Clarity, hope and a big smile

This time six years ago I was in hospital.  My admission 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 imaging inadvertently captured the first few disks in my cervical spine which were congenitally fused.

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 could recall 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 or should I say darker.  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; nobody wanted 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 was the most rubbish feeling ever.

I particularly like @kotterlab post: Myelopathy is too important to be overlooked. Get involved! Join the conversation! “Yes! Yes!” the newly diagnosed me screams.  Where is this conversation, sign me up, I want to buy rights!  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 novel treatments for, Cervical Spondyltotic 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? @BearGrylls?

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 these last six years.  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 my surgeon and his team 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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It

 

 

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…I don’t talk to people so what could I possibly have to say?  At  Alcoholics or Gamblers Anonymous there might be some dark moments but there would be humbling stories, comic intervals, moving recounts – 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 spondylotic 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 krptonite 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.

Leaving hospital was my first 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 my body that was like 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 couldn’t hold cutlery, I had to be fed. I deliberated over my bag of drugs amongst which I had a large supply of morphine.  Prior to my CSM I was rarely ill.  I only ever took a 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 quite a bit of 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.  CSM 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.  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 you’d think there was nothing wrong with me.  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 the most.  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.

Over the last six years 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 so important but to live with myelopathy you need a positive attitude, 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

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.

Was it kryptonite that weakened me? Something like that.  Without noticing myelopathy was gradually and silently draining 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 CSM so thoroughly he could operate if he had too. We’ve always been a team.

On Facebook, on the CSM support group I feel sad reading comments about family members being unsupportive. I can’t imagine how gutted that must make you feel.  CSM is so debilitating 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.

In the beginning…

This is my myelopathy back story for  http://www.myelopathy.org/patient-stories.html You may need to pop the kettle on and put your feet up – it’s long and repetitious; a meandering tale of fact floating amongst memories.

When I was 43 I was me.

When I was 44 I was different.  More advanced? Faster? Cleverer? More knowledgeable?  No.

It’s hard to identify when symptoms first appeared.  My problems rose from congenital defects so maybe I was all wrong from the beginning.

As a child the park playground scared me – the swing, the see saw – I felt sick, I felt like the ground was sweeping up to grab me.  As an adult with my own children –  I felt the same.

Passing my driving test was one of my biggest achievements. Did I struggle with parallel parking because I couldn’t turn my head sufficiently?  Or was I just rubbish at parking?

My first two pregnancies are trouble-free – even better nearly pain-free – did not feel contractions until baby ready to arrive.  First daughter born in two hours.  First son in under an hour.

At the beginning of this recount I was a lecturer in an FE college.  I was good at my job, I enjoyed it. Never ill, never off work. Never in need of even a paracetemol.

CHANGE

Headaches, poor concentration, stiffness,  dizziness, heavy painful limbs.  Began losing balance, every noise jarred in my brain.  When I looked up to my white board I felt sick dizzy.  Lost concentration, students started playing up, too tired to mark assignments or plan lessons in the evening.

Fall pregnant with third child.  Very happy but exhausted; have a constant dull headache. Crick in neck.   Don’t take painkillers  because of pregnancy.  Pain becomes second nature.  Need Caesarian.  Able to go home day after – my head pain greater than Caesarian pain.  Wear a wholly hat outdoors, indoors, winter, summer because slightest draft worsens head pain.  Feel constantly cold. Return to work after six months. Experience pins and needles in feet and up arms.  Suffer dead leg. Dizzy, head rush, feel like I’ll collide with the floor. Horrible spasms between shoulder blades. Pain affects my patience with students.  Carrying assignments around or handouts is hard, they feel like blocks of concrete.

Begin  missing days off work.   Diagnosed as depressed.

Fall pregnant again.   Feel ill, know it’s not the baby.   Have shoulder pain, sinus pain, legs feel heavy. At swimming pool week by week I swim less lengths.  All symptoms put down to hard pregnancy. Return to work after maternity leave.  First day is a struggle.  Can’t concentrate in Curriculum Meeting.  Every noise vibrates in my brain.  Very shaky.  Moving my sluggish body around is exhausting.  I stagger during lessons, I lose the thread of what I’m teaching.  Work is horrible.  I feel isolated from my colleagues of ten years.  To them my sickness doesn’t make sense.  I’m in for one day, away for two.  In three days away for a week.  My moral is as brittle as my body. I worsen so I hand in my notice.

At home most of my issues subside but I have a dull constant headache. Swim most days and think I’m getting older because twenty lengths reduces to nineteen and steadily decease to the point I’m swimming around in a circle.

I power walk the kids to school.  We sing The Grand Old Duke of York.  We usually get to the playground ten minutes before school.  As weeks go by I am confused by how we leave home at the usual time yet hear the bell before reaching the playground.  I think I have a virus.

Return to work, school hours only.  Two years and not a days sickness.  Still go swimming twice a week but when I’m in the water my right arm is unable to move against the resistance of the water.  The pain in it is breathtaking.  I stop swimming, I presume the problem is muscular.  It begins to affect everyday movement.  When I mow the lawn. When I raise my arms to get clothes from the wardrobe.  I use deep heat and a water bottle. My head pain increases significantly so I take every painkiller available: paracetamol, codeine, ibruprohpen. Every day  I struggle with pain, with exhaustion.  I don’t want to phone in sick so I hand my notice in.

A year at home, just taking the kids to school, I expect to feel better but I worsen.  Every tooth in my month hurts, my head pain is staggering, nothing over the counter touches it. I can’t bear noise.  The children’s voices.  The clock ticking.  I just want it to stop.  I visit dentist – no dental issues.  My eyes feel like they’re about to roll out of their sockets the pressure is so immense.  I want to gauge out the pain between my shoulder blades.  My jaw pain is so bad I drink liquids through a straw.  I visit another dentist, I insist on x-rays – they come back clear, but my face is burning up.

Doctor’s appointment. Without even looking in my mouth he  diagnoses trigeminal neuralgia and puts me on a tablet I can’t remember but no pain relief prescribed.  I no longer sleep, the pain is too powerful. My mouth feels on fire.   A week passes and I can barely lift my head off the pillow. Halfway on the route to pick up my kids from school I find myself sprawled on the ground.   Husband takes me to A&E.  Doctor seems perturb with my symptoms.  Blood is taken and painkillers given.  Lay head on pillow and for the first time in a year I feel my pain subside. I want to remain on this bed forever.

Blood results indicate swelling.  Then think I had a stroke. I’m admitted to the stroke ward. Three days later I am MRI’d – a brain scan. Brain fine.  Incidentally part of my cervical spine was MRI’d. Results show abnormalities in spine.  The neural consultant visits.  He clumsily explains the MRI – I don’t understand him.  The only thing I remember to tell my husband is that I’ll need a colostomy, I’ll be paralysed from the neck down.  Patients in my bay come and sit on my bed and can’t believe how such  a significant life altering condition could be delivered so bluntly.

Outcome; I’m to stay in hospital till a bed becomes available in the neurological ward at Charing Cross.  Over the next five weeks I see very little of my family.  I feel low, so low that coping with chronic pain is a battle.  Even morphine shots only keep pain at bay for an hour of two. My weight steadily decreases. I feel a gland inside my cheek rubbing coarsely against my teeth. As my cheek begins to swell. I ask  consultant  to take blood to check  for infection.  He curtly refuses.  I get no more daily visits from him or his team.  I am in limbo. My husband wants to take me from Hillingdon to Charing X himself but I’m in too much pain.

A bed becomes available in Charing X.  I am ambulanced there.  That night, like many previous, I have night terrors onset by the cocktail of drugs previously prescribed.  I spend the night rocking on my bed, thinking I’m in Little House on the prairie, crying.

Am due to be operated on today although I have no idea what the surgeons are doing or what the outcome is.  The surgeon strides in with his team like Grey’s Anatomy.  He cancels my operation due to a severe infection showing in my bloodwork.   He can’t understand why it wasn’t treated earlier or why I was sent over in an unoperable state. He explains that if he opened me up my infection would dangerously spread and probably kill me.  I feel wretched.  I just want to be fixed.

My infection is so rooted I am transferre to ENT.  During my two weeks there my face blows up – I’m the elephant woman.  My jaw locks whilst semi closed so I am put on a liquid diet.  A pain consultant visits me.  She looks at my notes and is flabbergasted by my cocktail of drugs.  She prescribes Pregabalin which I will be on for a lifetime and morphine.  My pain subsides.   I am hooked up to IV antibiotics but the swelling continues.  I have another MRI, a CT scan, an ultrasound.  The infection, although wide-spread, is not concentrated enough for them to draw it out with a needle. It seems the infection began in my cheek, (most probably transmitted by a dentist with unsterilized tools).  It has spread to under my teeth; two teeth need to be extracted to treat the infection beneath.  At this stage I don’t care what happens. I have to go under general anesthetic because my jaw is locked and there is very little room for the surgeon to work.  It took over four hours to get the teeth out. My swelling begins to subside but my jaw remains locked.  I am allowed to go home.  I have to be completely infection free for a couple of weeks before op. I take oral antibiotics for two weeks.  I have lost two stone, when I look in the mirror I see a skeleton, I cannot walk, I am very fragile.

Every day my mobility worsens.  I spend nights and days trapped in a chair because my body isn’t responding to my brain.  The pain is hellish.  I continue to lose weight – I look horrendous, like I’ve had all the life sucked out of me.  The kids are terrified.  I work hard to be positive.  To hug them.  To be the real me.

I get  neurosurgeon appointment.  At long last I will understand my illness.   He explains I have a degenerative disease and without the op I will slowly become paralysed from the neck down.  I might not even be able to talk.  He explains that the operation can’t undo cord damage it simply relieves the pressure from the cord to prevent further compression. He books my op for two weeks time – December 2010.

Wake up from op feeling great.  The arm pain, the head sizzling, my shaky hands, all gone.  My body feels light and responsive. I have a six-week check-up with x-rays, I happily tell the surgeon how great I feel. He sees that I can’t walk properly due to spinal cord damage and two fingers on my right hand are fixed together, I didn’t care that I had to hobble around with a walking stick, I was well again. A week later I received a letter stating that I was released from clinic.  There was no monitoring…or physio…or  occupational health referal…the only advice I was given was to keep my spine aligned.  I asked about swimming?  No, it puts too much pressure on the neck.

Two month later I recognise the signs of myelopathy again.  I think I’m imagining it.  I housewife but my arms are painful and heavy.  When I bend down to the fridge and up to the washing line immense head rush unbalances me.   I simply didn’t want to be more disabled than my current state so I make a doctor’s appointment with a view to an MRI .  Doctor poo poo’s my symptoms.  I challenge his diagnosis. He prescribes tramadol and advised me to learn to cope with pain.  Leaving the surgery I feel troubled.  The doctor clearly had no understanding of myelopathy.  I write a long-winded letter to Charing X.

Shortly (it’s now six months after my op) I receive a telephone clinic from a Charing X neurosurgeon.  He was not best pleased with my letter. He refers me to physio and told me to learn to cope with pain.  Told off again! Need more tramadol. My dependency on painkillers begins once more.

By the time of my physio  appointment I can’t function at home.  My days are spent rooted to a chair, unable to lay down, unable to move head.  I explain my pain is so acute I can’t talk or eat. Physio very concerned about my symptoms and physical state.  Emails my doctor advising I need a neurosurgeon appointment urgently.

Neurosurgeon attempts to reassure me that my symptoms are quite normal for someone with my condition.  He said it was impossible that two months after one surgery I would have myelopathy again.  I am not reassured. I get a little hysterical.  I demand an MRI.  It’s demoralising having to beg for help.  I feel lonely and spend most of my days fighting pain, berating myself for not being tougher and guilty that I seem to be a nuisance to the NHS.  In all honesty I find it hard to keep going.  If I didn’t have the children to consider I might take another course of action.

Months later my husband drives me to Charing Cross for MRI. The car journey increases my pain.  Struggle to get from car to wheelchair. Can only walk a few steps.  Need help getting onto the MRI table.  Afterwards I can’t get up.  In so much pain I go into A&E.   The doctor there seems confused when they conduct neurological tests – they say it’s odd that I can do one thing then not another.  I feel on the defensive.  No one seems to understand what’s happening to my  body and mind. I try to explain how my body is different every day, sometimes from hour to hour. They get a neurosurgeon to look at the MRI. I think why is this so horrible.  I’m scared of bad news.  But what about good news? Then I’m paranoid, weak, attention seeking.  It’s bad news – I was right. I have cord compression. I need surgery immediately. So eleven months after one operation I have the second.

This op is as good as the first.  I am a little more disabled but I can walk again and  the pain is gone. I want to go home but I’m not prepared to be discharged without referrals to wheelchair services, social worker, occupational therapy and physio.  I ask lots of questions about myelopathy whilst I have access to consultants and nurses.  Even on the same team definitions and interpretations are different.  The nurses think one thing – the consultant another – the physio something completely different.  What the fuck’s going on? It’s finally explained to me that I have an aggressive form of cervical sponylotic myelopathy.  I complain about the lack of explanation and monitoring.  They said I was in less than 1% representing  those  having had an operation who shortly have repeat symptoms.   I ask could cord compression occur a third time.  They aren’t sure so  refer me to a neurologist for monitoring.

Visit neurologist and I describe how well I feel, how successful the surgery was.  He seems quite amenable and says he’ll review me again in six months.

I shuffle around the house. I cook a little.  Do some light housework. Using a walker I can get on the bus and shop a little and bank. I remain on pregabalin but the dosage I need is much lower following op and I do not need pain relief.

Groundhog day arrives and the cycle begins again.  I’m dropping things, my foot drags, my arms are heavy, I can’t sleep because the headrush is worse when I close my eyes.  Every day is different.  Neck pain, limbs involuntarily jerking, back spasms, head pain, light and sound intolerance, general confusion.  My pain increases from dull to throbbing to a feeling that my head will implode.  I tell all this to the neurologist at my second appointment.  His amiability goes out the window.  Didn’t I understand that I’d had an operation and I was fixed?  That my symptoms were simply in my head.  That I needed to be braver, learn to cope with the pain. Bastard!   I insist on an MRI.  He is not happy.

The mri is good, no compression.  In an ‘I told you so’ tone  his letter infers my inability to accept that (quote) ‘she had some back problems in the past but they were fixed now’.  He indicated that my responses to his tests were false in some way.  I wanted to scream and pull his finger nails out with tweezers.

As time passes I worsen, I am now so worried I ask the doctor to refer me to another neurologist at another hospital for a second opinion.

Months later the appointment arrives and although the doctor seems nice I sense an undercurrent when he examines me.  He says that my responses are contradictory.  That if I could do one thing, I should be able to do the other.  I ask for an MRI.  He disputes the need for one.  He too takes the stance of the other neurologist.  I say that if he doesn’t take me seriously and I find I have compression I would be taking legal action.  He agrees to get a  consultant radiologist  to review the scan.

Second opinion finds slight compression, stenosis and bone spurs leaving limited space for the nerves.  Appointment made with surgeon.

More months pass and I worsen.  I need a wheelchair when I leave the house. Appointment comes and surgeon sees the state I’m in and requests head and full spine mri.

Three months later we meet again to review the mri.  There is compression both anterior and posterior now.  I have op in December 2014.  In total I have had three ops in five years. Each time my diagnosis is too late to avoid cord compression and further irreversible damage.  The surgeon agrees I should be monitored by his team.  At last I feel happy and confident that I won’t get compression a fourth time.

I was good for about eight months.  At my yearly review I told the surgeon my symptoms were back.  Some were subtle, some were not.  He said he’d see me in six months time.  Just before that I fall over onto my coffee table.  I’d been dizzy and falling over frequently.  At A&E they call a neurologist to examine me.  Like the others he said my responses were strange.   I said they are whatever they are.   He said he’d contact Charing x see what they say.  They say MRI me immediately.  The MRI came back fine.  I attend my Charing x appointment and the surgeon shows me the MRI and I see for myself that there is no compression, it all looks clear.  We agree to meet in six months, or before if my symptoms worsen.

And here I am.  Very dizzy, confused, pain in my arms, legs and hands, heavy limbs, struggling to get up, to walk, to function, my fingers flicking and my arm jerking sporadically, dropping everything.  So I’m nearly housebound, popping pills,unable to wash my hair independently, unable to think clearly, can’t bend so I can’t go to the fridge or put a chicken in the oven or put my shoes on.  In the last few weeks my ability to hold a conversation is disintegrating. The wrong words come out of my mouth, their words become scrambled in my brain.  I get drowsy because from the effort of conversing. I feel like I’ve got MS, motor neuron disease and a streak of madness

If I had to choose the worst side effect of this horrible disease that mimics so many others it would  be the doubt.  It simmers in the breath of nurses, it settles on the tongues on neurologists.  It’s received by my ears and it eats away at my confidence.  These uneducated care providers have done as much damage to my mental and psychological states as myelopathy has weakened my body.

This is my journey to-date, actually it’s not a journey it’s a fucking nightmare.

I offer a big hug to all those at myelopathy.org and myelopathy.support.  Thank you for investigating CSM, thank you for organising a charity to raise awareness, thank you for realising that CSM needs to be given as full a definition as MS and Motor Neurons in medical journals.

Psst…are you still awake?

Funny bones

I don’t know why but sometimes I’m off kilter.  I get this heavy feeling of gloom and I’m not sure how I attracted it.  It makes me uncomfortably restless. I think of a skipping Damiola Taylor.  I see Stephen Lawrence unaware of the fatal danger ahead.  I think of my sons.  I don’t usually make these links but my gloom drags my negativity from the back of my mind to front of stage.

So I go missing.  I don’t Facebook, I don’t blog, I don’t work on my book because I try not to let bad mojo seep into my writing.  I like to think of my writing as reflective rather than a ruse to pull others onto my sinking raft.  There I go again with negativity.  It’s hard to shake.  At these anxious times I might lay in bad longer than normal because I don’t want the kids going to school with me on their mind.  Unlike doctors and surgeons they get to experience myelopathy up close.  They see how hard it is for me to stand from sitting, how I topple backwards, how bending down gives me such violent headrush that I’m gripping the nearest thing to me.  It’s a strange sight to see but we do mainly laugh about it…and then I send them to their rooms. Actually I don’t because who’d make me tea and bend down to the fridge to get the cheesecake out?

When my children  were little they loved a book called Funny Bones about clumsy skeletons.  They lived in a dark, dark, house and when they collided they called for Doctor Bones.   Sometimes he fixed them other times Doctor Bones put the wrong foot on the wrong leg or heads on backwards.  I feel like this body that I have now is not mine.  I was fit and firm and athletic and now I am something quite the opposite.  I feel like I’m on repeat.  There’s not a collision but my limbs stop working. My consultant Mr Bones (that’s not his name but I did see a neurologist called Dr Tripp – that didn’t go down well) scaffolds my neck.  I get to shuffle around again.

So  I have a little morose, silent breakdown now and again.  It’s not indulgent or selfish it’s necessary.  If something important is broken and it can’t be fixed it’s natural to be angry, to feel cheated, to question is it worth getting up today.  But it is. It’s that old story… someone out there is worse than you.  They are more disabled, they are in more pain, they have no friends or family, they are younger than you and their life will be shorter.

Myelopathy is life changing.  It’s like when a first child is born.  It will turn your life upside down but I think it’s better to flow gently down its river than be caught up in a current.  Don’t feel bad about feeling bad, that’s what I’m saying.  And equally important don’t let myelopathy isolate you.  Phone family and  friends; meet up with them, let them visit you even if you can’t get out of your pyjamas. Even though I was a little low and offline my friend Paula took me to Zaza’s.  It was so uplifting to be out and about.  My friend Sharon is visiting on Monday – there will be cake.  Already I feel a little more myself and here I am blogging again.

I think an element of honesty is important when blogging and talking within a support group.  I say an element because writing is about imagination and perspective. I am not down playing how depressed myelopathy can make you feel.  How the chronic pain is like some abyss you’re trapped in.  I think even Bear Grylls would crack.  I’ve been in a bad place a few times and I think each time isolation was at the root of it.  I’ve huddled under the duvet crying, I’ve looked at my tablets and had bad thoughts, I’ve screamed at my family.  These days when, like the London underground, I come to a sudden halt in a dark tunnel I say ‘Help! I’m struggling, I need  company, I want you to watch a film with me, can you make me tea and scrambled eggs’. I think I’m doing better phycologically  even though I’m  physically worsening.

So if you feel low talk about it.  Think of ways your family could help you even if it’s washing up or making themselves and you a meal.  If you can’t share your worries with family or friends then go online and check out https://www.facebook.com/groups/myelopathy.support/?notif_t=group_purposes_change&notif_id=1478724691615960  You are not alone. Comfort, help and information  is only a few key strokes away.

Family and friends

When I feel well my energies go into my mauscripts. During bad patches I visit http://www.myelopathy.org and myelopathy facebook pages.  I’m not wallowing in myelopathy drama I’m simply hanging out with fellow sufferers.   People on these sites get it in a way others do not.

Myelopathy is lonely.  No matter how hard you try to hang on to the strings of your old life, they slip through your fingers.  I’ve often felt schizophrenic because my physical state can alter hourly and this impacts on my mental state.  So many of you guys have talked about friendship and how they peater out as your myelopathy develops.  There are lots of cases where even family have dismissed your condition and made you feel negative about yourself.  That’s why people like @iwansadler and J J Anthony are so important. Raising awareness of this disease is essential if we are to recieve the support we need and for friends to understand our limitations.

Socialising can be hard.  People judge.  They think it’s odd that sometimes I’m in a wheelchair and other times I’m walking in the High Street.  They assume that because I’m smiling and laughing I’m not in pain. People understand cancer, ms, alzhimers – they do not understand myelopathy and if that means they drift away from you then it might be for the best because you deserve people who have your back.  I have three lovely friends.  They don’t judge me.  They don’t press me for answers.  They visit, bring cake and see for themselves how poor my balance is, how I struggle to stand and walk and how taxing it is for me to communicate verbally.

*Myelopathiers* struggle, we are trapped in a body that just won’t do as it’s told.  We are weak yet our bodies feel like 100 stone.  We take so much medication that we can’t think straight.  We feel so cold we’re lost under layers of clothes. I’m using ‘we’ because we are a club.  We are only a keystroke away.  Don’t use the small amount of energy you have justifying yourself.  You have myelopathy, it’s life changing, everyday it knocks you down but you are brave because you keep getting up.

I don’t have advice on how to help family understand. One of mine asked had I tried Vitamin D.

I would have benefitted from a hard copy of my diagnosis. Just like an optician gives you eye test results.  Followed with a leaflet explaining cervical myelopathy with advice on how to conserve the spine.

Training should be given to neurologists on how to support and monitor a diagnosed patient.    And stop asking them to walk in pidgeon steps and  pretending their operation cured them. It’s hard for families to understand a condition that neurologists struggle with?  A physio asked had I tried using a hot water bottle?  It’s hard not to run around the room screaming (obviously it’s hard, we can’t run).

As one neurologist said to me…you only have one neck…it can’t be replaced like a kidney or a lung…there is only so much that can be done surgically so it’s up to you to look after it.

To cope with any condition you need family and friends to be understanding.  Sometimes that understandiing can only be achieved through hard facts. We need the NHS and medical boards across the world to shine some light on myelopathy, to give it equal status to  other neurological conditions.

Through reading posts on myelopathy facebooks I’ve learnt so much, like today – once the spine is damaged it’s hard to control your body temperature – too bloody right it is – if this is the case perhaps the Christmas fuel allowance should go to financially challenged myelopathiers.

Finding this international group of cervically challenged folk has given me this new drive and purpose.  I will get my book published and I will try to help my group stay positive and chirpy.

Here’s a litte song that always makes me smile

sad song david byrne

*made up word*

 

Support

If you have cervical myelopathy, or think you have it, check this site out http://myelopathy.support/myelopathy.html   I’ve had csm for five years but only recently found this site.  I’ve been stumbling around (metaphorically and physically) trying to figure things out myself.  This site is brilliant, there’s definitions of terms, visual explanations, personal stories, medical breakthroughs and investigations.  So check it out because it’s helped me immesely.  I’m still a follower.  It’s also helpful for family and friends to visit the site too because myelopathy effects the whole family, my husband is now my full-time carer.  Like mental illness, myelopathy isn’t always physically obvious so those around you may not be sympathetic particularly if you are middleaged.  Myelopathy is a natural degenerative disease, not uncommon in senior citizens, where it’s progression is usually slow.  Health professionals are not always trained to care for younger sufferers.  Myelopathy is not a one size fits all disease.  It’s complicated.  Each person’s body is unique, how we sustained myelopathy will be different, the damage to our spines will differ, nerves damage from surgury won’t be the same.  I could go on because I’m a bit boring like that but you’ll get the picture from the website’s post.

Now back to a bit of what this site is about.  I love a disaster movie, particularly alligators, conger eels, sharks.  I saw and heard of something horrible yesterday.  It was the most cruellest, freakish thing to do, I nearly cried – shark finning.  My advice is never click on a related link.  It will suck your breath out of your body it’s that horrendous.

rag and bone man human  my song of the week.  Remember we are only human so don’t be too hard on yourself (unless you have done something really bad)