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.

 

 

 

 

 

 

 

Uncool

sofamum
Sofa Mum

Something  brilliant happened yesterday.   As usual I was tuned  into Kiss.  I had a little sway whilst listening to Drake; singing along to Too Good whilst looking at my husband who was giving me evils back.  Every so often when my husband wasn’t looking I’d hold onto the kitchen sink and move a few steps.  When I heard Major Laser’s Lean On  I pressed KISS’s number.  It rang…it wasn’t engaged…so I was already feeling edge of my seat excitement. KISS answered.  Just like that.  No warning. No time to prepare a laid back, yeah man thank you.  So far, so cool…then I opened my mouth.  I find it so hard not to be gushingly thankful when random happy things happen.  Immediately the onset of ‘thank you’ diarrhoea struck.  I think I told KISS how much I love them…but I’m not ashamed of my declaration, it’s true.  I mentioned my pink sofa which brings comfort and colour to my life.  I said I was disabled; it’s not something I say easily or often.  I think I wanted Kiss to understand how instrumental they are in keeping me sane.  Lovely KISS offered to arrange wheelchair access for me at the venue.  But although Sean Paul and Sia keep telling me to ‘hit the dancefloor’ I can’t. Well I could but it would be literal, ugly and I might take down a few innocent bystanders. I definitely mentioned my Kissmass failure.  Come on Kiss…I’ve spent the last four Decembers scared to leave the house or was it that I couldn’t leave the house?  You’re probably thinking what has this got to do with MYELOPATHY?  Everything!

Following my first anterior cervical dissection and fusion I had a six week check up. At this point I didn’t really understand what was wrong with me, not because I’m a plum but because each healthcare professional had their own interpretation of myelopathy, they used different terminology and their advice was contadictory.  Anyway at the check up I asked the neurosurgeon when could I swim…the physio said it was fine.  Apparently  NO…my spine would not be aligned, infact for most of it my neck would be at about eighty degrees.  Pain would ensue and it would lead to premature wear and tear.  Could I dance?  There must have been desparation in my voice because he asked if my career involved dancing.  NO…do I look like a lap dancer?  But I danced everyday, all around the house, whilst doing all sorts of chores.  Did I want to increase wear and tear?  Did I want to fall over? Did I want to be in pain. NO. No to swimming, no to dancing, no to driving.  It should be called NOelopathy.

I’m tuneless, I can’t play an instrument but I live and breathe music.  Maroon5 calmed me when my noisey hospital ward was like Hammersmith Tube Station.  They  helped me block out my ailing neighbours and their thoughtless visitors.  Yes it’s entertaining to evesdrop sometimes but when your head is imploding music blocks out the pressure.  It’s a painkiller, it’s soundproffing.  Plan B rescued me many times from the edge.

Music is therapeutic.  It coaxes out a shimmy here and a wiggle there.  OK then I’m falling over…Music can be dangerous to us myelopiters.

For me each day is the same but different.  Like yeterday morning: I got out of bed as usual, made porridge, checked emails to see if I’d won the Euro millions.   Nope.  Then I win these crazy tickets.   Suddenly the outside world was inside and I had something to say, which is bloody exciting when you are in the house as much as me.  Communicating can be a real issue with us myelopiters.  It’s lonely living in our bodies.  The external world doesn’t understand what’s going on with us.  We don’t know what’s going on with us! Sometimes I’m quiet not because I’m tired or moody I just haven’t anything to say.  I talk about the dogs, what the kids are up to, programmes on the telly so winning these tickets was breaking news in my house.

So my girls are definitely up for this Halloween house party. They promise to say high to Tiny Tempa for me. They’re going to bring a mate each.  My boys are a bit put out but we are not the Brady Bunch. Now there’s the costumes to consider.  I’ve got green tights upstairs.  Face paint will be inolved…it will rub off onto the pillows. Caitlan’s friend will sleep over…see already my mind is busy   In my imagination, right this minute, I can seee my daughters dancing, laughing, forming great memories together. The following morning Grace will be groggy and dangerous as she gets ready for work.  Kitty will be enjoying her half term sleep in.  The boys will still be complaining about the tickets.

OK, I’m not actually going to the party, I am on the peripheral.  Side effect of myelopathy number 1 – PERIPHERAL.  Get used to it…for those with cervical myelopathy a mind over matter thought process is dangerous…paralysis is very real.  Myelopathy is like having a baby, your world will change and you might find you’re backstage, on the bench, in the wings, put out to pasture. Did I mention no wine? That’s a bummer that one.  By all means give it a go.  I did. It was bad.  I don’t mean good bad.  It was simply bad bad.

So today has been very different. I’ve been different.  Kiss entered my airspace, I now have a voice of my own.  I have a tale to tell and it feels good. I’m real and not a cardboard cut out that gathers dust in the corner.  Also I’ve learnt something…I need to enter a lot more competitions – watch this space.

On a serious note, this blog is not fact it’s perspectve, each myelopathy case is unique.   We may have triggered our disease differently.  For some of us an injury might have brought it on. I unknowingly was  born with congenital fusing.  There is a brilliant site that brings those with cervical myelopathy together.  This is the link

https://www.facebook.com/groups/cervicalstenosiswithmyelopathy/

Another link is https://gertrudetkitty.wordpress.com/ which is where I blog about my writing, there is often a cross over with myelopathy.  My twittering can be found @GertrudeTKitty