#depression

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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The BB’s Book Club

Posted on by Gertrude T Kitty

 

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.

 

 

 

 

 

 

Pill-box-gate

Posted on by Gertrude T Kitty

My mood over the last month has swung, dived and crashed.   It has been a bit of a bumpy ride for me, my family and my marriage.  Sometimes I pass a mirror and catch a glimpse of myself and I look so stern.  I’ve always been smily and giggly, one of those happy annoying people, but longterm pain has altered that.  It’s evident on my face, I see it in my eyes, pain and impatience.  My patience used to be infinite, the only time my back would be up is if someone was being treated badly.  Now the smallest things upset me; like a dirty plate left in the sink.  I’m snappy and blunt.  I’ve never suffered PMT and I think I’ve gone through the menopause but I can’t confirm that because with myelopathy everything else goes on the back burner.  I’ve never discussed the menopause with my doctor, or HRT, so maybe there are other contributing factors to my moods.

What’s really affected me is my inability to write and blog.  I was so near to getting my book published and then crash, I’m hit by the myelopathy bus which now has a passenger Fibromyalgia.

Myelopathy pain is very specific and recognisable to me.  It’s in my head, neck, shoulders and arms.  There’s a flavour to it, like a cough candy.  My medication has pain under control once I’m static; bending, reaching, lifting, the car – then I’m in trouble.

Fibromyalgia though is a monster.  It floors me.  You could count to a thousand and I’m not getting up.  You’d think that pregabalin, amitriptyline and tramadol would contain it but no…it’s that bad guy that keeps getting up again and again.

It’s a very common condition, particularly in sufferers of myelopathy.  One day I’m doing ok the next I’m so stiff I can’t  turn in the bed or sit up and pain runs the length of my body which is sore to the touch.  Moving my head is a very bad idea.  There are three symptoms that I find the most difficult to cope with: IBS, exhaustion and mental impairment.

I’m at the stage now where I eat mainly soup, toast and mashed vegetables.  Everything sets my IBS off and the pain in my stomach is debilitating.  I also suffer from lower back pain, I have a couple of deceased disks there and in my thoracic area so when the IBS strikes it feels like my whole lower torso is in pain.

Exhaustion is the second symptom.  I’m barely on the computer ten minutes when my eyelids flutter, my vision zooms in and out and I’m falling asleep.  I sleep so much I don’t know where 2017 went.

So you can see it is hard to blog and to edit a book when your stomach has swelled to the size of a whale and you can’t remain awake.  It’s also hard to edit a book if you are nonsensical.  You’d think using my imagination, researching ideas and theasaurasing would exercise my brain.

No.

Writing, reading, crosswords, word searches they are not working. Something is very wrong in the faculties department.  It’s more than forgetfulness that comes with age.  It’s not being able to ask for coffee in a coffee shop because you can’t remember that coffee is called coffee even though you are surrounded by the word and the product.  It’s walking away from the cash point without the cash.  It’s not knowing your children’s names.  It’s posting letters without stamps.   It’s being in the wrong restaurant when your friend is in the right one.

In the beginning these little peculiarities were infrequent and something to laugh over.  Now they are regular and impact on the frustration I already feel because of my immobility.  I’m now physically slow and mentally slow and my dream of being a published writer is slipping away.

Am I coping? I think so.  I’m meeting friends outside of the house, going to different coffee shops but the journey in the car cripples me.  I’m persevering with physio and my swalking.   For each day I’m active I’m spending two/three days in bed.

This morning I was up at seven following seventeen hours in bed.  I didn’t intend to blog, I only blog when I have something to say and today I do.

Pillboxgate.

I remember when I was first pregnant.  Every mother I came across imparted her words of wisdom.  Some of which was invaluable, some not suited to me and some that was judgemental.  Although pregnancy is a condition common to innumerable females each pregnancy is unique because each woman is unique.

Myelopathy is exactly this.  We might share symptoms but our medical histories are different.  How we came to have myelopathy is different.  Many of us have other health issues.  One person might need 10mg amitriptyline another 20mg.  That doesn’t mean the second person is taking too much or not coping.  After my first Cesarian I didn’t take any pain relief, not even a paracetamol because I was breastfeeding.  After my first acdf I left the hospital the next day and never took pain relief from that point.  Yet right now I’m on 600mg pregabalin.  Knowing my history would you say I’m someone who can’t cope with pain or is it that my pain is so substantial I need that drug?  Maybe right now that drug is weakening my kidneys.  If I stopped taking pregablin I would be suicidal – undoubtedly.

As someone whose body used to be a temple; no drugs legal or illegal, no smoking, very little alcohol I take whatever tablets available to make today as pain-free as possible so I can enjoy my family.

My point – don’t tell depressed people to cheer up, don’t tell people on meds to cut down – we’re neither doctors or physcologists.

There is no tomorrow if you can’t live today.

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

The upgrade

Posted on by Gertrude T Kitty

I was at Charing Cross today.  I always feel emotional there. It was this time six years ago that I’d spent a fortnight on the ENT ward.  I’d been transferred from Hillingdon Hospital or in my experience HELLingdon for my first ACDF which was postponed due to my facial infection.  I was so well looked after there.  Yet once I step over their threshold I feel anxious.  Even today when I’d already knew I didn’t require surgical intervention.  That although I had some minor degenerative changes in my thoracic and lumber areas I had no cord compression.   This is very good news, a few dehydrated discs here and there is plain sailing.  I can get back to swalking and writing and persue publishing.   My battle now is with pain.

One minute I’m typing away and the next a wave of pain strikes and I want to throw up.  Doctors ask is it sharp?  Is it tingling?  Actually this pain is blunt and it feels deep rooted like a tumour and it’s in my head and the groves in my shoulders and it feels like veins in my neck are twisting.  It’s also bloody boring and it makes me sad.   It’s fine.  My emotional cave ins don’t last long.  Paddy and Kitty will bounce onto the sofa beside me and they’ll come up with a funny tale or two.  I love having my children close.  Young people have this electricity charging through them that’s contagious.   I think it’s what keeps me so positive…usually.

For a while I wondered would there be new experiences on my horizon, would I meet new people?  It’s not me being dramatic;  I’ve only  been out of my local area four times in a year: twice to the theatre and twice to Charing Cross Hospital.  My writing led me to an agent, which led me to editing meetings in new cafes and bars and maybe in the future it will lead me to a publisher.  It is of course  a poisoned chalice because over the last year I have deteriorated in terms of pain and I have to consider that my manuscript is possibly the reason.  Oxycotin’s been added to my perscription and I keep randomly falling asleep.  I think I’m in bed more than I’m awake.  I can’t bend; not to the fridge, the cooker, to pet the dogs.  I’m also very confused.

Everyone with CSM will be familiar with chronic pain and a constantly altering physical state.  Myelopathy is like someone having your effigy and each day they stick a pin in a different part or they stick two pins, three pins, four pins.

Myelopathy steals your life.  It prevents people from working.  From operating independently.  From participating in their hobbies and family life.  It’s like being an extra on a film set.

Every day before work I swam thirty lengths.  I spent the day in front of students lecturing. I drove to soft play rooms and kids parties. Every occassion I danced.  Every snowfall I built snowmen.  I remember starting a snowball off with my kids outside their school and rolling it all the way home whilst it grew larger and larger. All the time I baked, and power walked, and gardened and springcleaned and decorated all to the soundtrack of Kiss FM.  Now I’m an observor.

I think what I feel is loss.  Of course I’m glad to be alive, not to be in a wheelchair, not to be battling cancer, not to be in Syria.  The list of those worse off than me goes on forever. Most of the time thinking of them stops me from selfishly thinking about me but today, back in Charing Cross, I remember that I’m left with a version of myself that’s no longer useful.  I know that problems will arise and I’ll be downgraded again.

There’s that saying I wouldn’t wish it on my enemy – actually I think it would be brilliant.  For them to wake up one morning bright and breezy until they attempt to get out of bed.  To not be able to move.  To have to focus all energy on swinging their legs out of bed, to try to sit up, breathing hard because of the energy used.  To feel exhausted and defeated and that’s before they’ve put a foot on the floor.

I think what’s difficult is that I am disabled but not conventionally.  Today I may have walked the length of the garden.  Tomorrow I may not make it to the back door.  But if I’m out I’m probably casually dressed, definitely smiling because I love going for coffee and this will be me at my best otherwise I wouldn’t be out.

I’m like an Olympic athlete – my walking depends on the environment and conditions.  How long I’ve been seated for.  Whether I’ve travelled in a car.  How dizzy I feel. The surface I’m walking on.

The next day I’ll be in pain.  I’ll be tired.  My body will be so stiff and heavy it’s like semi paralysis.  I’ll lay in bed unable to lift my head from the pillow and I’ll vow never to leave the house again but it’s like childbirth…a week later I’ve forgotten all that and off for coffee I go again.

I don’t know how my words or tone read.  I don’t want to be a moaner but then again I don’t want to pretend like everything is cushty because for all those out there with myelopathy I won’t diminish the challenges they face along with their family.  For a long time I felt very isolated.  I didn’t understand my disease so I couldn’t explain it.  I searched the internet for hours, every day at the beginning, trying to find information and others with myelopathy.  When I stumbled across https://www.facebook.com/myelopathy and http://www.myelopathy.org/ it was brilliant.  I had a place to check in each day, read about others’ operations, outcomes, difficulties, chat.  Through them I found other facebook sites Spondylosis Support Site and Anterior cervical discectomy and fusion(ACDF).  I’ve learnt masses about my disease.  It helps me to understand my mri, to have more informed discussions with my surgeon and doctor and I get strength from others because they’re feeling it too.

One of the reasons I write this blog is because it might find its way to someone who is totally floored by what is happening to them and who desperately needs a support group.   I also write because it’s my new thing.  It’s what fills my time.  It’s what keeps pain in the background. If the old you was a sailor, windsurfer, gymer, rider, white water rafter there will be something new, a challenge, on the horizon.

Writing is my dream.  It makes me the upgrade.

 

 

 

Clarity, hope and a big smile

Posted on by Gertrude T Kitty

The beginning: my admission to hospital via a&e was very confusing particularly as I was in the kind of pain you imagine when watching Hostel.  So I was never going to grasp what was wrong with me even if they’d spoken.  Like.   This.

It wasn’t trigeminal neuralgia.  Nor was it a stroke.  The MRI of my brain was clear but the image inadvertently captured the first few disks in my cervical spine which were congenitally fused along withcervical stenosis

When you’re admitted to hospital there is no induction.  They didn’t give me a welcome letter introducing my consultant or the time of his rounds so my family could sit in.  There was no myelopathy pamphlet explaining my condition or written diagnosis or care plan.  So…my husband’s ringing me, I can hardly speak I’m in so much pain and for the tenth time NO I DON’T KNOW WHAT’S WRONG WITH ME!

I had a second MRI, of my spine.  A few more days pass. It’s not visiting time, so I’m on my own, when a neurologist pulls the bay curtains closed and sits on my bed.  If he voiced ‘cervical myelopathy’ then in between his other words that diagnosis got lost.  He basically told me I would be wheelchair bound and incontinent.  I would have to have a colostomy bag fitted.  My neighbours of course were listening, it’s hard not to when the curtains are dramatically drawn.  They could not believe the abrupt, negative way the diagnosis was delivered.  I phoned my husband, repeated what I recalled but NO I STILL DON’T KNOW WHAT’S WRONG.

I was transferred to Charing Cross to have an operation I knew nothing about – it’s an abcd I told my husband.  At this stage I’m on every drug going including morphine shots – I couldn’t have told you my name.

At Charing Cross my situation becomes clearer but  I’d never heard of Cervical Myelopathy – nobody had.  Not my friends or family.  My doctor? Ok, but he didn’t understand it.  It sounded dead scary.  To think that right that moment my disks were being gnawed away by some obscure, insidious entity.

At home I spent hours, days goggling myelopathy, spondylosis, stenosis.  There was so little information available unless you were a dog.  What did it mean for me?  What was my future?  Incontinence, wheelchair, bed bound?  The doctors, neurologists, surgeons; all too busy to discuss my future or what living with this disease would mean.  One doctor was contradicting another – the operation cured me – there is no cure!

I so needed to speak to a fellow sufferer.  I felt like I was the only person in the world with a horrible, disabling, deconstructing disease that nobody was interested in.  There had to be people out there, somewhere, with CSM or was it DDD or the other ten names  it hides under.

I can’t remember when I found myelopathy.support; it was four or five years later, sometime after my third op.  It sounds wrong to say I was delighted that there were people like me but I was. Maybe it’s immature to say I felt slighted that Cancer, MS, MN and so many other diseases are recognised and CSM, this painful, exhausting, degenerative, silent assassin that would repeatedly strike, wasn’t. My life was, in a matter of weeks, shattered and it was like ‘so what?’

It’s a huge bonus that Dr Mark Kotter is an academic neurosurgeon at The University of Cambridge who is clinically interested in gaining a better understanding of  and developing treatments for, Cervical Myelopathy.   I think he will bring clarity to the current mishmash diagnosis and reveal how CSM impacts on so much more than just our limbs. I feel hopeful that in the next five to ten years myelopathy will be a better understood and represented disease.  I hope that leaflets will be in doctor’s surgeries and people will grasp that looking well doesn’t translate to feeling well.

In that respect CSM’s like ME.  We share many symptoms.  Not that I know much about ME but my daughter’s friend is a sufferer.  I know it’s chronic, it’s fluctuating, it’s exhausting and painful. It’s just wrong for someone so young and vivacious to constantly cope with a body that’s weak  when inside she’s bursting with ideas and aspirations.  It makes me more resolute to live my life, to not winge, to work around my difficulties and not feel sorry for myself…well maybe just a little…who wouldn’t?

The reason I’m thinking about Alice Ella is that she was on  http://www.channel4.com/programmes/first-dates/on-demand/65067-009  a programme I have never watched until last night and I liked how Alice used it as a platform to highlight ME.  The programme was also well enjoyable.

I think about my own journey.  The times I’ve wanted to scream in the faces of some very ignorant and arrogant health professionals.  How it was easier to stay at home than attempt to explain to friends what the hell was wrong with me. To understand that participating in something as sedate as a coffee out means resting up the day before and struggling with pain the following day.

The Cambridge study and my friends at myelopathy.support have given me the confidence to discuss my health and how it impacts on my life – they’ve made myelopathy real instead of what people judged was in my head.  When something threatens to break you, to impinge on every aspect of your life you need people to appreciate what you’re dealing with.

But you also need to get on with your life.  You need to understand your limitations and be flexible and work around them.  You need to chase your dreams and smile and laugh.  I’m still working on my book and Alice Ella is singing.  Her single 24 Obsession is waiting to download on my ipod.  I’d love Alice’s single to do well, one because it’s wicked and two because her platform to discuss ME would increase. Check out the link below:

https://itunes.apple.com/gb/album/24-obsession-ep/id1246372370?app=itunes&ign-mpt=uo%3D4

In my dreams I’m on The Johnathan Ross show talking about my novels but more importantly myelopathy.  I now have an informed, supportive doctor and the neuro team at Charing Cross are excellent but I would love to be able to stick it to the multiple nurses, doctors and neurolo-gits who have let me down over the years – who in their ignorance and lack of compassion have made me feel like shit!  Can you tell that I’m cross?

There are so many awful things happening in the world.  Sometimes they seem so deep and so widespread that you know whatever you did to help it would have no real impact.  But we can help each other. We should help each other.

What am I actually blogging about?  What I want is for Myelopathy to be as understood as MS so that newly diagnosed people don’t experience the complete bewilderment and frustration I came up against.

I want good things for people who despite their disability put themselves out there like @alice_ella_

I want to win the lottery, have a house with a pool, write a best seller, lose a stone, get stuck in a lift with Adam Levine, be able to cook without burning, be on Strictly Come Dancing.  Have I gone too far?

That’s it.  I’m done.  Have a great day.  Smile.

 

 

 

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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.