Sharing the lessons along the way…

Archive for the ‘Primary Lateral Sclerosis’ Category

I am not a Unicorn!!

Photo Courtesy of Chilledworld.com

Photo Courtesy of Chilledworld.com

I know this might be hard to believe, but I am a human being.  As such, I find that others often expect the alternate universe Tawny who has magical powers, is a unicorn or perhaps the Tawny that flies in invisible planes and can be in more than one place at a time.

Unlike the superhero Tawny who may or may not live in an alternate universe, I am not available 24/7 ready and willing to leap a tall buildings in a single bound.

In this reality, I need time to recuperate rest and not be “on” for others 24/7.  This was true long before my chronic condition, in fact.  I have known this about myself for a long time.  It wasn’t until after my diagnosis that I began to honor it more.  I know when I can absolutely do nothing more for anyone else unless I take care of myself.

Every now and again, I wish I could be in that alternate universe.  I wish I was a unicorn, had some magical beans or a wand or something so that I could continue to help all who need it in the best possible way.  Or to simply get to hang out with people I miss terribly and don’t get to see that often anymore.

And every now and again, I have others place these superhuman expectation on me.  To help in ways I am unable, or to do just that one more thing.  Sometimes they even use guilt to push me to wave my magic wand despite having already done as much as I could.

In this universe, I do the very best I can from the time I get up until the time I go to bed.  If anyone is going to challenge that “best” then it will be me because I know more than anyone else does just how important it is for me to do as much as I can to make life just a little bit better than it was before I arrived.

Believe me when I say this, I will always be harder on myself about it than anyone’s guilt trip or anyone’s attempt to push one of my buttons.  That’s why those guilt trips and button pushing attempts are less likely to work anymore and the answer is still no.

Actually, I hardly have anyone in my inner circle who doesn’t respect the answer no because they know me well enough to know that I totally would if I could.  They know it isn’t personal.  They know that I am not a unicorn and I love them for it!

I am grateful for everything I can do and spend my time and energy figuring out ways to do even more without sacrificing my well-being in the process.

Wouldn’t it be just a little bit fun though to have a super power, have unlimited energy (not the pathological kind), to constantly be able to serve humanity without any regard for self-care, have magic wands or magic beans or fly invisible planes?

“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.

 

Reflecting on the Big Ol’ Uh Oh

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.

 

 

 

Never. Stop. Trying.

 

never stop tryingPerhaps you know this about me by now, but if it needs mentioned, I am a person of action.  If something in my life is not working, I make every effort to put a plan in action to change it.

I bring this up because I am starting to wonder if most of our medical care isn’t contrary to this notion.

Off and on for years, I have asked, “What else can I do about this or about that?”

Often the response I get is, “Nothing.” Or perhaps, “You can try this medication or that medication.”  My all-time favorite is “You can get used to it.”  That one I will never forget because that was about me being wheelchair bound and we know how that turned out.  I never did because I didn’t believe I couldn’t do something about it.

It is rare that I get information from a doctor that allows me to do what I do best—take action.  I have gotten this from physical therapists, occupational therapists, psychotherapists, alternative medicine practitioners, and speech therapists; however, in my lifetime of visiting various medical practitioners.

While I might not always enjoy what the action is (take the intermittent self-catheterization for a prime example), I am willing to take it.  While I don’t get information from the doctor or whomever, I will take action to research it to try to figure it out anyway.

Several months ago, I learned and started doing pelvic floor exercises in an effort to avert the need for the use of the icky catheter.  While it hasn’t prevented that, I know it is helping strengthen my pelvic floor area which is necessary for bladder, bowel, and sexual function.

Neurogenic bladders, neurogenic bowels and such are fairly common with spinal cord injuries and diseases that affect the upper and lower motor neuron pathways.

My illness supposedly has upper motor neuron only involvement, and I will spare you the details of what I have taken upon myself to learn about the relationship between the upper motor neurons and these neurogenic systems.

My point is this:

I am doing just about everything I can possibly do that is within my power.  If it isn’t within my power to take action, I am taking action anyway to change my perception about it.  I am never going to love the catheter.  In fact, I may always think it is icky.  But I can still appreciate its necessity and how little control I have over its new role in my life.

 

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