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 🙂

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6 thoughts on “Perspectives

    1. Jak Post author

      Hi Lisa

      I am better than I used to be M.E-wise, but much worse Ehlers-Danlos, Mast Cell Disease and Endometriosis-wise! I wrote about my partial recovery from M.E. here https://mastcellblog.wordpress.com/2014/07/05/recovery/

      I am the most drug allergic person I know. My post about that is here https://mastcellblog.wordpress.com/2013/06/25/drugreactions/

      When very severe with M.E. I used to have other chemical issues, ie I felt ill from the ink off a newspaper, or the smell of bleach, exhaust fumes, hairspray, perfumes and had to have my bedroom painted in chemical-free paints. But as I improved somewhat these largely disappeared.

      Jak

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      1. Sarah

        I have many reactions to drugs, the worse being morphine and codeine, so I felt like someone was still cutting into me when I came round from my hysterectomy. Eventually they gave me oxy which I’m ok with.
        I am allergic to dental injections. They contain adrenalin to keep them localised but they do an injection that doesn’t contain it which I have. It takes longer to work and you may need more than one injection too
        I read somewhere recently that it might be the bulking agents or the coatings that can cause reactions and different companies use different chemicals so it might be worth trying a different brand. I also read that Tramadol makes the body release histamine so I avoid taking any near bedtime
        Hope that helps

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        Reply
  1. d

    “My limitations constrain me but don’t confine me and they certainly don’t define me.” Love this.

    So glad you have your creativity and photography to help sustain you.

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