How's Your Back?

What’s more difficult than pronouncing Ankylosing Spondylitis?  Try explaining this complex disease to others.  So many well-meaning family and friends ask me, “How’s your back?”  While I appreciate their care and concern, it can be frustrating to have a disease that is difficult to explain to others.  The reason why is because I have so many different symptoms that I don’t want to burden others listing everything that’s wrong with me.  With AS, symptoms vary from patient to patient.  Some patients have mild symptoms and can live their daily lives.  Other patients have significant symptoms that result in disability, like me.  In this post, I want to share with you what ankylosing spondylitis feels like to me. 

What does spondylitis feel like?   I have pain and stiffness in my neck, lower back, and hips.  Then there’s pain in my shoulder, knees, ankles and heels.  Let’s add to the mix rib pain, chest pain called costochondritis, and dactylitis which is inflammation of the toe, otherwise known as “sausage toe.”  (Doesn’t that sound pleasant?)  My hands, feet and ankles swell.  There are also times when my limbs feel heavy as if someone is pulling on me.  Now all these symptoms don’t usually happen all at once.  They come and go, mix and match, and so the difficulty with this disease is never knowing how I will feel when I wake up each morning.  It makes it difficult to make plans when I’m unsure of how I feel.  This disease dictates my social life, or things I want to accomplish, and that can feel frustrating.  I wake up each morning with a plan for the day.  When I get out of bed, my body lets me know what I can and cannot do.

Fatigue: I manage my pain the best way I can but the most life-changing symptom of spondylitis is fatigue.  This is a type of fatigue that can be indescribable. No amount of rest relieves it.   Some days, I wake up in the morning, start my daily routine, and within a couple of hours, I feel completely exhausted…like I have put in a full day’s work.  And it’s only 10:00am!  There are times the fatigue is so compelling, that I just go to bed.  There’s nothing I can do and it’s best to retreat to my fatigue.  This fatigue has changed the routines in my life:   

• When I was well, I could clean my house in a half-day.  Now, I clean just a few rooms each day because I must stop and rest. 

• When I was well, I could spend an afternoon running errands going to several stores.  Now I must choose one or two stores, and then come home to rest. 

•  When I was well, I could work a full day, come home, cook a complex dinner for my family and clean up.  Now, I must cook simple meals for my husband and me, with few steps, and sometimes ask my husband to clean up because I’m too exhausted.

•  When I was well, I worked full time as an elementary school teacher.  Now, I work a few hours a week at a community college and it feels as if I am working full time.

• When I was well, I could spontaneously take a train to New York City, walk all over the city, come home slightly tired but back to work the next day. Now, if I go to New York City, I rest the day before my trip, take subways to get from place-to-place, and take the train home feeling exhausted and then rest the next day.

Arthritis Flares: Let’s talk about arthritis flares.  Flares are defined as an increase in disease activity or worsening symptoms. This is where spondylitis goes from bad to worse!  If I overexert myself, I will usually get a flare. It can also come after a stressful situation. Flares also happen to me with extreme weather changes.  When a Nor’easter is approaching, I feel significantly ill.  All the symptoms kick up at once.  I wrap myself in a blanket and lay on the couch and get very quiet.  Rest, steroids, and naproxen (an anti-inflammatory medication) seem to help quiet down my immune system.  But when a flare occurs, it’s another time to move slower than I do already, rest, and wait until the flare passes.  Fear of a flare is always in the background of any planned event.  My daughter was married over the summer.  I was fearful that I would wake up on her wedding day with a flare due to the busy few days before the actual wedding.  Thankfully, I felt well, and it was a lovely day!

The Struggle is Real:  Living with ankylosing spondylitis daily feels like every moment is an effort.  Moving through the day requires exertion.  Some days I push through the best I can.  Other days, I am tired of always feeling like everything I do is an effort.  The best example I can use to describe this is when you get the flu.  When you get the flu, you feel ill for about 7-10 days.  But, then the fever breaks, you feel better, and you return to work.  But even though you feel well enough to work, you have those moments towards the end of the work day where you feel tired, run down, and all you can think about is returning to bed.  That’s what AS feels like to me.

While this all sounds completely awful, I have found that I do get used to living with these symptoms. The pain is there every day.  Some days the pain is mild; some days it’s more noticeable.  Learning to be mindful of how I feel each day, and practice self-care allows me to manage this chronic disease the best way I can.  In an upcoming post, I’ll share how I stay positive while managing all these symptoms.