Sharing the lessons along the way…

Down and Dirty Truth?


The concept of mindfulness has become quite the buzzword in the last decade in both professional, spiritual, and self-help verbiage.  I am not sure whether it has become overused as a concept, but I feel certain it is not used enough in our day-to-day lives.  I don’t mean the word itself.  I mean the practice of it.  Our lives are too busy and we feel too hurried most of the time.

The way I see it, mindfulness is a combination of skill sets.  There are a variety of skills (for lack of another word) necessary to practice it, and most of those we have heard of, but find ourselves struggling with in our quest for genuine mindfulness.

One of the first things required is personal awareness.  This means that we have awareness of our hopes, our fears, our triggers, our thought patterns, our feelings, our bodies, our needs, our limitations and whatever else that makes us an individual.

While many of us think we are fully aware of these things, we often don’t take into account those programmed behavioral patterns and defense mechanisms that automatically create a reaction in response to them.  These triggers trip us up, cause conflict with others, create defensiveness and generate all around ick in our lives.  We create these dramas repeatedly because we don’t fully believe we are creating them or contributing to them.

Until we can have enough awareness and enough honesty with ourselves (dropping our defensiveness and denial that we are indeed humans that are imperfect), we aren’t going to be able to see these dramas unfold as part of our pattern of relating.  Instead, we perpetuate the dramas over and over again.

I watch myself create and take part in others’ dramas the most when I am not taking care of my basic needs of self-care.  Chronic, progressive illness aside, we are all going to find ourselves doing this at home, at work, at the grocery store, in the parking lot, etc. if we aren’t taking care of those needs.

In addition to down and dirty honesty with ourselves and awareness of our patterns, we aren’t likely to have mindfulness.  We also aren’t likely to respond and not react either, which definitely requires some degree of mindfulness.

If you look up definitions of mindfulness, you will find a variety of different versions of the same basic concept (in addition to hundreds of pages of people advertising they can teach you how for a fee).  Mindfulness is being aware, accepting, and non-judgmental about what we are seeing about ourselves.  It is being aware of what we are thinking, feeling and experiencing in our bodies, in our environments and everywhere.

I often feel the potential for reacting on a physical level first before I even realize there was a trigger.  Viscerally, I feel nauseated, tearful and angry at the same time, and know that something is definitely not ok with the interaction or environment I am experiencing.  I stop to search my memories for things that might be similar to see if it is my stuff or not first, so that I know better whether I am triggered and reacting to an experience or if it truly is something going on right now.

When we practice mindfulness, we are not reacting to the past.  We might be triggered in the present moment to react, but we stop short of that and mindfully process our experience so that we can respond in a thoughtful and considerate way that is actually appropriate to the situation at hand.  Because mindfulness is a practice, we are practicing it so that we can get better at it.

“You are inflexible!”

conservation of energy

I have been asked several times in recent months about my seeming inflexibility with spontaneous activities.  I haven’t had a good response because it is something that feels complicated to explain.

The simple answer is that I have only a certain amount of energy per day, and sometimes that is all used up by noon.  If I have plans to do something later in the day, then I try to conserve it.  If there isn’t anything planned, then I continue to go until the energy is gone.  Sometimes I keep going anyway, but I am working hard at not doing that more.

It is much like how we drive our cars.  We have a certain distance we can go on a full tank of gas.  Once that gas is gone, the car stops until we put more gas in it.  Quality sleep is my gas station.

In the weeks since my freak out, I have been tracking my steps with a pedometer to see if that is a good measure for me of how much is too much.  It so far appears to be valuable information.

It is really easy to get the goal on most pedometers of 10,000 steps per day.  That is not my goal because I soon realized that anything more than 6,500 steps makes for wobbly legs.  The clonus is worse, balance is terrible, the calves and tiny feet muscles are tighter and painful, and it is time to slow things down for the day.

I can go over my steps so easily that I did it on a day when I spent several hours sitting on a couch at my dad’s house watching football with at least an hour of time sitting in a car.  I was shocked to see the step count after going to the grocery store and pharmacy one day, and even more shocked on laundry and vacuuming days.

The step count is important because of the amount of conscious energy that I expend with each step.  Each time my legs lift off the ground, I am consciously aware of how far they are off the ground and where they land beneath me.  The walker alleviates some of that because at least I am pushing off it to get my legs and feet up, but if the legs are moving and I stop paying attention, the walker and I have accidents.

A fair part of that energy is used up fairly quickly on even a short dog walk, which is how my days begin.  Duke and I are on pace with our walks because he too has a limited distance before his hind legs give out, so I share the responsibility for Ruby who needs a little longer of a walk.

Prior to the day the left leg stopped walking along with my right, I had done my best to take Ruby farther every day after we dropped Duke back off for over a month.  I was also walking distances that were quite honestly overkill just because I felt like I could at the time.

But let me get back to the question of my perceived inflexibility.  It isn’t a matter of flexibility as much as it is about rationing out my energy the best I can.  Sometimes a night of sleep isn’t enough to refill my figurative gas tank, so I have to save what I have for work, responsibilities and daily tasks.

If nothing is left, that is when it seems I am being inflexible and even go so far as to stop planning any activities until I feel like I have had enough quality sleep to allow for it.

Trifecta Taboo Trash

Trifecta Taboo Bash

I have started writing this blog over at least five times.  Then I remembered that I am the girl who gets on a full elevator and refuses turn around to watch the floors light up above the door.  If a social norm doesn’t make sense to me, I generally do not follow it.  I prefer to talk to people in the elevator, and I prefer to talk about things no one else seems to want to talk about.

There are probably three primary no-no’s ( according to our  social norms) about which to we must not talk publicly—bladder function, bowel function and sexual function.  It is the trifecta of no-no’s quite frankly, but that is precisely what I want to talk a little bit about.

When it comes to bodily functions, it is hard to predict which motor functions will be most affected by my illness because everyone who has it seems to be affected differently.  It would seem that the motor functions in this trifecta area of no-no topics are rarely discussed in forums, but are by no means excluded from the realm of muscle groups affected by my illness as well as other illnesses involving the central nervous system.

These are certainly relevant to having a quality of life and are probably even more critical in terms of managing illness than many of the other things being discussed.  I have found a few specific blogs and resources outside of the disease specific forums, but it took quite a bit of effort to track them down.

The pelvic floor area is full of muscle groups that are inextricably connected to one another.  Not only are they connected to one another, but they are also connected to the muscles in our hips that connect to our legs and so forth.  Isolating them to work on them separately or even as a group can be a challenge, although there are some physical therapy exercises and yoga poses out there that target the trifecta no-no muscles.

Even doctors have parceled out this entire pelvic floor, so if I want to talk about the dysfunction in each area, I have to talk to three different doctors and each seems to operate as if the others are unrelated.

This entire midsection works well together for the relatively healthy person who has a healthy nervous system.  For me, everything in the trifecta grouping of topics becomes a trial and error case study.  In general, I have dysregulation of the pelvic floor muscles that creates issues with bowel and bladder functions.  You already know I have to use a catheter three times a day and there is a similar problem with my bowels that isn’t as easily remedied.

The last of the trifecta topics I don’t think I have ever talked about is the relationship to sexual function into this same grouping of muscles and functions.  I am more fortunate than many with neurological conditions because I do have sexual functioning, and since no one talks much about it, I am not sure if it is normal.

I haven’t heard anyone talk about how much more of a challenge it is to integrate into an already overly taxed body.  Or perhaps the relationship these muscles have with the muscles we use to walk, and how careful we should be when we haven’t used them for a while.

What about the need to have a willing partner who will work cooperatively with you as you brain storm trial and error ideas?  I cannot say I have ever heard anything except for some of them saying their partners understood they weren’t interested in having sex or something like that.  I am not saying I want details, but suggestions of positions that don’t make the legs start continuous spasms or something like that could be helpful.  Anything really could be helpful.

Was any of that so hard to read about?  I don’t plan to talk all that specifically about any of the trifecta topics, but I will share what I figure out might be helpful in managing the problems created by the trifecta topics.


It has been a week of hyper-awareness since the freak out.  I don’t think it was in a negative or harmful way, but more in a way of being more aware of how I do tend to take my body for granted sometimes.

It was a week of appreciating every movement made possible by the messages constantly sent from my brain and spinal cord to the muscles of each of my limbs.  It was a week of understanding that failure to honor those can result in a failure of their proper function.

My left leg isn’t fully back to where it was before last weekend, although it is functional and I am upright and relatively stable standing without the aid of anything.  The walker is indeed helpful with walking, but unlike earlier in the week, it is not the only way walking can occur.

The focus now is allowing my body to recover from its trauma.  While it is doing that, I am figuring out how to keep those muscle groups that seized up a bit less tight.  That may take a bit more effort on my part in keeping up with physical therapy types of things, and also may require more medication during the day than I have been willing up to this point to take.

There are several important tidbits worth sharing that came out of last weekend’s freak out experience.  The first one is that no matter how bad it was, it did improve with rest and medication.  That is an important one for me to keep in mind as I move forward.  Previous memories did not turn out that quite that way.

The second tidbit is that I was able to share how I was feeling as soon as it was appropriate, and I asked for help as I needed it throughout the freak out period.  Even if that meant being completely raw and open; oozing tears and snot; and making squeaking sounds for words, I did it.  And I had no real discomfort doing it.

Finally, no matter how freaked out I was, my life did not come to a screeching halt as a result of a physical crisis.  I worked Sunday on my classes as I usually do, and the only thing I did differently on Monday to work at the homeless program was park my car closer to my destination and stay put in the same general area, which is Duke’s preference these days too.

The world didn’t stop.  Nor does it ever have to when this sort of thing happens.  I am not delusional enough to think that it won’t happen again.  I am already prepared for my legs to go wonky now and again.  That is why the power wheelchair is in my office, and other plans are already in place.

I might not enjoy having to carry out the myriad of back up plans I made years ago, but they are there for that reason—so my world and my life continue to move forward regardless of if that it upright or sitting down with wheels.


Uh oh…BIG Uh oh

My morning was almost like any other Saturday morning.  There was coffee, a dog walk, and a shower before heading over to my friend’s house to help with the cutest little girl in the land’s second birthday party.

I felt a bit sleep deprived, but generally good.  My legs felt stable, and I even walked the block with my walker over to help.

As people arrived, I visited out in the yard with them, colored with the birthday girl at the little table, held the cutest little boy in the land, and all the while couldn’t quite identify what didn’t feel quite right with my legs.

Until I was no longer in full command of my left foot or leg, so my balance was off.  I sat down in a chair and stayed there until I could figure out how I would make my way inside making a little of an effort as possible.  My walker was parked in the car port, and try as I might, I was unable to telepathically transport it to me in the yard.

My secret hope was that if I sat there long enough in one spot,  my left leg would work as it was supposed to again.

The conversations around me were interesting, so I was engaged in them enough to focus less on what seemed to be a problem.  I got up from my chair to give a couple of hugs to some early leavers and noted I had no real balance without leaning on something.

It was time for me to make my way inside, as unnoticed as possible, to find a seat.  While I wanted to continue chatting outside, I kept wanting to get up to chat with folks I hadn’t seen in a while who were seated or standing too far away, but couldn’t.

I could feel the tears welling up and I was starting to use a great deal of energy trying not to freak out, so I had to move myself away from the party in case I was unsuccessful.

As I made my way inside, I had trouble lifting up the left foot high enough off the ground to walk over towels in the Florida room, nearly tripping myself up on them.  A burst of adrenaline followed the near fall, which seemed to help get me back in the house safely.  As the adrenaline slowed, the tears wanted to fall even more.

My goal was to get inside so that I could sit quietly and figure out how to shift my thoughts about my left leg not working right.  But there were people inside, so I sat down and listened to someone sharing their woes of marriage and motherhood as a distraction to the tears.

After getting home from the party, the tears fell.  Continuing into the following day, the tears and freaking out continued.  Each task I attempted to complete was exhausting because the left leg simply would not cooperate at all.  While it improved with rest and medication Sunday, I undid all of that within an hour by attempting to do laundry and tend to the dogs’ needs.

It steadily improved as the days progressed.  I grew fonder of my walker.  I grew less fond of the freaking out and flashing back to the early days of the illness, however.  I am not sure all of that has to be necessary next time I overdo it.

I do not know if there was one incident of overdoing it, or an accumulation of months of overdoing it, but I do know I need to keep better track of the types of activities I am doing, energies being expended doing them, and at least do my best to decrease the chances of this sort of thing happening again in the future.




Surgery Anniversary Week

Jaycee's Birthday Present from Gramcee

Jaycee’s Birthday Present from Gramcee

“If you have already lost everything and made your way through it, what do you have to lose by trying to create something new?”

I have asked myself this question nearly every day for the past eight or nine years.  This question was part of a discussion or three that I had yesterday.  Because of that, I found myself thinking about just how critical it was to what happened next in my life.

It certainly became a valid part of moving outside of my comfort zone after illness, homelessness, nursing home…This shift got me out of isolation, guardedness and fear.  It allowed me to create a better quality of life, develop a social support network of quality people, and restored my faith in humanity in general.

This shift made room for growth in every area of my life.  I stopped fearing the risks.  I was empowered and more confident in my own ability to cope with whatever might come next.  Even through the last few years of pump drama, I felt confident I would figure out how to manage eventually.  I felt confident that I had many cheerleaders lifting me up to do just that.

My deepest fear was a repeat performance of losing everything, and I was often struggling with letting go of that fear.  The day I realized that it could never get as bad as it once was, and took back my own power, was the day I let that fear remind me of my strength.

Yet another pivotal shift in thinking that accelerated growth, allowed me to move through the pump drama, and ultimately the pump’s removal, to see the other side with more clarity.  It certainly isn’t perfect over here either, but it is lovely just the same.

This week, it has been a year since the surgery to remove my second baclofen pump.  While I continue to feel frustrated with limitations, pain, and such, I continue to move forward.  I continue to grow.  I continue to take risks, even when it would be far easier to not.  I continue to work, and I continue to feel grateful for a life that is overflowing with blessings.

It is almost as if I am finally growing into the very shoes I was meant to wear in this life.  There is a sense of quiet contentedness in being who I am; more so now, than I can ever recall.  It feels comfortable without feeling stagnant.  It feels like home, with the understanding that new paint on the walls and rearranging the furniture will always be necessary to improve upon it.

There is not anything in particular I am searching for anymore.  It was here all along just waiting for me to stop resisting, to stop fearing long enough, to look within to find it.

What do you have to lose by taking a risk?  The better question is really what do you have to gain?






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