Colin Noden's Journey with Illness and Disability

Yes I am disabled.  I have one of those vague illnesses.  Vague in that it still doesn't have a good name or bio marker.  Vague in that there are different versions of it, all lumped together, so that even in support forums there tends to be criticism of fellow sufferers.

It has been called Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomylitis (ME), or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).  And there is even a committee searching for a better name.

In the end, it doesn't matter.  I have cells which can only do so much, and then no more until rested for long periods of time.  I have nerves which cause searing pain in random parts of my body.  Sheets of pain envelope me almost constantly.  My heart decides to either quit on me for alarming periods, or hammer away in others.

My brain makes daily life like moving through a swimming pool.  It gropes and struggles to connect things.  It yells at an unresponsive body and gets grudging response.  It refuses to think in a linear fashion and has lost almost all mathematical ability.

I could go on, but it gets a bit boring.  This then has been my reality since 1991.

(the following is an update from the 2007 original content.  After watching the recent NIH CFS/ME conference I realized that it would be good for me to document some of my initial symptoms)

In 1991, I attended a conference in Florida and became ill after returning home.  The illness was notable because I was on a road trip through the mountains of southern BC and was forced to stop for 2 days in a hotel, while I suffered " the worst Flu of my life".  I don't remember all the details of the illness.  I know that I was exhausted to the point of disorientation.  I was nauseous and could only get a piece of toast down after the second day of rest.  I cancelled the rest of my trip and drove home, having to stop and rest at almost every rest stop and pullout along the highway.

Once home, I managed to "recover", but never fully attained the strength and energy I previously had.  I was able to build myself back up to running my usual 10km a day, but the pace was slower and the recovery harder.  Injuries became more and more frequent as the body refused to heal as fast as it usually did.

I finally had to request a transfer back to an urban area.  I was constantly exhausted and had to give up the volunteer youth work I had done for 18 years. 

When asked for the reason for my transfer request, I searched for the best way to describe my situation.  I told my manager that I felt like "I was disappearing".  I guess exhaustion and fatigue were not in my vocabulary at that time.

The transfer to an urban area soon revealed even more problems.  The demands of downtown traffic quickly overwhelmed me.  This was something new.  I had been a commercial traveller for a long time and was always comfortable in any situation.  Now, the alertness needed to travel through the cityscape was fatiguing to the point of passing out.  My professionalism kept me from forcing myself into a dangerous state.  I would pull over and nap, until I was able to continue, but this led to a frustrating decline in my performance with my company.

The final straw, that made me seek medical help was when I was unable to complete my expense account.  I worked on this simple account balance document for 2 days, using a calculator.  I knew it was a simple task.  I was doing local work and there were no complicated entries; just a row of numbers to add up.  I just could not get the account to balance.  The document was beyond me.  This was the first empirical proof that something was not right.  I had rationalized all the other symptoms and decline in health.

I had lost perspective.  My aches were from "overtraining".  My fatigue was from " over work".  My slowness was "others being too hasty".  My mental confusion was "others not being clear".  and on and on. 

The more I pushed myself the further down this road of disorientation and decay of ability I went.  But the expense account finally gave me a moment of clarity.

I was fortunate that my doctor was associated with a university hospital.  I entered the system and was shuttled from one specialist to another (even a period in psychiatric observation, which was quite interesting).

The diagnosis of Myalgic Encephlomylitis was made in the classic manner of elimination and a high score of trigger point pain, and symptomatology.

The state of knowledge concerning ME/CFS was different then.  I was told that it usually lasted 2 years and that good sleep, physical therapy and stress reduction would pull me out of it.  And so I embarked on this path for a cure.  

We now know that there are subgroups of ME/CFS.  I'm seeing it clearer as I hear different stories from different sufferers.  In the early days, there was a lot of discrimination between the sub groups.   The "2 yr" group was always touting the Cure that healed them.  The gastro sensitive group would tell the Pain group that they had FM not ME. And on and on.  I went to several support group meeting and came away more confused and depressed than when I went in. 

And so I decided to use my training to try and find a solution that worked for me.

(The following is a continuation of my original 2007 article.)

I went into a period of acceptance and transition this past year. 

In a way it was the classic last stage of grief.  Funny that it took about ten years to come about, but I'm sure that social conditioning and stubbornness had a lot to do with it.

When I first became ill, I lost almost everything.  I was at the point where even losing my life didn't seem to be that scary.  After all, my life had just become an empty shell.  But I fought back, using every tool available. 

In the beginning I was bed ridden.  My greatest challenge was to make it to the bathroom and kitchen and back without collapsing on the floor for a few hours.

Of course I lost my job, and with it over five hundred people I communicated with on a regular basis.  I was too exhausted to be lonely.  But the effect was there none the less.

My wife left me.  And I didn't blame her.  It was a nightmarish stressful time.  Both of us were simply too stressed to do anything but react in basic survival instinct. 

I was helpless in every area but one.  I could seek and ask for help.

I knew that my thought process had to be distorted because of the stress points I had accumulated.  So I sought out a therapist with whom I could relate.  I found one in Margaret Angus ( not sure if she is still practicing) who used transactional analysis as a basis of therapy.  This appealed to my stoic personality and gave me structure in my thinking.  My Doctor ( Dr K Hatlelid MD) was my champion and touchstone through this time.  Because of his active participation and referrals in my initial  diagnostic period, I had fewer hassles with the insurance company than most.  It was still  nightmarish at times, but better than others.  I'm sure I own several of the grey hairs on my doctor's head.

I used to do long distance running before becoming ill, and I set up a recovery program in the same way.  I used an ultra marathon training technique and modified it to my current abilities.  The crawling to the bathroom, with hours laying on cold tile, became shuffles.  And soon I was able to get outside and walk.  Longer and longer.  And soon I could make it to a gym and hire a personal trainer.

NOW HERE IS A VERY BIG ASPECT:

Despite all the anguish during the first critical stage of my illness, there was also great hope and drama.  When you are starting with nothing, every accomplishment is amazing.

But what happens when you move into the chronic stage?  What happens when you hit the ceiling of ability?  This is when the world turns its face away from you.  This is when guilt comes into the picture.  This is when all the New Age self help people begin to circle, and the regular medical people just shrug their shoulders in helplessness.  This is also when the insurance companies see you as a long term liability and attack.

I am using "You" here because I hear this story in every forum I visit regarding ME/CFS/CFIDS/ whatever.  I'm sure it is constant in other forums like MS or FM or now Alzheimer's.

I was not prepared for the chronic phase of my illness.

I met a new partner during the end of my critical phase.  Every week seemed filled with new accomplishments.  I had the courage to set goals.  Big goals.  We had plans and didn't seem too concerned about my present restraints.  After all, I had conquered many other devastating symptoms.  It seemed that life going to be a steady climb to health and happiness.

Then the ceiling hit with relapse after relapse.  My strategy of steady forward conditioning failed.  Most of my long conquered symptoms reappeared.  We spent thousands of dollars on alternative health options, with only an empty bank account to show for it.

Guilt began to creep in.  I was given books like Louise Hay's "Why people don't heal..."  I took course after course to get my "head straight".  I chanted and hummed and visualized and talked to myself in the mirror.  I got needled and drank potions.  I spent eight years trying to break the ceiling of disability.

My relationship with my spouse became troubled.  Emotions started to heat up.  We sought out help.  In just a few sessions, it became clear that the reason for our current trouble was that our relationship contract, even though it was unspoken, was built on me getting healed.  We built our life together on a journey to great health and vigorous adventures to follow.  Now we were confronted with a new reality.  One of limitation and restriction.  It was time to make a new contract.  Some people renew their vows.  This is fine if they still apply.  We had to make new vows.  And in reality, this continues to this day. 

I am still learning my restrictions.  It is in my nature to push and dream and strive.  My training in running taught me to hit the wall and push past it.  The only thing that matters is the finish line.   Or is it?   I have been bed ridden for the past two days.  The only reason I can write this much at one sitting is because I have spent the past two days almost brain dead and incapacitated.  I will now go out and get chores done and socialize and then pay for it once again.  I still have to learn how to smooth out my life.

TEN YEARS after becoming disabled, I have just now come to an acceptance of it.

Last fall I just gave up.  And it felt good.  I ate what I wanted, and drank what I wanted, and relaxed.  Of course I also gained about 20 pounds and am a bit out of shape.  But I am released from that constant whipping of an obsolete conscience.  This has been my year to accept.

I am disabled.  I have severe restrictions. I cannot do certain mental tasks.  Pain and fog and all the little brain quirks ( like a lack of sound filtering) will be with me at all times.  OK   Accept and move on.  But move on at a speed determined by my ability, and not by my will.

You could say that I've come full circle.  But it is more like a spiral.  I'm a tiny bit further than my last cycle of progression.  And now I'm ready to learn a new way of living for this new paradigm.

Did I waste thousands of dollars on courses and treatments?

When I was in university, and was arrogant and opinionated, and of course knew it all, I had an acquaintance who was a psychologist.  One evening he asked several of us to meet with him.  He proceeded to give some advice which was counter to our current way of thinking.  Needless to say, I thought the evening was a waste of time.  But one piece of advice has haunted me.

He told us that no experience or lesson was worthless or meaningless.  Only time and reflection could show the true value of things.  Of course I was 20 and had my whole life planned, so I immediately tossed that bit into the garbage.  Then life hit.  I had experiences and lessons I had never ever even imagined, let alone planned.  And yes Jim was right. 

I also believe in the value of forward thinking courses like Harv Eker's.  Now I see that everyone has their  own destiny and timetable.  Congratulations to those who can take a course and become a millionaire powerhouse in a couple of years.  But congratulations also to those who have a new north star in their psyche.  I see this as a great value in Harv's courses. 

His MMI course helped set a new direction in our lives and was instrumental in saving our relationship.  Mary attended the Warrior and was transformed ( I would have died).  We both attended Wizard and it has helped me through this year's transition.  Life Directions was a surprise.  I thought it was a bit of a bust, but now two years later, one visualization exercise is proving to be a beacon in my life. Giving me hope and a goal which is becoming more concrete each week.  The Health Intensive brought me in contact with new resources. 

So no, I guess there is no real waste in experience, only in not using it.

I'll publish this now and update it in the future.

A special note:

Many people are quick to label this condition as depression.  Indeed, there is great frustration about this in the CFIDS community.  So much frustration that there has been an unintentional reverse discrimination regarding depression.  I would like to honour those who are suffering from depression, in all its forms.  They have their own hell to walk through.  However, please understand that what I ( we) go through is not depression.  Even in these tough times, I see so much opportunity around me.  Indeed, my greatest negative emotion is frustration.  My friends, there has never been a better time to be alive and full of energy. 

• My CFS disability through 2008
  
  An update on my journey with CFIDS through 2008
• Update on my CFS disability levels Nov 2009
  
  Using real life challenges to test my level of disability with CFS/CFIDS. Nov 2009
• An update on my CFIDS for 2010
  
  An update on my symptoms and treatments for CFIDS/ME through 2010
• An Update on my ME/CFS through 2011
  
  A retrospective look at my life with ME/CFS during 2011. An analysis of the life challenges, tests, and therapies I experienced.