The Real You

I have had a tertiary situation occur in the midst of trying to recovery from the most recent medical condition that greatly hampered any progress.  Okay, being real here. . . I quit.  I did.  I said, ‘forget it.  I can only handle so much physical pain at one time.  I have reached my limit.  Everyone should be happy, as others have said outright that I am not dealing with my diagnosis because I don’t “complain” enough.’  If they could hear me now, they would be very content to know that i have natural boundaries & limits of my pain like all people, and will, when pushed to my own personal limits, complain.  So, I am publicly stating that I am at the limit of what I can tolerate.

The conundrum is how to treat it.  Not as easy as it may seem, as the injuries incurred have a treatment that often conflict with appropriate treatment for my chronic condition.  I cannot remember the last time I drove a vehicle.  I take that back; I can.  The last day I went to work, I drove myself there and home.  I get lost in our moderate-sized community because I am not forced to think through how to get from Point A to Point B.  The first time I got lost while giving directions to a friend visiting, reality began to hit.

So you can perhaps sense the need, perhaps the desperation, to return to a more normal state physically.  Is it possible?  That depends on who you ask.  I am decades from giving up!  However, medication is currently impairing decision-making enough that I would not choose that route.

I have tried all other options in attempts to ease the pain.  Some have increased the pain, some have had a neutral effect, and a few have had minimal but slow improvement.  I am willing to be patient when I consider the options ahead if I accept this as the end.

Most of the medical professionals, as much as I appreciate & respect their views, would choose medication as the first option.  I am not saying it does not have a place in the course of treatment.  However, they are not in my home when it alters my thinking, my mood, my alertness – my role as mother and wife.  I don’t like having part of my personality disappear.  And I don’t seem to adjust to the medication over time. . . no matter how much time I am given. 

So they finally agreed it was time to return to some therapy, along with some additional treatments at therapy that had not been tried.  And?  This afternoon when the pain set in with its usual ‘I want to take a knife and stab myself so there will some physical proof of why I feel like this’ pain. . . I tried the at-home treatments rather than more pain medication.

I am determined to break the cycle.  The cycle of pain.  I am determined to life.  To live life fully, without impairment of medication when other options will work.  Everything in its proper place.  I am determined to be honest.  Someone asked me if I was surely feeling better because I ‘looked so good’.  I answered honestly.  No, but I am working on getting better.  I will be better.  Right now, I am not.

I am determined to be real.  The real me.  And I will be better physically, emotionally, and spiritually when I look back at this time. 

 

Fly Like an Eagle

That is what I can do. . . in my mind.  Ergo, the problem.  I have one good day, and I just go for it.  I have no self-control.  None!  I have lived with this condition for years, yet never have I experienced such a setback as this.  I try to come to terms with the fact that this could be. . . dare I say it?  Permanent?!  I can’t.  It is unthinkable to me.  How does one reconcile themself to a life of where they were working one day, loved their job, enjoyed their coworkers, took trips to the store, driving, getting the mail ~ you name it ~ for granted.  Now, I find my days consist of time on a couch.  And I am content! 

Why would I be content with such a drastic change in my lifestyle?  There are so many reasons.  The most obvious reason is that when I sit with my legs reclined, and engage my mind in activities on the computer, I am  not in pain.  I find that my world centers around keeping myself out of pain. 

I take the necessary medication to maintain as normal a life as possible.  The medication alone renders me unable to have the necessary skills to drive safely.  If anyone had told me a year ago I would be in this position, I believe I would have been stocking up on activities to do.  However, many of my favorite activities involve enough mobility that there is the relapsing PAIN.  So, without realizing it, I find myself favoring activities that I still enjoy that do not make me miserable. . . and miserable to be around.

What an odd life.  I get dressed on the floor of my walk-in closet, and am content with the simplest clothes.  I used to be an utter clothes hound!  Now, it is about function first.  Don’t get me wrong.  I still won’t leave the house without my makeup on.  I may have lost a lot of function, but I’ve not lost my mind!

I can still enjoy doing some landscaping, it just takes creativity and determination.  Unfortunately, this is where I get myself into trouble.  Something is just beyond my reach.  I am certain I can stand long enough to make things right.  And I can.  But come talk to me later and ask me if I would still have made that choice.  So I learn. 

I learn patience.  Acceptance.  New things to learn.  New people to meet.  New ways to meet people.  New ideas to explore.  Taking up old loves that I somehow lost the time to do because I was always too busy.  Behind every burden there is a blessing waiting to burst forth.  It is my responsibility to go look for that blessing.

What does the future hold?  I have no idea.  Someone pointed to my wheelchair over the weekend, and meant it kindly when they said they hated it, hated seeing me in it, and they were praying against it.  God, show me more of Your strength in my weakness until it is all you and there is nothing left of me.  I used to be bothered by such comments.  Now I pray for the other person.  God is showing me immeasurable things:  about myself, about what really matters, about eternal things rather than focusing on the things that I think I have to have right now.

So in my mind, I soar like an eagle.  I may not on my legs or in my chair.  But He is taking me to higher places than I would ever go without these experiences.  I am soaring.  It is all a matter of your perspective of soaring.

Definition of a Chronic Condition

I got rather curious.  Who came up with that term, and what does it mean in general?  I know what ‘chronic condition’ means in my life, but what does the average reader think of when they see or hear this phrase.  I give credit to Wikipedia for the following information:

“The term Invisible Disabilities[1] refers to a person’s symptoms such as extreme fatigue, dizziness, pain, weakness, cognitive impairments, etc. that are sometimes or always debilitating. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker. A person can have an invisible disability whether or not they have a ‘visible’ impairment or use an assistive device such as a wheelchair, walker or cane. For example, whether or not a person utilizes an assistive device, if they are restricted or limited by debilitating pain, fatigue, cognitive dysfunctions, dizziness, blurred vision, weakness, etc. these symptoms are their invisible disabilities.”[2] The Invisible Disabilities Advocate.

Some people with visual or auditory impairments who do not wear glasses or hearing aids may not be obviously impaired. (Some may wear contacts or have a cochlear implant instead.) A sitting disability is another category of invisible impairments. Sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on good days, or at all. Other examples include Asperger syndrome, attention disorders (ADD/ADHD), brain injuries, chronic pain, chronic fatigue syndrome, chemical sensitivities, fibromyalgia, epilepsy, and repetitive stress injuries.

Invisible disabilities can also include chronic illnesses such as renal failure and diabetes if those diseases significantly impair normal activities of daily living.

The article continues on, listing types of disabilities:  autoimmune, chronic pain, dietary, neurological, psychiatric, and multiple chemical sensitivity.  That was pretty eye-opening to me, to read some of the conditions listed under these different disabilities.  Let me leave you with just a bit more of their statistics cited from this article. . .

About 10% of Americans have a condition which could be considered an invisible disability.

• Nearly one in two Americans (133 million) has a chronic condition of one kind or another.^[1] According to this report, the most common chronic conditions are high blood pressure, arthritis, respiratory diseases like emphysema, and high cholesterol.

• That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.^[2]

• 96% of them live with an illness that is invisible. These people do not use a cane or any assistive device and may look, act, and feel perfectly healthy.^[3]

• 25% of people in the U.S. with a chronic condition have some type of activity limitation; the remaining 75% are not disabled by their chronic conditions.[4]

• 60% are between the ages of 18 and 64.^[4]

• 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases.^[5]

 

TENS Units

I am trying so hard to manage the level of pain I have.  I come up with a theory on what I am doing that causes the pain, when to try various things, and I think I just have my act soooooo together.  Oh to be so wise.

My physical therapist felt it was best to give things a rest for some time, which makes sense when looking at the big picture.  I took a break, and after about a week that seemed like the solution.  Soon I found the TENS unit was working wonders!  I even began using it proactively, thinking I could ward off the pain before it hit.  Take the pain medication, follow up immediately with the TENS unit, and it’s going to be a great day!

That worked great.  For several days.  Then, it didn’t.  In fact, it failed miserably.  A family member described it rather like a mild roller coaster with slow slopes up and down to express the improvement and setbacks.  A good visual example.  The big question is, am I getting better?

I reassessed things again.  The oddity that I am, I always loved exercise. In fact, anything physical.  So I went back to what was familiar.  Work the muscles one day, then give them a day of rest, then push them a little more the next day.  Good plan, works under normal conditions.  Well, the story every day is. . . I’m not normal!

I’m going to resting in peace.  I spent the morning moving my TENS unit around in conjunction with my pain medication.  I am having a lot of pain in my  neck, which i believe is because I don’t use my wheelchair to turn to people to speak to them.  I’m also not on the same level with them, height-wise.  I knew if I didn’t change my ways it would catch up with me. 

That is my own little secret that I am not sharing because I am really tired of therapy & all the medical stuff right now.  Okay, truthfully, I am at that point in the day when my medicine is making me really, really sick so what comes out right now may not represent where I am at attitude-wise for the rest of the day.  I just want to make some behavioral modifications, adjust what I can with regards to any DME equipment available to me, and move on. 

Quite honestly, I want a shower but my phone & emails have come at me with an onslaught all morning long. . . for 4 hours now and counting.  I generally can get myself ready in about 1.5 to 2 hrs.  When I have to do the full shower, etc. ~ everything ~ it is about 3 hrs. 

On a day like today, I don’t think anything could save me. I could not answer my phone or respond to emails, but then people rightfully ask how it is that I am at home recuperating and yet not available.  It’s a fair question.  If someone has a better solution than this, I would love to know what it is.  I am feeling flooded right now by attempts to manage the necessary affairs of my LOA, managing my pain, and wanting to be mentally sharp rather than be so constantly dulled by the medication.  I have been on it way too long for this to still be such a factor.  I think I’m a wuss!!