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?

#Aspie Overload. How do I stop the World From Turning?

I grew up being like Fix-it Felix.  "I can fix it!".

Whenever something wasn't happening or looked like it needed to happen, or if someone I knew had a crisis (usually in my family), I would step up, and take charge.

I volunteered a lot, and did many things. Partially because I felt that it needed to be done, and partially because I liked being in control, and the high that I would get when I actually fixed things or solved a crisis.  However, I had a hard time saying no, or letting others do things. My focus and memory would get worse and worse the more I asked my brain to do, and then I would start slipping on meeting the expectations of someone, and I would start to lose confidence in my abilities, and then I would forget more things, and have more people upset with me.

The more I felt that I was disappointing people, the more I'd go into my turtle shell and my world would come tumbling down around me.  My health would suffer (which is one way now that my wife knows I am depressed or off balance), I would find it hard to sleep, and I would want to get away from everyone. I would be snarky.

Having fibromyalgia has amplified the health/depression reactions since even my body is letting me down from being able to do the things that my heart wants me to be able to do again.  My mind is certainly a lot less sharp (when it comes to focus and memory) than it was before I got sick 5 years ago, and its hard for me to get the energy to want to do things, plan things, take things on again.

I used to think that I was very outgoing, but still a closet introvert.  I surrounded myself with activities and busy-ness that kept me from focussing on any one activity or one group of friends until the last two years of high school. I recoil though at the memories of all the activities that I got myself into that ended so badly, and made keeping relationships even more difficult.

My Aspieness growing up manifested itself in a manic hyperactivity that gave me my nickname "Tigger", and it manifested in seeking the highs from being smart and figuring things out.  It's only now looking back that I see what I needed, what I ended up doing only when things fell apart around me.  I drew strength from the times I had alone, that I could think and talk to myself, and write things down.  I kept pushing myself into everything that required being outgoing, but I would burn out and bring the walls down around me.

Seeing this, looking back, I am starting to begin to see when I am now getting overwhelmed.  Pain is a huge trigger.  So is hunger, and too much sun.  And definitely too much noise (I really hate ambient noise these days).  I don't tend to volunteer to do too much right now, as I know my stamina and focus level is low, and not very predictable.  

I am beginning to feel the change in me as I approach burnout or high tension level.  I am beginning to be able to tell my family. "Warning! Aspie on Meltdown Alert! Take cover!"  And they are beginning to have patience with me to help remove some anxiety obstacles, and help me get my space.

Learning about my triggers and my thresholds of activity is helping me deal with my life better.  Each day is a brand new start, and I am so thankful for my wife who patiently is guiding me through this confusing neurotypical world.  I hope that I can help my Aspie daughters too.

Beginning the Journey - Discovering you have #Aspergers

I've had a hard life.  I've made more than my fair share of mistakes, and have had to learn many things the hard way. However, recently I've begun a new journey to understand myself after several insights have come to life after years of being in the dark, and quite ignorant  as to who I really was.

The first insight began in earnest when I got very sick 5 years ago with a prostate infection, that triggered a whole bunch of other things. It took a long time but eventually found a doctor who could identify the acute problems I had, as well as deal with the chronic pain which he diagnosed me with fibromyalgia.

The second insight began in my childhood, but was only in the last month that I have been brought to seriously look at my childhood. I am discovering more and more about myself and my childhood as I look through the lens of being an aspie, and having Aspergers Syndrome. I have just recently been diagnosed, and it makes so much sense than all the other labels that I have been assigned throughout my life.

The immense difficulties with reading body language, and subtleties and non verbal stuff that everyone seems to have except me. Being told constantly when growing up to "use common sense" to which I would frustratingly retort "if it was so common, than I would have it!"

I have a lot of analytical skills, I get obsessed with things at at a very deep level, I get so focused on my thoughts, that I totally miss people talking to me, or what they are saying when I am in the middle of a conversation with them. I tend to monologue instead of dialogue.

I think in pictures, and find it frustratingly difficult to retain things aurally. I map out in my mind everything that I am thinking about, and sometimes I find it difficult to use words to describe my thoughts and a wipe board is my best friend.

I am just sharing my thoughts as I go through this process, this journey into learning who I really am. Living with fibromyalgia effects my physical life, and living with Aspergers effects my neurological and behavioural life. The effects of both bear on my psychological life.

Now that I am aware of myself as an aspie, perhaps I can learn how to relate to others, but also understand that some things are just the way I am made, and that is ok.

I hope to write more as I go through my life and the journey of understanding and dealing with Aspergers and Fibromyalgia.

Caregivers, friends, understand Chronic Pain

I found this post on one of the many forums that I am on, sharing and ranting and comforting others about my journey with Chronic pain.

The poster could never find out who was the original author for this, so I am posting this giving credit to the original author whoever that might be.

Thank you to the unknown author for such well said words to help us all~

**This is the letter to "normals"- People who don't personally live with chronic pain, but for those who know people with chronic pain**

These are the things that I would like you to understand about me before you judge me..
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me --stuck inside this body.

I still worry about school, my family, my friends, and most of the time; I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but, I've been sick for years. I can't be miserable all the time. In fact, I work hard at NOT being miserable. So, if you’re talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you're welcome to.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday, doesn't mean that I can do the same today.

With a lot of diseases you're paralyzed, or can't move. With this one, it gets more confusing every day. It can be like a yo yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute.

This is one of the hardest and most frustrating components of chronic pain. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day, I'll have trouble getting to the next room.

Please don't attack me when I'm ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally.

If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do. Please understand that the "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time.

Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don't you think I would? I am working with my doctor and I am doing what I am supposed to do.
Another statement that hurts is: "You just need to push yourself more, try harder.." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.
Also, Chronic Pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. Please understand that if I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now. It can't be put off or forgotten just because I'm somewhere, or I am right in the middle of doing something.
Chronic pain does not forgive, nor does it wait for anyone. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying.
If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation, unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general. In many ways I depend on you -people who are not sick. I need you to visit me when I am too sick to go out.
Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to normalcy of life. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot to me. ♥

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!

5 things I have learned from 5 years of being sick

I was reading a blog post called 11 tips learned from 11 years sick that really struck me as how accurate it was for me.

Some of the points that resonated with me were:

• Becoming chronically ill begins a grieving process. Let yourself grieve.
• Don't worry about how other people see your illness. They aren't you.
• Don't worry about not working. You are working, whatever the little things you are doing is work.

So in reflection, here are my 5 things that I have learned from being sick over the last 5 years.

1. Do whatever little you can each day. It matters.

When I first became sick, during that first year when my health and mind were at its worst, I dreaded each day, and I had in my mind that I couldn't do anything. So I stayed in bed a lot of days, and didn't try to get up and do much at all. Pain was everything, and my life was all about pain. I didn't try to do much, because I didn't think I could do much, and I was frightened that doing anything would cause me even more pain.

Eventually that thinking faded, and with this second round of pain that I have been having in the past two years, my mindset has changed. I will get up every day. It may be later, but I will get up. I will try to do something around the house, even if it is only one thing. I will try and spend time with my family, even if it is only during meals and between breaks. Doing this has given me motivation, and a much healthier mind.

My body sucks. I don't.

2. Enjoy each success. There will be bad days, but there will also be good days.

Is the glass half full or half empty? If you were the type of person that sees it as half empty, you would look at chronic pain by saying "Oh, I have so many bad days, they are just so rough!"

I was like that, and sometimes succumb to that type of thinking. What is important to remember is that there are good days. They may not come by that often, but they are there, as gentle reminders of hope. They may be whole days, they may be just a few hours. But they give strength to your heart that you will get through this.

3. Perseverance brings character.

I wish I could say that I had a solid character now that I have been going through this. That would be a lie. However I have learned lots about humility and grace, when you are stripped of everything you thought you had - health, work, sanity, finances and need others to aid you in almost everything you do. I was a very proud man before I got sick. I was very full of myself.

Now, I am still learning, but having faith in God has allowed me to let go, to breath, to be myself, while my body is not healthy. I am more than my illness. My disability does not define me anymore. I am disabled, but I am not my disability. There is still more that I can do, even though I can't do all that I used to do before.

I can and will persevere!

4. Take time to be with your family. They really need you, and you really need them.

When I first got sick, I was hyper-sensitive to everything. sound, touch, smell, lights.  I didn't want anyone around who could make things worse than it already was.  It made it harder for my wife and kids to understand me, or to love me, because I put such a protective shell around myself.  But I was lonely, and so were they.

This second go round, I still need to take breaks to isolate myself a bit, but I try really hard to rest around them, instead of away from them, so that I am present, while still getting the rest that my body needs to heal, or recuperate.

I was a real jerk when I was first sick.  My personality went for a nose dive.  Thankfully, this time I have learned some of the hard lessons, and I am trying to be present in my family's life. My daughters need to be hugged and cuddled.  They all need to see and hear and touch me.  I need to be present.

5. This too shall pass.

This doesn't mean that your illness, or pain will suddenly end some day, because it most likely wont.  What it means is that this struggle, this pain, this moment's difficulty will pass. It will end. You will be able to catch your breath. Just remember to breathe during those moments, however long they last. Rest. Recuperate. Recharge. Relax.

You need to take in those moments of seeming normality, as it breathes hope and life into a weary body and soul.

I can't say I live these every day, but I am reminded of them often as I face my life with poor health and chronic pain.

I hope these points make you think, and help you if they can.  Please leave me any comments or feedback, or even tell me your story.

Thanks for reading!

The trials and tribulations of a spouse of an Aspie

To be honest, this post should be written by my wife, as she is the one that has to live with me, she is the one who has the special ministry of being partial to most of my meltdowns, quirks, inappropriate comments and behaviours, and all the other things that make an Aspie so easy to love.
She is the one who really brought it home to me the reality that I may have Aspergers. As much as it has helped her see that many of the things that I have done in the past were not known to me, or perhaps not totally my fault, it hasn't made it any easier to deal with me now. After all, I was an aspie before we figured it out, and I am still an aspie now.

We can hopefully better navigate our life together, and perhaps learn new ways to communicate and cope with each other, but we now know the road ahead is difficult, and it won't be much easier in the short term.

Fortunately we both have individual counsellors as well as a marriage counsellor that have been along with us through this new stage of realizing I am an aspie, and the stages of grief and acceptance that we both are experiencing.

What makes things more difficult for my wife, is that she has spent the last 5 years trying to nurse me along through very difficult illness and then the long term pains with fibromyalgia. I have not been at my best during this time, as my sensory issues went into overdrive, yet still she loved me, and liked me most (or some) of those days.

So last night while she was pondering again her lot in life :) , she emailed me a few links to articles on helping neuro-typical (NT) wives get support and understanding from among their peers.  She also gave me links to an article to aid therapists on how to support these women.

At first when I read them I felt depressed at how difficult I have been to deal with, and the emotional weight that she will have for the rest of our lives together. Then later it occurred to me that I should share these links and my thoughts both for therapy, as well as to let others know of some resources, and to tell these NT women - There is hope.

Here are the links.  I hope they help.  If you have any comments, please enter them below.  I enjoy getting feedback.

Frequently Asked Questions on Asperger Syndrome
Asperger & Marriage
Therapy Recommendations for Marriages Impacted by Asperger Syndrome

Asperger Marriage: Viewing Partnerships thru a Different Lens 

I really hate quality of life questionnaires

I am at my urologist's office and they make me take these stupid "quality of life" questionnaires. I dislike them mostly because they are subjective and ask questions about how I feel, and make me rate them on scales that to me are different depending on the time of day, the weather and my mood.

I am in a dark mood today. I feel like a heavy cloud over me.

I just finished seeing him, and had a major emotional meltdown discussing with him pain, my lack of help from my GP. He at least is a helpful doctor and is referring me to a pelvic pain physiotherapy clinic, as he really feels it would be the next thing for us to try as I deal with chronic pelvic floor pain syndrome. Yet another diagnosis. However he was the one doctor who helped me through my initial horrible pain of my first two bouts of prostatitis that started things moving to my severe (to me) fibromyalgia that I have me. Many acute and chronic issues were caused by the severe prostate infection.

If I could draw a picture of how I feel today it would be of a raging fire all around me with me in the centre in a very tight blanket that is not fire-proof. It is a very dark day, and it is hard to see the light at the end of the tunnel.

I thought that the diagnosis of Aspergers would help me understand myself better and allow me to begin to deal with things better knowing what I am facing. However I have learned painfully quickly how different relating similarities with someone with Aspergers is then actually identifying as a person with Aspergers.

Because of seeing things in me that I never knew, or understood, or suffered through, I feel myself so strange, awkward, so different, so baffled, yet so sure of everything. I am so angry and sad at the numerous painful experiences I had in my childhood, youth and adulthood that could have been lessened if my parents and I only knew!

Most of my thoughts are irrational and highly over-emotional right now, but I just can't filter them out right now, and focus them away from this chaos in my mind.

I am struggling with all the diagnoses, mis-diagnoses and cross-diagnoses (co-morbid?). I am on so much medication that I m left taking medication because of side effects of medication, this medication for this "syndrome" another for that "syndrome" and still others to treat what they guess things might be.

Perhaps it is the bane of the Canadian universal health care system that doctors are so overworked for such low pay that they don't have the time to really care for their patients, or learn much more than the bare scope of whatever their area of medicine is. Understand chronic pain? Pffft. Because we don't pay for our care, and there re so few doctors, we can't fire our doctors or get. Second opinion without a huge rigmarole.

I am going to try to get help today to sort through this mind crap that I have right now because I am functionally non-operative at this moment, and have been most of this day.

I hope the next time I write I can be reflective or more "up" than I am today. Sigh.