Loneliness...

During my sister's surprise Back-to-2014 50th birthday party, one of the foods we had was the chilorio burras.  Everyone liked them.  Since they are so tasty, I cannot fathom them not likable since they are so tasty.  Even so, something that warmed the cockles of my heart was that my sister really, really, really liked them!

Today, I had some more and spent some time being thankful that I have such great friends who would give my sister an impromptu surprise birthday party and praying for her and them.  This was before I rolled them.  I still have not yet achieved a solid roll yet, but I don't have problems eating all the slop off my plate.

Today, I added sour cream, because, you know, who doesn't love sour cream?  I also used the cilantro lime seasoning on the avocado mash.  Mmmm!  These are just so tasty and so very different from the spicy Dr Pepper pulled pork tacos.  Both are sublime!

Today, I figured something out with the Texas Flour Tortilla dough balls. I make a batch of them (16) and put them straight into the freezer, individually wrapped in waxed paper.  The night before I want to eat them, I take two dough balls out of the freezer and let them thaw in the refrigerator.  The last couple of times that I have eaten them, they were not quite their BLOODY FANTASTIC selves.  Last time, I was thinking about how hard it was to roll out the tortillas because the dough was so cold.  So, today, I left them on the counter to warm for about a half hour.  And, as you can see, they turned out BLOODY FANTASTIC once more.

It still amazes and tickles me pink that I can make such tasty tortillas!

That's really all I did, other than rest.  I am so blooming exhausted all the time.  All. The. Time.  SIGH.

As near as I can tell, the Sjogren's pain flare started around November and ended around March.  At least that was when the pain got so very awful and then finally eased back to bearable.  March is also when some of my autoimmune blood work had slightly better numbers.  But the exhaustion ramped up to a new level before November.  I do not remember when, exactly, but I know that I have written about it and told every single doctor/specialist how much more drained and dragging I am.

Sometimes, when streaming, a show will end and I will just sit there, not sleeping but not doing anything.  I am too weary to reach over for the remote.  Too weary to read.  Too weary to write.  Too weary to think.  Too weary, even, to sleep.  I thought that I knew what exhaustion was, but I didn't.  I sure am being schooled in it now.

I do know that I pushed and pushed and pushed myself during my birthday celebration with my visitors.  And recovery from when I overdo it is a weeks long experience, filled with lots and lots and lots of sleeping.  But this is more.  It is different than what I thought I knew about fatigue.  SIGH.

I read this article about exhaustion related to Sjogren's:  13 Types of Sjogren's Fatigue.  In a way, I am not sure I would have written the way the author did.  By that I mean, I do not think that there really are 13 different types of fatigue.  I think that many of the types in here are actually scenarios that cause an increase in fatigue.  But, then again, I also believe that folk need the space and respect to talk about their experience with chronic illness without having others deny it.

I do believe the article might help to drive home, though, just how Sjogren's folk struggle with fatigue and it for that that I am sharing it.  Because, truth be told, one of the most difficult aspects of being chronically ill is not the pain or nausea or fatigue, but the loneliness.  And so I oft find myself trying to share information with others in my life in the hopes that I might not be so alone with all my illnesses/conditions.

During my appointment on Thursday, I was talking with my therapist about all the celebrating I have been doing for my 50th during my 50 days and how it means so much to me that my sister has joined me, has been sending cards and small gifts.  When I was talking about all the things I have been doing for myself because I wanted to make a big deal about my birthday for once, she interrupted me.  "It's not the same, is it?" she asked.  I stopped short and shook my head.  I really wanted my Facebook friends and in-life friends and family to join me.  To do this silly (and maybe selfish) thing with me.  To celebrate with me, to celebrate me.  That didn't happen.  Hasn't happened.  Without my saying so, she understood that I felt lonely in my celebrating.

I thought it then a bit timely that I the Chronically Hopeful page I follow on Facebook posted this article:  4 Ways to Cheer Up A Loved One Who Feels Lonely Due to Illness.  Of course I agree with the first point!  Every other month I try to send snail mail to those I care about to let them know that I am thinking of them.  I did think that No. 4 was not really a point and that the article could have a few more ideas. Not to come off sounding all critical, but I wanted a few more ideas ... needed a few more ideas that I could try to share.  Or post.  And hope someone listened.  Still, it was nice to read an article that let me know that I am not the only one struggling with loneliness.

Living with chronic illness stinks.