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.

 

 

https://gertrudetkitty.com/

http://www.instagram.com/gertrudet.kitty

@gertrudetkitty

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MY RANDOM VLOG

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 http://www.myelopathy.org/support.html 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 http://www.myelopathy.org/  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 Cube

It occurred to me yesterday that living with myelopathy is like a compendium of games.

The day usually starts with The Cube.  How many attempts will it take to get the lid off the coffee jar?  The game requires patience and concentration.  I focus on keeping my grip tight.  I need the audience (my family) to be quiet; a casual comment like good morning and coffee granules are crunched underfoot for days.  Oh dear I have to use my ‘simplify’; “Kitty!  Would you fill the milk jug for me.”  Did I put sweetener in? I did.  Did I? I ‘ve done years of trial runs but still the game challenges me. People may presume that being at home my day drags but no.  Half an hour goes by and I’ve yet to get the coffee lid back on the jar.  I’m so busy my coffee is cold.  God I love it when someone makes me a cuppa.

Much of the day is spent playing Cluedo.  Is my iPod upstairs in the bedroom or in the kitchen with Caitlan?   Is my phone in the front room with Paddy?   My tablets are definately in the bedroom with my husband.  My book? That’s in the garden.  I get my cane, take a step down onto the patio, holding the grab rail and then shuffle. My right leg doesn’t lift without considerable effort and I can’t afford to fall over again.  Whoosh  it’s the afternoon and I’ve done nothing but boy do I feel tired.

Scaletrix.  I need the loo.  In the chair lift I settle.  Finger on the up button.  Staying on the track isn’t the problem, it’s maintaining finger pressure otherwise I stop prematurely and beep.  It’s not as fast a ride as I’d like and the ride down is a bit hairy – it’s the vertigo that does it.

Twister is the most physical.  I can’t bend. Crouching down to the fridge I get on all fours to rise.  Well that worked yesterday.  John! Patrick! Caitlan! Help! I can’t get up. Rolling off the sofa I’m on all fours again, a hand on the coffee table to leverage myself up – oops – here I go balancing precariously, doing a reverse mexican wave.  I put a hand on the door to steady me.  Concentrate. Slowly…put…one leg…in front of the other.  Ahh.  Ahh. Ahh. Bugger that spasm was bad.  Why is my right leg a foot behind me.  It’s so heavy. It’s not moving.  I think I’ll have to sit the next round out.  Maybe a lay down.  Gosh it’s tea time.

I think Articulate is the most frustrating.  Verbalising is increasingly challenging, the words I want are rarely in reach.  I confuse names.  My word selection is dysfunctional I say wank instead of wink, tart instead of smart.  (My friends really give me dirty looks lately.)  I stop midway in sentences because I lose the thread of what I’m saying.  I need…I need…oh what’s it called?  It’s red….it’s jelly…not jam…it goes with…with…oh what’s this meat called?  Turkey! Yes.  It goes with turkey. Cranberry sauce shouts Paddy – yes Paddy that’s it Cranberry sauce. Nope we don’t have any. F**k!  It’s funny how that particular word rolls off the tongue more easily every day.  I say it quite eloquently I think.

The physical toll myelopathy takes is difficult to cope with but the mental strain and stress are as debilitating.  Holding a conversation, banking, shopping; these are all challenging.  I like to think I’m a generous person.  Twice I’ve walked away from the cash point leaving my money in the machine for the next person to spend.  At the checkout I need to focus – on my pin number – remembering to remove the card and put it away safely….whilst the cashiers are chatting to each other, laughing.  I feel like screaming – Please! Just for one minute concentrate on me – the customer – who is obviously a bit dithery and in need of some support.  Oi and you behind me Mister – the more you tut the slower I’ll go!

The last  game I play?

Come on lot’s of you have played it too.

Hope your surgeon has a steady hand – buzzzzzzzzzz.

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Hermit

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.