Having lupus, Part 5: More on the pit

The sick soon come to understand they live in a different world from that of the well and that the two cannot communicate.
-Jessamyn West

Note: As I have said before, I do feel like I live in a different world now than I did before I got sick.  And it is hard to explain.  However, we each live in our own worlds and every experience is difficult to convey to those who have no similar frame of reference.  One of my goals in life is to break down communication barriers, and with this series of posts I hope to help open up lines of communication between "the sick" and "the well."

When all my lupus symptoms reached their apex in the summer of 2013, I thought I might seriously have some sort of mental illness.  I was seeing multiple doctors and their diagnoses didn't seem to match my level of illness.  I just felt sick and tired all the time and it never got better.  And there was no explanation.

I kept thinking after I reached this milestone or that milestone at work or at home, I would feel better.  When I was sick during winter, I thought I would feel better come spring.  When I was sick at work, I thought I would feel better when things slowed down.  I thought I'd feel better on vacation.  On trips, I thought I'd feel better when I got back home.

But I kept feeling worse.  Random symptom on top of random symptom kept piling on. 

I had been trying to lose weight unsuccessfully for several months.  I thought I just wasn't trying hard enough.  So I took on a fundraising challenge in May that would require that I walk 10,000 steps a day.  That would hold me accountable and then I would lose weight.  One month and more than 300,000 steps later the scale hadn't moved.

Maybe I needed to watch my diet more carefully.  I ate A LOT of salads in June and drank A LOT of water.  And counted calories every day.  Another month and another 300,000 steps and the scale STILL hadn't moved.  Not one pound.

That first day I walked those steps, my legs ached.  They continued to ache the next day and the next one.  I was more out of shape than I thought I was when I took on the challenge.

I thought my legs would adjust after the first week.  But they didn't.  Surely they'd feel better after two weeks.  The more steps I walked those two months, the more my legs hurt.  My muscles ached.  I was exhausted.  And I was only walking.

I thought I must surely be the biggest wimp on the face of the planet.  I felt like a big, fat loser.  Literally.

I began to wonder if I might have an anxiety disorder.  If I might be making my symptoms up. 

I was an emotional wreck during that time and I wondered if I might have depression.

There were days when I did not want to get out of bed.  When I wanted to hide away from life and everyone I know.  Days when every single little thing felt like an insurmountable task.  Even taking a shower.  Even reading a book.  Even eating.  Food is one of my favorite things and when I didn't even care about meals anymore, I knew something was wrong.

I scheduled an appointment with a counselor, but as I talked with my friends during this time they encouraged me to take ALL my symptoms to a general practitioner and ask (again) for some lab work.

I wrote them all out.  Months of symptoms and doctors, and then read them to the physician at my appointment.  He listened and then said, "You're depressed."  No need for lab work.

I acknowledged that might be a possibility and even brought up that I already had an appointment with a counselor, but asked (again) for lab work.  (He finally did agree to a few tests -- one that eventually led to my diagnosis.)  I had been dealing with physical symptoms for more than a year before I noticed the mental symptoms I was struggling with at that time.  It didn't make sense to me that the physical symptoms of depression would manifest themselves months ahead of the mental symptoms.

I left that appointment wondering if I might have a mental illness even more serious (or in addition to) depression.  I began quizzing my friends and family and asking if they noticed anything questionable.  And then I wondered if they were not being truthful in their answers because it was obvious that I was unstable.

While my diagnosis turned out to be lupus, my brushes with depression and anxiety have made me more sympathetic to friends and family who battle those things on a regular basis. 

And as I am learning to manage my lupus symptoms, I have found my mental health to be one indicator of whether or not I'm in the pit. 

Like I said before, I have days -- though not nearly as many as I would like -- when I feel completely normal.  For me, this is being on solid ground.  And it really feels -- physically -- like being on solid ground.  When lupus is attacking me, I seriously don't know if I can hold my body together.  Sitting up and walking feel like acts of faith.  I'm never sure when I might just topple over.  When I don't have to use energy to sit up or to walk, when my legs feel solid beneath me and my arms feel capable and I have energy all day long, those are my best days.  That's when I remember what it was like not to have lupus.  My solid ground days.

Most days for me are not quite this good.  They're not horrible, they're not intolerable, but they're not great either.  Shaky ground.  It's kind of like going on vacation.  And boarding your flight and getting seated in front of that obnoxious guy whose volume knob got stuck on high.  And he decides to give his seat mate all the details of his hernia operation.  You're still glad for the break a vacation brings (in this case a break from the pit), but you just wish that guy would shut up or that you could get off the plane already.

The shift between shaky ground and falling in the hole happens when the physical symptoms intensify and then mentally I start to break.  Shaky ground: My eye waters and I wipe at tears all day long and go on.  Annoying, but no big deal.  I feel like I'm going to throw up and I sip some water.  Headache, I take medicine.  Some dizziness, and I make no sudden movements.  I feel tired and I take a nap, or I ask Johnie to do the dishes, or I put off paying the bills.  All very manageable. 

But when my head is hurting and I'm feeling dizzy and queasy and I have some random pain in my leg and I'm just so exhausted and I think about that dinner out at my favorite restaurant that we have planned and it just feels like that will be the hardest chore to complete.  That's when I know.  I'm in the hole.  And that thing I love to do only seems like it will be miserable because I'm looking up at it from down deep in the lupus pit.

That has become my barometer.

When that happens I throw my hands up in surrender.  I go to bed and I wait for however long it takes to be lifted back out of the hole again.  For that morning when I wake up and feel rested and want to get out of bed.  And I stand up and my legs feel stable.  And I'm hungry and I know just the thing to eat.  And three hours later I still have the energy to do whatever I have to do that day.  That's when I know I've been lifted out of the pit and am back on solid ground.

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This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 3: How lupus made me a better wife

Part 4: A practice of patience

Part 6: Exhaustion

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.