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.





Comments on: "Limitations, Energy, Blah blah blah" (4)

  1. Excellent post. I have struggled with this for 7 years now. Although I want to be social and I make plans weeks in advance, when the day actually arrives I find myself dreading it, devoid of energy and enthusiasm. Just taking a shower and drying my hair is exhausting and the thought of going out and smiling, nodding and being pleasant ( I lost my speech) is not appealing. I come home exhausted, stiff especially my neck and legs and swear I won’t go out ever again…until the next time I cave 😉


    • It hard, but omg I can’t imagine how hard not being able to speak would be! Do you use any assistive speech device? My friend Sarah with pls uses a computer mounted on her chair. How’s the nutrition situation working for you?


  2. Nice post ! Thank you for sharing this 😊


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