Sharing the lessons along the way…

Posts tagged ‘social support’

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.



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?






Mirror Epiphani-ette


Years ago at a professional conference, the presenter suggested that those we meet in our lives serve as mirrors of ourselves.  I was ok with that suggestion until she went further to suggest that even those characteristics we found in others that we disliked were also within us to some degree.  After initially resisting the notion that day, I did come around to seeing that she was right.

Over and over again since then, I tend to see new interactions as opportunities to see something new in myself reflected back—good, bad or ugly.  I may not always enjoy it, but at least I know there is some opportunity.

The times that get my attention most are when there is a negative characteristic (or forty) being reflected in the mirror.  Those seem more obvious in terms of growth opportunities, so naturally I try to look closely at those.  I do this by seeking to better understand the human mirror’s negativity, so that I may better understand such a quality in myself.

Then, a few days ago, I had an interesting epiphani-ette.  It occurred to me that I rarely notice the positive reflections.  I am surrounded by and continue to meet some brilliant, talented and loving humans beings.  I celebrate that fact, and am grateful for those within my support system on a daily basis, but it is interesting to me that I never thought about this concept applying to the mirrors.

I call it an epiphani-ette because it wasn’t earth shattering or even memorable when it occurred to me.  I thought about it over several days and couldn’t even tell you which day it first occurred to me.  Full-blown epiphanies have to be shared immediately with someone, if not here in my blog so it isn’t forgotten or lost!

With this baby epiphany, I hope to start to notice a more balanced mirror image and at least remember that I have as much to grow in recognizing the good characteristics, as I have to grow in the less than stellar ones.


Limitations, Perspective, Blah Blah Blah

patienceAfter writing my last blog, I called up a sounding board to process it further.  I came to a few very important, and perspective shifting realizations that I want to share you.

The first one was the catalyst for picking up the telephone for a sounding board.  I realized that between working at HEP, volunteering, and teaching my classes for Phoenix, that I had been far surpassing full time hours for at least a month.  Doh!

The second one happened toward the end of my sounding board conversation.  Since my students turn in their assignments on Sundays, I generally try to have everything graded and feedback returned by Tuesday evenings.  I have done it for six years, even though I technically have six days to complete it.  I have my varied reasons for doing it this way, but realized it isn’t serving me right now.  Therefore, I don’t have to break my neck each week to do it.

In light of the first thing, I was reminded of several things from my sounding board.  The first was that there were four—yes four—funerals I have attended in 5 or 6 weeks.  The fourth was a suicide and required a great deal of emotional energy for a variety of reasons.  In addition, I had three relatively traumatic dental appointments in a row, a bad cold and another treatment resistant infection within that same time period.

Of course I am still tired in spite of the changes I made in recent weeks.  That is a lot of stuff to happen in a short time frame for anyone—never mind for someone whose central nervous system is overactive.

To boot, I am adjusting to two new positive additions to my life.  The changes I have made are positive and likely will yield more restful for me.  I have to be patient and allow my body whatever time it needs to get itself back to balance in the meantime.

Here I was, all too ready and eager to accept that I had missed something I could be doing better to feel better.  Perhaps I could better pay attention to the time spent volunteering since it never occurred to me to pay that much attention in terms of energy expenditure.  I can rearrange my grading too.  But, being patient was the only thing I was missing.

I am so grateful to have sounding boards who can remind me of just how much I tend to minimize the amount of energy I exert on various things in my life!

Family IS Personal

family is...

I started a piece about the importance of family and ended up with a piece about what my definition is of family.

It all started a few days ago when our lovely and awesome Dino Rara posted a blog about family.  It made me really stop and think about what and who makes up my family.  Family is truly a very personal affair.

Family for me includes my  biological relatives, which all happen to be quite unique and interesting humans.  Sometimes, I am proud to be related to them and other times they drive me batty.  I love them just the same.

Family also includes my friends who are present here in my world.  I value this diverse group of humans who enhance my world in ways that I have yet to understand.  I even have coworkers, clients and students that are playing roles similar to my older (or younger) siblings at this particular moment in time.

My friends out there in the virtual world are also a part of my family.  You are just as present as those who are in my world daily, weekly, etc.  You are as diverse as the other group, but I have not yet had the privilege to meet you in person.  That does not diminish your value to the family structure.

There are other beings in my family as well.  My dogs are the equivalent of children in my life, so they are also a valued part of the core family.

Family is family, so it doesn’t matter if you are genetically related or you are virtually related.  No one is any more or less valuable.  I have a relatively large family that spans at least the states, Canada and Australia.  I love that!

I love being open to including so many humans into the core family structure.  It wasn’t all that long ago that I would have chosen to have only my two dogs as my family.  There is so much I would have missed out on had I kept that perspective!

As it is now, I feel like I am unable to spend as much time with my family as I would like because I am trying to manage illness symptoms, work, etc.  I could not get by in this life without everyone who makes up my family–no matter where you are.

What do you define as family?  Are you open to allowing people into your world?



Always have a spare

photo (16)

My favorite part about having a plan is that I will carry it out regardless of how anxious I am about doing it.  Particularly if I have a spare back up plan or two.

One of these weeks, I might actually have to use one of my back up plans and I honestly thought today might be that day.

The plan was to go to work at the Homeless Emergency Project (HEP), just like last week, with similar backup plans as last week.  While I did not intend to not do that, a night full of muscle spasms and morning full of more clonus made the thought of it scary.

I took the dogs for our walk and roll, like usual.  I stretched, rode my exercise bike and continued to get Duke and me ready to go.  My legs were doing a bit of an unsteady jerky movement as I moved about my house.

Each time I would start to feel my heart rate go up at the thoughts of what this means, I would slow down, take a few deep breaths and continue.

Pressing on the brake and gas pedal was ok, so I texted my friend that Duke and I heading to HEP.  I decided I would continue using the cane even though I noticed it was taking much more forearm, wrist and hand muscle strength the farther we went.

Within the first hour, I traded out the new cane I bought Friday for a different cane because I swore it was the cane causing my arm, wrist and hand pain.  It looked like a cane swap-meet, as everyone who was sitting out there with Duke and I brought out their different canes for me to try.

I continued to amble around HEP’s campus—farther than I had intended going– from air-conditioned spot to air-conditioned spot.  I did go up the stairs, which didn’t seem that much different, except that I had to pay more attention to make sure my feet were clearing each step.

Going down used to be the easiest part.  Yesterday, that was more challenging, but am I sure by Monday I will have figured that out.

It probably was not the cane, although the handle on my bartered one is better to push off from.  It is more likely the need to make the cane do the work of at least one leg that was the issue.  I will have to figure that out more once my wrist recovers from the day.

After all that walking around in the heat of the afternoon, I wasn’t sure how that gas pedal/brake thing was going to go, but my friend was on standby.  It was not great, but it was do-able enough to safely get Duke and I the two miles home.

No need to worry, I wouldn’t dare put Duke or anyone else’s life in jeopardy with my driving—I would have gladly called my friend to come and get us.

For me, it is having a plan (and several backups) that helps me to move through the most anxious of times.  Always keep a spare handy.


Kitt O'Malley

Bipolar Writer and Mental Health Advocate


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