Category Archives: Spirituality

Intuition or wishful thinking?

As many of you know, I want (need!) to move house and in February was in the middle of purchasing a property when it fell through.  I was absolutely devastated, as I’d been looking for a suitable new home for 5 years and this one had everything I wanted but didn’t ever think I could afford and I’d been working towards securing it for months.

Looking back now, however, the house sale not going ahead was the best thing that could ever have happened to me.  I would have been moving the week before lockdown was announced to a property which needed total renovation.  The plan was for me to live in the one room annexe on the side of the bungalow, with a make-shift kitchen and horrible spider riddled shower room for 2 months while a team of builders made the main house habitable.  But, of course, none of this would have happened due to Covid and I would still be there now, 4½ months later, having had to live with no kitchen or proper bathroom during the pandemic.  The stress would have been unbearable, not least because I would have taken the bed bugs I didn’t know I had with me in my bed frame and would have thought I’d been infested with them at the new house which would have put me off living there forever!

Having put the failed move behind me, I hadn’t really given the bungalow a seconds thought………..until last week, when it popped into my head without bidding.  The thoughts were persistent and I couldn’t work out why I was suddenly obsessed again with the house.

On Saturday, bored with our usual walks, I decided to take Bertie out for his afternoon jollies to a beauty spot 10 miles away and for some reason decided to travel through the village where the bungalow was on the way, just for a peek.  It was just as I had left it and I got the warm, fuzzy feeling I’ve talked about before just driving past.  Weird, and I’ve never felt that way about a house before in my life.

I’m signed up for alerts on Rightmove for suitable bungalows in my area, and on Tuesday received an email about reduced properties.  And there is was, the bungalow!  It had been reduced by £10,000.  It’s almost as if my brain knew something was in the offing the week before and was gearing me up to start thinking again about the house.

One of the reasons the sale fell through was due to issues with the septic tank, which was in a farmer’s field.  So this morning I rang my conveyancer to ask if we’d ever heard back about the easement over the field, which is legally needed when the house is sold.  He didn’t know, but got back to me this afternoon to tell me that the easement was in place so if I wanted to try again to secure the house it was fine.

My next port of call is to contact the builder who I’d lined up to do the renovations, just to see if he’s still available this summer.  His answer will determine whether I still try to buy the house, or not.

I am someone who gets gut feelings about things and when I was younger I used to doubt and ignore them, but as I’ve aged I’ve trusted my intuition much more.  Which is why, when the house purchase fell through, I was so devastated – every instinct was telling me this was going to be my forever home, yet everything went belly up!  It really shook me and made me question whether I’d ever had intuition at all, or had it just been wishful thinking?

But the bungalow wasn’t even on my radar last week – it just popped into my brain and refused to leave.  Then literally a few days later I get an email saying the vendor had reduced the price, which makes me hope that he will be open to negotiation now where he wasn’t back in February.  It’s all just too coincidental to be chance.

So I will be making another offer.  And if it’s meant to be it will be accepted.  And if it’s not meant to be it won’t.  And if it’s not, maybe it’s just been filling a gap while the right house becomes available.

 

 

 

 

Watching for the signs

When I adopted Bertie in 2008 I felt like it was meant to be.  I looked at loads of dogs online in local rescue centres but the signs that he was The One shouted at me loud and clear.  For a start he has the same name as my Dad – I know, freaky!  And for seconds he has the same birthday as my Nanna.  The Universe couldn’t have been clearer if he’d had He’s Yours tattooed on his cute, furry forehead.

I moved into my current house in 2004.  I’d been looking for the right property for 5 lonnnng years, but due to my health problems I had strict criteria.  It had to be within a 7 mile radius of my parents – tick.  Outdoor space but no lawn to mow as I couldn’t cope – tick.  Two bedrooms – tick.  A good sized bathroom with a separate shower – tick.  And I longed for a separate utility room – tick.  But there were things I was uneasy about.  I absolutely didn’t want to live by a road due to my brain issues and need to rest, and this house was literally 4 feet away from the curbside. I’d also desperately wanted a view and this house really didn’t have one.  I would have ummmed and ahhhhhd over buying it, if it weren’t for 2 things: when I’d lain in bed dreaming about my next house, for some reason I simply knew it would contain a sink in the bedroom and tongue & groove panelling in the bathroom rather than tiles.  Don’t ask me how I knew this, I just did.  And sure enough my current house has both.   It’s weird when you think about it, because what house these days has a sink in the bedroom?  An en suite maybe, but just a sink?!  And to add icing to the cake, the postcode for the property is my parents’ initials 😮

Having said all that, I didn’t get the warm and fuzzies over my current house.  It felt like a compromise being next to the road and having no view and even when I bought it I felt a bit flat.  My intuition knew it was the right house for me at the time, but not for all time.   And although on the whole I’ve been really happy living in my little cottage for the past 15 years, here I am moving on.

Like last time I’ve been looking for a bungalow now for 5 lonnnnng years and had said internally to myself that if something hadn’t come up by Xmas I was going to stop searching and try and be happy where I am.  And, blow-me-over-with-a-feather, I had my offer accepted on the house I’m buying 4 days before Christmas – sign number 1.

The house I’m moving to is in a tiny hamlet that I’d never been to in my life before, yet when I drove through it to view the property I genuinely got the warm and fuzzies and a word kept jumping into my mind in capital letters: HOME.  Even now when I approach the village I suddenly feel happy for no reason.  Sign number 2.

I desperately wanted a large room to use as a photography studio and it never crossed my mind I’d find a bungalow with a separate annexe.  Sign number 3.

I have a gorgeous view – tick.  The house is on a slight hill and set well back from the road – tick.  In fact, all those years ago when I was living in town and dreaming of living in the country what I ideally wanted was a detached house with a private, south facing garden, a view and to have space but not be totally isolated from neighbours and as it turns out my Dad knows the neighbour opposite, who came over to introduce himself and seems lovely.  Tick, tick, tick and tick!

We have “gut feelings” about things and voices whisper to us that we simply don’t listen to.  We push thoughts away because our reason tells us we’re being ridiculous, when we really should be trusting our intuition more.  We should take heed of the signs and not poo pooh them as wishful thinking.  As I get older, and more confident in who I am as a person, I listen to other people less and my inner self more.  Which isn’t to say this move will be easy or stress free.  In fact, at 3.30am this morning I woke having a panic attack at what I’m about to take on and what could go wrong and I remember lying in bed on the first night in my little cottage and wondering what the fuck I’d done!  Following our dreams takes courage and a leap of faith but when the signs are there we know everything will turn out OK in the end.

 

 

 

Bucket List

Bucket Lists, ie a list of stuff you want to do before you die, are popular at the moment.  I look at them and wonder when people list “swim with dolphins” or “jump out of a plane” exactly what kind of hole jumping 10,000 feet into thin air is going to fill in their lives.   How empty can a life be that swimming with fish is the pinnacle of achievement?

I seem to think very differently to the majority of people.  I don’t understand sport for example.  The current obsession with the Olympics baffles me.  That someone would spend their lives training to the point of exhaustion to chuck a metal ball on a bit of string to see how far it will go.  Or spend their lives running round and round and round a track in circles or chasing a ball of air up and down a pitch.  It’s all just so……..pointless.

Someone posted a different kind of bucket list on Facebook recently, which at least has a bit more thought behind it but his bucket list seems like really hard work to me.  It feels like a shed load of pressure to be perfect, instead of accepting our flaws and loving ourselves with all our imperfections.

I thought long and hard about what I would put on my bucket list and I couldn’t think of anything.  That’s because I already do the things which bring me the greatest joy every day.  I gaze into my adoring dog’s eyes and feel love so profound it makes me tearful.  I get lost in nature with my camera, watching with fascination the soaring life of birds and the hard-working toil of insects.  I marvel over the cycle of birth, life and death and watch with awe the changing faces of the seasons.  I am appreciative of the food I eat and the warm bed I sleep in at night.  I set myself challenges and goals every day, whether it’s to take a better photo, or write a paragraph of my book or to do something to help my parents, even when I don’t feel like doing any of it.  I appreciate my friends and I try to be kind.

We in the developed world are so spoiled.  We constantly seek out new thrills, new stuff to be bought, new horizons, new adventures…….and forget we already have everything that truly means anything.

If you wake up every morning with a passion for the day ahead, with gratitude at what you have not regret at what you don’t, and joy that you get to spend another day on this wonderful planet of ours then I’m not sure what else there is to a well lived life.  My bucket is already full.

“Go placidly amid the noise and the haste, and remember what peace there may be in silence.”  Max Ehrmann, Desiderata.

Chosing joy

I’m a bit reluctant to write this post.  On my really bad days if anyone says to me it’s not the situation but the reaction to the situation that’s important I want to poke their eyes out with a blunt stick.  You cannot feel joy when you are sleep deprived, in relentless pain and sick to the very pit of your stomach, or when you can’t pay your electric bill.  You are miserable and rightly so.

Having said all that, I’m happier in my life now than I have ever been so I wanted to share with you why that might be, bearing in mind most people would say my life pretty much sucks.

After 6 years of being bedridden with ME I just stopped fighting it.  I stopped looking for the non-existent miracle cure, I stopped being frustrated, I stopped yearning for my old life.  It hadn’t helped and just made me depressed on top of already being sick as a dog.  Instead I accepted I would be horrendously ill for the rest of my life, however short or long that may be, and started trying to find some joy in each day. If I was going to die I didn’t want my last days/months on earth to be crap.

I started playing the “what if this were my last day on earth” game and now I play it every day.  If this were my last day to be alive  I would be ignoring my sickness and my pain and I would be relishing everything – a beautiful sunset, my best mate ringing for a chat, a cuddle from my dog, a soak in a hot bath.  If this were my Mum’s last day on earth I’d relish her voice, her smell, her friendship, her little mannerisms.  Try it.  It really makes you appreciative.

I also needed a purpose, some reason to open my eyes every morning.  So I volunteered for an ME charity from my bed and volunteered to help with an online ME support group.  I could only do ten minutes here and there but I felt I was contributing to the world and helping other people through my experience of chronic illness.  My suffering stopped being meaningless and started being meaningful.

As far as was humanly possible I stopped dwelling on the negative.  I stopped listing in my head all the things which were wrong and started listing all the things which were right.  Every time a negative thought came into my mind I replaced it with a positive: I’m in pain became I’m thankful for my hot water bottle.  I’m lonely became I’m thankful for my dog.  I’m skint became I’m thankful for my beautiful home.  I feel dreadful became I’m thankful for my peaceful country, my peaceful home, my security – can you imagine being sick in Syria or the Congo?  It works much of the time and the times it doesn’t I allow myself to wallow in self pity – it’s impossible to be thankful when you have your head down the toilet vomiting.

The other thing which has helped enormously is to live in the moment.  It’s a much over-used phrase but really stop and think about it.  My biggest fear is having a reaction to something I’ve eaten, and I have to eat at least 3 times a day.  That’s a lot of anxiety.  When I start to feel panicky about an upcoming meal I tell myself this “are you having a reaction now?  No.  Enjoy the moment.  Will worrying yourself stupid about having a reaction stop a reaction from happening?  No.  So quit worrying.  And if you have a reaction you’ll cope.  You have before.  It will eventually settle.”

When your life is literally down the toilet it’s easy to play the “when x, y or z happens I’ll be happy” game.  When I lose/gain 20lbs I’ll be happy.  When I find Mr Right I’ll be happy.  When my pain is under control I’ll be happy.  When I can eat chocolate again I’ll be happy.  When I’m over the menopause I’ll be happy.  When I’m well I’ll be happy”  And all the while your life ticks by and you’re miserable.

I have a friend who has a well paid job working in the one of the most beautiful places on earth.  She has no responsibilities: no children (she never wanted any) and her parents live 300 miles away so she doesn’t have to take care of them.  She works from home so no soul-destroying hour long commute on a packed underground train and, although she does travel a fair bit with her job, it’s in the Lake District with some of the most beautiful scenery in the country.  She is (apart from a few minor niggles) healthy.  She has 3 months of holidays a year, where she takes off to the wilderness for total peace and tranquility surrounded by nature and wildlife.  Most people would kill for her life yet she is depressed and constantly asks me “what’s the point to it all”?  I want to shake her.  If, tomorrow, she’s killed in a car accident or gets diagnosed with terminal cancer her last 5 years on earth would have been miserable.  Why would you waste your life like that?!

I’ve found that, because I’m ill, people want to share their ill-health with me because they’re fed up and think I’ll be sympathetic.  Er, nope.  Are you dead yet, cos if you’re not I can’t work out why you’re moaning.  I’m happier than 90% of the people I know and everyone comments on how passionate and excited about life I appear to be.  That’s because I am excited about life – it’s the only one I’ve got and it fucking beats being dead.

Today is all there is.  Fill it with joy.  Fill it with gratitude.  Fill it with purpose, passion and meaning.  Don’t sweat the small stuff.  Stop worrying about things over which you have no control.  Embrace life – it’s the only one you have.

One last day

I’m going to go off on a tangent unrelated to my health and this post might seem controversial, but as you all know I just say what I think based on my own experiences.

When I had severe ME in my late twenties I was told on two occasions that I was critically ill and might not make it through the night.  I’ve also suffered the loss of several friends and family members as outlined in this post.  For many years I’ve been acutely aware that life is fragile and it can be taken away at any moment.  It’s had a profound effect on how I live.

I love to watch Mediums on TV, like John Edward, but am amazed at how many times the people he’s reading are in tears saying “I didn’t get to say goodbye”.  While I totally understand this in very unexpected deaths, eg that of a child or younger adult, I’ve never really understood it when it comes to older people.  The second my parents reached 60 I started to prepare myself to lose them.   None of us live forever and the one certainty in life is that we’re all going to die.

If you have something to say to an older relative get it said.  I don’t really do gushy, but I always buy my parents lovely birthday and Christmas cards with verses in which tell them how much I appreciate and love them.  I also show how much I love them every day in everything I do for them.  How much more time do you think you’re going to have?  Every day when you say goodbye to an older relative realize it could be the last time.   If you don’t have the relationship you would like, fix it or let it go.  I let the relationship with my biological Father go when I was in my twenties, I’m at peace with my decision, and if he died tomorrow it wouldn’t even register with me.  Have no regrets that are going to haunt you when they’re gone.

My Facebook feed is full of people saying how much they miss their parents.  Every Mother’s Day, Father’s Day, anniversary of a death and birthday they post how much they are thinking about their departed relative.  I just don’t get this need to share grief with the entire universe.  Your parents are fundamentally the most important people in your life.  What do you think is going to happen when they die?  You will miss them every second of the rest of your life.  You will never be the same again.  Why do you need to tell everyone you know this?  Isn’t it bloody obvious?

I’ve been to lots of funerals.  The friends and relatives stand there and give glowing eulogies telling us all how special their loved one was and how much they meant to them.  I wonder just how many actually told the dead person while they were still here?  I really don’t think I’ll have anything to say at my Mum’s funeral.  She already knows how much she means to me.  We  often reminisce about her childhood and my childhood and our life experiences.  For sure I’m not going to stand there and make her out to be some kind of Saint because that she most certainly is not.  She’s a complex, flawed human being who’s made a ton of mistakes and some very poor choices, many of which have impacted my life in extremely negative and destructive ways.  Which doesn’t mean I don’t love her and won’t miss her every second of the rest of my life.  I just don’t need to tell a church full of people this because it’s only relevant to me and my Mum.

We all seem to sleepwalk through life and I don’t get it.  We always think there’s going to be a tomorrow.  A better day.  A day to sort things out.  But life isn’t like that.  Today is all there is.  Live it like it’s your last, or someone else’s last, because one day it will be.

 

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.

 

 

 

 

 

 

 

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