Step by Step

For the past two weeks, I have been trying out a rather rigid routine for the dogs that has required me to walk a great deal more than I was.

My goal when I got this fancy pedometer was to stay around 8,000 steps a day because it seemed that over that made for a harder time walking.  The two weeks prior to adopting the new routine with the dogs, I only had a couple of days that were actually under the heart-healthy 10,000 steps, so I made an executive decision.

I decided that a better relationship with Ruby and a happier Duke were worth being well over my 10,000 steps by early afternoon.  To do this, I have switched around when I take the tizanidine, which is a systemic muscle relaxant in the same class as baclofen.  On most days, I take a small dose in the mornings now.  I had agreed to take a large dose at night, but was not willing to give up my brain in the day time hours if I didn’t have to.

There was a week where I was able to take it every morning (I had a week between classes) so I am not even sure I have that much of a noticeable brain function issue now.  I also found a decent enough ankle/foot brace that is helping to keep my left ankle more stable, and it even picks up my drop foot a bit too.  Once my quads get tired of lifting my feet high enough off the ground, I tend to trip more, so this brace seems to be helping the foot come up anyway.

It is quite a challenge to keep up a house, two dogs, a yard, etc. without walking over 10,000 steps per day.  Doing less means that not everything gets taken care of that needs to get taken care of, and that includes my dogs, groceries, etc.

I didn’t see any real difference as I have implemented these changes, except for more pain from tighter muscles in my feet and legs, and a bit more clonus later in the day.  At least it didn’t seem that notable until we got a second, but brief, cold snap.  It seemed back to par once it warmed back up.  We have an even colder one to come this week, so I will be interested to see how my body manages to accommodate to the extra walking.

The walker is a huge help in the longer walks with the dogs and there are some days that I probably wouldn’t be doing it if I didn’t have the walker to propel me forward.  With the cold (or the culmination of the two weeks of more steps), the steps got stiffer and slower, but the dogs didn’t seems to mind.

Since I get a lot of activity in the mornings, I am generally wiped out by evening time.  I am satisfied with that as a result if I am able to take care of my responsibilities each day.

 

 

 

Limitations, Energy, Blah blah blah

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.

 

 

 

Wrist Injury Update

It is been a little more than three weeks since I hurt my hand, wrist and forearm to the point of not being able to use it. I am trying to be patient, I really am.

While I have been receiving occupational therapy, it seems that this is taking forever. My occupational therapist reminded me yesterday that these types of injuries take time to heal.

In efforts to not use my right hand, I am creating the same pain on the left hand, wrist and forearm. A couple of days ago, I had over used my left, but the right was feeling some better, so I compensated with the right one.

The result at the end of the day, was tears. I needed to fill out some forms and I had been trying to wait until my hand felt some better, but I was running out of time.

Apparently I have tweaked both wrists now. It’s making for an interesting time. Once I tweaked them, it seems to take a couple of days of not using them much at all, for them to calm down and to feel less painful.

I am continuing my physical therapy exercises. We had to reduce the frequency of the arm and hand exercises, however.

It isn’t real likely that I’ll be using a cane any time soon with this hand. I’m warming up to the idea of just walking those short distances. I have tested it out a little bit here and there, and while I still do not trust my legs, I have had no problems.

I’m also trying to make the most of the downtime. It is a little bit frustrating not being able to write, do much on the computer, or anything else that requires my hands.

Going out anywhere presents so many logistical challenges, that I am choosing to only do what is necessary until I’m more comfortable with my legs.  I have found that I can hold a book, and appeared to have concentration and focus enough to read one.

The burning torso has made an appearance more frequently in the past week, but has not been of the same intensity as it was. I am no longer as distressed by it when it happens as I was.

I am choosing to view this as a lesson in patience, and presume this is the remedial class. It is not a lesson that I seem to learn very quickly, but that’s just going to have to be okay too.

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If it ain’t a shoe, is it a monkey?

It might not be a shoe, but it is one hell of a monkey-wrench to start my week.

I am unable to use my cane.

Not in the way you might think.  Not in any way that has ever been factored into any plan anywhere.

The sharp shooting pain that goes somewhere in my forearm, through my wrist and into my thumb and forefingers makes it difficult to even type these words.  My right arm that has been hurting quite a bit after walking around using the cane (in a way it shouldn’t be used), has revolted.

The shooting pain usually happens when I am trying to open a pill bottle or using the cane, and I noticed it more when I was walking the boys using my cane Saturday morning.  I didn’t think much of it because there is always a medium grade pain associated in my arm after using the cane as a leg.

After some rest, it is usually fine to do a moderate trek to somewhere.

Now, even with rest, it is balking.  I have iced, splinted, not used, blah, blah, blah with a little relief.

Perhaps the increase in spasticity in my arms has set the stage for this, but I am fairly confident it is an overuse injury from using the cane the way I use the cane.

Overuse injuries require not using what’s injured to heal.  I am not sure that is fully an option.  I need this hand, wrist and forearm to work online too.

If there is such a thing as being monkey wrenched, I think I have been monkey-wrenched.  I blame the monkey.

I guess if it is a monkey wrench, it isn’t a shoe though, right?

My primary concern is going to the Homeless Emergency Project with Duke today.  Yesterday, I spent a great amount of energy brainstorming alternatives to getting around without the cane.

Well, we know what those are:  manual wheelchair that this hand and arm cannot wheel around or the power chair that someone else is using.

Surely, there is a better solution than being pushed around in the manual chair?

Perhaps I could fly from place to place?  Or teleport myself?

Get a piggyback ride from Duke?  If Duke were only a bit taller…

My plan is actually to try to get around without the cane first.

Curbs, inclines and stairs are not options without the cane, so Duke and I will have to deal with that.

He will have to deal with turtle speed Tawny.  I thought I would carry the cane, but was advised against it…

Perhaps a resident wouldn’t mind pushing me to and fro in the manual wheelchair that is still in the car just in case.  That made it to plan B if my plan A doesn’t pan out.  I don’t know that plan C is an option, so I will be interested to see what develops as a plan D.

When you are monkey-wrenched and don’t know what to do, you just don’t know what to do.  I really don’t know how it will go today, but figure it will all work itself out.

This really isn’t a shoe though, right?!  It’s a monkey-wrench.

Update About ME!

This may be the most detailed update about me you have gotten in a while.  As I was struggling with the continued on and off burning nerve pain prior to Amore’s heart failure, I lost focus on some of the other reasons I made the decision to remove the pump.

If I lose focus or focus in too intensely on one thing, I completely forget about everything else that makes up the bigger picture.

Many things are different now that there is no longer baclofen going into my spinal fluid, and no longer a pump and catheter tubing throughout my torso.

What I noticed the fastest was the improvement in my bladder function.  My bladder wasn’t contracting well and was causing urinary retention for almost as long as I had the Medtronic pump.  I didn’t have the same problem with the Codman, which is why it never occurred to me that it was related.

I put off going to the urologist because I kept having to go to pain management to try to get help with the pain.  The burning nerve pain was my primary focus for most of the first year and a half I had the Medtronic.

When I finally went for urologic testing, I ended up having to take two different medications to be able to pee. Almost as soon as we started decreasing the intrathecal baclofen, I started needing less of the medication.  It has been a few weeks since I have taken any of the medications for that.

Since my pain has decreased and my body is now adjusted to no baclofen, my blood pressure is also lowering.  My primary doctor and I are in the process of removing the blood pressure medication altogether.

The incidence of vertigo has also decreased considerably.  There was hardly a day where I was not having episodes.  I even went to physical therapy to try to help with it, but her exercises were making my visual migraines worse.  I didn’t have problems with vertigo at all until the removal of the Codman and then getting the Medtronic baclofen pump.

Once I started looking into the urinary retention as a side effect of baclofen, I also noticed vertigo as another listed potential problem.  I wondered if that might also improve, and so far it has.

As my back incision continues to heal, it appears the nerve pain is more off than on.  Last week, I went four and ½ days before getting it again.  When it is coming back, it is often less intense than it was.  There are certain positions that seem to stretch that lumbar area and trigger it, but I have gotten overheated lately and it did not trigger it.

I need the cane to walk, but am walking.  I need the cane to take steps up and down, but can take steps up and down.  I can drive short distances.  If I go where the stoplights are long or there is a lot of traffic, my leg starts to become uncooperative.

What else am I forgetting?!

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My Achilles’ Heel

Gray438-cropped (Photo credit: Wikipedia)

Following up yesterday’s insightful post with an Achilles’ heel issue almost makes me laugh out loud.  My figurative Achilles’ heel now shifts to my actual Achilles’ heel discussion.

For a couple of months, I have had a pain in my right heel.  Compared to other issues, it has been minor, so I haven’t mentioned it.

When I saw my primary care doctor Tuesday, I brought it up because it seemed to be getting worse since the surgery.

I thought it might be a heel spur or something because the pain was very localized to a spot on the right side of my heel.

The Achilles’ tendon is really a merging of several muscles from the calf.  I learned that when I was isolating which calf muscles to stretch and work on when we first started decreasing the intrathecal baclofen doses.

I noticed it went from only hurting when that part of my heel touched my shoe or the floor or my other foot, to hurting after I had walked around.

Since the surgery to remove the baclofen pump, I have been walking more with the cane around HEP’s campus and everywhere else because I wasn’t able to do my other rehab exercises.

After sharing all this with my doctor, he felt around on my foot.  He suspects it is an Achilles’ tendon issue rather than a heel spur.  The timing of noticing it coincided with increased spasticity in my calves, so it makes sense.  The problem is more the tightness in my calf muscles connecting to it than the tendon itself, but the tightness is irritating the tendon just the same.

Since my incisions are still sore because the suture issue is not resolved yet, I am really not able to do the exercises I was doing to help ease the tight calf muscles just yet.  A heating pad to my calf helped ease the pain after walking all over HEP Wednesday and my legs in the water (particularly in the hot tub) helped it Thursday.

The exercise bike would be helpful if I could do it.  I cannot do my stretching without having a warm up of some kind beforehand and the bike used to serve as that.

Surely, in the week ahead, my incision areas will be less tender, the incision/suture issues will be resolved and I can get back to rehabbing the illness before more problems from the symptoms catch up to me.