Two me handling the pain

There are two me dealing with chronic pain in completely different ways.

I accept my condition. I surrender to the fact that I may have to live like this forever. I look for ways to soothe my body through conscienscious reflexion, movement, breathing, eating. I live in my head, constantly reminding myself that my pain is not me; it’s just a roomate. I smile, I dress up, I make plans, I stretch in front of others, I bring my cane to dates, I shop for bikes hoping I can eventually use one. I am deeply thankful to those who offer help, inclusion, company. I fortify this precarious serenity despite the unavoidable uncertainty of what is to come. I hold on dearly to my dreams and aspirations. I look for purpose. I cry when I need to.


My soul is working 24 hour shifts on this practice.

I refuse to accept the idea that anyone should carry on living in constant pain. I curse my condition from the deepest, darkest places within me. I am angry at events passing me by for which I had made a committment; a friend’s birthday, an engagement party, a family reunion, an interesting conference, a work project I considered dearly, the beginings of a meaningful relationship. All these gatherings I must miss and will soon be excluded from. In my house I remain shifting from bed, to couch, to floor, to bath. Waiting, waiting, hoping for it all to pass so that I can be myself and live again. I don’t know where to devote the precious instants in which I am functionnal; should I squeeze in a quick email, a salad, a 3 minute walk, should I be getting myself on a bus, just to get out? When do I get a break?? When will they figure it out and give me my body back? I’m sick to the stomach thinking of another hospital visit, another unaware professional who will offer nothing but pills, pills, shots. I’m exhausted. I’m tired of telling my story. I hate my parts, I dream of them getting chopped off.


My ego is at war with my biology.

Capture d’écran 2013-10-09 à 09.42.32

Too young for this

 

Everything about arthiritis screams « old people ».

Note how advertisements for its products target seniors loosing one ability over another; the info on this chronic illness is plastered with pictures of the elderly; specialists are only available during the day while I should be at work yet retirees can afford the wait times and everlasting bus rides; support groups are more concerned with venting and sharing pictures of cute kittens to brighten up my day then with raising hell to find a solution to our common problem; when we raise funds we don’t « run for the cure », we « walk for arthritis ».

There is no network of citizens turned lobbyists on this issue, no patients forums openly discussing treatments, no locally-based social clubs proposing adapted outings… Or else they would have found me/they would be better at making themselves known. Within 2 degrees of separation I know 3 people under the age of 30 with spondilitis. Where is the rest of us hiding?

« 1 out of 6 Canadians has arthritis. » (1)
« Arthritis affects more adults than cancer, heart disease, respiratory conditions and spinal cord trauma, and has a serious impact on quality of life. » (1)
…« with 48% stating that it prevents them from working full-time hours. As well, 73% said their illness affects their daily activities at home or at work, 42% said their illness interferes with hobbies or recreational activities. (2)
« Although arthritis is associated with aging, a substantial number of Canadians in their prime working years report this condition. At ages 45 to 64, for example, 17.2% of males and 24.8% of females, representing more than 1.9 million people, reported a diagnosis of arthritis in 2008. » (3)
Only recently has arthritis been recognized as a cause of mortality. (4)

Why aren’t we openly talking about all of this?

When I look in my bathroom cabinet, a row of bottles of pills fills up the space where my teeth things and face things once stood. It feels foreign to reach into it every morning like « sick people » do.

I may be sick but I am young. Incidently, I am pissed off. The last excuse I want to have for not going to the gym, being late somewhere, or not doing my dishes is « Darn, my leg is spasming, my lower back feels like its dragging a cement block, I can’t walk ». I have yet to accomplish anything significant with my life, let me MOVE!

My yearly motivation for everything I do is some type of intense excursion or radical trip I go onto every single year around my birthday. Next up on the list was BC-Yukon or Kilimandjaro (before all the snow melts). In the Fall, I would normally be coming off the high from my last trip and already get thinking about the next project. The anticipation and excitment would slowly grow as I’d do my research, save money, and work on my fitness. This year, I am spending every penny I have on alternative treatments to avoid chemicals, my free time goes to researching my problem, and I remain unable to be mobile for more than a few graceful blocs of 15-30 minutes every day. Woot.

Don’t talk to me about how this is just a year in a life. Now is everything you have; its the only thing that is real. How you spend your days is how you spend your life. I’m not going to spend mine locked-in my own body. (I worry about how long I can sustain this perspective.)

When it comes down to it, I wish arthritis WAS an « old people » illness because no one should have to live in pain for multiple decades.

I also wonder if this type of wishful thinking and the general perception of arthritis as a simple consequence of aging is the precise reason why this chronic disease has gone under the radar of popular conscience for so many years.

Considering the latest statistics and the fact that both my sister and I will HAVE TO live with spondilitis until we die (i.e. possibly another 50-70 yrs), I wish more people knew that we suffer a great deal too. Our future, just like the quality of life of any human being with chronic pain, is worth seriously looking into and acting upon.

June 2013 032

My Last Summer of Health

 

I spent my last summer of health doing unhealthy things: I drank, I smoked, I stayed up late, I played my favorite sports, I had sex as often as I could. I didn’t let my body say “No” until my hips stayed locked for 2 days after an eventful evening of recreational softball and kickball.

The season ended on a bittersweet note. It was prematured, left me empty handed, and in many shades of pain.

I spent the summer with a person whom I shared very little interests and personality traits with. We went on picnics, danced in the living room, pretended to be rich and famous, kept close. He turned out to be a source of uncertainty and anxiety who dumped me when shit got real on the pretense that I needed to ” learn to love myself “. Dude, if you only knew.

My last summer of health was spent trying to forget. I needed to get passed turning my back on my first love earlier in the Spring: a 5.5 yr commitment, my main source of comfort and support. I needed to forget for a moment that life was going to get rougher inside this shell of a body that had taken so long to accept and begin to love. At the peak of my self-acceptance and physical well-being, my “inner” body was suddenly breaking down on me with this AS intruder.

People take the phrase “Love yourself inside and out” naively lightly.

I should have spent my last summer of health going places, taking spontaneous trips, simply MOVING instead of over-indulging in “chillage”, excessive sit-down partying, and late night movies (Did I not tell myself this a million times?). How was I to know I was going to miss walking before having a beer only a few months later?

I should have spent the summer sincerely securing lasting friendships. Then I would have built a strong network of support. Instead I remained my natural social butterfly self, going from one circle to another, unwilling to acknowledge that I need others. How was I to know that Mr. Summer fling would bail?

” La cigale ayant chanté tout l’été, se trouva fort dépourvue, lorsque la bise fut venue.” – La Fontaine

Only a month into the fall semester…

I cut off drinking and smoking. Every time I muster the strength to go out in order to get my mind off things, I suffer the consequences of a drink or a drag through huge flare-ups the next day. I wish I had never tasted spiced whiskey or developed the want for menthols.

Lessons in causality.

The last thing on my mind is sex. With another person, that is. Practically speaking, I can’t really widen my legs anymore and I can no longer bend down to shave my legs. For someone who’s always seen the bedroom as a playground, the status quo could not be more frustrating. You just can’t make sweet lovin’ if you can’t move… Unless the person you are with gets it. I am not that lucky for now.

I haven’t been playing team sports, biking, swimming, practicing yoga, or doing manual labor in weeks seeing that I can barely walk. I truly forget what a normal back and legs are supposed to feel like. I wait patiently for the solutions in place to have some sort of effect and watch the muscles I worked so hard to develop wither away. Damn you, Jillian Michaels!

My professional life is in sufferance. I work for a comprehensive organization but I’m systematically late due to morning paralysis, and frequent doctor appointments. I should add that it is hard to concentrate when you casually have to stifle your urge to cry all day due to unpredictable flares of pain.

Being sheltered-in all summer drove me crazy because I had an urge to move; time was ticking and I knew it.

Now that I am physically restricted I feel secluded and incredibly lonely. It’s not easy trying to have people come to you when appearances do not leave them guessing how much you need them.

Fall is my favorite season but this one severely blows as it is.