A week ago Saturday we had a surprise birthday party for my now 19 year old son.  It went really great!  He says he never caught on to our plans and we had a turnout of about 30 friends and family, awesome day!  I woke up the next day and was very sore and tired.  Unfortunately, nothing out of the ordinary following a day on my feet and being very active.  My daughter and I had nursery duty at church so we got up and got over to the church at 9 a.m.  I didn’t have much energy so my curly hair just got pulled back with a headband and I had minimal makeup on.  Fortunately we have an elevator we can ride to the second floor and although I don’t use it all the time (pride issues!) I did use it that day.  But nonetheless we were there, enjoyed Sunday school, worked in nursery and came home and crashed the rest of the day!  I felt accomplished!

The fourth of July was my grandson’s first birthday!  We celebrated it on Saturday with a picnic with family and friends at the lake.  It was in the 80’s but there was a mild wind coming off the lake so it felt pretty nice.  The sky was covered by clouds – white and gray.  It was a gorgeous afternoon.  We did have some rain at the end but we just huddled under the two canopies we had set up and waited till it was over.  Everyone was in good moods and it didn’t dampen our fun!

I was so thankful that for the second Saturday in a row I had energy!  I had very little pain and if you didn’t know me you might not have even thought that there might be something wrong with this girl.

Life these days works on an exchange basis.  Almost like trading options every day to conserve energy for other things you need to do or would like to do.  Looking at the calendar for tomorrow and deciding if you think you can push yourself a bit or if you need to save that energy in hopes that you’ll have more to go along with it tomorrow.  Sometimes it works, sometimes it doesn’t; but I usually feel it’s worth the effort to plan things this way.

By Saturday evening I was feeling a little rougher for the wear and decided not to attend a concert at our church.  I reasoned that if I went to bed early I would feel better tomorrow and would probably be able to make it to Sunday school and the church service.  My fair skin (alright, I’m pasty white) had burnt pretty bad and of course you feel that more as the sun goes down.  No one else burnt, I guess I have a gift for it or something.  My husband and kids couldn’t get over how very red I was, not just a little pink, I was deep red.  I took a cool shower and lathered on the aloe lotion and went to bed.  Skin flaming hot.

Turn the page to Sunday.  My cancellation of plans to conserve energy didn’t work.

This was new pain/pressure/whatever you want to call it.  I have had days before where it felt my shoulder or some other area of my body was in a vise.  This was different.  My entire upper body felt like a slab of concrete had me pinned down.  If I raised my arms slightly they felt like they weighed a hundred pounds and even after I set them back down at rest the pain would pulsate for a few minutes.  It was miserable!  If I sat perfectly still for a while I had some relief although it was odd pressure to even breathe, like when you have bronchitis.  I wasn’t able to distract the pain at all.  My muscles were completely exhausted.  I was trying to remember what triathlon I had participated in the day before but the best I could recall I had a normal day like normal people do – a birthday party picnic at the beach.  On top of the pain and muscle exhaustion, my skin was burning so bad that I couldn’t stand the collar of my shirt touching my neck.  You know how it feels if you have to scratch an itch where a sunburn is, that was it, the slight movement of my shirt felt like a harsh scratch on the burn.

I hate these days.  I sit in the same chair for the entire day doing nothing at all.  Debating how bad I really have to pee and if I can possibly hold off another half hour or so in order to delay the train wrecked feeling that I get by the time your back to the chair and sitting again.  I’m so thankful these days aren’t coming around very often.  I know some people who suffer with FM/CFS live the majority of their life so debilitated and I’m in category that allows for more activity and functioning.  I’m very grateful for that!

Waking up today I felt much better.  I fell asleep pretty fast last night and only remember waking a couple of times.  I have some energy and have been able to do two loads of laundry and some picking up around the house.  My grandson decided to take a good nap from 10 a.m. to noon and I found myself napping on the couch too.  But that’s ok.  After days like yesterday a nap helps!  So by the time my daughter left for work this afternoon at 12:30 p.m. and my role as Granny the Nanny began I was doing ok.  My ok.  I guess what I’ve decided as an acceptable normal for me.


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