Carnival Rides

It's been a mad, crazy year since I last posted.  A lot has changed, mostly for the better, but as with all change it was a rough process.

Shortly after my last post I was diagnosed with fibromyalgia.  This was good news.  For the last 5 years or so I'd been in pain and having strange neurological symptoms that my doctors just couldn't figure out.  The diagnosis hasn't really changed any of that, except now I am on meds that help regulate and highs and lows a little better.  Getting that sorted out was no picnic, there is a space or about 6 weeks where I remember at most 3 days, the rest is a blur of confusion and not being able to figure out how to work my phone (or anything else for that matter).

In the midst of all that, my marriage finally fell apart and I moved out.  Not an easy thing to do when one can't work, is tripping from medication adjustments, and has no steady income of ones own.  But I'm adjusting and feeling much better and slowly starting to figure things out.

The trick seems to be managing my own expectations, and those of the people around me.  I can't do all the things I used to, most annoyingly I never know from day to do what I will be able to do.  Focusing instead on what I can do and letting the rest go with something like grace is the only way to get through the day.  Explaining all of this to people is the hardest (and most exhausting) part.

One of the better explanations out there is the Spoon Theory.  It works pretty well but I've found a better way for me to explain is to equate my day with a day at the carnival, you know the ones where you get ride tickets?  Usually at these things you can either buy a bunch of ride tickets or an all-access wrist band.  I used to have a wrist band.  Now, I get tickets.  Some tasks take one ticket, some take four.  It take eight or nine just for the basic functions of life, like getting dressed, showered, making meals, etc.  Anything else I do, I have to budget for since I never quite know how many tickets I will get each day.  I have to plan what to do with my "extra" tickets.  Laundry?  That's 3 a load.  Doctors appointment? Groceries?  Anywhere from 2 to 5.  Actually get some paying work done?  The sky is the limit.  Social time?  That all depends on what you want to do.   You can see the problem if I wake up with just 15 tickets for the day.

On the upside, I'm regulating myself better so I don't have such wild swings in energy and pain levels most days.  I'm getting better at maintaining a little bit of energy reserve so I'm not still a mess tomorrow because I overdid it today.  I can plan a little better, and have eliminated a lot of stress and anxiety from my environment.  But the hardest thing, the thing that takes the most tickets, is trying to explain all this to new people or old friends who just don't get it.  It's not that I don't want to go to dinner or play pool, or travel or go dancing, it's just that I don't have enough tickets for that ride today.  I might tomorrow, or I might next week, but I have to plan for it and rest up so I've got the best chance of a nice, thick envelope of tickets that morning.