The Many Shades of…

Life?

Feelings?

Disease?

Lupus?

Multiple Sclerosis?

Thoughts?

Realities?

Colors?

Greys?

Emotions?

Me?

ALL OF THE ABOVE.

That is how I’m feeling today.  I used to think in black and white.  Then I discovered there were many shades of black and white.  Then I realized grey happens too.  And there are many shades of grey.  After talking with a friend today I have come to the conclusion that there are also many shades of all colors.  There are even colors that I didn’t even know existed.

THAT IS LIFE.

It is how I feel about the above list and much much more.  What a roller coaster this life is.  What a roller coaster my life is with MS and lupus.  I had a hard week last week mentally.  I felt completely depleted.  The weekend helped a lot.

Saturday was a pretty good day for me.  I was able to spend hours on the phone with a good friend from high school and that would’ve been hard for me to do even a year ago.  Talking can be exhausting for me cognitively (I know I know, those of you who know me can’t believe that with all the talking I do…).  Then I talked to my family after that too.  It was a big phone day.  I was also able to make it to Corey’s Improv Show to see him perform with the group he’s in, The Magic Meathands, along with a bunch of other really talented peeps and had a ball laughing and getting out of my head.

Sunday ended up being a really nice fulfilling day too.  Yeah, I was tired from my activities the day before but with a little coaxing Corey convinced me to go to the beach and watch the solar eclipse.  It was so nice to be able to walk on the beach in the cool sand (never walked on cool sand) and have my feet in the ocean while watching the eclipse.  It is when I’m standing in the ocean that I feel the most connected, present and at peace.  Everything else just falls away.  I don’t get to do it enough because I am afraid to be in the sun too much due to my lupus sun sensitivities and MS heat sensitivities so this was a real treat for me.  And the fresh air was wonderful.  It helped me relax A LOT.  Last night I thought I had gotten away with being in the sun because I didn’t feel too physically bad at all.  I think I actually felt better physically.

…UNTIL I woke up this morning with what I call the “heavies”.  UGH.

I was FINALLY able to figure out THIS MORNING that it’s the sun that triggers lupus and the heat that triggers the MS and thus the “heavies” begin.  What are the “heavies”?  You know those X-Ray vest thingies they put on you at the dentist?  That is what it feels like all over.  It’s crazy heavy fatigue.  It means I am in DESPERATE need of rest and I need to stop everything.  Oh and that wasn’t my plan today whatsoever.  I had THINGS TO DO.  Well, my body told me it needed rest and I was forced to listen.  Those THINGS TO DO are going to have to wait.  (I still hate to wait even though IT HAPPENS ALL THE TIME.)

So up and down and up and down and up and down I go.  The many shades that I referred to in the beginning of this post kept coming up in my thoughts this morning.  I don’t regret having a good weekend and probably doing too much.  I feel pretty darn good about it.  (That’s huge for me by the way).  It’s just soooooooooooo hard (words can’t describe my feelings–hence the many shades…) to live life with lupus and MS.  So frustrating.  Yet I’m grateful I was able to walk the beach and see the ocean.  I’m grateful to have had my time with Corey and that he performs and gives me excuses to get out and to laugh.  Laughter is the best.

And the many shades continue…

I will end with posting a couple of YouTube videos of James Morrison singing “Wonderful World”.  I LOVE HIS VOICE.  The first is the official music video which is really kinda odd but I like the production of the song.  The second is just audio and no video of the acoustic version of the same song.  I hope you enjoy them.  I heard this song almost exactly 2 years ago right before my whole body went to hell in what I later found out was a lupus flare.  At the time I heard this song my eyes had gone wacky and I was having an extremely hard time seeing and processing light.  I was feeling pretty darn down.  I heard this song and he really hit me.  He not only hit on my emotions that I still feel a lot to this day but he reminds me that I’m not alone.

Enjoy!