I think with any kind of disability it’s easy to withdraw from life.  It’s not something I did intentionally it sort of crept up on me.  Winter is not a good time.  My bones and nerve damage react to cold, damp, wind.  The streets can be icy and my balance is poor.  I have to wear so many layers that getting out of my pyjamas compares with white water rafting.  I have so many reasons not to participate.  But that was then and this is now.

I’ve pushed myself to go out, meet people, resurrect old friendships.  It’s energising in one way but floors me in another.  Like Saturday.  I went to a fiftieth birthday party in a function room some distance from where I live.  Lots of my myelopathy friends are probably nodding their heads right now knowing that car travel is problematic.  Every jerk, every bump results in discomfort.  Getting out of the car was painful.  It takes an immense effort to get to my feet even when supported.  Once I’m among friends and the music bounces around in my head it feels worth it.

It’s not easy for me to socialise.  I take slow release pain relief to keep comfortable but I can’t drink more than one Spitzer without severe head pain.  So I never reach the point that most drinkers do when they are totally relaxed and conversation flows.   I feel wooden, I think I’m just out of practice.  With family and close friends I don’t worry about my choice of words, which regularly are unrelated to the topic.  Instead of shower I might say flowers, instead of fridge I might say tomatoe…or I might say nothing…I go blank.  I’ve been tested for Alzheimer’s but the result was negative.  I know that myelopathy can effect the whole central nervous system but that doesn’t help me.  I simply don’t know what to say after ‘hello’.  Luckily friends picked us up in a cab and they’d gone skiing with lots of the party goers and so I picked up snippets of things to say.

But I danced.  God knows what I looked like.  It bloody hurt but for just a few minutes I felt amazing.  It was following 50 Cent that I knew I was in trouble.  Then there was the cab ride home during which I would have beheaded myself if I’d had a machete.  Indoors I took some liquid oxycodone which knocked me out for a couple of hours but when I woke oh dear it was so bad.  The worst I’ve been since I was carried out of Moons.  I needed to go to the loo but couldn’t move my head. I actually laid there wishing I had a bed pan. Hours passed and looking at my husband fast asleep and knowing my kids were in their rooms asleep I realise I’m in a bubble all on my own; no one can help me.  I consider can I make it to A&E and beg for a morphine shot but I can’t face the car journey.  I think I fall back to sleep at about 6am.

I was in this self-inflicted world of pain till Tuesday night.

I must mention my burning.  When I overstretch myself physically I get burning hands and feet.  It is extremely painful, but itchy too and it affects my scalp; it’s nerve damage.  It was so bad this time that minute tears on my skin appeared and it worked its way up my leg and arm.  It looked like I’d shaved my legs and arm – badly.  I had it for two days.  Often I get it across my cheeks so I always have a brown bag handy.

On Wednesday I was very unsteady on my feet, swaying, falling to one side so Wednesday evening I went to the swimming pool and walked around in the shallow end trying to get my legs into some sort of rhythm.  Slept most of Thursday.  Went back to leisure centre Thursday night.  Today I feel perky.  No awful pain.  No dizzy turns.  Just shuffling around like I usually do and it’s comforting.  It’s usually at this stage that I shun socialising.  The pain scares me.  Obviously I’m in constant pain, but I’m used to it and on a lot of pain meds.  This other pain that I set off by physical exertion and car journeys is the worst pain in the world.  I can avoid it.  I can stay at home.  On my sofa.  Living through my books.  Letting life pass me by.  Or I can go to Rachel’s baby shower.

I’m going.  Wish me luck. I’m an idiot.



Lights, Camera, Action

I’ve decided to live a little, regardless of pain, regardless of speeding up degeneration.  My last mri showed no further degeneration; my neck is stable and there is no cord compression; so maybe my lifestyle has slowed degeneration down? But I don’t feel alive.  I don’t feel elated.  I don’t get a rush of excitement.  I don’t belly laugh to the point I cry.  I don’t run along a beach until I’m so hot I throw myself into an incoming wave.

My life is careful.  I rarely go to new places.  The only new people I meet work for Amazon.  My old friends think I’m a frigment of their imagination

The fact is this: I will never escape pain.  It’s like a wasp; even if I stay calm and ignore it, the little beast won’t beat it…and possibly if I resume some sort of semi normal life it might trigger further progression.  But I’m in a quandary because for the first time since this whole horrible chapter of my life begun I’ve experienced depression.  There’s no point pretending otherwise.  I was so down my forehead was scraping off the floor.  Pain, lonliness, frustration, too much time looking backward and not forward got the better of me.  I think I’m over the worst of it now but it did scare me. I think I’d rather risk further degeneration than be the person I was a few months ago.

I think my inability to write triggered it.  I don’t know what’s going on with my spine or central nervous system.  I’ve gone from writing easing my pain to writing setting it off.   I’m not giving up even though it’s tempting.  I’m working on it….just very slowly.

Intermittently I check out I don’t read as many or write as many posts as I used because of pain.  However via this site I got to participate in a video to aid doctors diagnose cervical myelopathy.  I didn’t have to think twice.  Whatever I can do to promote awareness of this dibilitating disease I will.  My husband was weary; he’s seen how I crash when I’ve over reached…but I’m more scared of not existing than crashing at this point in time.

It was so much fun.  Filming in a studio in Covent Garden.  Meeting doctors and cameramen.  Having a microphone pinned to me. It was a mix between House and Grey’s Anatomy.

It was a bit odd laying down on the bed surrounded by cameras and lighting.  My daughter was in the room and I knew if I caught her eye I’d start laughing.

So I’m on the couch and a very beautiful, vivacious lady doctor explains that this video will be used to train doctors.  Watching it they will have to make a diagnosis based on the examination and my responses.  She goes on to carry out an upper limb examination.    In between scenes I have a coffee.  They had biscuits too but my fingers are so unreliable they’d be crumbs everywhere; certainly in my hair.  The lower limb examination is with a very dishy male doctor.  My daughter concurred on this point.

The examination is a mix of me pushing and pulling and parts of me being tapped and buzzed with instruments. I find it really hard to respond to touch tests.  It’s like eye tests when they say was it better first or second.  It’s so hard to tell.  My sensation is reduced in all sort of places on my body.  I burn and cut myself and don’t feel it, I get bruises and don’t know how I got them yet pain on my external ears is so acute I can’t bear to lift them away from the pillow.

I’m not going to lie I was in pain.  Both doctors were totally considerate, I could have stopped but I knew it wouldn’t subside for hours maybe even days.  Earlier a car collected us; the journey was about an hour but it seemed much shorter.  Grace and I were catching-up and having been raised in Central London it was interesting to see how much Soho and Covent Garden had changed.  We even passed where my primary school used to be…but still the pain sets in and getting out of the car was difficult.  Once pain breaches my shields its takes root.  On a positive note it was good that the doctors got to see me struggling a little because sometimes my walking is very good.  I was filmed getting off the couch. CUT. Walking straight and turning around and walking back again. CUT.  The two scars at the front of my neck. CUT.  The scar at the back of my neck. CUT.

The film company arranged transport home and covered all costs.  But yes, the journey was painful…I took two tramadol on top of amitriptyline and pregabalin.  It was excruciatingly hard getting out of the car even with Grace helping.  Once indoors my husband held up the note I’d left him ‘towels are in the fridge’?  My mind is a complex thing but he translated and hung the towels from the washing machine on the line.  Dropping onto my chairlift and pressing up I had a smile on my face.  I’d done something different and helpful and meeting new people was stimulating,  filming was fun and  I have something to talk about and blog about.

I intend 2018 to be diferent; for me to be different.  I need to live a little.  I’m not thinking big here…I’m thinking a weekend at a spa with my husband; sitting on tall stools at the bar, enjoying a glass of wine and making love in a bed that’s not ours.  I want to go to a cocktail bar. I want a full body massage. I want to walk round central London; in and out of  shops and have coffee in a trendy cafe that’s not Costa or Cafe Nero.  I want to go to Miller and Carter.

I am disabled.  I am in pain.  In time I will  get worse.  At first this frigtened me because my children were young and I was scared I wouldn’t be there for them.  But I was, even though it’s been tough on all of us.  They are nearly all grown and I feel relieved and grateful.  I think now  I can push myself because when I end up in bed riddled with pain for a week I’m not letting anyone down.  More importantly by reaching out to old friends and new friends I’m no longer isolating myself and hopefully that will prevent me from being glum.

Yesterday I perused some of the Myelopathy posts and it is so apparent that depression is a serious off shoot of this disease.  It’s hard for fit and healthy people to imagine what it’s like to live with chronic pain.  I mean, I go to bed in pain.  It’s all over.   Pain wakes me up, usually at about three.  It’s like I’ve been crushed by a steam roller.  The pain is so full on it takes me a good five minutes to breath through it and get upright.  The intensity of it fades as I move, as does my rigidity, but the discomfort is still sufficient to keep me awake.  I let the dogs out and made a cuppa and I sit in my bed in the dark and listen to music.

Going to the swimming baths and exercising in the water has helped my depression considerably.  There’s regular swimmers to say hello to.  I feel more body confident.  The sauna and steam rooms are relaxing.  I feel proud of myself for not just giving up.  It’s winter and it’s not so easy putting on layers to go to a cold pool to then takes all those layers off.  It’s a massive effort but I go, no exceptions.

What I’ve not been so good at is socialising but pre Christmas I did go out to lunch twice and it was so uplifting to meet my friends out of the house.  So my quest is to get out and live a little, dance a little, drink a little, laugh a lot.




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.


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.


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.















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

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 and 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.




The Cube

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

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

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

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

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

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

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

The last  game I play?

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

Hope your surgeon has a steady hand – buzzzzzzzzzz.


Clarity, hope and a big smile

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; 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  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 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:

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.