Chronic Pain and Avoidance

Making it through the day with an overactive immune system is exhausting. You are trapped in a body that seems hard-wired to misbehave. You look and feel very different than you once were. You find many small things to celebrate. You purchase colorful new shoes because your feet and ankles feel better, you laugh at inane jokes just to feel alive. You hide your pain as much as possible so you can still seem fun and lively, this takes a lot of effort. Normalcy is an adopted attitude.

When you are in your twenties and diagnosed with a lifelong disease, it is a shock that is very difficult to accept. You have medicine bottles everywhere and are told to take this pill four times a day, the next pills you take eight of once a week, one pill morning and night, and another only at night. Disbelief sets in and you are sure that you are not ill anymore. You stop the medicine and the torture starts anew.

Many days it feels like a flu bug. You want to have a quiet day in bed and not talk, listen, or explain yourself. It is futile; I don’t know if people really can’t understand how I feel or are just intentionally horrible. Some people, after all, are just contrary by nature. Here are a few examples of the insensitive remarks I try to dismiss on a daily basis:

  • “You really should get off of all that medicine and just exercise.”
  • “If you would just stop eating sugar, nightshade foods, gluten, dairy, etc, your problems would be solved.”
  • “You look exhausted, what happened to you?”
  • “You must not have a very good doctor if you don’t feel better.”
  • “Are you sure you aren’t just imagining some of this?”
  • “I don’t understand how pain can make you tired.”
  • “You must not be taking your medicine properly. If you were, you would be better.”
  • “Why do you smile so much if you don’t feel well?”
  • “My friend has the same illness, he never seems tired.”
  • “You were fine yesterday, what’s your problem? Oh wait, I don’t even want to hear it.”
  • “I’ve never heard that chronic pain affects your personality, why won’t you argue back?”
  • “Oh, it doesn’t hurt, stop exaggerating, you are a huge drama queen.”
  • “I have pain too, you know.”
  • “Stop making that sad face.”
  • “Wouldn’t we all like to stay in bed relaxing?”
  • “You just refuse to take care of yourself.”
  • If I felt like you do, I would be at the doctor every day, why aren’t you proactive?”
  • “If you would just put some concealer under your eyes you would look a lot better.”
  • “You used to bounce off the walls with energy, are you depressed?”
  • “You’re not a fighter.”
  • “You looked so happy just two hours ago, maybe you have low blood sugar.”
  • “We are all tired, you have to make yourself do more things.”
  • “My grandmother can do more than you.”

It feels like you have a secret. You do, because only you can know how debilitating a painful disease is. You cannot share the secret, you will only be misunderstood or labeled difficult. I do wonder why I have to constantly justify myself. It is such a waste of energy. I find more and more that I am happiest alone. My own thoughts are usually pleasant and clear, although I often drift in and out of a dream world where I am my old self.

It is a strange thing to find yourself worn down by another person’s energy. At one time, I gained energy from others liveliness. Now, I feel that I must ramp up my own strength just to buffer the effects from their unconscious hyperactivity. People hustle and

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bustle around me.  They push me to move faster with their grocery carts, or to rush out of a movie after sitting for two hours. They simply cannot understand why I move the way I do. I certainly don’t have the patience to explain. Why must I offer an explanation every time I have a setback. I don’t owe this to anyone. I want to be alone.

 

The Toppers

People like to compete about the strangest things today. They are smug in their ways, calling themselves Type A personalities, or Alphas. I see a shallow value system among this group. How does an illness spark competition against others suffering from the same disease? Travel to faraway countries and different continents brings out the worst in these argumentative people. When it turns to bullying, I turn my back, and try not to absorb the poisonous darts being thrown every which way.

People justify their horrendous behavior, never caring that they may have really hurt the person who was (at that particular time) perhaps very vulnerable. Breast cancer has become a source of “topping”; a way to feel like you are a warrior. Initially, I liked the idea of battling cancer being akin to that of a warrior rather than a victim of the disease, but it has led many women to fight one another. They fight or compete about who had the worst experience, the longest treatment, they take over discussion boards, and often have to start new ones in order to continue their fight. It almost feels as though if you didn’t lose your hair and toenails, you must cower in their mighty presence, and offer them some form of reward for going through something worse  than everyone else.

Many times, cancer is related or a more likely diagnosis when you have certain autoimmune issues. Meaning, you may have already suffered for thirty years with a debilitating illness before the cancer comes along for the ride. Too bad these Toppers can’t see the big picture. They see themselves as more deserving somehow, but they are really just sickening, angry people.

I lived abroad for five years, I had always wanted to do this. I never realized that others were angered by this, and how much it provoked their competitiveness. Questions I am asked have nothing to do with whether or not I enjoyed it, instead, they present like this:

How old were you the first time you went to Europe? Haha, I went before you.

Did you stay at The Ritz? I did, I stayed in all of the best hotels.

How can one converse with someone like this? I am exhausted when I finally drag myself out of their clutches. I let them know that they have topped any experience I may have had, and I hope to never see them again.

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Ankylosing Spondylitis

 

I have suffered with a systemic illness for thirty years. It is called Ankylosing Spondylitis. To  make it easier for those who are rude about it, I say it is Rheumatoid Arthritis.

As a child on a gymnastics team, many teased that I should join the circus as a contortionist. I was the winner of many flexibility contests, and was constantly cartwheeling instead of walking. To lose those abilities came as a shock.  It was not only extremely painful when the inflammation of my spine and ligaments occurred, it was frightening. I retained much of the flexibility in my shoulders and hamstrings, but my neck, ribs, and spine were indescribably sore. No longer a gymnast, I had switched to ballet before I started high school.  To be a dancer and go through a long, undiagnosed illness was less than ideal, but I was lucky to have been so active in a field that demanded good posture. Many with this illness end up permanently stooped over..

When I was 35, I took a job teaching ballet in Virginia. I had no doubts about my teaching ability, I had been trained by more than one teacher who used a cane. For this reason, and the fact that most people would react to my unmoving spine with sympathy, I was doubly surprised to end up being bullied for having such a condition. Idiocy!!

I don’t mind jokes, for instance, on days I could hardly turn my head, there were always one or two dancers who made light of it in a funny way. I remind them that none of us is guaranteed good health, and to enjoy every moment of their physical well-being. Some jokes are to be expected when you are a teacher, it happens to everyone. The group I mostly worked with were sixteen to twenty years of age. Gorgeous, effervescent, and delightful.

The  small company of dancers between 22 and 35 years of age turned out to be the bitterest and most insulting. It was a surprise to me that this culture of negativity existed and thrived. They lacked ambition, yet bemoaned being trapped with one another. I had never met so many unsmiling dancers, they hated the daily ballet class, and rolled their eyes at one another. As ballet is a visual art, most dancers learn to hide their pain or unhappiness, it is not what the audience, (or anyone) wants to see.

Most of my instructors didn’t make an announcement about why they had a cane, or what ailments they had, which is why I didn’t go in to class, sit them down, and go into great detail about my life. My job was to teach class, period.

 A  young man from Russia decided to give me a hard time, he asked a few questions about what kind of injury I suffered.  When I gave him an explanation he said “That doesn’t make sense, are you making that up?”  Having been arthritic for many years, I had become quite dismissive of those who felt best when belittling others. He was not the only one who behaved this way. There was a young woman who had recently been diagnosed with a chronic illness, and she suffered from Raynaud’s syndrome which turned her hands blue. I listened to rude, condescending jokes about her and felt like I would cry. Hoping to show my support, I commiserated with her, explaining I also was diagnosed at an early age with an autoimmune disorder. When I said Ankylosing Spondylitis, she looked at me and said “None of us have ever heard of that, are you sure that’s a thing?”

Sometimes, when dealing with ignorance, I have an easy time letting it go. I didn’t particularly care what they thought about me, I was just there to teach a good class. Thankfully, talking is looked down upon in the ballet studio.

 

 

 

TODAY

Today….. I am just weeks away from my 53rd birthday. To a large extent, this blog is for me. To gather thoughts, accept a new reality, figure out how best to remain on planet earth a while longer, and sift through some of life’s tougher times.  I will also share this with my mother who has a keen sense of what others are feeling.

I have been sick for more than half of my life. I have suffered through crushing pain, discomfort that causes sweats, nausea, hair loss, muscle spasms, muscle atrophy, and worst of all-devastating, life destroying fatigue. My body had many nagging symptoms of a chronic illness from the time I was seventeen. These problems would come and go, so I never realized they were part of just one disease.

I visited all kinds of doctors, mostly orthopaedic surgeons. Burning, bruising chest pain sent me to a cardiologist at age 24. He sent me to Cleveland Clinic’s sports medicine department for a cortisone shot. I was told I had costochondritis. I was happy to have one problem solved, for I had been unable to laugh or sneeze without aggravating this particular ache. It sounded quite basic, inflammation of the cartilage that connects ribs to the chest bone. The wish bone, actually.

I have had many cortisone injections, starting at nineteen in my S.I. joints, and more recently in my hip, knee, hand, head, and elbow. For a long time, I tried to treat my pain, but was not successful. I was taking sixty aspirin a week for several months and this led to a different set of problems which sent me to another doctor. By this time, I had no appetite, energy, or even the strength to drive a car. It took all of my energy to open the kitchen cupboard to get a glass or plate. When I stood in front of the stove to cook I felt sharp pain in my heels and lower back. It wasn’t much better trying to sit down because my sit bones felt bruised, and my body seemed to freeze in the sitting position. This became so problematic because my muscles seemed to actually become short and rigid and when I tried to stand up, I had severe muscle spasms around my ribs. It is such a hard thing, planning each move you make. There is the sense of dread, knowing the pain to come, never mind how awkward and ridiculous you look.

It kills me to remember my most excruciating year, I was twenty-five. I didn’t look, feel, or even believe I was this age; my hair seemed to have lost pigment, it was a drab grayish brown, dry, and falling out. I was tested for many things (after being questioned whether I was using street drugs, or not) including parasites, aids, and who knows what else.  The diagnosis was anemia, and malnutrition. Most of what I ate went right through me in the form of diarrhea. I had to stop taking aspirin which meant I had to move back home to be taken care of by my parents. My mother had to help me turn over in bed, and she experimented with soft pillows under my legs and lower back.

I was at once, an old woman and a child. I needed help the way a child might, but my fussy complaints were like those of an 85-year-old. I guess chronic illness does this. Perhaps, it was more devastating because of the career I had chosen, and the fact that I had been a gymnast, diver, and dancer almost my entire life. It is hard to swallow the fact that you are somehow not yourself anymore. Harder still, to have doctors tell you they can find nothing wrong.

These words seem to be a lot of rambling nonsense, but it helps me to digest and mourn the loss of who I was. It may be impossible for me to ever put things in order. I can talk about my career separately, as well as the pain caused by people’s disbelief and eventual ridicule when I finally knew what was happening to my body.

Another chance

I didn’t think I would still be here. I couldn’t have guessed that all of my relationships would change so much. Of course, I have lost many friends, they cannot understand the darkness I experienced. For this reason, I am still not fully engaged in life. I am halfway here.

I can’t quite bear reality.  I focus my gaze inward when I’m in a public place, so I won’t have to see the disapproval stamped on so many faces.

The Black Place

IMG_1162Designing life a second time is not easy. Many people  stay angry and are openly hostile to the person who has attempted suicide. They watch you with different eyes, perhaps not knowing that you still haven’t overcome the sadness that led you toward death.

There is a paralysis that sets in during the long recovery period. Your shields are down. You feel all the energy of others emotions, it is very unpleasant.

In the person you previously thought was kind and sympathetic, you now see through them, just a couple of shades deeper, and find they have a certain smugness about them. People talk down to you, as if they feel you need to be punished for wanting to die. They tell you all the times you have disappointed them, they tell you they’re sick of your shit. They tell you all the times you have made them angry, not allowing you to answer back. There actually is no answer, because you’re so shocked by what you see  in them. In fact, we are judging each other.

They have declared themselves to be upright citizens, but I see something horribly different. It’s like I came back to the wrong world. People have no integrity, they justify their cruelty towards you. They believe you should have a life sentence of punishment, and enjoy bringing you to that black place in your mind. The black place that you can’t obliterate, it lives in you now, and you never feel safe.