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 THE MOVIE

I apologise.  When I vlog I don’t play it back.  If I did I’d pull it apart and bin it.  I’m sure it’s repetitive, excuse me if my word selection is poor.  It has been a difficult few weeks.

 

Head Case

 

I’ve been adrift recently.  Absent.  Not myself at all.  I’m in a relationship with a body that won’t compromise…it’s unreliable, unstable, unable to commit.

Of late my symptoms have been erratic.  My pain isn’t unbearable, it’s just constant and it’s spiking irregularly.  I don’t rush for painrelief.  I give it an opportunity to pass but it doesn’t and ten hours later I give in because it’s totally drained me.

My day, every day, starts with pain.  This isn’t a moan it’s just the way it is.   Generally waking up is a positive thing; ask anyone who’s dead.  It’s how my body feels when I wake.  It’s not rested and floppy it’s tightly rigid and the actual bones hurt inside and between the joints.  Every move is painful, it’s a deep hurting that can’t be rubbed better.  I get up slowly, in stages; sitting on the edge of the bed thinking can I do this?  Do I want to? I get up because I have two boys that I like to wave off at the door each morning.  My youngest son is in his last year at school and I love ruffling his hair and calling him stringbean.  My eldest son is always awake and showered before I stir;  it’s his first job and the hours are long and it’s stressful and so I support him by making his lunch.  I don’t have much in common with the boys.  I don’t like sport or the gym but it’s little things like we laugh at dad (husband) having a ‘melt’.  And I call the boys ‘G’. ‘ Yo G, that’s sick G, that’s bare funny G.  It just makes me laugh the slang that creeps into their vocabularly.   Some days my head pain makes it hard for me to handle their bantar or hear their rap and grime tunes and it’s sad the barrier myelopathy creates between me and those I love because I’m not present half the time…physically or mentally.

More and more I wander around the house confused…my brain leading me on a merry dance…did I make tea…did I put sugar in.  So many questions and then I forget to drink the tea. I live in a whirl of confusion; it’s exhausting.  So many things have gone wrong for me lately, my actions are wierd, my memory unreliable. I’ve started to lose confidence….I don’t trust myself with money or banking.  I go to the shop for an onion and come home with an orange?

I’ve fallen three or four times…at night trying to get up independently to go to the loo.   I know how it happens; it takes me so long to get up,  I fall asleep midway and then fall out of bed or off the bed.

Every so often I have a bad day.  Bad in the sense that I feel beat.  It’s never one thing that causes my downturn more a receipe of woes.  Usually I’m so Doris Day I’m annoying.  I genuinely do find enjoyment out of simple things like going to M&S food store or going for coffee.  Then some days I can’t be arsed, as my kids like to say.  Getting showered and dressed is so energy draining.  Ten minutes travelling and pain breaks through my medication. My neck bobbing up and down from our little car’s poor suspension.  My neck toing and froing with accelerating and braking.  Even with my neck brace on it’s guaranteed to set my symptoms off.

I have days when it’s like I’m in remission and so I fling myself at life knowing that it’s a mirage; one blink and it’s gone.

Last Saturday I partied.  It must be strange for people to grasp that one minute I’m walking with my stick and then I’m dancing; carefully and conservatively mostly holding a chair.  I want to grab the dj’s microphone and shout I’ve got spinal cord damage, it affects my central nervous system, yeah I’m dancing but I’m dancing badly! You should have seen me before I had three operations arsehole!  Anyway three dances later my head is like it’s being squeezed by the Hulk and I can’t lift a foot and I’ve only drunk one watered down wine and two bottes of still water all night.  But I had a slow release oxy codone before I went out, two tramadol whilst out then two tramadol every four hours for the next 24 hours.  I was up all night, the pain too much to lie down.  My skin was hot and horribly itchy especially my ears and scalp.  I kept waking up unable to breathe for a terrifying second of two. Wrecked I spent the next day in and out of sleep the pain too horrible to lift my head off the pillow…but I will do it all over again at the next party…because otherwise I’m giving up and not participating in life.  I love dancing…I’m just so bad at it now.  With myeopathy it’s not a question of what you can and can’t do it’s what you’re prepared to do…I will dance therefore I will suffer and it will be self inflicted.

My life is not doom and gloom because I appreciate how privaliged I am to live in a country that is peaceful, to have water and electricity and supermarkets with the shelves filled.  I love my family, my home, my garden, my dogs but sometimes I am overwhelmingly unhappy.  I have no control over how low I feel or when it strikes.  I can’t watch the news.  Every life lost, people going to food banks, gang culture, plastic killing sealife, a gay man beat up outside a club by a cricketer, David Beckham pleading not guilty to speeding and getting off,  strikes a cord.  It’s like I’m living everyone else’s drama as well as my own.  I don’t understand the world I live in anymore and then it feels all too much.

I’ve lived with myelopathy for eight years; I’ve got through three operations all with a smile.  Operations I can do; they have a start and an end, Myelopathy is infinite and the relisation that my life is on a loop overwhelms me.  I will always live with pain, myelopathy will always curtail my activities, it’s a degenerative disease so my symptoms will only worsen.

I wanted to go Ireland; want is an insignificant word…I really, really, really wanted to  go…I had every intention of going.  My family were not so optimistic.  They see how disabled I am.   How my legs are so heavy I walk to the toilet like a Hammer House of Horror zombie.  They’ve picked me up off the floor, seen me pop pills and drink tea through a straw because I can’t move my head the merest fraction.  They felt my mum’s seaside location was too challenging; I’d have to sleep on the sofa because I can’t do stairs, it’s not wheelchair friendly, it can’t guarantee a hot climate, I’d mainly be housebound and my symptoms, like arthritis, are excertabed by damp, cold, wind and fairy dust! But I had this vision of walking to Whiting Bay.  Listening to the tide roll in.  Smelling seaweed…and I couldn’t let it go…thinking about it got me down.  I have this vision of retiring to the little house on the clifftop…it’s a dream I refuse to give up.

When you’re known to your family and friends as the glass half full and yolo it’s hard to admit that you are seriously struggling with negative energy.  I smile less these days.  I haven’t blogged in months because I don’t want to drag anyone under the bus with me.  I feel bitter that I was so near to getting my book published but my physical health and my mental agility has slowed me down. Not going to Ireland was the last straw.  I felt trapped in my home, every unwashed plate left at the sink I wanted to smash, every hour that went by without an offer of tea I wanted to scream.  I felt like I was losing it and that myelopathy was sucking the life right out of me.  I wanted to go to Heathrow and get the first plane anywhere but even if I got a cab there I wouldn’t be able to get out of it independently!   I won’t explain how dark my thoughts were, dark enough that they scared me and so I talked to my doctor.

My doctor recognised that it was a culmination of things getting me down: my mental agility, my weight, pain, how restrictive my smptoms make things, how housebound I’ve become.  She reffered me to a memory clinic which I have since attended and already I feel positive that I’m not going to completely lose the plot.

My husband booked a weeks holiday in Turkey.  We are on a very tight budget, this is a luxury we had not prepared for, we haven’t been on holiday in four years. It wasn’t Ireland but it was the next best thing; a small b&b with a pool, very hot weather and a complete break from everything.  It was for seven days and honestly, I think I needed a month, but coming home it was lovely to see my children.   The house was tidy, Caitlan cooked dinner, we caught up and I felt happy that I had my own tales to recount…usually I listen.

I helped Caitlan pack for her first year at uni. I watched my husband drive my heart, my inspiration, my best friend away but I know Caitlan’s adventures will have me laughing all the way to christmas.  She’d only been in her new kitchen an hour when the fridge door came off in her hands.

I went to bookclub.  Great food, great company.  My watery wine.  A new book selected.  A new date to look forward to.

I’m not saying my melancoly is cured.   My sadness goes too deep for that.  Maybe it’s the start of depression, maybe I’ll suffer long term.  I have been referred for counciling.  I am seeing someone next week about my mental health.  That’s something I embrace because I don’t want to drown in my own misery .  I want to be happy and sing songy and get on my husband’s nerves with my chiperness.  I want to dance with myself in the kitchen.  I want me to be me.

 

Choices

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.