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John William Waterhouse
Boreas

It has been a while since my last blog, and it has become necessary in that interval to change certain plans, for now.

Spring is in full swing – and yet I feel as if I have spent the last month being buffeted about in a late autumn storm.  My leaves are flying away fast and I’m unable to catch them, I could not breathe life back into their brittle skeletons even if I wanted to.  I am letting them go, and looking out of the window at the true spring.  It reminds me that the world continues to turn, day always comes.

The grand plan to try and complete an endurance ride with my beautiful Arabian mare has been postponed.  My health has been suffering a little too much recently and I was referred to an ME specialist, where I received an official diagnosis (the confusing acronym has been floating around my doctor’s notes for over twenty years now) and the advice that I need to dramatically reel in my activity levels before I have a relapse.

I shall be honest, despite the knowledge that this barely understood neurological disorder has always been a feature in my life, this latest diagnosis frightened me.  It brought back the memories of when I was a young teenager and was bed bound for months.  Was that possible again?  Could I prevent it?  And more starkly, if that ever does happens again: who will look after me, how will I look after my children?

I spent a few days feeling terribly depressed and unable to get my brain to function fast enough to come up with any ideas.  And I was, frankly, irritated by the presence of the children I was terrified to lose.  I felt lonely.  Until I remembered: I wasn’t the only parent feeling lonely and lost.

Now we begin to get into 70/30 territory, because as I have written before, childhood neglect doesn’t necessarily come from nasty, mean-spirited parents.  Sometimes it happens completely by accident because of a mental or physical disability which makes it barely possible for the parent to give the love and attention they want to.  Or because of a family or life crisis that makes the parent absent or uncontrolled in their interactions with their children.

And so I begin to understand more, bit by bit (from an wholly subjective perspective and with a deeply personal interpretation), how absolutely, fundamentally, vitally important 70/30’s Primary Prevention strategy is.

It is my feeling that, for situations like this, waiting for the government to pass Primary Prevention legislation isn’t the only road open to us in our campaign to a better world.  I’m not an expert in politics, so I leave that to those who know more and look for a more appropriate use of my own strengths.

Educating and raising awareness through 70/30’s Pioneer Communities, and day by day in all of our communities and for all of our causes, is the strongest force we have to shape our world!

In that spirit, I’m going to shamelessly use this blog to offer some personal support to people with this particular ME/CFS obstacle in their lives:

  • ME/CFS (and Fibromyalgia) is a thing. It’s not new, it’s just complex and it took a while for science to get around to it.  It is not caused by mental illness or depression, it can be a life changing disability, and it is not your fault.
  • Anyone who doubting or denying the existence of this (including some GP’s) is doing so through ignorance. Forgive them their lack of experience and move on to someone who can listen.  Sometimes that goes for friends and family too, and should encourage us to reconsider our own prejudices and assumptions about others. “Until you’ve walked a moon in another man’s moccasins…”
  • If you need help as a parent with ME – I’m not totally up to speed on this all yet – look up the online resources such as Invest in ME, ME Association and Action for ME.
  • This is an important one, and it applies to every parent with different limitations, physical, mental, social or otherwise:

“Remember that you are still you.”  

You have amazing gifts to give your children, even if you can’t take them out some days.  Or any days.  Work out what it is your children really need to learn from you in their short time under your influence, and find creative ways to teach them the things that really matter.  Their friends and family can teach them to climb a tree, but it is you that will teach them to love.

We need to work out what help we need from schools, families and communities, and be brave enough to ask for it, for ourselves and each other.

This is the bottom line with Primary Prevention.  We all need to work out what we need, what our neighbours need, what strangers need, and find ways to support those needs BEFORE they become crises. 

Don’t ever believe that a random act of kindness will be forgotten.  For some people, a few seconds of your time and a smile stays with them all day, and gives them the breath of relief that truly makes a difference to their soul.  It’s ok to get angry about important issues, anger gives us energy.  But it is absolutely vital that we get loving about them too, because behind every political issue is a group of people that need love.

Meanwhile, we talk.  We write.  We campaign.  We come together.  And we remember that we all have obstacles, we all have pain in one form or another, we all have strengths and weaknesses.  But crucially, we all have UNLIMITED POTENTIAL.  We can achieve absolutely anything when we work together.

And do not fear for my 70/30 Challenge – there is always next year!

This blog can also be found at:
Campaign of Words
ejtraynor.wordpress.com

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