Tag Archives: spirituality

Divine Intervention

I am not religious.  I was brought up in the Christian Church but in my late teens decided religion is not for me.  I’m not saying there is no God.  I’m also not saying there is a God.  Just that, for me, Church is nowhere I need to be.

I’m also not particularly spiritual.  It’s great as a concept, and as I’ve said many times I watch Oprah’s Soul Sunday programmes and feel a warm fuzzy glow afterwards.  Which lasts all of five minutes before I remember it’s way too simplistic a solution for someone in a situation such as mine.  Asking the Universe to get my laundry done doesn’t get my laundry done.

I am fascinated by life after death though – we all wish it existed.  I’m an avid watcher of programmes by Mediums such as John Edward (even travelled 100 miles to see him live when he came to England) and Teresa Caputo.  But I’m still not convinced.  When I hear Teresa say things like “when you didn’t die in that car crash it was your Mum watching over you from the Other Side” I think to myself what about all the people who do die in car crashes?  Does that mean their dead relatives don’t love them and aren’t watching over them from the Other Side?!

I had a friend whose Dad hung himself in the garage when my friend was just a child.  40 years later my friend, too, hung himself in the garage after a long struggle with depression.  His poor Mum and sister had to face that twice.  Surely if his Dad could have intervened to help from the Other Side he would have.

Having said all that things have happened in my life that, on the surface, look unexplainable.  As you know, I’m having a rough time of it at the moment.  At the weekend I was just so exhausted from the relentlessness of the struggle I said out loud “if anyone out there is listening, please just let something nice happen to me for a change.  Something huge that will change my life for the better and bring me some joy!”  And literally the next day I received an email saying 3 of my photographs had been accepted by iStock, following a competition I entered before Christmas and had forgotten about!  iStock is owned by Getty Images, the number one stock photo company in the world, and it’s really quite hard to get accepted by them.  OK, so I’m only going to make a few dollars on each picture so it’s not quite the monumental life changing event I asked for but it still made my day.

There is a flip side to events like these, however.  I’ve always tried to do something useful with my life.  I’ve gone through a LOT one way and another and the reason I blog, write media articles and talk about my experiences is to share the things I’ve learned with others in a similar situation.  If my life’s purpose is to help others through my struggles then I try very hard to fulfill that purpose.  Everyone tells me I should write a book, and I’d love to.  But I just don’t feel well enough.  By the time I’ve cooked, eaten, bathed, walked the dog, looked after my parents and seen to the running of my home there is not an ounce of energy or brain power left.  I’ve tried to make a bargain with God and the Universe: stop clobbering me with new crises and symptoms to deal with, let me be well enough to simply think straight and I’ll write the damned book.  Or let me win the lotto, so’s I can employ people to cook, clean and run my home then I’d have the energy to write.   But, if the past few months are anything to go by it’s pretty obvious God and the Universe aren’t listening.

In difficult times it’s human to look for Divine help and intervention.  To bargain with God and the Universe.  It’s easier to cope if you think some loving energy force is watching over you, rather than the fact that actually kid you’re all on your own.

As I’ve said before, nothing has fallen in my lap from the heavens.  Everything good that’s ever happened to me has been the result of my own sheer hard work and determination.  Even having my photos accepted happened because I spend hours studying and perfecting my craft, freezing my butt off outside taking pictures every day of my life, and I spent hours making sure my competition entries were immaculate.  It didn’t just happen willy nilly.  Things which happen by pure luck or chance are events I would be more inclined to believe were due to some kind of Divine intervention.  Only they never happen to me.

I still hope we travel on to somewhere better when this life is over.  I’ve found my time here on earth really hard going and I’m ready for a rest.  And I hope that, if there are any lessons to be learned I’m learning them, because I damned sure don’t want to have to pass this way again.

 

 

 

 

 

 

 

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What’s it all about Alfie?

I find our modern Western culture baffling.  I think I’ve always found it baffling, but when I was younger I couldn’t put my baffled-ness into thought or word.

Our obsession with youth baffles me.  Young people are idiots.  Young men drive like lunatics and can’t think past the end of their penises.  Young women are unpredictable hormonal time bombs who can’t control their emotions and often have zero self worth.  Who the hell wants to be 20 – it’s torture!  Yes, we wrinkle as we age and don’t look as pretty as when we’re young.  So what?!  I’m 46, who is it I’m trying to impress?  Middle aged people who have had plastic surgery look like freaky Cabbage Patch dolls – don’t any of them own mirrors?!  To me, there is nothing sexier than a greying wrinkling middle-aged man, who’s happy in his skin, has lived and loved and has a twinkle in his eye – yes, Hugh Jackman, I’m talking about you 😉

Our obsession with material wealth also baffles me.  Did Jesus not change the world?  Did Gandhi not change his country?  Did Mother Theresa not heal the sick?  Did any of them live in gated communities, drive a BMW or own 300 pairs of Manolo Blahniks?  Er, no.  In fact, whenever I see anyone driving round in a £40,000 car I just think to myself “what a knob!” – after all a Fiat Uno gets you from A to B in the same amount of time for £35,000 less cash.

Fashion totally baffles me.  I’m curvy, have middle-aged spread and look stupid in skinny jeans yet I can’t find any other pair of jeans in the shops because some idiot-who-needs-to-find-themselves-a-proper-job decided last year that skinny jeans were “in”.   And the same idiot-who-needs-to-find-themselves-a-proper-job also decided that this year yellow was “in”, despite the fact I look like a heroin addict in yellow.  We all dress alike, then try and customise the clothes with accessories to look different from each other.  It’s absolutely bonkers and the reason I wear very little other than my pjs, jeans/shorts/polo-neck sweater/t-shirt and my wellies/trainers.

What does a Nike logo, collecting fine bone china, driving a Mercedes with leather upholstery and having a wrinkle-free forehead when you’re 50 tell you about a person?  Does it tell you whether they’re kind, or funny, or intelligent, or compassionate?  Does it tell you whether they’ll make a loyal friend, a loving partner or a protective parent?  Of course not.  And really these are the only things that are important.

When you’ve “seen the light” on what makes us happy and what’s truly important it’s difficult to understand why other people can’t see it too.  The lunacy of false eyelashes, nails painted with union jacks, tattoos (WTF are they about?), logos (who the hell cares whether your bag is Channel?!), gadgets (the only time to get a new TV is when yours no longer has a picture, and the only time to get a new mobile phone is when you drop yours down the loo and it will no longer switch on).  Get a LIFE developed world and stop trying to buy/surgically enhance yourself happy – I have big news for you, it doesn’t work.

As I mentioned in a recent blog post, last weekend I visited a local bluebell wood.  The sun was shining, the birds were singing, the butterflies were collecting nectar and the scent from the flowers was heavenly.  I pottered about for an hour then decided to ring my Mum (well done O2 for having mobile reception in the middle of absolutely nowhere 😉 ).  This was our conversation:

“Hello it’s me”.
“Hello” (with surprise as she knew I was out taking photos) “is everything alright?”
“That’s why I’m ringing.  I am having an absolutely awesome afternoon.  I know the word awesome is over-used but I’m using it anyway.  It’s awesome here and I wish you could share it with me.  That’s all I wanted to say.”

My afternoon in the bluebell woods didn’t cost me a penny but it was priceless.  The flowers didn’t care that I have a muffin top and my arse is heading south – and neither do I!

Photo of bluebell woods

Photo of bluebells

Photo of Bluebell wood

Photo of Bluebells

Photo of Bluebell wood

 

 

 

 

 

Maslow’s Hierarchy of Needs

We’re all individual and cope differently with chronic pain and illness.  Our coping strategies are complex and will depend on our innate personalities, upbringing, beliefs, past life events and current living arrangements.  I sometimes beat myself up that I get fed up, angry, frustrated and tearful about my life where other people with chronic illness seem to “rise above” their situation on a cloud of calm, accepting gratitude. That was, I did beat myself up until I realized that the people who are further along the path to self-actualization to me live very different lives to me.

I learned at school about Malow’s Hierarchy of Needs, which looks at the motivations behind people’s behaviours.  Maslow’s original work proposed 5 stages to reaching self-actualization:

1. Biological and Physiological needs – air, food, drink, shelter, warmth, sex, sleep.

2. Safety needs – protection from elements, security, order, law, limits, stability, freedom from fear.

3. Social Needs – belongingness, affection and love from work group, family, friends, romantic relationships.

4. Esteem needs – achievement, mastery, independence, status, dominance, prestige, self-respect, respect from others.

5. Self-Actualization needs – realizing personal potential, self-fulfillment, seeking personal growth and peak experiences.

Only when our lower level basic needs (eg. food, shelter) are satisfied can we progress to meet higher level growth needs (eg. achievement, status).   And once these needs have been reasonably satisfied we may be able to move on to reach the highest level called self-actualization.

Christopher Reeve, who became quadriplegic following a horse riding accident, was truly inspirational, meeting the challenge of his new life with positivity, determination and a passion to improve the plight of others with spinal injuries.  He had a loving wife of many years, healthy children, a beautiful million dollar home, the best medical advice in the country, hand-picked carers, all the latest equipment to aid his disabilities and support from highly influential friends who helped him fund raise to achieve his goals.  I often wonder how he would have faced the challenge of his new life if his wife had left him, he was broke, lost his home and had to live in a rented house in a poor neighbourhood, had state carers who visited him for 15 minutes a day and who didn’t have time to see to even his most basic needs, had no health insurance, had rubbish doctors and his friends and family abandoned him in droves.

I admit to getting irked with Oprah when she harps on about self-actualization like it’s achieveable for all.  It’s really not.  Oprah had a tough life, but she managed to escape her childhood.  What if she hadn’t?  What if she’d been illiterate and unemployable, or sick and unemployable, and was still living a dirt poor life in the town where she was born?  Would she still be the person she is today under those circumstances?  I’m guessing not.

From comments made on my blog it seems to me that the most important factor in coping well with chronic pain and illness is whether or not you live alone.  The more self-actualized amongst us all appear to be married or living with parents or other care-givers.  Their basic needs are met.  They have food, shelter, love, companionship, care and financial security through another’s ability to work.  They don’t have to worry where their next meal is coming from or the fact they’ve no clean undies because they’ve been too sick to do the laundry (having spent 3 days in the same knickers last week, trust me when I say it’s truly icky).  Having our basic needs met makes the difference between living well with pain and illness and merely existing.

I take my hat off to all those living alone yet still managing to live life with passion, humour, grace, fortitude, determination and empathy for others.  You are stronger than the Oprahs and the Christopher Reeves of the world and I, for one, salute you.

Thoughts on Suicide

I apologise in advance if this subject is upsetting or goes against some of my reader’s religious beliefs, but it’s a much under-discussed topic and one which is close to my heart having lost a childhood friend to suicide in 2012 (he was one of the lead officers in the mass killing which took place in Cumbria in 2010 and we think this triggered Post Traumatic Stress Disorder).  Some of my other friends have also lost chronically ill friends to suicide as their lives, and pain, had become intolerable.  Please don’t read this post if you think it might distress you because I am going to be honest about the situation.

I think about suicide a lot.  It’s my get-out clause.  There are days when my life seems so overwhelming, so difficult, so punishing that I don’t think I can bear it a second longer.  When I haven’t slept for days, when I’m sick to my stomach, when every part of my body hurts and when I know it’s never going to get any better.  When I’m so lonely and in need of physical contact and comfort I want to literally scream out loud.  When I’m absolutely overwhelmed with seeing to my home, paperwork, laundry, food, shopping and caring for my parents, despite being so ill and exhausted I can barely put one foot past the other, that just breathing is simply too much.

I’m not depressed.  I’m not lying here thinking irrational black thoughts or catastrophizing the situation.  I’m just at the end of my physical and emotional resources and need some peace.

For someone who is almost totally drug allergic there is no escape from the physical suffering which constitutes my daily life.  There is no popping a pain-killer, or dosing up on morphine, for a brief window of respite from the physical pain.  There are no sleeping pills to knock you out for 10 hours so you can get some rest.  There are no drugs to make you poop when you haven’t been to the loo for a week, or to stop you from feeling sick to your stomach and retching your guts up.  It’s gruelling beyond belief.  And no matter how ill I am I still have to do the laundry, buy and prepare food, bathe, pay the bills and deal with all the other problems life throws at you like my laptop conking out or the drains overflowing in all the recent rain.

There are three things that stop me from taking my own life.  At times these seem like a blessing, and at others like a heavy burden which keeps me bound to this life with no means of escape.  The first are my parents – they simply cannot manage without me and I couldn’t put them through the trauma of my death.  The second is my little rescue dog – his first owner died and he is incredibly emotionally fragile and clingy and I’ve no idea what losing me and ending up back in rescue would do to his psyche.  If I ever did kill myself I’m fairly sure I’d take my dog with me.  The third is hope: hope that tomorrow will be a better day, that I might not be quite so tired, or in quite as much pain, or feel quite so sick, or that Prince Charming will come a-knocking at my door.

I think about suicide quite rationally.  I think about methods, which are tricky when you can’t just down a bottle of vodka and take a handful of barbiturates – let’s face it, my method is going to have to be a bit more brutal than falling asleep high on drink and drugs.  I have a Will.  I have a file with details of all my finances, internet passwords, and details of my funeral all laid out so that my Executors and Solicitor will know my wishes and be able to see to my ‘estate’.  When I say I’ve thought about suicide, I mean I’ve really thought about it.

I rage against God that if he were a kind, compassionate Being he’d just let me die in my sleep one night.  So far he’s not been listening: I’ve found he doesn’t listen to me much, probably because I don’t actually believe He exists.  Some days I hate Him for not listening, and other days I think I’m lucky He doesn’t exist and isn’t listening because then what would happen to my parents and my dog? (yes, I know this is contradictory, but then I think the word Contradictory sums me up quite well and should be engraved on my headstone 😉 ).

Having already lived for 20 years with chronic illness I know, for sure, that I can’t live another 30 with this level of physical, mental and emotional pain and suffering.  And I know, for sure, that when my parents and little dog are dead there will be nothing keeping me here.  To have the choice of ending my life is comforting to me and something I hold on to, ironically, like a lifeline.

The Saint

The wonderful Toni Bernhard posted a list recently of films she likes that depict disability.  I’ve seen most of the movies she shared but the one which impacted me the most was a film called My Left Foot which tells the true story of a man born with extreme cerebral palsy, whose ability to communicate was severely impaired and who could only move his left foot.

The thing that resonates with me most about this film is that Christy is a real human being.  Really real.  He swears, he drinks and he’s interested in sex.  He shouts and tells his Carers to “fuck off!”.  A lot.  He is not grateful, he is not spiritual………..he is human.  He gets frustrated, and pissed off, and bored, and lonely, and angry just like the rest of us.  He is not gentle, or sweet, or saintly.  He’s complex, passionate and at times really mischievous.  And I like him!

Why is it we think disabled or sick people shouldn’t have any negative emotions?  That we should be eternally grateful for everything that’s done for us, never get frustrated, never complain and never shout at those we love?  I was obviously playing truant the day God gave out halos the same time he gave out diseases.

The same is true of the elderly – the second they reach 65 older people are supposed to turn into sweet old Grannies and Grandpas who sit on rockers on the porch all day smiling angelically at passers-by.  This memo has not reached my Mum, who can swear like a navvy and be really cantankerous.  She also likes her daily glass of vodka (bugger the fact she’s on 16 pills a day and shouldn’t be touching alcohol), gets irritated that we’re all trying to help her and wishes we’d sod off and give her some peace and quiet every now and again!  She’d only been home 24 hours before her and my Dad fell out (she was grumpy because she was exhausted and ill, he was grumpy because he’s exhausted and stressed) and I had to intervene to calm them both down by sending my Dad out to walk my dog (he’s an outdoors enthusiast) and packing my Mum off to bed for a nap 😉 .

The thing about Christy Brown is that it was his very passion, his irascibility, his raging-against-injustice nature that gave him the fire to become an acclaimed writer, painter and poet using nothing but his left foot.  It is often those who are, on the surface, prickly and stubborn and “difficult” who go on to achieve great things despite overwhelming odds and leave a legacy to the world which survives long after their death.

Joy

Yes, I know this title is strange coming from me and all the whinging I do, but I’m going to attempt to tackle it anyway even though I’m so brain fogged I don’t know what day of the week it is 😉

I always thought I wasn’t a naturally joyful person.  Other people seemed to be happy and I used to look at them and wonder what true happiness felt like.  As a child I didn’t feel like I fitted in.  I suffered from untreated clinical depression, had only one close friend, looked for love in all the wrong places, loathed school despite being highly academic and just felt alone and adrift in a world which made little sense to me.  I found childhood confusing, joyless and isolating.

My saving grace is that I come from a northern working class family.  Witty banter is the order of the day and, in amongst the daily rows and occasional plate throwing, there was a LOT of sarcastic humour in our household.  Think Only Fools & Horses but set in rural Cumbria and you’ll get the drift.  I’ve always gotten along with northern men better than anyone else alive, simply because of our shared sense of humour which is uniquely cultural and I think funny as hell 😉  I also swear.  A lot.  And I LIKE it.

santa

Becoming an adult was a revelation to me.  I left home at the first opportunity (I love my parents, truly, but they invented the words toxic and dysfunctional) and slowly began to discover who I was.  One of the first things I did was become vegetarian.  Being from a working class family, and living surrounded by farmers, in 1990 this was considered totally cuckoo. Looking back I’ve no idea what I survived on because no-one had heard of kidney beans, chickpeas, tofu or Quorn and lentils were only eaten by hippies 😉  But I do know that for the first time in my life I started to enjoy my food – until then I’d lived off Rice Krispies, Ready Brek, toast and mince.  As a child I simply didn’t like food and I know my parents used to worry themselves stupid because I just didn’t eat. I’m convinced now the reason was that every cell in my body rejected eating animal flesh.

Fast forward a few years into my early twenties.  I’d been diagnosed with ME by then, and had been severely affected and bedridden for about 18 months, when I dumped my long term boyfriend.  Everyone was shocked and my Mother thought I’d totally lost the plot.  He was an ex-pro footballer, who later became an Editor for Sky news.  He was attractive, public school educated, had a degree, was impeccably mannered, from a well respected family and he was genuinely my best friend.  He also flirted with anything that moved, which made me feel totally worthless.  He was looks orientated, and let me know quick sharp if I gained so much as 3 lbs.  He was critical of my clothing choices – I think people who buy designer gear are idiots, he liked hand made Italian shoes and bespoke suits.  He was a snob who cared what everyone else thought about him, and I think all people are equal and couldn’t give a rat’s ass what people think of me.  He couldn’t cope in any way with my illness – he could brag about dating a model, but he couldn’t brag about dating a sick girl.  He didn’t make me feel special.  I wasn’t good enough.  And I knew I was special.  And I knew I was good enough – sickness and all.  So I chucked him and have never regretted it for a second even though it meant I was to be alone for the next two decades.

I lay in my sick bed for the best part of 10 years.  You can’t hide from yourself.  You have a lot of time to reflect and to truly learn who you are warts and all.  Being that ill has little going for it, but one of its greatest gifts is that I now have an honest, authentic, relationship with myself first and foremost.  I realised that society’s ideas of what makes a person happy doesn’t make me happy and that had been my problem from the get go.

  • I may be mensa level intelligent, but I am not career orientated.
  • I am not driven by money in any way (all my friends tell me I shouldn’t put my low histamine recipes up on this blog for free, but should do a book and charge – I can’t think of anything that would make me feel less authentic and it will never happen).
  • I may be extrovert in some situations (I’m the first person on the dance floor in a night club, even though I’m stone cold sober), but I am innately introvert and happiest when alone or in the company of just one other person (thank God, given my circumstance).  This occasionally makes me lonely, but not as lonely as I feel in a room full of people!
  • I have no need for shallow relationships, which is why I loathe going to parties or having to make small talk, and may only have 2 real friends in the world, but they are GREAT friends who know everything about me and like me anyway.
  • I see no value in ‘stuff’.  I rarely buy clothes.  I barely possess any ornaments or nick naks.  I love my home (a product of being homeless for 2 years as a child), but it’s clutter-free, practical and functional – it’s not a home if you can’t walk about in your muddy wellies and don’t find dog hair in your bed 😉  I hold on to my gadgets until they literally fall apart (I still don’t possess a smart phone and see no need to own one).

The things that give me greatest joy were not encouraged in me as a child.  I love nature, being out-doors, animals, photography, gardening, being creative (whether that’s interior design or crocheting) all of which were considered unimportant as they weren’t academic.  And because I was so bright at school I was constantly pushed towards academia, which made me stressed and miserable.

I realised as a child that other children with issues naturally gravitated towards me – all my close friends had miserable home lives, as I did, and looked on me to listen to their problems and provide answers (it was often said I was an “old soul”).  My Mum told me, however, that I was too open with people and “said too much”, so even my gift of communication and empathy was seen as a negative and I was made to feel bad about it.  Consequently I closed down.  When I became ill, however, I realised that so few people were writing about what being sick was truly like that I started writing articles, taking part in forums, and eventually blogging about my experiences and realised that in allowing people to see my vulnerability I actually felt stronger through our shared journeys.

Before becoming ill I suffered from clinical depression virtually my whole life.  Since getting sick I’m no longer clinically depressed.  Which, when you think about it, is amazing.  I had it all and was unfulfilled, then I lost it all and my life became innately richer!  I’m not saying I don’t have times where I’m utterly miserable, but unhappiness is a natural emotion – depression is a whole other ball game.  When I was well I was surrounded by ‘friends’ but was stressed and lonely.  Now I’m isolated but happier and more at peace.  Humour, and being able to take the mickey out of life’s absurdities, has saved my sanity on more than one occasion (my step-dad frequently tells me to stop putting arsenic in his coffee because it makes it taste bitter, and I reply “well just die already so I can claim your bloody life insurance, then I won’t have to kill you will I?!”) 😀

Learning who you authentically are, whether or not this fits in with what Society tells you you should be, is the key to contentment.  I’m naturally drawn towards all things spiritual, but haven’t yet tried on any one particular ethos and found it fits.  I love the idea of Buddhism, but find people who are calm and level all the time actually quite irritating if I’m honest (shocker I know!).  I kind’ve want to stick a bomb under their arse just to give them a bit of oomph 😉  I LIKE my emotions: I like being passionate about causes I believe in; I like being angry sometimes; I like being attached to my dog and my friends and my home.  I find the idea of being “outside” of myself, and watching my thoughts without attachment or judgement really really weird – I want to take part in my life, not watch from the sidelines.  To me, being calm all the time would feel like being dead!  So I take bits of many religions and spiritual practices and use the parts which enhance my authentic self.

normal

I’ve never rallied against my illness or ever done the “why me” thing.  So much has happened to me over my life it’s not a question that ever enters my mind.  It just is and I make the best of it.  I live one day at a time – living in either the past or future is futile.  I am, for the most part, content and am happier than I have ever been.

If you find the idea of what makes us happy interesting you might like these two TED talks:

http://www.ted.com/talks/dan_gilbert_asks_why_are_we_happy.html

http://www.ted.com/talks/brene_brown_on_vulnerability.html

Spirituality

There has been a fascinating discussion recently on the Inspire EDS Forum about the spirit/mind/body connection.  The initial poster had been really distressed by her “New Age” friends basically telling her that she was choosing to be sick and asking what she was getting out of it.  They went on to say that if she were more positive in her outlook she would be well.  No wonder she was upset.  I would have gone much further, kicked them in the shins and then asked what they were getting out of feeling pain!

As you may have noticed, I get a bit arsy when people comment on my blog that if only I tried x, y or z (usually food related, though supplements rank right on in there) that I’d be cured.  I’m not sure which part of “genetic connective tissue disorder” they’re not understanding, or the fact it’s my EDS that is causing my mast cell issues.  I’m not sure how x, y or z is going to magically make my tissue, faulty since before birth, suddenly ‘normal’.

quote

Over the years I’ve heard people wax lyrical about the gifts ill-health gives them, and about how lucky they are to have slowed down and are now able to appreciate the little things in life, such as the sound of a wild snail eating.  Me, I don’t like snails – disgusting little creatures that decimate my plants and leave slimy trails all over my patio.  I don’t want to slow down – I’m in my forties not my eighties.  I want to travel, get giggly on cocktails and dance into the early hours on an exotic beach somewhere preferably in the arms of a very tanned, very handsome single man.  I want to eat what I like.  I want to have the energy to help my ill and aging parents out more.   I want a functioning brain.  I want to not live in abject terror of my next food, drug or environmental reaction.  I want to be able to sleep at night.  I want to wear heels.  I want to not be depressed, and angry and anxious.  I want a working memory.  I want a lot of things I know I’ll never have.

Don’t get me wrong, I watch Oprah.  And after her Soul Sunday programmes I feel a warm glow and a renewed sense of living in the moment.  Until I realise my ‘moment’ holds some serious levels of pain, nausea and fear that I’d prefer not to focus on.  Living in the moment is nice, if the moment is nice.  I’m not sure what lessons 35 years of chronic pain is supposed to be teaching me that I haven’t already learned.  Actually, I do know.  Absolutely bloody none.  I am a Warrior who has grown weary of the battle.

I have done the whole Asking the Universe thing.  I wrote down a list which included:

  • money to build assisted housing for single people with severe M.E. (I don’t really need money for myself, although employing a Carer would help no end)
  • a husband (would God have really created me to be the loving, sharing, caring, person I am if he meant me to live alone for my entire life?)
  • and better health (I tried not to be greedy and ask to be cured as I realise this is unrealistic, and in fairness most of my wish for better health is so that I can help my parents and sick friends more).

I haven’t received any of it.  Is that because I didn’t ask properly?  That my intention wasn’t honourable enough?  I have not magically been guided to brilliant caring doctors, or sources of help and support.  I’ve found them because I’ve worked tirelessly at finding them – nothing has landed in my lap from the heavens.  I feel forsaken by God and the Universe and wonder what qualifies one person for divine intervention and not another.

There are lots of platitudes about faith and spirituality that are banded around sick people.  One of my favourites is “what doesn’t kill you makes you stronger”.  What a crock of shit.  My illnesses have, over the years, worn me down to such an extent that death would at times be preferable.  Or there’s the very simple “when life gives you lemons, make lemonade”.  Well that’s me buggered then, being as though citrus fruits are histamine liberators 😉 .  Another favourite is “God doesn’t give you more than you can handle”.  Hmmm, try telling that to Lynn Gilderdale whose pain from years of having M.E. was so intolerable she took her own life.  And my all time Oprah favourite “your thoughts create your reality”.  Maybe my Mom’s Mom’s Mom (or whoever started our chain of genetic defects) meditated on giving her descendants a chronically painful genetic disease while she was pregnant – because that’s what that little pearl of wisdom really means.

Yes, Oprah is a truly amazing, inspiring person.  But to say it’s all down to faith and thought is like suggesting all the millions of poor, black kids the world over who smile their way through abject poverty and go to bed at night faithfully asking God to make their lives better just aren’t doing it quite right.  Or enough.  Which is another crock of shit.

I have not done some horrendous karmic thing in a previous life to be landed with a crappy life this time round.  The karma thing doesn’t even make sense.  A child who is still-born hasn’t had chance to either do something wrong, or to make amends.  It’s a load of utter tosh.

I’m not saying that attitude is unimportant or that our thoughts don’t affect our physical health – I only have to think about starting a new drug and my body physically goes into panic mode, with very real palpitations, sweating, clenched muscles and paralysing anxiety.   But to suggest that thought alone creates reality is laughingly absurd.  My whole childhood I imagined I’d be married, have children, be healthy, and live a happy, sustainable life on a small holding.  I absolutely didn’t imagine a life of abject loneliness, constant pain and suffering, and barely being able to make a bowl of Cornflakes let alone dig an allotment.  This life was the furthest thing from my mind, so how did I attract it into my reality?  The simple answer is, I didn’t.

We need to stop blaming sick people for not being positive enough, or not having enough faith, or not being optimistic enough, or not being mentally strong enough.  No-one would choose this life and I personally would forego all the ‘lessons’ its taught me if I could wind the clock back and have lived 46 healthy years instead of 46 sick ones.

The positive thinking brigade constantly tell us that this moment is a gift, that’s why it’s called the present.  I’d like a refund please, or at the very least a Gift Card so that I could choose a different life!