  So me showering and dressing is soldiering on.    Me going for a coffee is soldiering on.  I manage my pain by only doing what is in my comfort zone that day.  When I’m tired or struggling I go to bed no matter what time of day.  I used to feel guilty; a fraud when I felt well.  Not now. I’m determined to take care of myself and enjoy life even when my life is within the walls of my home.  I’ve been so poorly at times that I’ve conquered justifying my illness and explaining the hundred reasons why my husband is my full time carer.  I don’t care that so and so had a back operation and now they’re playing squash – good for them or that so and so is in terrible pain with siatica but they still go bingo – that’s lovely but it’s not a competition on who copes best with pain, or who suffers more.  I don’t need confirmation from others that I’m a trooper.  I know I am but who cares anyway, I just want to laugh and be happy.  Yesterday for instance I’d stiffened to the point of snapping so my husband drives me to the local leisure centre to swalk and with my float attached I stretched and flexed in the water in a way I can’t do on land because of poor balance. I had a lovely steam and hot shower and moisturised my skin even though my heavy arms burnt with pain and it was exhausting.  I couldn’t dry my hair though because I couldn’t hold the weight of the dryer or raise my arms. Afterward we went for coffee and a pastry in Cafe Rouge, sitting by the window, the warm sun on our faces. Marks’ food hall is next door.  I love looking in Marks.  It’s an outing.  When we arrived home I couldn’t get out of the car, it took my husband a good few attempts to get me out.  I couldn’t straighten, I was bent over.  My head was compressed like corned beef.  My daughter unpacked the shopping and put it away whilst passing me ingredients to make sandwiches.  I didn’t have a sarnie because my digestion now is crap and my weight continues to increase so I only have cereal for breakfast and one small healthy meal at dinner time.  That evening we watched Line of Duty.   I really, really enjoyed my day.  I was able to chat to my kids, have a laugh, hear their gossip, tease my husband.  Read a little. It was lovely; even though I needed painkillers I felt sprightly.

I’ve learnt not to dig myself a hole because I want people to think I’m brave and not wallowing in my drama.  Tomorrow maybe I’ll have a bad day, maybe I won’t cope, maybe my husband will have to cook or the kids will have to sort themselves out.  I don’t force myself anymore.  Taking a back seat has been the hardest thing but life is so much more doable now that I’ve let go.

This is why there’s been a long gap between this and my last blog.  I can’t be Miss upbeat twenty four seven, sometimes I feel overwhelmed by my recurring symptoms.  I struggle with the inconsistency of them not that I want to feel bad all the time, it’s just hard yo-yo-ing between well and unwell.  My condition can change hour by hour and that affects my confidence to go out.  I continually make arrangements only to back out at the last minute.  I have to be spontaneous and go hell for leather when I feel well.  Like when I saw LaLaLand on a Monday and Split on a Thursday.

The real point of writing today’s blog is that I’ve returned to the brilliant https://www.facebook.com/groups/myelopathy.support  after a long absence. I’ve read through the blogs and see fellow members experiencing the ‘work through the pain’ bullshit that I had to deal with.  Keeping mobile is essential but to live with myelopathy you need to be realistic and accept limitations and you need a supportive family who are informed.

In an ideal world anyone diagnosed with myelopathy should be referred to councelling. because it’s such a mind game. An informed professional is needed who can talk to us and our family about the condition, what to expect long term and how it might effect our life. Husbands, wives, children, friends need to recognise that we’re an endangered specie.  We need patience and understanding to help us conserve our energy and effort so that we have quality time.  Often I’ve felt like I have a personality disorder, often I’ve felt dangerously low, all the time I yearn for the old me.  The me that was going to be an active grandma in the future, the wife that was going to travel around the world with her husband, making love in the sea.  Instead I’m a wife who has no feeling below the waist; that’s quite a challenge for a relationship. My identity has been torn up and I’ve spent the last years reinventing myself.

I’m two and a half years now without surgical intervention.   I haven’t lapsed, I have not ironed or carried the washing basket.  I have not hoovered or mopped the floors. My symptoms are returning though but I am being strong and determined and getting on with things but I no longer take risks with my health.  I no longer pretend to be superwoman.  I’m simply a woman.

Thirty Years A Slave

Posted on by Gertrude T Kitty

It’s my wedding annivesary this month.

I don’t think my husband knows that.   We’ve never celebrated it.  Our lives were so busy with work and children and enjoying the moment that it got put to the back of the drawer.

So much has changed since I first fell ill with CSM…but most of all my husband.  These are not criticisms they’re fact.

My husband expected

  • a dinner on the table after work, something involving meat and veg
  • the house to be tidy
  • the children to be settled

If I typed a list of what I did and what he did I think I’d probably divorce him…so we won’t go there.  Actually although I was a full-time working mother I was happy to meet his expectations.  My nature is to care.

We ticked along nicely.  Sometimes we had spats and fallings out.  Sometimes I wanted to scream in his face that I was bloody exhausted from work and juggling kids and housework and cooking.  Other times I felt this immense pride that I was a super being. I’d never been good at anything – I was so mediocre I blended into walls, doors, landscapes, skyline; I barely existed till I met my husband.  His high expectations elevated me; I was an epic wife and mother.  That’s not a brag – it’s true.

Without noticing myelopathy  gradually and silently drained my power, sapping my life force until I was empty…until I crumbled.

I remember the morning my husband drove me to A&E.  it was still dark.  About 4am. We had to leave our eldest, 16, in charge of our other three.  For me to relinquish my responsibility, to beg to go to A&E, meant I was in trouble.

I had no idea that my trip to A&E for some hard drugs would reveal that I was slowly becoming paralysed.

I was in hospital for seven weeks.  Whilst I battled pain and disability my family began to disintegrate.  The tight ship that I’d nurtured began to sink.  Call after call.  Questions. Hot air. Mini breakdowns. Slaming of doors.  It was all happening. The Murphy’s in crisis.  Blame was attributed to everyone and everything.  Each Murphy had an opinion. Fingers were pointed, hurtful words were spoken and that was just day one.

I had calls from my husband. He’s never coped well with vagueness or ambiguity.  How many items should he put in the washing machine – 10? No honey.  Ten socks would be too little and ten towels too heavy.  Just half fill it with anything.

My thirteen year old son calls.  He’s been prescribed tablets for his acne.  He needs to know how to swallow a tablet!  I talk him through it, together the tablet is downed.

My sixteen year old daughter calls.  She’s slammed the front door and leaves a shouting father behind.  Mum he’s cracking up.  We’ve no clean clothes, no towels, the smoke alarms persistently bleeps whilst dad burns, its chips every night and accusations that if we’d done more to help you wouldn’t be so ill.  She says that’s something coming from a husband who can’t find his own socks and boxers without his wife.

My husband was not a new man; there were no moisturisers on his bathroom shelf – a man bag? Please! But what I love about him is he rose to the challenge.  There is nothing my husband can’t achieve.    As cups and coffee jars fell from my grasp,  his broom and pan were not far behind.  As I swayed from room to room, tripping up, slipping up, banging into everything, he pulled up mats and moved furniture.  When my hands were too feeble to stir and too painful to mix, he picked up the wooden spoon.  I remember when my body gave out and I was confined to my bed awaiting another operation. I was too weak to hold a book so he unbound the pages of a best seller and attached a few at a time to a piece of cardboard that rested on my chest – we called it a Swindle.  I think that period was the worst time in my life.  I couldn’t climb stairs so occupational therapy delivered a hospital bed which was in the front room, next to the window.  I would watch the birds and the squirrels.  It’s so silly really but I named them.  My husband made ledges in the different trees and put bird food out to encourage activity. He conquered…the washing machine,  the oven, the Hoover, the iron, even sewing. Following my third operation I had reduced movement in my neck – I could not look down, food kept falling off my fork, so he made a base raising my plate to mouth level.  It was nice enough that I could bring it to the coffee shop or to a restaurant.

Marriage is hard.  Family is even harder especially when you have adult children living in the family home.  I don’t want to give the impression that it’s all Mary Poppins in our house.  It certainly is not.  My husband is my carer.  We spend too much time together.  It’s hard for me never to be alone.  I’m quiet, introverted, happy with my own company.  It’s hard for him not working. My husband is larger than life, opinionated, social.  My disability has been harsh on both of us.  There is no shielding loved ones from this disease because it is so erratic, so insidious, so damaging.

Like a kangaroo I bounce from one physical state to another.  I’ve spent the last two days in bed with a pain in my head and neck the demobilises me. My mood dips, rises, simmers. Today  I’m upbeat but I’m losing my balance, my head is cloudy, my grip has gone.  I feel very confused.

Today my husband got up with the kids, he drove them to school.  He popped into Aldi on way back for groceries.  He’s walking the dogs now.  On his return he’ll make soup and a sarnie. After he’ll tidy and hoover.  Then he’ll think about dinner.

I know without doubt my husband has got my back.  He’s researched myelopathy so thoroughly he could operate if he had to. We’ve always been a team.

On Facebook, on the myelopathy support group I feel sad reading comments about family members being unsupportive. I can’t imagine how gutted that must make you feel.  I don’t know how I’d cope if my husband wasn’t hovering around, checking on me, making our home cosy and looking after the kids.  He’s simply a different man.  I fell in love with the old him…but it’s the new him that I continue to love.