Just for this Week…

Well, it’s another Monday, another week, and another month.  I love a fresh start, wherever I can find them.  To me, the start of the new week brings so much opportunity to do better than last week.

Last week’s monkey wrenches and monsters took the wind out of my sails.  For a good part of the week, I felt trapped and defeated.  My plan was foiled, and I honestly didn’t know what to do.

It’s funny how in the vulnerability of moments like that, or days like that in the case of last week, opportunities to create a better plan can emerge.  Since I got the referral for physical and occupational therapy, I made an agreement with myself to be completely open and receptive to whatever they suggested.

There are parts of my plan that clearly are not working for me, so it only makes sense to do so.

The physical therapist Saturday said, “I really hope you think about conserving your energy.”  He had mentioned energy conservation many times during his evaluation of me, but his last words to me included a pause, intense eye contact, and a furrowed brow.

I had already realized that I was doing too much too soon, but it took two painful tendinitis situations to slow me down.  Having had so much pain for so long, the pain in my Achilles’ heel and wrist pain seemed like no big deal—until last week anyway.  I hardly honored my pain while walking everywhere, plus some with the cane.

Ironically, I spent much of the week stuck because I could not walk around without my cane.  You have to admit that being unable to walk because of my arm and wrist was somewhat funny.

I get it now though.  I don’t want to keep injuring myself by doing more than my body is prepared to do, so this week, I will take a figurative step back.

Reeling myself in when I feel good, is a difficult task.  There are a million things I want to do, need to do, and have to say no to doing.  Okay maybe not 1 million, but you know what I mean.

It probably took being unable to use my right hand and arm for me to get the point.  I have shared with you all about how much more energy my body is using when it is dealing with spasticity.

Apparently, sometimes I would like to believe that is not true, and think that I can do as much as I did when things were going so well with my Codman intrathecal baclofen pump.

I spent some time yesterday in a meeting with myself.  I realized during this meeting, that I am not really fully on board with the slowing down and backing up a bit with my rehabilitation.  The best I could do was to agree to be okay with it for this week.

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The Thaw after the Meltdown

I wrote yesterday’s blog before I melted down Wednesday night.  I had apparently reached my frustration tolerance threshold as I reached my physical limit.

As intrigued as I am about this entire process, I still spend time feeling overwhelmed, frustrated and over it.  Wednesday was all of that as I allowed pain to overshadow most rational, present moment thought.

With the help of my dogs and Mr. Awesome, I could stop the flow of tears.  Being able to say, “This just sucks!” to another human during a meltdown is actually helpful (no, I didn’t know that).  Later, I tried to play my addictive little game to stop the flow of thoughts going through my head, but wasn’t very successful.

It is fascinating to be aware of where my thoughts go when pain levels, energy levels and frustration levels are maxed.  Some of them were mini blogs I was composing.  Some were tracing back the week’s activities to figure out what I did to make myself suddenly start hurting so much.

And then…

Well, then, I was going on a tirade about my experience with doctors (not my PCP or neurologist necessarily).  I let this tirade go on for a bit in my head to see where it would go.  And I realized that I am still feeling some anger about all the events leading to the pain, removal of the pump, not being heard and being invalidated so much.  Oh, and apparently there is some anger in there for the pain.

I feel certain this isn’t the first time in the last few years that I have lost sleep about all of that.  As I thought about it while resting yesterday, I thought about how many negative thoughts I have attached to pain.

Everything that has happened in the past few years with my pump is attached to pain.  The process of decreasing the dose of intrathecal baclofen is attached to it.  Each doctor invalidation seemed to get the most time in my thoughts—seriously, like each time, each doctor and there were a lot of them.

I share all of this because I figured all of that was in me somewhere and have wondered when and where it might surface since the pump is gone now.  And because now that I know, I have a choice whether to deal with it as it wells up.  Or wait and let it build into another meltdown when I am tired, in pain and frustrated about something else!

I am thinking is that if I can finally let go of the feelings and thoughts attached to the pain, that the pain will lessen as well.  The pain has its own pathway through the brain and body just like addiction, our thoughts, our routines, etc.  If I can weaken the strength of that pathway as I heal, then maybe…

…maybe my plan will work.

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Post Op Day 1: Ouchies and Answers

The day of surgery always feels better than the day after, unfortunately.  Since there are three incisions, it is a bit of a challenge to get comfortable.

The one in the back is at an angle the doctor said, and that was the only way he could get everything out back there that was attached to the catheter tip.  He said that might take a little longer to heal as well.  The other two are on either side of my tummy.

I talked to the doctor yesterday because there had been some bleeding from my back incision Thursday, and we had been watching that incision to make sure that no spinal fluid is leaking from it.

Pretty Flowers

That is the purpose of the girdle (they call it a binder) that I showed you in yesterday’s picture—to add pressure to keep the hole where the catheter tip went into my spine from leaking.

The binder is pretty uncomfortable on the other incisions, but I am not about to remove it.

I took the day off yesterday from teaching so that I could rest.  I did rest, but the pain medications aren’t helping that much with the pain and they seem to agitate me a bit more than I would like.

The doctor kept me awake (under twilight anesthesia) while he did the back part of the surgery and he said that as soon as he got the catheter tip out, I was saying it felt better already.

My previous doctors had created a small loop there with the catheter tubing to anchor it and prevent it from pulling out of my spinal canal.  I am sure they did this because the Codman was pulled all the way out.

It is likely why I was having so much pain back there and apparently was also responsible for my torso burning with nerve pain.  I no longer have the torso burning horribly, although I may just have the incision pain competing for my attention right now.

I get to wear this girdle for two more days before switching to an Ace bandage around the back incision.  A spinal fluid leak would be quite a setback and would require a neurosurgeon going back in there and applying a patch to stop the leak.  Reminds me of fixing a hole in a flat tire, but quite a bit more of an ordeal.

Resting and being still should help prevent that as well, so that is what I am doing.  Not that I really feel like doing much else yet anyway.

Thank you all for the facebook love, the comments love, the texts, the emails, the flowers, the help and the hugs!!

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I Have Cold Feet

It is probably normal to get cold feet anytime there is a major life changing decision at hand.  Or maybe “normal” is irrelevant.  I am here to tell you that I have a couple of really cold feet.

Don’t get me wrong, my body is still screaming for an opportunity to heal itself without this pump.  I hear it loud and clear, and plan to honor it.

It’s my brain that is still trying to figure out how to make this pump work.

Each time my brain thinks it has a valid argument or solution, I take a deep breath or move my torso in a way that makes the pump hurt me.  It jabs me back to the reality that led to the decision to begin with.

My brain has no argument or solution for the jabbing.

It appears that the only retort my brain can do in response to the pain is to remind me of a life waaaaaaay before the pump.  I am pretty sure it’s taking me way back to irrelevant time periods when I had no treatment and no diagnosis.

When that retort is not effective, it points out all the things I won’t be able to do without the pump.  My weekend in WV had quite a bit of evidence.  This retort creates sadness.

As a result, my feet are cold.  I am finding myself struggling to take the next steps toward removing the intrathecal baclofen pump.  Anyone have spare feet warmers?

“But you don’t look like you’re in pain…”

 

Several times lately, people have said to me, “When I see you, you don’t look or seem like you are having pain.”  I say, “Good!”  Sometimes I follow up to share how much energy I expend so that no one does.  That is my goal.

I leave the house as if I am well and I go out into the world to share smiles and to be a bright spot in as many lives as I can.

When I was thinking about this later, I stopped and said, “Wait!  What the heck is a person in pain supposed to look or seem like?”

Is there some socially appropriate way to convey it, look it, act it?  Is there a preconceived idea of what a person in pain must look like?

Am I doing it all wrong?

I don’t know any of the answers to these questions, although it would be interesting to do some research and to hear your ideas in the comments.

I am pretty sure if I am doing it all wrong that I am not interested in conforming to whatever might be the “right” idea of how a person in pain should look and seem.

Here is what I know about my pain:

1. I have it, blah blah blah.
2. I would rather not make you uncomfortable by wearing a neon T-shirt that broadcasts it.
3. I already know it makes you feel helpless to know it.
4. I experience it 24/7, so I don’t necessarily want to talk about it all the time.
5. It makes me happy to hear, “You don’t look or act like you are in pain” or, “Well, you look good” because that means I am pulling it off!

We’ve already established in previous blogs that my methods to manage my life with chronic pain aren’t always effective.  I can own that.  There is not a handbook, unfortunately, but I am sure there is no right or wrong way to “look” or “seem” when I am in pain.

What the bleep do I know?

So, really, what the bleep do I know about surrender?

Some days and with some things, I know a lot.  Other days and with other things, not always much at all.

When I left you last time, I had realized just how little I seemed to “get” about surrender when friends had already offered to help me do something that makes my pain worse.

A brave, dear friend left a comment agreeing that it would seem like I know very little about surrendering and allowing others to help me.

If you followed the pump surgery saga of 2010-2011, you may know that I have gotten so much better at asking and receiving help in this life.  But, you also know that surrendering to that notion continues to be a struggle.

To be honest, I had hoped to be back to being able to take care of my own sh#t.  That seems to be my measure of being “ok.”  I have had to be “dependent” on others for help with one thing or another in the past decade—enough for a lifetime if you ask me!

However, it appears that the universe did not ask me.  It appears that I need to shift my entire belief system about what all of this means.

Let me re-cap what I already know:

1.      Asking for help is a sign of courage, not weakness.

2.      Accepting/receiving help takes a bit more grace and strength than asking for it.

I believe these whole-heartedly, but struggle like hell to consistently practice them in real life.  I still need backed into the proverbial corner.

Here is what I realize happens as a result of my struggle (er, um, resistance):

1.      I isolate (and/or alienate) people for whom I care a great deal and who care for me.

2.     I disconnect myself from the “community” and social support that I (and we all) need to thrive.

Why would anyone do that?  Unfortunately, I have and I think the bottom line is my continued, long-standing belief that I should do and take care of all of my own stuff or I am not doing my part.  Once I take care of my own stuff, I can be of better service to others.

So, what happens if my chronic pain does not allow me to take care of my own stuff?

My reasoning does not account for that.  For a while, I tried beating my head against brick walls with doctors to fix the pain.  That did not work.  It is not a fixable pain.

For another while, I simply just didn’t (because I physically couldn’t) do my own stuff.  That was not an effective strategy either.

My last ditch effort was to do it anyway and to suffer through it.  My last blog post summarizes that experience, which was completely ridiculous. [Hence wearing the dunce hat sitting in the proverbial corner.]

The thing is, I can wrap my brain around temporary help.  I can ask for it and receive it pretty well now.  What I cannot wrap my brain around is having others help me with my own stuff on a long-term basis.

Here is my question for you this time:

If you needed to ask for help no end date, how would you come to terms with it?

Seriously, I want to know what you think! The more feedback the better.  Your comments help me to see what is right in front of me sometimes!