Tuesday, March 18, 2014

Too Tired for a cute title

So, I haven't written a blog in almost 2 years.  I had this huge goal of sharing my journey and this was to be a great outlet for me, but I lost my "mojo."  I had a few setbacks and about 18 months ago I had a hysterectomy.  Then I had a nice long period of remission.  My theory was, why wake the dragon?  If I don't talk about it, maybe it will stay "remissed." Apparently "remissed" isn't a real word, but I declare; it means to stay in remission.  But alas, my monster has reared its ugly head.

David and I went on our annual cruise without the kids in February, and I got sick.  I usually get sick (when not in remission) from the anxiety leading up to a trip, and the actual travel involved in getting to the ship (in most cases it's a cruise).

Inside the "London Eye" with David, the boys and
my parents, September 2013

Our Family in Skodje, Norway
(near Ă…lesund, Norway)
Our Family in Oslo, Norway
Our "Cruise Family" helping me honor
my parents' 45th wedding anniversary
 somewhere in the North Sea

But, we took both boys and my parents to Europe this past September and I did NOT get sick.  My energy stayed up and my skin stayed healthy, my blood pressure was great, we had a great time, and I felt pretty good.  We did a LOT of traveling by plane, train, automobile, ship, and by foot.  We met family we had only met "virtually" and it was a learning experience the boys could not get from a textbook.

This last cruise (in February) was out of New Orleans, which is about an 8 hour drive for us.  We did well.  I had some anxiety, but I felt like I handled it alright.  We spent the night prior to embarkation in a hotel in New Orleans, and David and I just spent the evening together and had a nice dinner before going to bed at a decent time.

My dear FRIEND Al Ernst
(because only a comedian would
bring me Gator Mardi Gras beads)

This particular cruise we went on is an annual event which David and I participate in.  There's a group of people who get together and we have a few somewhat "private" events that take place while onboard the ship.  The group has grown quite a bit since the first one that we attended, and there are a number of cliques within the group.

Most people who know me well, know that I am a very "social" person.  I think that I was the "normal" me on the first 2-3 nights of this cruise.  But as time went on, there were some things that were happening that started to bother me.  Between that and the unseen anxiety and depression I was
Embarkation out of New Orleans
already feeling, I got pretty sick.  By day three of the cruise, I had 3 cold sores in the corners of my mouth that I felt like were taking up my entire face, and I even had one inside my nose.  I felt myself becoming more and more of a recluse.  I stayed in my cabin a lot and I avoided the social interactions that I normally flock towards. My blood pressure was getting so bad, I stopped drinking altogether by day 4, with the exception of our traditional Corona in Mexico and the bottle of wine I had saved for the last night of the cruise.

I wrote in my first post that a large part of my lupus is fatigue.  When I wrote about my photosensitivity:

Another BIG problem for me is fatigue, especially when I am triggered.  So, if I have too much UV exposure, the fatigue sets in.  When I used to hear people talk about fatigue, I just made the association to "being tired."  But "tired" really doesn't do it justice.  My bones are tired.  There are times when I wake up after 8 hours of sleep and I can't muster the energy to slide the arrow on my iPhone or even gently press the snooze.  I never feel well-rested.  I have so much to explain about how the fatigue affects me that it's better served in its own post.

Sometimes, I just can't believe this disease.  It's ridiculous to me that I look "fine" on the outside, but I feel sick with the littlest amount of UV exposure and EVERYTHING makes me tired.  My energy level can go from a 10 to ZERO in a minute.  

The reason I started writing this blog was an attempt to organize my scattered thoughts and also share with my friends and family why I am the crazy girl that I am.  I am not a "writer."  But I want to put words to "this" so badly (maybe too badly).  So, I was trying to think of analogies to describe the fatigue.  (Honestly, even I think that's lame).

Bowling 3/17/14 with Grant & Jack
I'm TIRED!  But, that's not fatigue because if I was JUST tired, I would go to bed earlier and catch a
nap once in a while -- problem solved.  Only problem is... I can sleep for 20 hours straight and still be tired.  Actually, yesterday I took Grant (almost 11) bowling with a friend of his (friends since they were in Pre-K THREE together).  We had a great time.  In fact, we all decided to bowl a third and final game and the boys were ready to quit midway thru, but I wanted to finish. Then we drove Jack home, and when Grant and I got home I felt like I was going to pass out.  I climbed in my bed around 6:30pm and didn't get up until almost 1pm today. It's one of the worst feelings.  I want to go out and conquer the world or at the very least I want to go play outside with the kids.  This is just to exemplify how quickly my body turns on me.  I won't, however, take a picture of myself still sitting in my bed at nearly 5:00.  And you're welcome.

SO, when I was looking for other peoples' explanations I came across a great question and answer:
"How can I explain lupus fatigue to my family and friends?"
Dear Jessica,
I need help explaining what lupus fatigue feels like to my family and friends. Sometimes they think I’m just being lazy. Do you have any suggestions?

Dear Jill,
So many of our patients have fatigue, and like you, they say that since they don’t usually look sick, it’s hard for friends and family members to really “get” just how wiped out they are.
To make matters worse, lupus fatigue is not only unpredictable but can be maddeningly hard to describe. Some people think of fatigue as simple tiredness, when that’s not it at all, as you know. How many times have you heard, “Just push yourself a little harder?”
When I ask our patients to explain what lupus fatigue feels like, they make comparisons. “Fatigue feels like a heavy stack of metal sheets sitting on my chest –-hundreds of pounds' worth,” said a young woman at a recent support group. For her, fatigue is an extremely heavy force that she cannot move, no matter how hard she tries.
Others say that the fatigue of lupus feels like they have been drained of all energy…as if something vital is suddenly missing. All the light bulbs inside have burned out at once. A bundle of balloons has popped, and suddenly fallen to the ground. “I feel limp like a rag doll or a puppet whose strings have been cut,” one support group participant said.
There is one way of describing lupus fatigue that I often share because it’s so visually clear and concrete. It’s called the Spoon Theory, and it explains how a person with lupus fatigue must be choosy about what he or she does since on some days, there are very few rations of energy (spoons) to go around. Read the theory here. You might want to consider trying it the next time you are telling a friend how you feel.
Regardless of how you may describe your fatigue, one thing remains constant: it’s not about lack of effort. “No matter how hard I try, I just cannot get out of bed, and I really want to,” is something I often hear. It’s an important thing to note. You are definitely not being lazy.

So if the doctor says it's MADDENING to describe, who am I to attempt to define it?  I have never been a morning person.  Really, NEVER!

I remember when I was in high school, how much I loved to stay up late.  And sometimes, when I would stay up too late, I paid for it the next day.  If it was a school day, I would yawn all day long and struggle not to use my arm to hold up my head.  I just knew that if I did, the next thing would be my arm extended across the desk, with my other hand in the "I'm taking notes" position, and then I might drool on my desk.  When I think of "tired" that's what I think of -- a lack of sleep or a need for more sleep.  Which is what makes "Lupus-fatigue" so difficult.  Lupus-fatigue is not (normally) due to a lack of sleep.

I try to get a good night's sleep and function as "normally" as I can.  So, you would think that since I am always so tired, I would be able to fall asleep at the drop of a hat.  But, that would make things too simple.  I cannot fall asleep.  Oh, I know all of the tricks, my bedroom is very DARK and cold. Sometimes I read or play sudoku puzzles, in the hopes that my eyes will become heavy.

I AM a vampire.  I do my household chores at night.  Mainly because I have used the above mentioned "spoon theory" to get thru the day, and I know I can use any remaining spoonfuls of energy when the kids are in bed.  But, when we have company at the house I feel like the worst host ever.  I try not to expend all of my energy in preparation for their visit, but it's hard to know what the "crashing point" is for me on any given day.  One day I may have 50 "units" of energy to use and the next I may just have 1-2 "units."  Don't ask me what a "unit" is.

I am going to make a better attempt at blogging more about this crazy journey I am on.  Over the next couple of months I may have a lot more to share.  Back in October I participated in a medical trial for people diagnosed with Lupus.  I didn't feel like the trial did me any harm, but I didn't see any huge benefits either.  However, since returning from our cruise at the end of February, I have experienced a lot of the the symptoms that I saw at my lowest low.  I was ready to call the doctor (knowing that I would be put on the dreaded steroids) and as I was picking up the phone to call and schedule an appointment with my doctor my phone rang.  It was the research lab and they wanted me to be 1 of 10 patients in the US to participate in Phase II of the same FDA study.  I took that as a sign.

Tomorrow is "Day -7" for me.  This basically means they'll be taking some blood and performing an EKG and getting me ready for "Day 1," which will be next Tuesday.

Until then, another HUGE Thank You to my friends and family who continue to be there for me when I'm having a bad day and celebrate the good ones.  I especially want to thank my husband David because it's hard enough to live with this and not understand it, I can't imagine being married to IT. I am equally Thankful to my dear friend Anders Bylund, who helps me keep my thoughts straight and grammatically correct.   


  1. Sending you my love and support. I understand trying to explain that type of fatigue because 6 years ago I was going through chemo and radiation treatments. It is indescribable. I have been cancer free for 5 years now so I will keep you in my prayers. Love CarolAnn of stained glass fame.

    1. CarolAnn you are so sweet. Thank You. Most people don't understand because the outward signs aren't there. In fact, if someone gets a flare that cannot be managed with conventional medicine, radiation and chemo have been used.