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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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.

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)

Uncool

sofamum
Sofa Mum

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

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

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

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

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

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

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

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

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

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

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