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. ♥

Autistic People Are Amazing

I recently discovered that a google search for "autistic people are" returns some horrible horrible autocompletes, and there is a movement a foot to help Change the Google results by writing blog post about this, and highlighting how special, amazing or awesome people with Autism Spectrum Disorders are.

My son is amazing. He knows almost everything about every British royal members from 1600 on to today. He know the history of almost every video game in existence. And he is really funny and making parody songs to existing music. I love him. He is Autistic and he is amazing.

My daughter is amazing. She has an incredible vocabulary for a little girl and amazing insights into things science and math. She learns extremely fast, and when she is motivated she can accomplish almost everything. I love her. She has Aspergers and she is amazing.

I have Aspergers. I have struggled through life with it not knowing it until this year. God though, has given me amazing gifts for music, for writing and spinning words together. I matter. I have Aspergers, and God has made me amazing.

I hope you all see the amazing side of everyone you meet, and especially those who you have to look harder sometimes it see that amazing-ness.

It's the little things...

My Aspie daughter and I have been having some friction in the last little while.

I don't know to keep sane when my Aspie daughter runs as fast as she can through the house and leaps onto the sofa, ignoring my pleas and demands and everything else as she stops, turns and then runs like a jet engine the other way to start the run again.

I find the times she repeatedly interrupts me or anyone else while we are having a conversation just absolutely aggravating.  And no matter how hard you try to tell her to wait and not interrupt, she insist that she needs on speak now.

There are also the times that she is told not to jump on the sofa, and says she wasn't "jumping", she was "hopping" and the argument goes on and on as she finds some part of what I am labelling that doesn't match her interpretation of it.

Argggghhhhhhhh!

Then it hit me. I am having a hard time with some of these things because of my Aspie rigidity. She is invading my sense of right and wrong, just as she feels I am invading her sense of right and wrong.

There are so many times that the Aspie dance we do is a beautiful and interesting and intriguing one as we are two similar souls, that share unique to both of us traits. And there are other times where it is like we are on a merry-go round that is going at top speed, and we are both trying to hold on, while also trying to get onto a horse.

I love my daughter very much, and the last year has made me especially fond of her uniqueness and her brilliance and her poise and eloquence. It has been special to both of us to know that we share being Aspies. It has bonded us together like nothing else has.

I need to remember that she is a child, a brilliant child, but a child. She is in a world that does not work or think like she does. I have had 37 years to learn how to tread water in this world, and I have been conditioned to what I think the world expects of me, and I can't expect her to know all these things yet. And maybe some of these things that I have been conditioned to are not important, and she and I both need to learn how to be ourselves in the world.

Being an Aspie is nothing to be ashamed of. It has its many challenges, especially in dealing with people in the world, but it is a good thing that does not need to be "cured". I need to stop thinking that I need to help fix her. I need to help guide her, navigate her through this world that is terribly mixed up in our eyes.

I hope if you are reading this that you can see the incredible beauty and value that is in anyone who has Autism. If you have Aspergers, take heart, and step back, and enjoy your uniqueness and your gifts that you have been given in this world.

I can't wait to see my daughter grow!

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!

An #Aspie dad to #ASD kids

Our family's journey through Autism began 10 years ago with the diagnosis of Autism with my oldest, my only son. I knew, I KNEW, that he had autism. Little did I know then that I know now about how life with him would be.

I knew that many of the dreams that you have of how kids should grow up would be different, but I really did not know how it would be. My vision of the future was empty, not without hope, but without a framework.

Fast forward 10 years, when he is now about to turn 14! (I am old!). He has learned and done more things that I could have imagined he would back then. He still has challenges, many of them, but he is funny, charming and contains an encyclopedic knowledge of the things that he is really interested in. He loves computers and video games, and we connect most when we talk about these things. He is very smart, and when you give him time, he will display his vast knowledge and understanding of things.

He is in high school, where he is finally getting the supports he needs to be able to function well in a regular class. His elementary years were full of schools telling us problems they had with him, we would suggest ways that they could use to resolve them and they would patronize us by pretending to listen. We'd them get calls a week later stating they were still having the same or worse problems. We'd ask them if they did the things we'd suggested, and they would say "no, we can't do that, or we'd have to make all kinds of changes!"

He has been much better in high school. Next year he will be in senior high school, and with individual classes instead of staying with his classmates all day. Sigh... I hope he will do well with assistance there.

Why am I thinking of all this now, when I intended to write about his Aspie sister? I guess it is because his birthday is next week, and I am thinking about him. I haven't written too much about him anywhere until now.

My wife and I were talking about the changes that are coming in DSM V, with regards to the spectrum. I guess I feel the same as a lot of other Aspies, that lumping Aspergers together into ASD with all other diagnoses on the spectrum, just doesn't make a lot of sense.

My son, who has high functioning autism, and my daughter I has Aspergers, are very different. My son needs guidance a lot in order to be semi-independent, but still for the most part stims and lives inside his head. My daughter is full of life, is very interactive and adventurous, and needs guidance to pull her down from the clouds to see the safe paths for things.

My son will most likely grow up needing assisted living arrangements, and he is probably going to be somewhat dependent on us or others all his life. My daughter on the other hand will live independently, but will probably rely on us or others as she faces challenges in a world that just doesn't think the way she does. Heck as an Aspie, I know that from first hand experience!

So, there is a real difference between high functioning auties, and aspies, and I am hoping that these changes don't eliminate the need for help for Aspies, and that rather we look at the spectrum as just that, people with similar issues, that have individual strengths and needs.

I love my son. I love how he has grown and matured. I am excited now about what lies ahead for him instead of afraid to think ahead. His future is in front of him, just as much as any NT kid's is. So Happy Birthday Boo! Enjoy another year ahead!

Another man's Journey with Asperger's as an Adult

I was reading some of the comments left on this blog, I decided to look at a blog of one of these commenters, and his blog posts reminded me of my struggles through life not kniwing that it was in fact my Aspergers behind the myriad problems I faced.

Read his story Asperger's / Year 56+: How it Started: and get another glimpse of an adult diagnosed with Aspergers.