Sharing the lessons along the way…

“Should” I?

In my efforts to simplify in 2014, I have realized that until I can better figure out my limits with my illness symptoms, I have to lower my expectations and stick to my plans.

In my mind, I can still do all that I could do when I had few symptoms and a baclofen pump that caused no issues.  My mind hasn’t caught up to the last three years of events.  It is sometimes fascinating to realize that something as simple as getting up from a chair, or from the car into someone’s house is quite different from what it was.

I realized that I am placing the same expectations on myself to do things as I was before.  My body is reminding me that I am exhausted from doing the basics, so I have been more selective about how else I choose to spend my time.  I spend much of my “spare” time resting up from one thing, so that I can enjoy the next thing or do the next thing well.

While I have made choices and selecting activities that best fit, I have still felt like I “should” be at this event or “should” be able to do something more.  It isn’t a new place to be for me.  I have struggled with this since the pump drama started and the nerve pain created limitations.  The nerve pain (burning torso) is still an issue, and now I have spastic, jerking muscles to contend with as well.

My mind has to catch up to all of these physical differences.  I am not quite sure how to help it along unless I continue to simplify and adjust my expectations.  It would probably help if I stop taking on others’ expectations of me as my own too.  If I haven’t caught up to the differences, I feel certain no one else really has either.

I generally plan my week around my working schedules.  I don’t plan anything extra on working days if I can help it, and this includes my physical therapy.  If a lot of walking is going to be involved (or driving) then there are certain exercises I cannot do before hand.

I also try to limit plans to daytime or so that they end in time for me to slow down my overly active central nervous system before bedtime.  I think I have a pretty good idea of how to do this for myself.  I think I would like to do better at making sure it happens.

My idea here is that if I can stop thinking about things in terms of what I used to be able to do, or in terms of what I could be doing (or should), then I can be more comfortable where I am.  It isn’t like I don’t get to do things or see people I love to see.  I certainly do.  I would prefer to do these things without having to sacrifice physical therapy, sleep or other important self-care tasks, however.




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