Chronic Pain Management Program

This program was a lifesaver and is amazing.  It was my saving grace and caught me when I was ready to end it all.   This program is made up of three different entry ways.   PACE IT, PACE IT 2.0 and Intensive.   I started out in the PACE IT program.   PACE IT is at the Fort William Clinic on Tuesdays and the NorWest clinic on Fridays.   The PACE IT 2.0 is at the Victoriaville Mall every Monday afternoon and the Intensive program is Monday-Thursdays 9:00am-1:00pm for six weeks.  

In January of 2017 my physiotherapist, Adam, sent my Nurse Practitioner a note stating that he believed I should attend the Chronic Pain Management Program.   I met with Mark in March, for an intake appointment.  We hit it off right away, as our personalities were quite similar.  He spoke about my work, my home life and personal life.  He inquired about my likes and dislikes and my need for individual assistance.  I was signed up to see the Physiotherapist, Kinesiologist and Occupational Therapist.  I also met with Mark for some brief counseling.   Part of their program is the fitness portion where people attend the Canada Games Complex on Tuesday Afternoons for aqua fit, Wednesday and Friday mornings for land-based exercises and then, when I started they also had aqua fit in a warmer pool Wednesday Afternoons.  

As I was working 40 plus hours a week still, at that point, I couldn’t join any of those programs.  I was discharged from Kinesiology and Physiotherapy right away.  As I did not have any specific goals for occupational therapy, as I didn’t understand clearly what a goal was, I was also discharged from occupational therapy.  I spent the summer weaving in and out of appointments with the team on Fridays.  

I had an hour for the appointment and usually saw them on my lunch break.  I would bring it my extra-large bottle of iced coffee from the local Tim Horton’s with me, turn my cell phone on silent and state that we only had 60 minutes so please let me know when my time was up.   This is how Mark and I started our appointments.  

We identified the goals and he attempted to keep me safe, creating a safety plan regarding suicide intervention.  We identified some eating problems that I was having and suggested ways to eat around them.  He strongly recommended I go off work, as I was appearing to be worn out and out of sorts, but I refused.  It wasn’t time yet I started.

However, after I came back from my parents, after a well needed vacation, I decided that indeed it was time.   I inquired when the next six-week program would be starting.  I was ready and he had me in the spot that I needed acceptance, that I needed to change, as I was ruining my life as well as the lives around me.   I was switched managers at work during this time and things there were not pleasant to say the least.  He stated that the next program would start September 18^th, however, he believed that one was full.  The next would start in November.  I reiterated again that he had me then, he won’t have me in November. 

What would I do with myself for three whole months before the program started, short of going crazy and being my worst enemy.   He did some digging and contacted me stating that I would be in the program starting September 18^th.   I would be receiving a welcome package in the mail shortly so stay tuned. 

My nurse practitioner was Shawn Dookie at the NorWest Community Health Centre.  He was amazing and worked with me through-out this mysterious neurological condition.  He agreed with the decision and was happy to write me off of work, breathing deeply, he managed to keep me alive up until that point!   I received a medical absence from work, for the six-week program.   I submitted it right away to my manager and stated, that although this program was only six weeks it was going to be a journey of self-discovery, and I would be off work for a lot longer.

You see, by then I was falling all the time, hitting my head multiple times, sometimes even in the same day.  I was starting to walk with a limp and drag my foot everywhere I went.  After a significant tumble in my driveway I lost the ability to read and to concentrate on the words that were in front of me. 

My colleagues were reading emails to me, and my practicum student that I had was writing my case notes.  I was literally a downhill basket case.   I was throwing up everything that I was eating and my goal was to attempt to get enough nutrients in me, to last until my next meal.   I would work from 8am to 4:30pm and then collapse into bed, sleeping until the next morning when it would start all over again.  Sometimes I would have to work late, from a mishap that would be work related.   On September 14^th I worked until midnight that night, driving to Armstrong with a colleague.   I then said goodbye to Family Services at Dilico Anishinabek Family Care on September 15^, 2017.

The week prior to the start of the program I told Mark that I would not be attending.  Anxiety had hit the rough in another facet of my brain.  What if nobody liked me, what if I didn’t fit in.  What if I didn’t make friends and the team thought I was a flake.  These were the questions, floating around in my brain.   What if I got lost, as I couldn’t find myself from point A to point B.   Mark then turned to google maps and did a 3D picture of the clinic.  He showed me where to park, where to walk and then what doors to go into.  I couldn’t have a cop out.  I was sold and there was no turning back. 

The first thing we did, after getting our schedules for the first week was to attend a lecture on the pain cycle.  This would be our starting off point.  If we didn’t buy into the program, we would be lost of the shuffle.   All whole team was introduced during this lecture, and stated that if anything else, they believed that the pain was real.   They didn’t need convinced of that, as it was true.   The pain cycle is a vicious cycle of doing too much, not doing enough and putting ourselves in flair ups.  The goal of the program is to learn how to manage the pain as a lifestyle choice.  They won’t decrease the pain, but they will give us information that will assist us in management instead.

I floated in and out of individual appointments with the team, educational sessions with my fellow groupmates and then did relaxation and stretches daily.   We learnt about mental health, keeping ourselves happy, pacing ourselves, various tools to assist us with daily living, keeping our bodies strong, medication and what it is like seeing medical professionals.   I felt over stimulated at best.  There were a lot of people, with a lot of information being thrown at me.  Many people forgot that I couldn’t read, and this was a large stumbling block. 

The team’s goals for me, looking back were how to keep me safe in and out of the program, as well as how to keep me from attempting suicide.  Both were heavy topics however, we worked through them.   The team looked scared when I joined them for individual appointments.  The look in their eyes often had a sappy tinge to them, like they didn’t really know how to help me.  I knew that I was intense, and I came off of needing as much help as I could get.  I even told the OT as we walked down the hallway during my first appointment with her, that I felt like she may be my newest best friend.  

The first thing that Kimberly did, the Occupational Therapist was do a daily living assessment.  When I told her, I needed help with all of the above, she looked at me and stated after I deep breath, okay, we will work on things, one day at a time.  She then introduced me to my actual newest best friend.  A walker.  

She stated that I could borrow it and check it out, see how it worked through the program.   She also stated that it was a good thing, to keep me safe.   I tried it out, and it did keep me safe.  It also decreased the amount of pain I was having.  I could focus more on the topics that I was supposed to be learning about, instead of wondering if and when I would fall again.  I could think clearly and the impact was substantial.  The pain decreased the more I used it as it was keeping me from putting pressure on those joints and muscles.  

The second thing that Kim did for me was she sent me to the orthopedic store for an AFO.  This is a foot brace that will keep my foot from dragging.  In return, I would have a better gait, and not look like I was 80.  She taught me how to care for both, and how to walk without looking at the floor.  As a gentleman once said, stop appearing to be looking for quarters and instead look at the sunshine!   Keep accepted me for who I was.  I gave her a run for her money, but in return, she provided me with a wealth of information.  

Another key player in the team was Stacey.  Stacey was the psychotherapist that I was assigned to.  Stacey worked with me on the dark thoughts that I was having and indenting them.  We worked on controlling my emotions on the day to day occurrences of life.  We chatted each week in depth and honestly about how I was coping in all three domains, past-present-future.   It was challenging, as, as I started the program the neurologist had changed my medication.  

This medication was not working well with me, and my brain was rejecting the switch.   Decreasing Effexor and starting Cymbalta was the worst thing that I could have done for myself.   This is where my anxiety steamed from in the present as I was going through a nightmare and a half, attempting to control my emotions, mood, and keeping my mind at bay.  

Mark and I continued to meet as well.  Mainly we chatted about my likes and dislikes for the program and how I felt being in it.  He called me out of my crap when he felt I was out of line and I either agreed with him or mostly, agreed to disagree.  He challenged me where I needed to be put into line and I responded, in the way I knew how.  We would start each session with the typical, “how are you” and my answer “fine”.  He would ask three times before I actually stated how I was.  

On October 20, 2017 my driver’s license was suspended.   After meeting with Dr. McCloud, the Chronic Pain Doctor he stated that neurologically, there was too much going on in my body.  He phoned me after I got home, to tell me that he was sending the paperwork in and suspending the license.  I was crushed, heartbroken and despaired of anything good.   This was my last form of independence and without it, I was nothing.  

I continued to meet with Mark, Stacey and Kim on a regular basis once the program finished.  There was still a lot of work to be done, and as such, we continued to tackle more of the in-depth issues that I was having.  

Kim continued to make referrals for me, fill out reference forms and be my advocate.  She also continued to suggest daily living tools that would assist me with life.  I brought the list into Motion Specialty and they ordered the equipment for me.   Kim was my safe zone and I knew, that I was her special client.  We worked through change and this is why I knew that she believed in me.  

While Kim took a more hands on approach, Stacey and I worked on trauma-based therapy.  We started to unpack the trauma in my life, and I started to respond.   Through flair ups, emotional upsets, ups and downs, he was there to catch me when I needed him.   He was a good person to have on my side and in return I continued to work hard and ‘white knuckle it’ when I couldn’t take the hard stuff any longer.  

Kim caught me when I was falling.  I was burnt out from work, emotionally and physically exhausted and needed new coping mechanisms for the pain and the injury.   She believed in me, as a person.  I wasn’t a case manager to her and I wasn’t a sick person either.  I was floating somewhere in the middle.  The thing about Kim was she was accepting.  When my social network couldn’t comprehend the illness that was storming through my body, like the eye of the hurricane, she saw potential in me.  

She did not take self-pity on me, she challenged and pushed me on days when she knew I could take it but relaxed the push on more painful days.  The approach was always calming and her smiley, calm and quiet personality drew me inward toward her.   I didn’t realize but we started having an unhealthy work relationship forming and she actually hindered my ability to stand on my own two feet. 

I had her wrapped around my fingers and she did the hard work, when I couldn’t.   She stopped, and we pulled back after the realization was over.   Stacey intervened with assistance from their manager and live continued.  There was planning meetings and discharge referrals.  There were days when I felt suicidal in the agency itself but I knew I could trust Kim and Stacey to walk me through the process.  They were my pillars and I was scared to leave their side.   I was uncertain and unaware of my own inner strength during this time, but the fight was not over!  

Between Kim, Stacey and the rest of the Chronic Pain Management team, they were fairly certain that due to the brain injury and the PTSD as well as work grief I had what is known as “Functional Neurological Disorder”.   This is when brains convert and inflame stress signals and pathways.  Instead of being clear pathways to the brain, the neurological system becomes inflamed and signals get crossed; in my case the disease mimicked multiple sclerosis.   I had muscle spasms, pain, increased stiffness, inability to walk, recognize letters and read as well as write.  My speech became blurred and I acquired a stutter.  My hearing decreased as well as my coordination.  

I was unable to feed or bath myself, remember what to do next and my life was full of adaptive aids to assist me with being as independent as possible.  The shock to my system came on April 5^th when a permanent catheter was in place, due to my inability to feel the urge to pee.   Before this, medications were tried with no success.  During the same time, a hysterectomy was planned on June 4, 2018 due to the endometriosis being inflamed, cysts growing and weird locations and with no help from medications either.  I felt the year of 2017/2018 creeping by slowly and that I was a ticking time bomb ready to explode.  

By then, I was in the depths of menopause and my world was flashing by.   I was feeling the loss of work and my social life.  

After meetings upon meetings, I started work with a speech and language pathologist at St Joseph’s Care group, worked intensively with my physiotherapist Adam at Lakehead Sports medicine clinic, had massages with both Leanne Shuttleworth and Jennifer and continued my work with Stacey at the Chronic Pain program, as well as my therapist from so many years ago, Heather in Ottawa.   My nurse practitioner Shawn was wonderfully amazing.   Every time I had questions or comments, he was there to answer them as easily as he could.  

Graduating from the six-week program and starting work as an outpatient with first the chronic pain program, then the neuro day program, then a psycho-neuro assessment lead to the conclusion that I was not going back to work any time soon. 

During this year, in late 2017, I learnt and implemented meditation and self-care into my daily routine.   By then, reading and writing became a struggle, I was using a walker on a daily basis and I was not the person who I started out being.   How I identified with the world was completely different and how I saw myself in others eyes was a sad state of affairs.  

Although aids and adaptations were provided to me, the problem was that no matter how hard I tried, I wasn’t getting any better and the disease still had no name.   Normal was getting further and further away.   At Christmas I developed a lingering stutter and communication was harder.  I couldn’t read, write or speak with others being able to understand me.  Vocal tone was high or low depending on the day.  This brain injury became more complex, and my body was failing in a completely new manner. 

However, given this, the outpatient portion of the chronic pain program was amazing.  They continued to work with me, until their expertise was so much that discharge was their only option (see Client vs therapist).   I continued to exercise with the field education group at the complex and have coffee with them afterwards, creating new friendships with my fellow survivors!

Hyperlink to chronic pain program