Sharing the lessons along the way…


Sometimes when I say I don’t have time, what I am really saying is that I don’t have the energy.  While time lately has been a bit scarce for anything except dogs and work, I am not sure I have the energy for much else either.

My quality down time is still missing, although I have increased it from a month ago.  I think by the time I get that down time, however, I am in so much pain, or am so fatigued, that it doesn’t have the same quality. By that point, it isn’t restful or regenerative.  By that point, it is not even restorative.  Even the extra sleep loses its quality.

What I cannot quite figure out is at what point in my week it crosses over that line, since that does seem to vary widely from week to week.  It also varies widely on how well I separate other people’s expectations of me, from what I am actually able to do.  I am often unable to make this separation when I know that meeting my needs may well not meet someone else’s needs.

The way I see it (when I am not too tired to see it in a wonky way) is that I am responsible for meeting my needs and no one is going to do that for me.  Each of us have that responsibility on our own.  We reach out for help when there is something outside of the stuff only we can do, but other than that, we each are responsible for our own needs.  When I am tired, I get that all mixed up and operate as if I have to do everything—not just my own everything, but everyone else’s.

Most of the time, I am clear on where my stuff ends and yours starts.  It is when I am overly tired and missing out on quality time to meet my needs that it all gets wonky.  I cannot continue to expend energy reeling myself back from that wonkiness.  I simply don’t have it.

Energy conservation and self-care have to be the two most significant variables in balancing our lives, but especially a life with a chronic illness.  I say it all the time because I know it is true.  I generally do fairly well at practicing what I preach, but do indeed struggle to maintain the balance.  There is no formula or routine that works every single day or every single week.

I cannot control whether or not my need to say “no” hurts someone’s feelings.  Only they have control over how they perceive the “no”.  What I can control is my own follow through on doing what I need to do to function at my best when I do say “yes”.

This isn’t a new struggle.  I have posted many blogs about it at various points over the years.  I struggle differently with it under different circumstances, but the bottom line remains exactly the same as it always has.

We all start our days with a limited amount of energy and time.  We all have to figure out how to work within those limits to do what needs to be done first, and if anything is left, well then that is a blessing.




Greatest Strength

tea bag love

Some days, some weeks, and some months we lose sight of our strengths because we are mighty busy focusing on the limitations and weaknesses.

The other day was one such day and the other week was one such week.

There were many things I wanted and needed to do, but found my body to be uncooperative with my wants.

Enter the message from my tea bag…

Sometimes a small reminder of what I do have to offer, regardless of anything else, is enough to shift my thinking.  Perhaps it will help you today, too.

ruby is home

Ms. Ruby has arrived into the household of Duke and The Tawny!

While the dynamics are quite different from those between Duke and Amore, it has been a relatively challenge-filled weekend for me.  I didn’t realize just how emotional it was going to be for me to bring another dog into the house after Amore.  Fortunately, by the time the long drive back home from Hardee County was over, I was more focused on the logistics of things than the tears that wanted to fall.

Mom seems to have her commands mixed up because some of the commands Ruby learned in her prison training aren’t the same ones I learned when Duke and Amore went through basic obedience.  Bless Ruby’s heart, she did the best she could on our first walk with Duke and I, given that I likely totally confused her.

Today was our second walk (the heat in FL right now is ridiculous) and we all did better.  After our first short walk since Duke can’t really go far, I took Ruby by herself and she was pretty awesome with her commands.  I am pretty sure I used the correct ones and studied up on them again before we headed out.

All of this newness have me thinking about all the other things I have had to adjust to in the past six months or more.  It really is no wonder I feel as tired as I do, quite frankly.  Fortunately, I started out the year making sure that I simplified and streamlined as much as possible.

It really is the simplicity of the basics in this life that make everything else better.   Healthy food, quality sleep, quality down time, and quality social time certainly set the stage for better balance in my life.  All of this also sets the stage to better adapt to change while managing a chronic illness, two jobs, and now again two dogs with different needs.

My problem is that I often deviate from those simple basics and forget that all of them are necessary.  I have been forgoing the quality down time and replacing it with social, and the two are simply not interchangeable for a person with an overactive central nervous system.

While attempting to catch up on dental and other health concerns, I have also forgone the quality down time with appointments in addition to the social.  It hasn’t really served me well, particularly as I embark on a new adjustment at home.

I have given myself some leeway in the past several months to test out the limits of interchanging these basics.  It was a necessary part of my process of figuring out how far I can push before my body begins to reel me back into its necessary balance.

I have learned a lot from the process, but also have learned that it takes me a bit longer to restore this balance once I reel it in.  I have been reeled in for nearly three weeks now and am still not quite back to where I would like to be.  There is some work to be done for sure!  But isn’t that always the case?



Honeymoon Island

Honeymoon Island

It has been a while since my last post, and I apologize for that!  It certainly isn’t because I haven’t had anything to share with you, but have had very little energy left to compose anything coherent.

I had an idea for what I might sit here and write for you this evening, but by the time the computer restarted, I lost focus on where I was really going to go with it.

Instead, I will just update you a bit on my little world.

The catheter and I have developed a relationship much like you might have with a housemate or dorm-mate that you don’t necessarily love, but can live with amicably.

I decided that it is what it is. I have a choice about whether I want to focus on the icky of it, or I can simply focus on the functionality of it.  For now, it is a necessary tool to help me to function.

My driving is much the same as it has been—limited driving radius.  I try to be careful not to overuse my legs when I know driving is in the plan.

Walking is still as it was…walker with dogs or distances or ramps or inclines.

Clonus in legs and jaws remains about the same.  I have caught up on dental work so that I can get a different night guard, which should ease some of the jaw pain and headaches.

Spasms are a bit worse lately, which tells me I am not doing all that I could be doing to ease those.  I have pretty much taken the easier route to manage those, so perhaps it is time to do a bit more.

I have been out and about a little more because of a couple of deaths and celebrations, so it has been good to catch up with friends.

There were quite a few of those events all around the same time, so I am finally catching up on much-needed rest and recuperation.  I have met some extra special humans in the process of all of that as well.

Some of the outings have been for fun, and of course, to test the limits of what I can and cannot do.  For example, I still suck at bowling even though I cannot do it the way I used to do it.  I can bowl.  I can access the beach area to watch the sun go down with the newer walker.

Duke continues to hold his own both at work and in watching after his absent-minded professor human mom.  His new dog sister graduates the prison program Friday and then comes to her forever home.

I think I am ready to have two dogs again, although this is going to be interesting with the age differences.

I am finding that sleep alone is my best ally, so I have gone out of my way in the last two weeks to ensure that there is enough quality sleep (even if it is broken through the night) to get back to center.

Each of these topics could be a blog in and of themselves, and perhaps will develop into their own once I am back on track a bit more.



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.


I Put What, Where?!?


In the spirit of really sharing what life is like with a chronic, progressive neurological illness, I felt like this too should be something you should get to know.  It would be my preference that this part of it magically disappears, but that probably isn’t going to be happening.

My last mention of bladder issues was in my last update when the urologist increased my medication.  The increase in medication to help me to urinate was not consistently giving me any relief, so the next step was to go in to have a nurse teach me how to self-cath.  I called last Wednesday, they said to come in that day, and I cried as I hung up the phone.

I really didn’t want to do this.  That was old news, but I didn’t know exactly why until the tears came when I hung up the phone.  More than not wanting to, I didn’t like thinking about what it potentially meant in the big scheme of things.

Just the same, I went, cracked jokes with the 22-year-old nurse who was teaching me, and learned anatomy that I probably should have learned in junior high science classes.  I toted out a large, clear baggie filled with single use catheters, along with my walker and purse back to the car.

Since then, I have gotten the hang of it.  My skill level isn’t matching my comfort level with doing it, however.  I find that each day I am growing more and more resistant to using them.  I don’t like it.  It’s gross.  I don’t know that it ever won’t be icky.  Of course it doesn’t matter how I feel about it, just so long as I do it with some regularity.

No one seems to be talking about this anywhere on the web.  They mention it, but don’t mention anything else—particularly what it is like emotionally to self-cath.  I never hear anyone with my illness talking about it, so it is my hope that someone somewhere might give me just a smidge of validation.

Neurogenic bladders aren’t talked about (some on MS and spinal cord injury sites) despite the fact that these are usually made worse by medications used to treat spasticity and clonus symptoms. I admit, this is not something I really want broadcasted out there on the world wide W myself, but it seems to me that someone needs to start the discussion.


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