Category Archives: Spirituality

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.

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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.