Tag Archives: purpose

The Need To Create

When I was seeing the Counsellor last Christmas about the situation with my Mum, she said to me “OK, so what creative pursuit do you follow?  I know you do something because you couldn’t have survived your life otherwise and stayed sane.”  Her insight took me aback.  I hadn’t realized how much I rely on my creativity.  It’s a huge distraction, gives me a goal, purpose, challenges and connects me to the world from my bed.

As a child, reading books literally saved my life.  I could lose myself in a story, taking a break from the chaos of my life.  But I’ve also always been artistic, spending hours as a young child drawing and colouring.  My Mum taught me both to knit and crochet when I was really little and I knitted all my doll’s clothes as a kid.  When I went to primary school we had compulsive home economic lessons (while the boy’s did woodwork!) and it was there I was taught to sew, tiny delicate embroidery stitches which took hours to perfect.  I love having the ability to create something out of nothing.

After I left school I was way too busy for hobbies and, reading aside, my creative pursuits were put on the back burner though I used my creativity in other ways, renovating my Victorian house and tarting up old furniture as I couldn’t afford to buy new.  When I became ill, however, all that changed.  I had to find a way of passing the endless tortured hours, so went back to embroidery this time buying kits and making tapestry cushions which took months (sometimes years) to finish as I could only do little bits at a time, and which I gave as gifts for Christmas and birthdays.

A decade on and my joints were becoming ever more painful, so I gave up the embroidery and took up crocheting which I find easier.  I discovered the charity knit-a-square and now regularly make beanie hats and fingerless gloves to help AIDS orphans in Africa.  They also take simple knitted or crocheted squares which they make into blankets – there are a few patterns on their website but if you’re going to send something please only make items they need.  That I can still be useful, help others less fortunate than myself and contribute to the world is incredibly important to me.

Before my MCAS & HIT diagnoses when I was having anaphylactic symptoms every time I ate and living life in a permanent state of palpitations, muscle spasms, nausea and anxiety, I crocheted for hours on end.  I find it very soothing, even if the repetitiveness killed my hands and wrists!  It’s really easy to learn too, with only 1 basic stitch which is modified, so if you fancy giving it a go I’m sure there’s a YouTube video somewhere which would teach you.

Of course, I then discovered photography which I simply love although it is something I can only do on the days I feel well enough to be up and about.  I admit to feeling a bit guilty about my photography, though, because it benefits no-one but me unlike my sewing and crocheting which are given to other people, but we all need something which is just ours and photography has taken the place books used to fill (my brain has been too poorly to read for over twenty years now).  And having taken the photographs I can edit them in bed using Photoshop, brain fog permitting.

When we’re chronically ill we all find individual ways of coping and remaining creative has been a big part of that for me.  It’s also a great distraction and if I make something usable at the end of it then so much the better.  I’ve found that many of my ill friends are creative in some way or another: they make beautiful jewellery, cards which are sold for charity, are crafters or fellow photographers.  That we can make art despite the most dire of circumstances is a testament to our spirits and our innate need to connect with the world, and each other.

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Perspectives

I am woefully sleep deprived and have the brain function of a coma patient today, so apologies for typos and I hope this post makes some sense!

The thing that shocks people who don’t know me and find out I’m ill is that I’m so bubbly, happy and enthusiastic about life.  They wonder how it’s possible to suffer the way I do, and lead such a limited existence, yet still be joyful.  When I really analyze my situation it’s complex and I don’t have a glib answer, so I thought I’d try and explain it in this post.

I was absolutely miserable when I was healthy.  I was not living any kind of authentic life and was striving for what other people strive for, ie advancement in my career, foreign holidays, a nice car, designer clothes, the perfect body and various other material ‘stuff’ which appeared to make other people joyful so I thought should make me joyful.  But it didn’t.  I hated my job, couldn’t care less what kind of car I drove so long as it got me from A to B, ended up ill every time I went abroad and secretly thought anyone who spent a shit load of cash on a Gucci bag just because it said “Gucci” on the front was mental.  I had no idea when I was young what would fulfil me, I just knew that it wasn’t ‘stuff’.

When I first became really ill with M.E. I was also miserable, but it was a totally different kind of misery.  Stripped away was my career, the body beautiful and financial stability, and the only item of clothing I bought for 6 years was pyjamas.  It’s impossible to be happy when you wake each morning feeling like you’re dying and in so much pain and distress you wonder how you will get through the next minute let alone the entire day.  I was abandoned by just about everyone except my parents and a couple of close friends and faced a herculean struggle each and every day just to feed myself, bathe myself and do the basics of keeping myself alive.  It was surviving not living but it changed my entire perspective on life.  When you have everything you’ve ever strived for taken away, then are told you might die but not only do you not die you actually start to recover, it changes you forever – or at least it should.

I remember the first time I went out for dinner after my bedridden years.  I still felt really really ill, just getting dressed and putting my make-up on had been a monumental effort, the room was spinning, the lights were too bright…………but I truly lived that night, maybe for the first time ever.  I felt the summer sunlight streaming through the window onto my face.  The smell of each ingredient exploded in my nose.  I could pick out every sound: from the hiss of the espresso machine, to the creak of the door as each new person arrived, to my partner’s breathing.  The cutlery was heavy and solid in my hand.  The bubbles from my lemonade popping on my tongue.  Everything was heightened like I was experiencing it for the very first time……….and that hasn’t left me.

Now I am well enough to be able to do things no activity is taken for granted.  Even on the days when I’m really unwell, it’s chucking down with rain and freezing cold but I still have to take the dog out I remain grateful that I can even go over my front door step.  I still loathe doing the ironing but can dislike it and still be appreciative that I can do it 😉  Come those warm, sunny days when I’m lying by the riverbank, surrounded by birdsong and the buzz of insects it’s like some kind of Nirvana – I lie there bursting with gratitude at living where I do, drinking in the experience and nature’s life affirming energy.

There’s an adage which states: “you don’t know what you have til it’s gone” and it’s oh so true.  My Mum and I were technically homeless for 2 years after my parents separated and that experience has never left me.  My home has always been incredibly important for my security and I’ve never taken it for granted.  I am grateful every day for my own space, my own kitchen, my own bed.  I’ve never had much money and that used to bother me until I realized that money can’t buy me happiness.  You need a certain amount of financial security to feel safe and I’m extremely lucky that I have that, but over and above security money can’t buy me anything which makes me joyful.  It doesn’t buy love, family, health, friendship or peace of mind.  In fact, I think money often robs people of the ability to appreciate life and the more people have the more dissatisfied they become.

I am lonely and I miss having a partner, but experiencing that loneliness makes me appreciate the people in my life so much more.  I drop everything to spend time with my friends and family and relish every second of laughter and companionship.  And if Mr Right ever does come along he’s going to be cherished beyond his wildest dreams (lucky boy 😉 ).

We are constantly brain-washed into believing money, possessions and the perfect body will make us happy, then wonder why we spend much of our lives feeling discontent.  We’re forced into constantly striving: for more and more stuff, for longer nails, bigger boobs, a smaller waist, flatter stomachs………….. and it’s exhausting.  When is enough actually enough?  And as long as we’re healthy who fucking cares what we look like?!

After my brushes with death I realized life is both precious and precarious.  I realized I wasn’t invincible and my life could be taken away at any time for any reason, so I needed to seize each moment and treat it like my last.  I could lose the people I love suddenly and without warning, so I needed to treasure every second they’re still with me.  I realized that nature nurtures me in a way no material possession ever could.  That the loyalty and unconditional love of my pets sustains my soul.  That I am in awe of my body, which has spent 2 decades fighting a brutal war to keep me alive and emerges every day victorious, if increasingly bruised and battle scarred.

I love being alive.  It certainly beats the alternative and I intend to live with passion and gusto and joy for as long as I am able.  My limitations constrain me but don’t confine me and they certainly don’t define me.  And now, despite feeling absolutely crap, I am off into my spare bedroom to take some pictures of myself looking like a statue for a photo idea I have, then will spend an engrossed hour tonight in Photoshop faffing with it.  And after that, I have an idea for a photo which involves a scarecrow, and one which involves a fairy, and one which involves a mermaid, and one which involves tree bark, and one which involves a witch, and one which involves bluebells, and one which involves a plane…………….I can’t wait to get started 🙂

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.