Tag Archives: spoonie

One of the symptoms common to many chronic illnesses is "brain fog".  It's a nebulous thing that doesn't sound like much until you're dealing with it.  Once you have dealt with it, you realize how debilitating it is, all on its own.  Trying to describe it to someone else is probably futile, but here goes.  Imagine being incredibly hung over, and being woken up out of the dead sleep of the hung over by a blaring alarm.  If you can imagine (or remember) that feeling of complete disorientation when your brain is refusing to make connections with what's around you and you can't remember where you are, or what's happening and you can't figure it out because neurons seem to be mis-firing... well, that's about it.  Except it doesn't clear up once you wake up, shower, and get some coffee in you.  Or it only partially clears and like the fog that hangs over a swamp, clumps together and drifts in and out throughout the day.  Yep, loads of fun.

It occurred to me to check my blog today, and I was shocked to see that it has been two months since I've posted anything.  Surely not!  But of course, yes it has.  It doesn't seem like it's been that long from my perspective.  But I've been slogging through the days with worsening fatigue and brain fog and hadn't realized how bad it had gotten.  I mean, I *knew*, but I didn't really *realize*.

True to my nature, I realized things were sliding the wrong direction, and I researched the hell out of everything.  I determined that I had all the symptoms of low thyroid, and had requested labs drawn by my doctor.  I've had increased frequency and severity of my migraines since mid-December, and have essentially quit trying to work out or do anything beyond what I've had to in order to get through life.  This 6-week session in school has been a disaster by my standards, as I'm currently pulling a high "C", and while I'm still effective at work it's been an uphill challenge for me and I don't feel I've been as good as I should.

My labs showed my thyroid factors to mostly be in the low end of normal, and my doctor sent me for a sonogram.  Which showed a number of very small nodules which are not concerning for cancer or anything (thank goodness) but my research turned up a link to a medication I've been on for a couple of years now for my rheumatoid disease.  Dr. B had indicated she wanted to try taking me off of it at our last visit to see if I was in remission due to my lack of swollen joints and good labs, but I'd been resistant to that.  Now that it seems to be implicated in continuing joint pain, fatigue, and brain fog I guess it's not a bad idea.  I stopped taking it last week, and I believe my fatigue and brain fog are starting to lift.

Of course, chronic illness is teaching me (the hard way) not to trust it when I start feeling good.  I view it with total suspicion.  Is it a trap or a trick?  Is it luring me into trying to do too much today so I'll be flat on my back feeling like a truck ran me over tomorrow?  Or is it for real, but removing the only thing inhibiting my rheumatoid disease going to grant me a few days of blissful normality before the spikes grow back in the arches of my feet and my hands start feeling the vices closing in again?

Hope and trust is what chronic illness robs you of.  Today's post should be one of hope and achievement that I've located what was causing my problem (most likely) and that I'll start feeling better again.  That I'll be able to re-join activities that I've been wanting to, and my quality of life will get better.  Instead my attempt at realism likely reads as hopelessly pessimistic.  I really am not a pessimist.  I believe that I'll navigate this chronic illness and find a balance for my life that works for me.  I just have quit believing that I'll ever see what I used to think of as "normal" again.  Which is a little sad, and that's OK.  I'm one who believes that if you constantly expect the world to give you roses, and it doesn't, the disappointment crushes you.  But if you prepare for it to slap you in the face and every once in a while you get roses, then you're delighted.  Maybe there's a middle ground I've yet to find.  We'll see.

Winter is a hard time to be a Spoonie.  Well, it is for me, anyway.  Here in Texas, the weather is mostly mild, but weather fronts come through every few days and the temperature variances are crazy.  Yesterday it was in the high 70s, this morning it was in the low 30s and we'll have a high in the high 50s and by Friday it'll be in the 80s.  Even on medication, my joints don't know what to make of this insanity.  I woke up this morning incredibly fatigued even though I slept well most of the night, and all of my joints aching furiously.  Luckily, it's a work from home day for me, so I can wrap up in a blanket and turn the space heater on.

I'm still adjusting to the idea that I have a chronic condition and that my life will never be like it was before.  My brain stubbornly resists even thinking the word 'disability' even though I've technically had one most of my life, and now I have two.  Migraines run in my family and we all just live with it the best we can.  It's only after learning about my rheumatoid disease and researching about it that I've realized that it's really my second chronic condition, and yes, disability.  I don't know why I'm finding it painful and shaming to use that word.  It feels overly dramatic, and somehow minimizing of people with more profound disabilities.  I mean, after all, I can still get around, take care of myself, and hold down a job.  Where do I get off calling myself disabled?

Just typing that out, I find that I really, intensely hate the term 'disabled'.  I'm not disabled, dammit.  I have a condition, and one that imposes some disability, but I'm not disabled.  The distinction seems to be an argument about being politically correct, but I'm learning that it feels completely different to say I'm disabled versus I have a disability.  I don't think there should be a law about it or anything, but I think people who are impacted by something have the right to speak out about it and ask for consideration in the way people refer to it.

So yes, life looks different as a Spoonie.  I have to ask for accommodations at work.  Nothing huge, since I already have the ability to work from home, but I need to be able to use that as needed instead of on a regular schedule.  I have to prioritize things in my life, and some things just don't make the cut.  I can't burn the candle at both ends and then catch up on sleep a week or two later like I did when I was younger.  Something has to give.  Right now the top priorities are family, work, and school.  If I don't have the energy, cleaning and cooking don't make the cut.  I don't bounce back from illness and injury the way I used to, so I have to take an extra day or two when I've been sick.  I'm really having to learn to take better care of myself, because allowing one condition to flare up inevitably causes the other to as well.  The cascade of pain and illness costs are huge when that happens.

I've read articles by Spoonies who say their illness is a blessing.  I can't go that far.  What I can say is that there are beneficial lessons that can come from hardship.  Learning to let go of things that aren't as important as others and taking better care of myself are good things.  I won't ever be grateful that I developed rheumatoid disease, or migraines for that matter.  But I will figure out how to live the best life I can with them.

spoonie_explanation Christine Miserandino penned a story about how she shared with a friend what living with Lupus was like.  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)  This metaphor gives language to the struggles people who live with chronic illness face, and a community of "spoonies" has arisen.  I joined the ranks of spoonies last year, and everything about my life has changed.

2014 was an intense year for me.  I'd spent a year as a nurse in the ICU at a long term acute care facility, and was thrilled to move on to my "dream job" as an ER nurse at a Level 1 Trauma Center.  I struggled with the intense patient load and unrelenting pace in that ER, and felt like I never really recovered from my working shifts.  I chalked it up to being in my 40's, out of shape, and unused to the pace.  When I felt something pop in the arches of both feet while pushing a particularly heavy patient up a ramp, I thought the pain would go away with some ibuprofen, ice, rest, and stretching.  I'd had plantar fasciitis before, but this time it didn't go away, and hard knots developed in my foot arches.  The doctor at the employee clinic insisted it was not an acute injury, but rather ongoing "wear and tear" fasciitis.  Little did I know it was a sign of something much more serious.

Between the pain in my feet and the unrelenting fatigue, I knew that I couldn't keep working at the pace needed by the ER I was in.  As hard as it was, I knew I needed to find a different environment.  I loved the people I worked with, loved the challenge, and really had a passion for the work.  I also knew if I continued, I would end up missing a lot of work, and putting more strain on my team through my absence and decreased performance.  I moved to an ER in my hometown, and it seemed perfect.  The pace was still brisk, but not as insane as the county ER, and I physically felt better for a while.  I loved working there, but my physical condition kept worsening.  A conversation with another nurse about kidney function being impacted by overuse of ibuprofen made me look hard at how much I was taking every week.  At 800 mg per dose for many doses per week, I realized I was taking almost 10,000 mg a week and had been for the better part of a year.  I decided my physician and I needed to start investigating what was going on.  (Luckily my kidneys were still working fine.)

My response to a round of steroids was the tip-off for me.  I knew my feet were hurting badly, what I hadn't realized was that many of my other joints had been developing an ever-increasing level of chronic pain.  A round of steroids brought my pain levels to near zero, all over my body.  Prior to that, I would have said my ongoing pain level, out of 10, was about 3.  What I realized once I didn't hurt anymore was that I'd been living at a 6 or better.  Many people feel like crap when they take steroids, but I felt human again for the first time in years.  My migraines completely went away, I had energy again, and my joint pain was almost completely gone.  My nursing reference books all pointed me toward an inflammatory process.  As auto-immune disorders run in my father's side of the family, it wasn't a far stretch to start suspecting rheumatoid arthritis (RA).  It took a bunch of blood tests and referral to a specialist (Dr. B) and many months, but it was confirmed as non-serologic RA in May of 2015.  Recently the diagnosis was changed to psoriatic arthritis (PsA) based on new information  Dr. B had after Munchkin started seeing her.  The treatment doesn't change significantly, as it's still an auto-immune arthritis.

I'll write more about the treatment of auto-immune disorders in future posts.  What became obvious to me is that bedside nursing was not going to be a viable option for me ongoing.  I couldn't stay on steroids because of the numerous side effects that make steroids problematic.  (There's a reason one RA blogger calls them "Satan's little tic-tacs".)  I couldn't leave the RA untreated, because the pain was becoming unbearable and I would start having degeneration in many joints.  But the treatment lowers my resistance to infection, and an ER is not a place to be working when I will pick up every cold, flu, and other communicable disease I come into contact with.  So I changed my career plan and moved to a job working in healthcare with computer systems.

It's been hard to change everything in my life, and many days I resent my illness for making it necessary.  But I realize how lucky I am that I have a mix of skills that is in demand and allows me to continue providing for my family and is not as physically demanding.  I'm still struggling with fatigue and pain, but I know I'm so much better off than many people.  I don't want to be defined by my illness, but it certainly is shaping my life at this point.  So for now, it's one spoon at a time and living life the best I can.