Coping With Other People's Expectations

Why is it that other people always seem to either think you can do more than you actually can, or they think you can't do as much as you actually can?  Why don't they just see you as you really are? 

Do the ones who won't accept your limitations just not want to deal with the fact that you need more help than they are able to give?

Do the ones who add to your limitations with what they think should be your limitations do this out of guilt or out of needing to feel needed?

I don't have the answers.  What I do know is that I would just like it if people would accept me as I am, help me when I need help, and let me do the things I can do without trying to take that away from me.  But I also see that it can be a fine line here.  Those who feel I can do more than I can may think they are being encouraging and helping to push me to improve but not seeing that they may be pushing too hard.  Some may also just not see the limitations at all because they want to think of me as being the strong woman I always used to be.  Then those who take pity on me and want to help with everything whether I need the help or not, or worse, want to help with things I don't need help for but not help with things that I do need help with can hurt me too.  It makes trying to deal with my issues even more difficult when I have to also deal with how they respond to me.  No matter which way they see me, how they respond to me can be a real setback to helping me improve.

I wish it were easier to make people understand.  But all I can do is work on myself and just hope that they come to know what I can and can't do, for now.  Maybe down the road I will improve more.  Maybe I won't.  But for today, I am what I am.  I just want them to know that and accept me as I am.

Counting My Spoons

There is a website about invisible illness that talks about spoons and spoonies.  The theory goes something like this:  You wake up in the morning and take inventory of how many spoons you have to get you through the day.  I don't remember exactly why they use the terminology of spoons, but to continue, these spoons represent the amount of energy you have to last you through the day.  So if you wake up and feel really good you have more spoons than if you wake up and feel bad.  

As you inventory your spoons you also inventory the activities you have planned for the day.  Then you try to figure out how many spoons each activity is going to need for you to get through it.  Again, I don't know how spoons got into the mix, but the concept works for me.  

I am just now getting used to this "Spoon Theory" and learning how to apply it to my daily life.  Most days I  don't have a lot planned.  Unfortunately you can't collect unused spoons to use on another day.  It just doesn't work that way.

Now when some event comes up that you really would enjoy participating in, you know ahead of time that it is going to require a lot more spoons.  After you have done this for awhile you kind of start to figure out what you can handle and what you can't.  The best teacher is at the end of the day when you have depleted all your spoons and end up exhausted wishing you had not used them all.  It's those lessons you tend to remember.  Other great teachers show you the next day what happens if you use up all your spoons the day before.  Sometimes you wake up already with a deficit and wonder how you will make it through the day.  It's these times you decide whether or not the activities that used up all your spoons were worth the effort.  It's these times that help you decide whether or not to participate in future activities that require many spoons.

Over the past year I have learned to always include driving time both ways, along with any waiting time involved, and any extra activities that might be included.  This comes in handy when planning activities.  For example, the latest event is an invitation to a big concert that I would really enjoy attending.  In itself the concert is not a big spoon-consumer.  However, when I include driving time to and from, getting there early and waiting in line, the concert itself, the time spent in traffic when leaving, finding a place to stop to eat out (even fast food counts in spoon time), I come up with a seven to eight hour trip.  Yes having a wheelchair MIGHT get us in quicker because we would get to ask for help, but it still makes for a long day and more spoons than I have on one of my best days.  I have no guarantees ahead of time what each morning is going to be like or how many spoons I will have on any given day to work with.  So the result is that right now going to this concert is a big MAYBE.  

This is how all activities outside of the "normal" daily stuff usually go for me.   I make tentative plans to go but then might end up changing my mind at the last minute depending on how I feel that day.  What a learning experience it has been for me.  I understand so much better what other people go through now and what it takes for them to get out and do things they want to do.

For more information on the "Spoon Theory" please check out TheSpoonTheory and other information on the But You Don't Look Sick Website