The BB’s Book Club

 

I met my husband when I was 19 and he was 27.  He was in a friendship group of boys and girls he’d gone to school with, or that lived on his estate.  I was a loner; fairly reserved, so I was socially out of my depth among the tight-knit, strong, sassy, independent women in the group.  They knew who they were, they were in established relationships, they were loosely friends with my husband’s x – it was awkward.  But I was in awe of their bond, their easy banter, their shared experiences.  Thirty years later I’m still a little envious of their remarkable rapport; they have this honest and pure sisterhood.  They’ve been there for each other through school, boyfriends, breakups, pregnancies, miscarriages, raising kids, losing family; they are totally solid.  I still sit on the peripheral of this dynamic but it’s a warm, accepting, fun place for me to  be.  It’s a bit like when you are given a honoury degree.

There was a baby shower a while back.  It would have been so easy not to go.  It was a long enough car journey for my unsteady neck to be bobbing up and down.  My alcohol intake was down to water with a hint of wine and my conversation was dried up.  But I pushed myself.  And I’m so glad because Jen, who’d recently lost her husband, who I barely know, had formed a book club.  They’d met once and she said come along.  Whilst coping with her loss, she was thinking of me and my limitations and I thought fantastic; I can do this.  To live with myelopathy you need to focus on what you can do and let go of what you can’t…otherwise you’ll drive yourself mad and into a wheelchair.

So I find myself part of this sisterhood which I am totally embracing.  I have not missed a book club night.  They are a Come Dine with Me/Through the Keyhole fusion.  I’ve had great food, lively conversation and I’m living.  I’ve been so pleased with myself reading the book and engaging with friends.  It’s been a struggle because I am deteriorating and I am an unreliable guest.  Two weeks ago I was in Charing Cross, with head pain that immobilised me, half distraught thinking what the f**k’s gone wrong now, half angry that ninety percent of the health professionals attending me are clueless about my condition.

Since coming home my priority has been making it to Book Club.  Not tidying, not cooking, not shopping, not pleasing anyone else, just managing my pain and my mobility and getting to my lovely friend Paula’s birthday who was hosting Book Club.  I’d spent the week doing the complete minimum only stretching and moving around the house.  Come Saturday morning I laid in bed, pain in every joint, my head a ton weight sitting on a brittle neck, my stiffness wretched.

Three things got me to book club:

  • celebrating Paula’s birthday who’d put on a scrumptious dinner and dessert,
  • ensuring I remain in the inner circle because it’s a very lonely, miserable existence if you don’t help yourself to socialise
  • MYELOPATHY.ORG – being in hospital was a painful reminder of how misguided so many doctors and neurologists are.

My situation is ridiculous.  There’s Paula, at work all week, shopping for food for twenty guests, spring cleaning, cooking and I’m struggling to participate.  It’s my perfect night and it’s touch and go whether I’ll be well enough.  But what’s been lovely is no one pushes me for answers about my condition, I’m just accepted and treated gently.  I feel so lucky to have these ladies in my life.

But the icing on the cake is their enthusiasm and willingness to support our charity.   When I was in hospital I was so demoralised by the complete lack of interest neurologists have in myelopathy.  I thought, I’m doing something about this NOW!  When I say ‘I’ that means someone else because I can’t raise money for Myelopathy.Org without being helped myself.  So I asked the girls to donate a pound each time we meet for Book Club and Paula was so gracious about me hijacking her birthday to plug and collect for Myelopathy.  Particularly as I’m already the most needy member.  And I feel guilty that my participation is like hit and run.  I’m in there with the food and the book review and then I’m off.

 

But seriously when my husband came for me at about eight thirty my head was pounding and the car journey made me sick.  I was up till 2.30 am with severe body pain but I kept thinking this will pass and then I’ll count the money, blog and get my husband to deposit the funds raised during the week.  I’m still in pain, I’m doing breathing exercises right now like I’m in labour, I’ve taken Oxy and Tramadol but it was worth it; I had a great time last night.  I know I was fuzzy headed toward the end, I had to keep moving around because pain was creeping in and my balance was starting to waiver and my phone confused me.  It affected the quality of my goodbyes.  I wanted to hug and say thank you to each book clubber.  They probably don’t realise what a positive impact they have on my life…but I am so grateful – thank you ladies. xxxx.  Also you gave more than a £1.

On our Facebook page we often chat about how our disability comes into question.  That how we look doesn’t reflect our inner pain; which is true of many debilitating conditions like arthritis, autoimmune disease, fibromyalgia. Then there’s how our mobility alters so precariously; it’s no secret that I could be in bed, rigid with pain one day and in Nero’s the next.  Also age is used against us.  For some reason people think the younger we are, the better placed we are to cope.  Actually it means our spines have given up way too early and if we don’t conserve what we’re left with we’re in trouble.

There is so much heartbreak and agony in the world; it’s hard to know who to help and how; often we don’t have the time or the resources.  Usually I donate to Crisis at Christmas.  This year I want to donate something to homeless teens/young adults.  I can’t fix the world but if you help one person then that’s brilliant.  When those around me support Myelopathy.Org they are supporting me.  I find coping with day to day life challenging. It’s very hard to fight your corner when you’re in pain and exhausted and so we rely on our friends to accept us and charities to be our voice.

Thank you ladies you raised £33.10 for MYELOPATHY.ORG.  Thank you Paula for your patience, I’m getting disruptive in my old age, but it’s because you’re my friend that I had the confidence to butt in.

 

 

 

 

 

 

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It’s all in your head dear part 4

19 October 2018
— Read on youtu.be/LfZOyQjtnfc

my penultimate vlog on me, MYeloPATHy and mental health. Thank you for watching

Slump

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.

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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It

 

 

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.