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.

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!

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.