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?

Falling between the cracks - #Aspergers and #MentalHealth

I just finished reading an article in the Ottawa Citizen. They had a multi-part series about Autism, and one post was about Adult Aspergers. The whole article is an amazing but difficult read about the story of one woman's battle with "the System" and her family's struggle to get her the proper care that she needs.

However one paragraphs really stood out when I read it, and immediately I identified with it, and felt that this was something I needed to write about.

"Currently, developmental disorders, such as autism, fall within the subspecialty of child psychiatry and are not part of a psychiatrist’s general training. That has led to a shortage of psychiatrists who are trained to recognize and treat the mental illnesses that often accompany autism in adults, says Dr. Peter Szatmari, a specialist in autism and head of the child psychiatry division at McMaster University.  

To make matters worse, many of the existing dual-diagnosis services are for adults with an intellectual disability, defined as an IQ below 70. That leaves people with high-functioning autism or Asperger’s ineligible for many specialized services."

This has been a big problem for me. I have been bounced around the mental health alphabet tree as one health care worker after another has applied YAD on me - "Yet Another Diagnosis".

As a kid, who was gifted and hyper, I was given Ritalin, which just made me crazy hyper. I was institutionalized for a year when I was 10, as they suspected I may have schizophrenia because of the way it would seem that I would "escape" from reality into my own world.

As a teen I was diagnosed with Tourette's and ADHD. From then on, I associated my repetitive gestures like my foot stomping, my rocking, my finger tapping, and the fact that I always had a song in my head (which would sometimes come out in a hum, or a whole song) as part of my Tourette's.

I saw so many shrinks and social workers that I just got frustrated with the whole lot of them until the last few years.

I never really fit in anywhere growing up, and there were times that I would be extremely depressed and withdrawn, while at other times I would have the persona of being the life of the party, the guy with the pun, or the good joke. It was a very lonely time for me.

As an adult I went through a deep depression after my first marriage ended after 3 years - I was only 27. I look back and see a lot of difficulties my first wife probably had dealing with me. She too was too young or mature to be able to handle someone so - different.

I also had difficulties dealing with people and bosses at different jobs. One boss told me once that many times after I did something he didn't know whether to fire me or give me a raise. I sort of just did things because I knew that I was right and it needed to be done. I had lots of interpersonal issues with my coworkers, and I just didn't get it when people would say something, and I would find out later they meant something else.

After having lots of frustrating times working for others, I started my own business, and ran it for about 5 years. It was fun, exciting and challenging, but I still would get into binds with my clients about their expectations, and things that I thought they needed or meant, plus also a life long issue that I had with trying to talk with people when I think they are upset with me.

I got married a second time, to the wife who is such an amazing blessing to me now. However the last 9 years have been really challenging for us, and especially for her as we have tried to navigate our communication skills together pre-diagnosis. We have hit some major rocks during this time, including a year long separation that ended this past fall, that has shaken us up.

I would go through great times while I was working, and then hit severe lows when I was fired or lost a contract. There were tremendous ups and downs. And then five years ago I got really sick. I had a severe bout of prostatitis that wiped me out. I couldn't work for almost 2 months and was let go from a contract I was on. I got a bit better so I started a new business and hired a few people to help me do the work. Then my shoulder popped out, and I needed more help and was put on more pain medication.

My mind was getting away from me with the narcotics that I was on, my body was failing fast, and before long I was in a wheelchair, then a stay at a rest-home because my wife couldn't look after me a 2 yer old and a newborn at the same time. My clients were leaving me as I was making foolish decision after decision trying desperately to keep my business going.

And then my business ended.

Now for the last 5 years I have been mostly unable to work, suffering from several medical issues, including fibromyalgia that I had only just been diagnosed with late in 2011, and much mental health issues. I have in these last few years seen psychaitrists that have told me I have Bipolar; I don't have bipolar; all I have is ADHD; you don't have anything; your not depressed; your depression is only because you are suffering from Fibromyalgia; You are narcisist. Argh!

Then this past Christmas, my lovely and sweet wife tells me that she really thinks I could have Aspergers. One of my daughters also has a diagnosis of Aspergers and I have been finding so many similarities between her life and mine as a child. I understand the struggles, the behaviours, the not quite fitting it, but I am going to do things my way kind of mindset. So I looked into it. Went onto many forums, took many tests, rated highly likely on all of them. So I figure that she is probably right.

In the last 2 months I have been having a harder and harder time dealing with life and the day to day struggles. I have been trying to come to grips with both a very painful time physically. I have lots of pain at night, so I can't sleep well.  I don't sleep much, so I have pain during the day... What a cycle.

Everything came to a head a month ago when I just couldn't seem to deal with the emotions and lack of self-control, the increased pain and lack of  sleep.  I was very agitated from seeing my ex-GP's clinic psychaitrist who told me that all the previous psychiatrists I have seen were quacks, and their diagnosises were all wrong.  I was told to get off all medications, and then learn to deal with it.

I desperately wanted help to get a handle on things.  So I told my wife that I was having a severe mental health crisis and she took me into our local hospital.  There I was able to speak to a psychaitrist who confirmed my wife's theory that I had Aspergers. He also suggested that it might be good for me to be admitted to their psychiatric ward for evaluation, and a time for me to de-stress.

I won't go into too much detail about my time there, but I got a full psychological evaluation done, I learned how to breath to lower stress, and I was for the most part extremely bored or agitated.  In the end I was told that I would be ok dealing with my existing GP and psychaitrist, and there was nothing else they could do for me. They felt that the major issue I had was my chronic pain, and that was causing my depression.  The other frustrating thing was that none of the doctors or nurses had any experience diagnosing or dealing with an adult wuh Aspergers.  This is what led me to write this whole long post.

So, here I am 4 weeks later, my stress level has gone down, as I have been poring myself into writing in my different blogs, and talking over the net with people who get it.  I don't think psychiatry is going to help me now anyways, but at least I have had a diagnosis.

This blog post should be my answer to people asking me how I am doing. :)

I would like to be able to provide some warm fuzzier about my journey, but I dealt with that in my last post, but I will add a few.

• I have an amazing wife who has to deal with me and is managing to keep sane and loving me.
• I have sweet kids each with their own gifts and challenges that I need to remember.


• I am beginning to get help this year and real diagnoses for the real acute issues I have


• Not all doctors suck, but it is hard to find the ones that don't.


• Fight for your health! You can get to know your body, and find out why certain things don't work as they should. The internet opens up the possibility of having cognizant conversations with medical folk. You shouldn't need a degree to ask questions.


• Learning to breath slowly is amazing!

Thanks for sharing my journey! Feel free to leave feedback, or share your story!