May is both M.E. Awareness month and Ehlers-Danlos Awareness month (there is no Mast Cell Disease awareness month as far as I know, not yet at any rate).  It’s pointless me trying to raise awareness of these diseases through my blog as it’s read by people who, for the most part, already have or know someone who has these diseases, so I thought I’d share with you what having both M.E. and EDS has taught me.  It is not an awesome or inspirational list, just random stuff not all of which is positive.  But then being incurably sick isn’t a positive thing and anyone who says it is is a big fat liar.

So, here we are in no particular order:

There are worse things than dying.
Being tortured for every second of every day for nearly a decade, with no social, emotional, practical or medical help of any kind was hell on earth.  I totally understand someone with cancer refusing their third round of chemo, even if it might cure them.  There’s only so much suffering a person can take before death is preferable.  I’ve been there and if I thought I had to do a single week of that suffering over again I’d top myself.  Death no longer scares me which is good considering it’s unavoidable.

I am stronger than I ever thought possible.
I survived a shit childhood, emotional abuse, horrendous bullying, poverty, homelessness and abandonment.  I then survived a decade of being bedridden, tortured, neglected, medical abuse, victimization, disbelief and solitary confinement.  I now survive chronic pain, isolation, increasing poverty, continued medical neglect, victimization, disability and disbelief.

Not only did I survive all this, I survived intact.  I still love my world, I have self worth and self esteem, I try not to let anger consume me or direct my actions, I still have huge capacity for empathy, joy and love.  I am not perfect and I like myself despite my imperfections.  For the most part I am kind to myself and accept my bad days, outbursts, crying fits, despair, frustration and anger without judgement – if other people want to judge me I suggest they live a day in my shoes then decide how they’d cope.  I define myself – I do not let my experiences define me or my happiness.

Having said all that you don’t live a life like mine without it affecting you and if I waded through all my emotional baggage I could be in therapy for the rest of my days – thank God I can’t be arsed 😉

I don’t sweat the small stuff.
The trivial shite that people in the developed world get hung up on gobsmacks me.  Botox, plastic surgery, obsession with large breasts, perky backsides, false nails, fake tan, weight, cellulite, what car they drive, how big their house is……….get a goddamn life you shallow, self loathing arseholes.

‘Stuff’ does not make you happy.  People do not make you happy.  Being wrinkle free does not mak you happy.  Happiness is a state of mind, it’s a choice.  It stems from humility, gratitude, connection and love of self.  I am grateful to my illnesses and my experiences for teaching me this most important of life’s lessons.

I’ve got to be honest though – if I had a choice of not being sick all these years and being shallow and miserable, or being sick all these years and being happy, I’m fairly sure I’d choose health and misery.

There are worse things than being alone.
I had my first boyfriend when I was 11 and  I wasn’t without a man until I was 30.  I’ve now been single for 18 years, and lived alone for 24 years.  It has its pluses and it has its minuses.  I never thought someone as needy for affection and approval as me would ever manage to be by myself for any length of time.

I never doubted I’d manage practically, as all of the men I’ve dated have been bloody feckless when it came to looking after a home or themselves for the most part.  I also never doubted I’d manage financially, although it’s been and continues to be a huge struggle.  I’m just amazed I have managed to find joy and happiness despite my solitude.

Like I said in my flying solo post, I’d rather be happy alone than unhappy and part of a couple. For any of you out there in miserable relationships life is too fucking short to live under that kind of stress – the only thing worse than being physically sick is being both physically and emotionally sick.

People don’t really care.
It’s a hard one to accept, but if you’re not going to get better most people just lose interest.  For the most part this includes medical staff, shocking as that sounds.  They have finite resources and concentrate those on people they can actually help.

I was angry about this for a very, very long time then I just let it go.  I am incurable.  Worse, for the most part I am untreatable.  This is where acceptance comes in and it’s tough to accept that you’re kind’ve on your own with your pain and suffering and that there’s realistically nothing much anyone can do.

As a child if I fell over I’d go crying to my Mum who would hug me, bathe my knee, put some Germolene and a plaster on and send me back out to play.  In our sub-conscious mind we kind’ve expect this as grown-ups and it comes as a shock to discover not everything is fixable with a cuddle and a bandaid.

It’s also easy to be hard on friends and family for ignoring us or not accepting our limitations, but they’re just people.  They have insecurities, flaws, busy lives.  They can just be downright insensitive, uncaring, judgemental dickheads.  When I was healthy I didn’t give a toss about anyone but myself if I’m honest and certainly wouldn’t have spent any of my precious spare time with a sick person who couldn’t even go out the house or do anything fun.  It isn’t a judgement on them any more than it’s a judgement on you.

Of all of the above.  So incredibly liberating and enabling and something I was lucky enough to learn fairly early on in my journey.  Acceptance does not mean giving up, far from it – if I’d given up I would never have been diagnosed with EDS or MCAD.   But for me accepting every aspect of my diseases has been crucial to living my life with gusto, peace and joy.  It is what it is.


5 thoughts on “Awareness

  1. Livvy

    Awe Jak!

    How do you always make me both laugh and cry in the same blog post!

    Brilliant! Gotta love ya!



  2. Catherine

    This is not a very inspired or original response. When you are both inspired and origional .Everything you wrote was what ive spent time realising . Even the childhood was similar. This wretched daily struggle is so demanding increasingly that i have NO patience with so many peoples spoiltness who are totally able bodied .Im getting used to the incredible isolation ,with the increasing sense of life being surreal if i spend too much time around others.
    I told someone to stop talking such bullsh…. recently . Whatever he was saying was too much to listen to .So now i know i dont have to listen . He had the grace to laugh and thank me for being so honest .
    So for everything that EDS/POTS/MAST , plus more now has stolen im not convinced that i would be as honest as i am automatically 😢🤔🙃🤗😀

    Liked by 1 person


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