The Spoon Theory - or my n units of energy multiplier theory.

Explaining to my friends and family what having a chronic disease is like, has always been awkward and difficult.  However after I read this article at Butyoudontlooksick.com it has given me great hope in trying to explain to people in my circle of friends and family what I go through with Fibromyalgia.

The author, Christine Miserandino, uses the analogy of a handful of spoons that equal the total amount of tasks or energy that she has in a day.  

She hands this handful to a friend who doesn't understand her ordeal, and she tells her to count them.  Then she asks her friend to walk through her daily routine.  Soon enough the friend has to make some drastic choices in her day in order to still have spoons left.

I love this as a great tool to help our caregivers, family, friends and loved ones understand - just a little bit - the invisible pain that we endure daily.

The way I describe it to my family that for every 1 unit of energy I use, I need two units of rest to recover.  If I push past my energy unit limit, I tend to then need three or four units of rest.  And heaven forbid I get sick, you might just as well write me off for awhile.

I sometimes wish I could put a cast on so that people would see and acknowledge that "there really is something wrong with me", or some sort of beacon that would go off when people come near me "Walking wounded, living each day as it comes, please be careful as patient is fragile." Or something like that.

Any way that we can gently share a window into our lives can be helpful.  True friends want to understand. True friends want to help.  For me it seems that the barrier is the truly foreign concept of pain that those who are well just don't experience.  

I hope these links can be helpful to others along this journey.   How do you share your pain with your circle of friends and family?

Experiencing the Unexpected - An #Autistic Son Amazes his #Aspie Father

Most parents who have children with autism experience days of difficult communication, meltdowns, outbursts, inappropriate comments or behaviour, and various amount of other things that can get us on edge or exhausted, and desperate for any, even brief, moments of quiet, peace and tranquility.

Our days can consist of therapy, of daily life and routines that can be easily upset and throw us into reactive, problem shoving, crisis averting mode,  with a bit of PR if we happen to be out in public.

So, when the unexpected happens, and you see your child doing something you never thought he'd be able to do, it touches your heart and makes all the stuff above worth it.  Your child is worth it, because your child is amazing.

I had that moment again this week with my oldest son who has high functioning autism.  We had the week together mostly to hang, and we joked around together, went swimming, went to library and bookstore together, and got him addicted to Doctor Who.

He's 14 now, starting high school in just a few weeks.  He's come a long way from the little boy who could not speak more than 10 words, and spoke only in rote phrases. From a boy who got so upset and angry when the simplest things did not happen how he'd expect.

This week, he let me come into the world of his feelings, and told me things that really bothered him, that made him sad, and told me how he really wanted to see things.  It was amazing.  He had the time with me this week to get perspective on his life, and wanted to share it with me, and sought comfort from me. He really enjoyed our time of just hanging out and talking,

It made me so proud.  He is growing.  He is changing.  He is autistic, but his autism isn't a static thing. It grows and changes as he does.  He has many obstacles to face in his life, but I had a glimmer of hope that he can adapt to life when he gets older and faces life after high school, whether it is college or training, or whatever!  

I have to remember moments like this when I am dealing with the day-to-day stuff.  There is hope, and amazing moments to come.  Today is today, but tomorrow... That's unwritten!

Do you have moments with your children that you treasure, and hope for what could be?