What is Normal?

Things have been on the challenging side lately, but my sense of humor is still fully intact. This is good since I use humor to get through those laugh or cry times. I am one of those patients....the ones described as medically complex, challenging, complicated, medical anomaly, etc.  The ones healthcare providers are not quite sure what to do with....or for. That is OK. I understand. I know I am hard to treat. I know there is no hope of cure, that I will never be "fixed." It is what it is. It is a part of living with multiple chronic illnesses, some of which are genetic.

I am known as the "less than 1%" or "outlier" among other things  Some physicians or other healthcare providers give up on me when they cannot help or are not sure what to do.  Others, openly acknowledge things are difficult to manage on their end, but they realize I am the one living with all of this.  We need an outside of the box approach as I clearly fit in no normal box.

What is sort of funny about all of this, is I have clinical training/background, have worked in clinical research. I know I am everyone's worst nightmare as a patient or research participant. I am the patient who takes time, trial and error, creativity.  I am so far outside of normal, that I'd be an outlier and skew results in research studies. However, I choose to use this realization to view things from a provider perspective, to have open conversations that I am not expecting anything other than support. I am not looking for cures, I was not even looking for diagnoses--had completely given up on that years ago.  Then, was diagnosed with two major conditions that explained a lot of the previously unexplained, seemingly random symptoms. Those diagnoses caught me totally off guard. I honestly had thought I'd never know.

The other funny/not so funny side is....for some reason I still try so hard to function as normally as possible, to appear as normal as possible. I have accepted the various illnesses and limitations, accepted life will never be normal, that my body creates its own normal. So, why do I still try to appear "normal?" I honestly do not know.....just know that I do.  When my body is more or less held together with compression clothing and kinesiology tape, I find ways to layer other clothes over the compression ones, clothes that hide the tape. When illnesses are not quite as invisible as usual, find clothes to mask the rashes, or hide the bruising, or cover purple legs from pooling from poor circulation. Side note on kinesio tape--I think this is the human version of duct tape--universal for holding body parts together/in place. 😉 Second side note on kinesio tape--I of course reacted to the adhesive after a few judicious applications.  Sigh.

Right now, no one is quite sure what to anticipate.  As if multiple chronic illnesses, surgeries, etc. were not enough, a car accident had to add to the complexities. That set me back far enough in surgery rehab that no one knows what time frame or outcomes to expect anymore. My body is already predictably unpredictable.  Add the extreme unpredictability of a car accident, and we are all sort of making it up as we go. 

So, gastroenterology clinic called me recently to discuss medications, allergies, etc. before upcoming GI procedures and tests. Thankfully, no changes in medications or allergies for once (reacting to kinesio tape does not count as adhesives are already on the allergy list). I was asked current weight....she was not happy with the number I told her and how much lower that number is from whatever I weighed at my appointment in clinic just over a month ago.  Um, yeah, I know....she ended with telling me hopefully the testing will help GI doctor help figure things out. Yep, I hope so too! But, quite honestly do not expect it. I have had GI issues my entire life that I recall. We get things to livable level and I move on with life until things get out of hand again.

Here I am living with chronic invisible illnesses, but seeking to life fully in spite of the challenges.  This is what brought me to the title and theme for this blog. Rather than chronic illness, focus on chronic wholeness--physical wellness, emotional wellness, mental wellness, spiritual wellness, etc.

Chronic Wholeness. Pursuing wholeness in brokenness, strength in weakness, health in illness. 

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Good-bye 2017, Hello 2018!

Here we are at the start of another new year.  An entire year is stretching out ahead, somewhat like a blank slate, offering a fresh start. The past year is over.  I like to reflect over the past year and what I learned, look ahead to the new year.  I rarely make resolutions. Rather, I have themes.  Sometimes the themes are chosen intentionally.  Other times, the themes emerge from circumstances as the year unfolds.  This last year, the major themes were trust and patience.  For the coming year, I am considering the idea of "being gentle with myself" as a medical provider encouraged me to do not too long ago.

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Travel Tips with Chronic Pain

The idea for this post arose from a recent trip.  I love traveling, seeing places, doing things, etc.  Unfortunately, my body does not, so I avoid travel unless necessary. The recent trip was necessary--previously scheduled commitments and not possible to back out at late notice.  I knew the trip would stretch me and I'd need a lot of recovery time.  I was able to break the trip up and make the drive each way over a couple of days each time.  The multiple commitments, meant that I had a few days at the destination to recover from the travel to get there.  It also meant having more time between driving days to recover from the previous part of the trip.

Basic tips:

Stop often!  I know where every rest stop is on my normal travel routes.  I also know where the rest stops without facilities are, where the gas stations are, anything that serves as a good stopping point as sometimes my body is just not going to make it to the next planned stop.

Move!  My body needs to move.  The longer I am forced to be inactive (car rides/driving), the more desperately I need to move.  A lot of my stops are just pacing or doing gentle stretches at rest stops to get my body moving and loosened up again.  Once I reach final destination, if late, it is lying prone with ice packs.  If early enough and access, it is finding a gym, or walking path or pool, or all of the above.  Then, lie prone with ice after that. Lying prone helps stretch out and undo the effects of prolonged sitting.

Ice! I have discovered various systems over the years of managing ice for travel.  I learned after one trip a very good reason to always leave some of my ice packs at home--I will need them once home.  I did not do that once, and there were other complicating factors and the end result was inability to get pain under control for hours. I use my ice packs from the hospital from surgeries as they seem to stay cold longer.  I use a couple of frozen water bottles to help keep ice packs cold, put them in a freezable insulated bag, which I then put inside another insulated lunch bag.  The water bottles work great as ice packs themselves once the ice packs are used up.  I have hip issues, so just set a water bottle at crease in leg, so ices hips pretty well. But, they could work for lumbar spine area as well. With this last trip being so long in the car, so long between stages, dubious access to freezers in the meantime, I ended up getting the instant ice packs. The instant ice packs are a great travel option.  I had boxes of them in the trunk of the car and could get fresh ones at the next stop to get out and move around. I found these ice packs were a good size, but these ice packs were colder. Yes, I got that big of box....or actually two of them as they were buy one, get one free.

Heat.  I do better with ice than heat, but sometimes heat helps. Or, switching back and forth between heat and ice. I have enough heating pads and hot packs to cover entire back at once. I am also grateful to have a car with heated seats.  This last trip, I had ice packs on my hips, and the heated seat on for my back at the same time.  It actually worked pretty well.

Distraction.  This may sound odd when driving.  I mean, when driving one needs to be focused on the road and surrounding environment, other vehicles, etc.  So, what is the use of distraction?  It is to distract from pain.  Every long distance trip, I sooner or later reach a point where I am just done.  I feel like I cannot handle another moment in the car, another moment of the trip, nothing is comfortable, etc.  I find music CDs helpful.  I have a playlist with some of the more intense music.  Anyway, I have some music that is calming, relaxing, soothing, some that is more intense and works well to help distract from pain.  As pain worsens, I also increase volume--within reason.

Driving versus riding.  If I have the option, I prefer riding as I can recline the seat fully, have more freedom to move even though seat belted.  Driving, there is less ability to move around.  I still do some--pelvic tilts, shoulders rolls, etc.  I have the seat adjusted just so, but will change it later if my body seems tired of it. Most who have ever watched me through a class, seminar, conference session, even waiting room or exam room, realize I pretty much never sit still--something is always moving.  Swinging my legs, stretching my back, shifting position almost constantly. Same with driving--almost never still. When driving, cruise control is invaluable, as it gives leg/foot a break.

Support pillows.  I have a back support pillow that I used for years for my back, then to sit on to help with low back/SI joints/hips.  I also have a neck pillow that I use even driving/riding locally. My old car required pillows, rolled towels, etc. to find something halfway decent.  My current car has electric adjustable seats, lumbar support, heated seats, etc.  So much nicer!  I noticed a definite difference in how well I tolerated travel.

Flying. Most of my travel has been road trips.  Flying creates a whole other set of needs.  Having to keep all medications in carry-on bag, carrying empty Ziploc bags to ask for ice once on the plane, having my water bottle with me empty to fill with water later, standing in the aisle once in the air and allowed to be out of seat, doing PT exercises in airport waiting areas between flights, walking/pacing, etc.  I love flying and hate flying.  Flying offers much shorter travel times. However, seating is miserably uncomfortable.  Pressure changes that can bother some peoples' ears bother my joints.  I flew right before my first hip surgery and it never occurred to me the pressure changes would affect my hips even though I knew they affect ears and that weather pressure changes affect my joints.  That was not a fun discovery.

Travel is still feasible with chronic pain and illness.  However, it sometimes takes a bit of advance planning.

Copyright © 2017 by Chronic Wholeness. All rights reserved.

The Power of Perspective

Perspective is how one views things and is one of many tools I utilize in managing life with the multiple challenges that accompany chronic illness.  When one is in chronic pain, or dealing with chronic fatigue, or depression, or some other symptom, it can be easy to get trapped into focusing on the unpleasant issue at hand.  "I am hurting."  "I am weary." "I am sad." These are easy to say in these situations.  However, "I am" are defining words.  It is possible when sad, to acknowledge the emotion--"I feel sad," but then choose to focus on something that brings joy, or choose to be cheerful in spite of the feelings of sadness. I cannot control what is happening, but I can control my response. This in turn can alleviate some of the otherwise natural feelings of helplessness that usually occur with circumstances one cannot control.

An example of this would be a not uncommon situation that most would view as negative: a car accident.  Accidents can be a pain--literally.  They cause damage to cars, people, property, etc. There is not much positive to find.  Or, is that really true?  What about looking at what happened, and realizing it could have been worse, but was not. There is nearly always a positive aspect; one just has to find it.

If running late, it can be easy to stress over how long one is stuck in traffic, or on an elevator, or a bus running behind schedule.  However, those are things one cannot control.  Worrying about them will increase stress and anxiety. Instead, do not look at the clock. Stay calm and focused if driving, an accident from being distracted will only take more time, plus endanger others.  If a passenger, reading or relaxation practice are good options. 

In the same way, on a bad pain day, or facing a new illness, it is possible to pause, take a deep breath, and look for what is good, or positive in the situation.

Key thought: learning to use perspective to alter one's sense of power versus helplessness in unchangeable circumstances. 

Copyright © 2017 by Chronic Wholeness. All rights reserved.

An Introduction to Chronic Wholeness

I will be writing about chronic illness in the context of wholeness or wellness.  I chose this to be my theme or purpose: pursuing wholeness in brokenness, strength in weakness, health in illness. 

Definitions
Chronic:

adjective

1.

constant; habitual; inveterate:

a chronic liar.

2.

continuing a long time or recurring frequently:

a chronic state of civil war.

3.

having long had a disease, habit, weakness, or the like:

a chronic invalid.

Source: Dictionary.com

Wholeness:

adjective

1.

comprising the full quantity, amount, extent, number, etc., without diminution or exception;
entire, full, or total:

He ate the whole pie. They ran the whole distance.

2.

containing all the elements properly belonging; complete:

We have a whole set of antique china.

3.

undivided; in one piece:

to swallow a thing whole.

Source: Dictionary.com

Chronic illness is sickness that lasts constantly.  Wholeness is being full, complete.  One could say that wholeness regarding chronic illness is completely, fully sick.  However, my perspective is seeing wholeness as the choice to be complete, to live fully even with chronic illness.

Copyright © 2017 by Chronic Wholeness. All rights reserved.