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 https://www.facebook.com/myelopathy and http://www.myelopathy.org/ it was brilliant.  I had a place to check in each day, read about others’ operations, outcomes, difficulties, chat.  Through them I found other facebook sites Spondylosis Support Site and Anterior cervical discectomy and fusion(ACDF).  I’ve learnt masses about my disease.  It helps me to understand my mri, to have more informed discussions with my surgeon and doctor and I get strength from others because they’re feeling it too.

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

Writing is my dream.  It makes me the upgrade.

 

 

 

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.

.

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.

Without noticing myelopathy  gradually and silently drained 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 myelopathy so thoroughly he could operate if he had to. We’ve always been a team.

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

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.