The Pain Chronicles, Vol 1

Blog 9

Welcome back!

My name is Wylie and I’m your PainPAL

Thanks for checking out my Blog and Reading about my experiences related to #ChronicPain, #Disability, #Depression, Activities of Daily Living and Quality of Life.  Today, I’m introducing a new #PainPAL #Blog #series called,
“The Pain Chronicles”

I hope ‘Pain Chronicles’ gives you some insights into the specifics of what I go through each day, how I handle the adversity and suffering, plus the ways in which I’ve changed my life in order to cope with the disability and the situations now.  Disability’s offered a LOT of opportunities for me to try and make changes in my life, but only recently did I discover that to be a ‘silver lining’.


The Pain Chronicles, Vol.1  ...  by Wylie Linquist
"Searching Within, and the Eye of the Storm: 
Observing the effects of chronic pain and disability in my life."

A Storm Can CHANGE EVERYTHING Around You;
my injury in 2001 did the same.

Initially I didn’t deal well with the resulting disability.  I didn’t know how.  The doctors said it was a temporary disability and that with surgery to repair both of my knees, I get better and perhaps even be able to resume my jewelry career.  Looking back nearly 17 years later, it’s easy to see their forecast wasn’t close to correct.

Back then, at 26, I thought I was a pretty good problem solver too, and thought I could handle whatever situations were thrown to me.  By way of example:  I had after all, graduated from the University of Wisconsin at Madison with a degree in Geography (the mother of all sciences), and during school had worked part-time in the Water Resources department of the Wisconsin Geological and Natural History Survey.  My biggest project was quite a challenge of detective work and problem solving, including checking the location of every water well ever drilled in Dane County Wisconsin (including Madison, the Capital of Wisconsin).

Records of ever single well are kept at the Wis. Geological Survey, available to the public by request.  Double checking the location of each report, though considerable in number, turned out to be VERY important, given well-drillers frequently entered an incorrect location on the report.  Pre-GPS (Global Positioning Satellite) and before the age of computers and Google telling us within a foot of, sometimes I had reports with well locations miles off or even townships.  And in 1995 and 1996, when I was doing this huge project, I wasn’t using a computer either!!  Tasked with problem solving locations, I used street addresses, township maps, plat-books, and maps showing the history of who owned each parcel or acreage of land!

With a minor/emphasis at UW of People and Environment Interaction, this was fascinating to see, how mapping and scientific studies could show our interaction, and how WE ARE Changing the face of the Earth.  With water wells, I realized the importance of getting a correct location for the report.  This ACCURACY is crucial, given ALL the Geologic information (like a history of the Earth at that spot!) drillers include within the report.  For the purposes of geologic studies, especially for ground-water studies, the well reports were used to create maps showing local impact of land use.  With these maps we can see how human interaction impacts our groundwater!  In this case, taken ALL together, mapping helps scientists show for example, how pesticide contamination moves in our groundwater.  It's a little like weather forecasting, now Hydro-Geologists can forecast what areas, and water wells may be affected by pesticide-contaminated water.

In 1996, my final project at the Geological Survey was the measurement (with time) of the actual flow of the groundwater in Door County Wisconsin.  I won’t go into the measurement techniques, but it’s interesting to see how science continues to improve its measure of man’s interactions and impact on the Earth.  What’s really cool these days, is the discovery that scientists can use satellites (especially looking in infrared) to look and take pictures of the Earth (check out the Science Channel TV show ‘What on Earth?’).  It’s critically important to continue learning how we interact, plus what the consequences are, of our Choices, upon other people, and upon ourselves too!

With those ideas of interaction and problem solving as a background, let me begin my ‘search within’:  observing and learning the effects of disability and chronic pain, on myself and in my life.  Indeed, my quality of life changed with the injury in 2001, but I didn’t really understand HOW Dramatic a change it was, until I began to examine the change I measured in my Activities of Daily Living (known as ADL).  One measure of your ADL that you may immediately take note of, is the measurement of your steps per day, if you have an iPhone.

Initially however, when I look back, I remember the difficulty of looking within;  it started with trying to be honest with myself.  That was difficult to say the least, because I felt embarrassed about my situation.  Here I am, a young guy, ready to make a difference.  Now the rug's been sweep from beneath me.  I suppose no one likes to look at the bad things about themselves, but what's far worse than a zit on your forehead (that’s on the outside), is what's within: whatever that bad thing is, usually houses emotional baggage.

For me, it was in the Grieving were I faced some of the BIGGEST emotional challenges.  Yet I didn’t start to face anything for several years.  ‘Denial’ had me on lock-down for at least five or six years, partly because I thought I’d be getting better sooner rather than … 15+ years later??   But it was also difficult to grieve because I wasn’t sure WHAT to grieve about.  Do I grieve about how much pain I’m in?  Do I grieve about losing my job and not being able to work everyday?  Do I grieve because I can’t make any money, and I live in poverty, and can’t go buy things I’d like to have, or just go to a ballgame or cool concert each month?  Do I grieve because I can’t go out, and hang out like I used to … go to parties, meet and have fun with women, and go on normal dates?  Do I grieve because no one seems to care about how bad life feels right now??

I’ve lost my MOBILITY!!
I can’t run, or bike, or play baseball or basketball or GOLF!!!  I can’t go skiing or go sailing, I can’t even walk around Lake Merritt like a normal person.  Is that what I need to grieve about???  Maybe I need to grieve about all of it, and remember I wasn’t prepared for what had happened to me.  That it wasn’t my fault.  That I’d find a way to get through it, by the Grace of God.  But for those first handful of years, I Was Lost!  and I Was Broken (I’m still broken, but I’m much more spiritually and mentally whole than I was at the start of the disability — if that makes any sense) … that’s what I kept thinking anyway … and it really wasn’t helpful.  With that ever-present/persistent Lost-ness, Broken-ness feeling, sort of following me from dawn to dust, from wake up to sleep, I began to experience the worst Depression I’d ever experienced.

During the first few years of disability, looking back, I see that I didn’t care.  I didn’t really know ‘How to Care’ either.  I also didn’t know how to ‘Love’, myself, my knees, my body, mind and spirit.  I had no real self-respect.  I was angry, and I was so mad at being hurt.  Day after day, it never got better and often the pain would just gnaw at me till I took another pill.  That was the ‘messy’ part of what I was experiencing:  I didn’t know how to understand the pain.  Sometimes there were pain-spasms, sometimes gnawing-pain, other times locking-pain, stabbing-pain, serrated-pain and sometimes the knee would ‘give-way’.

Oddly, each knee was different too, in the quality, frequency and duration of the pain.  Everyone, doctors included, called them ‘knees’, but they’re not ‘knees’;  they’re the ‘left knee’ and the ‘right knee’.  It didn’t dawn on me till years later, that I needed to do a better job of identifying each knee and the pain that each was going through.  Thankfully, with the help of a psychologist and the pain management doctor, I began to ask better questions, and start getting involved in the learning process, and the healing process, instead of covering my eyes and hiding my head in the sand, and not caring.

17 years of pain, suffering and taking pain medication, have taught me, that the #crisis #America faces isn’t an #Opioid crisis, it’s a Communication Crisis, this one is between doctor and patient.  #Patients and #Doctors don’t know how to communicate with each other about the Pain! nor the singular/individual situations the patient finds themselves in.  Truth is, there isn’t a ‘One size fits all’ prescription that the Doctor can use.  And believe me, MANY Have Tried!

However, what has WORKED FOR ME, is to include the additional treatment of a #Psychologist, along with the #PainManagement Doctor.  In fact, if every patient currently being seen by a Doctor prescribing opioids, also had to be seen each week or every other week, by a Licensed Psychologist, I think patients would see dramatic benefits.

When I first was seen by a Pain Management Doctor, I didn’t know HOW to take care of my HURT SELF!!  I didn’t know that part of the Healing I needed was to start going through grieving.  The Pain Doctor instead gave me pain medications, then anti-depressants.  Only after I started making BIG mistakes in life, tangible evidence I was acting irresponsibly:  not as an addict, but the side effects of the pain meds and anti-depressants, were changing my ability to make reasonable decisions, did the Pain Management Doctor prescribe treatment with a Psychologist.

What a difference this made to me!!!  It’s EASY to See WHY:  simply the fact that I spent 30 to 45 minutes with the Psychologist, whereas I’d only spend 5 to 10 minutes with the Pain Management Doctor, drives home the importance of spending time with a Doctor who can ask appropriate questions and make sure I receive appropriate help.  In the care of the Psychologist, I started to get involved with my healing process, precisely because I HAD SOMEONE TO SPEAK WITH REGULARLY!!!  With PAIN, Ignorance is NOT BLISS!!!

I began to learn more about why the pain was happening, and with both doctors help, the three of us put together a ‘COPING’ plan.  I hadn’t a clue how to cope with pain after the injury happened in 2001.  In fact it literally took years to learn what coping meant, plus what I could try that might help in coping … and that was at the direction of the Psychologist, not the Pain Management Doctor.

Sadly, that’s been part of the legacy of my disability:  it’s been an experiment, not just an experience.  The Pain Doctor wasn’t concerned about managing my pain, they seemed more interested in getting me in and out, giving me my medications refill, and my next appointment.  I probably averaged 5minutes a visit.  Where as, visiting a Psychologist always is a 30min to 45min session, and we can cover a lot in that time!

It’s my time with the Psychologist that helped me begin the “Search Within — trying to Find and Understand Self Healing”.  I’ve had to experiment and try a lot of different things, from multiple kinds of pain medications, to mindfulness ‘meditation’, to medical marijuana and CBD, to many different types of exercises and trying to eat more healthy.  But I reached a new plateau when I finally acknowledged that My Body Is HURT.  (In fact, that makes me emotional just typing that right now!)  In PAIN, my mind is caught, trapped between feeling pain, and wanting to escape the pain.  Thankfully, the gift of Faith has kept me going, staying positive, and not giving up.

It’s been a combination of my Attitude, and my problem solving skills (like those I’ve mentioned above) that have helped too, as I recently came up with, and am trying to implement a ‘coping plan’ of consecutive days of Rest, including USING Ice EVERY DAY to help lessen inflammation, using my wheelchair and scooter more often, continue to see the Psychologist, Pain Management Doctors, PLUS continue to Exercise, go to Church each week and Pray regularly.  But it was the Exercise, and going to Church, which rescued me from Depression.

Because I have to leave the apartment to go, and while I’m not interested in talking with other people, it’s helpful just being around others, especially feeling the energy they have, PLUS getting outside to feel the sun too!!  This really helped me to draw in new breath.  Worshiping and praying at Church inspired me, and the energy of exercise reinvigorated me physically.
 
BUT ... Depression would smother me against the ropes, and it’d make me consider the ease of wanting to throw it all away.  It’d force me to drink from the well of despair, and then add insults to my injury.

The depression and despair was tough to swallow because there was no caring, no love, no future, no light, rather, anything positive would be driven from my sight, as depression would leave me feeling lost after demeaning my entire life experience.

Hope had no power.  Faith, my only lifeline to Love.  In a world of Billions, I felt alone, Suffocating in the knowledge I Wasn’t Worth Anyone’s Time or Care.  Only THAT Pain Cared about me.  Only THAT Pain was There FOR Me.

There was no other presence I could see — all I could feel was the judgment of the Pain;  the daily torture of Pain that I didn’t know how to overcome.  The storm happened everyday, but couldn’t I escape?  NO, that was a struggle, a battle I didn’t even know how to fight.

 
I Held on to the Lifeline of Faith Through it All!
The DARK-NIGHT of the Soul . . . 
THAT GREATEST of STORMS, NEVER seeming to CEASE,
HAD, somehow Passed . . .

And then, with each passing day I’ve claimed a little more of the lifeline.  Prayer, and going to Church, would renew my strength, and THEN, I began to marvel, because I could see the Goodness I discovered within others, especially once I realized it was ok, and good to ask them for help.  It was in the midst of Depression when I recognized I was holding on, with all my heart, to Faith’s lifeline, that I discovered my self-worth:
(a small epiphany) … God gave me Faith, I must be Worth something !!!

Since then, I’ve held fast to that kernel of Self-Worth ...


Thanks for reading!

My name is Wylie, and I’m your PainPAL


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