CHRONIC PAIN

ANKYLOSING SPONDYLITIS AWARENESS WALK (Unofficial and by myself) 7KMs Penang 21 August 2015

Yesterday, 21 August 2015, I decided it was time to attempt the 7 kilometer walk from my house to my late parent-in-laws house, here on Penang Island, Malaysia.  This was my ‘unofficial’ AS (Ankylosing Spondylitis) walk, which had two main purposes: 1) To raise awareness about AS; and 2) I would raise awareness of my work by creating photographs along the 7KM route. I would take that series of photographs and formulate a new blog entry about Ankylosing Spondylitis and show the images I designed on my walking trip.  It has been quite some time since I wrote a blog entry on AS, and I thought it was time to write a new blog entry to explain AS, the arthritic disease that I own—although…many days it owns me.

Ankylosing Spondylitis
There is no need for me to give a definition of AS of my own when the Mayo Clinic does a better job:

“The signs and symptoms of ankylosing spondylitis may include pain and stiffness in your lower back and hips, especially in the morning and after periods of inactivity. Over time, symptoms may worsen, improve or stop completely at irregular intervals.
The areas most commonly affected are:
The joint between the base of your spine and your pelvis.
The vertebrae in your lower back.
The places where your tendons and ligaments attach to bones, mainly in your spine, but sometimes along the back of your heel.
The cartilage between your breastbone and ribs.
Your hip and shoulder joints.”
(Source : http://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/basics/symptoms/con-20019766 )

SPONDYLITIS.ORG

“Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis. More information on kyphosis and fusion can be found in the complications section.

AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.”  (Source : http://www.spondylitis.org/about/as.aspx )

My Personal Experiences With AS
I can tell you that it is a horrible and painful disease that I’ve had since I was 15 years old.  It is often referred to as an “Invisible (or “Unseen”) Disease” because people who suffer from AS can appear, on the surface, to be perfectly healthy.  What people can’t see is the tremendous pain that “Spondies” feel on an almost daily schedule.  People can’t see our suffering as we try to manage living life and praying that the pain, the stiffness, and the physical damage would just go away—but it doesn’t go away. 

I have been putting off the 7KM walk for AS AWARENESS, for weeks because I have felt so painful and depressed.  And yes, there is a strong correlation proven that AS patients have a high level of depression.  I have lived with AS for 13,009 days!  That is a lot of “PAIN DAYS!” 

I get Anterior Uveitis usually twice a year.  The last very serious case caused Pigment Dispersion (PD) on the inside of both of my eyes’ lenses; PD causing some  ‘vision blockage’ in my right eye.  This has been a difficult and depressing eye disease because I depend on my eyesight as a Photographer, and now my eyesight is noticeably damaged; nonetheless, I move forward with my photography.

Due to the stiffness in my lower lumbar spine, when I had a fall from an accident in mid-2004, some bones in my lumbar spine broke off, causing Spondylolisthesis (a slippage of the vertebrate bones from their proper positions), which caused nerve pinching, and then I couldn’t walk properly.  Thus, I had to have a Spinal Fusion of my lumbar spine: a 10-hour surgery, metal implants, loss of flexibility, learning to walk again, and a recovery period that lasted ALL of 2005.

I have no more joint material in my sacrum, this is called Sacroiliitis.

When I wake up in the morning, I cannot move my fingers due to the AS affecting my fingers. 

When I go see a movie, I’m one of the last to leave the theatre: after two hours of sitting and my knees lock up due to arthritic damage in my knees.

Some days I can’t move my head very much because I have compression of discs in my cervical spine.

Those are a few of the things I go through: many of these painful feelings and symptoms cannot be seen by others—the “Unseen Disease“.  Some Spondies suffer so much that it comes to a point where they are unable to work any more.  A lost livelihood can also be a Spondy’s ticket to becoming depressed.  Depression also leads to an exaggerated feeling of pain.  It is a very vicious cycle that feeds off of itself—a trap for which many Spondies have the potential of getting stuck.

So anyway…I have been putting off this walk because 7KM IS AN EXCRUCIATINGLY LONG WALK for someone with AS.  Nevertheless, and what the hell, I needed to do this thing! 

Here is a word of caution.  One reason I often hesitate to walk far from home base is because I always have to consider that if I walk somewhere, maybe just 1.5KM, to go to Gurney Plaza, for example, if my knee gives out on me while I’ve only gone halfway, it will be a vicious and slow walk back!  However this is not 1KM…it is 7KM!  That is crazy-far for a Spondy!  Don’t let AS stop you from moving about, but be aware of what your AS is telling you everyday: their are bad days, there are better than bad days, and surprisingly, there are some good days too!

THE AS WALK
I knew that the results of this AS Awareness Walk would give me a chance to produce a new series of abstract art photographs to accompany this discussion.  It is important for me to share what I know about my disease, and what I live with because of it.  I know that people who are newly diagnosed with AS can feel alone and depressed:  AS will change your life, and usually not in a good way.

I started out on my walk under partly sunny conditions; however, a thick dark wall of clouds were hovering over the hills…I should have known to take my umbrella.  However, I didn’t want to have more to carry and keep track of, so against my better judgement, I left my umbrella at home—BIG mistake!  The time was about 3:15PM.

Along my route, I found more than 20 interesting subjects to photograph. Each time I stopped to photograph was a blessed break from the walking.  I could take a photo, stretch a little, and then move forward on my way.  Nevertheless, I didn’t stay at any one spot for too long. 

Halfway along my route, after passing the Gurney Tower, the dark clouds were on the move and it started sprinkling. I knew I was in trouble at that point.  Within 5 minutes, it as raining.  Luckily, I had my trusty plastic courier bag with me for such occasions: I stored my camera in my camera bag, and then I put my bag inside the waterproof courier bag and tucked the bag under my arm. 

I stowed my camera away just in time because the rain began to pour down abruptly from that point onwards during my walk: my camera was safe but I quickly became a soaking mess with half of the journey to go…in the downpour.

I look back today, the day after the walk, and I’m glad I got enough photos to create a series, and that series of images are below.  I’m  also happy to share some words about AS with my blog readers: maybe it will be helpful for others struggling with this horrible form of arthritis. 

I’m not so thrilled about the extra pain I’m feeling today because of the walk, but I went into this adventure knowing from past experience that any exertion will cause suffering for one, two, or more days afterwards. 

By the way, my knee did give out about three blocks from the finish line: it was the most painful and wet three blocks of my life as I tried to take one good step with my left leg, and then having to pull my gimpy right leg forward.  That part of the walk was madness-in-pain!

It took me approximately two hours to walk the 7KM.  I guess being in pain makes me know that I’m still alive:  I’ve got to look at the bright side of this disease the I own.  Another ray of hope during the drippy day was toward the end of the walk, one lady seeing me drenched offered her umbrella to me. I thanked her—I was indeed touched by her kindness. However, I told her that I was OK and that she should keep her umbrella or we would both be sopping wet.

This is the AS AWARENESS WALK PHOTO SERIES.  All images are the copyright of me, Nawfal Johnson, and they were created on 21 August 2015.  All Rights Reserved.  These images will eventually be available as photographic prints at my Imagekind sales gallery.  My link is: http://nawfalnur.imagekind.com

image

image

image

image

image

image

image

image

image

image

image

image

image

image

image

image

image

image

image

Nawfal Johnson Nur ~ http://nawfalnur.imagekind.com/

Advertisements

ETHEREAL DREAMS & HOPE – THIRD EDITION

ETHEREAL DREAMS & HOPE:  a Photographic Collection with Words to Boost Your Spirit - Third Edition, by Nawfal Johnson Nur

ETHEREAL DREAMS & HOPE: a Photographic Collection with Words to Boost Your Spirit - Third Edition, by Nawfal Johnson Nur

Wrinkled Sheets

I quickly wake up.

The room is dark.

The atmosphere is silent.

It’s happening again, getting breath becomes a convulsive effort at best.

Wrinkled Sheets…

I lie there in bed, suddenly realizing that I’m gasping for a decent amount of air to fill my lungs, but it won’t come.

Morning confusion and pain, the more I struggle, the harder it is to get a good breath.

The more awake I become, the more I struggle, but there is only so much I can do to expand a ribcage that does not want to expand.

The short night’s sleep was enough to undo the progress I made the day before to loosen up the bones that make up my chest.  All it takes is a few hours of stillness, if I can call tossing and turning most of the night, stillness.  A few hours of sleep is enough for my ribs to tighten up again.

The pressure of the early morning air seems to crush in on me, and I fight for a breath.  Muscle spasms quickly hit me and that adds to the confused and unnatural efforts it takes to capture unsteady, small amounts of air.

Even the unevenness of the wrinkled sheets pressing against my ribs cause excruciating pain for which I can find no relief.  I toss and turn slowly from side to side finding that the wrinkled sheets have created little…how to describe…like little speed bumps all over the bed, and those push up into my body triggering more muscle spasms and crushing my chest.

Just a breath, just want no pain.  “I just want to wake up and feel good in the morning,” my brain screams!

If lying down is horrible, then sitting up must be better,” I say to myself.

I begin the sitting up process:  I push myself into a sitting position, and then I swing my legs off the bed and I sit there in pain.  I feel the spasms hit me in regular fits as I attempt to breath normally again.

It feels like the ‘Devil Hand Grip’ squeezing my chest.  Perhaps, this is the ultimate wrestling hold of all time, I don’t know.  What I do know is that this crushing hold happens with all too often a frequency.

After several minutes of sitting at the edge of the bed, there is no relief, it is the same…standing must be better.  It is too bad that I can’t sleep while moving around, while walking.

Standing is better.

The ribs are still clamped down on my lungs, but they are easing slightly and loosening up the more I move, the more I breath.

The spasms subside as the minutes tick away:  An hour goes by and breathing is considerably easier.

Breathing.  A full and refreshing breath.  Something so natural, so necessary, so unnoticed most of the time.  However, when episodes like this happen, the lack of good breathing becomes very noticeable to the “Spondy” (a term for a person with Ankylosing Spondylitis), especially in the early hours of the morning.

What sets it off?  I don’t know:  It’s just the disease.  That’s what happens.  I should be used to it by now, after 26 years of mornings similar to this one today.  But why should anyone ever get used to pain?  I don’t have the answer to that one either, but I know that as a Spondy, it will come and that is all there is to it.  I’m not bitching about it:  I’m just sharing a few thoughts about what it is like for me with Ankylosing Spondylitis.  Maybe there are others with AS who can identify with these types of mornings.  If you can, then you are not alone.  I only wish I had some answers for you to help make the “experience” easier.

One thing I can tell you is that there are, what I call, trigger foods:  Trigger Foods are those that seem to cause inflammation in the body.  At least, the list of foods that follow are some of the ones that make me feel very horrible the next morning, because they seem to consistently cause more stiffness and pain for me:

  • cauliflower
  • eggplant
  • potatoes
  • yellow dhal (lentils)
  • cabbage
  • tomatoes, tomato paste, and tomato sauce (ketchup is OK, however – not sure why, but happy about this!).
  • …and there are more, but these are my worst.

The problem is:  I love eating all of these things!  Damn the Arthritis!  Anyway, these foods, or any type of food that has a lot of these products in them (i.e., pizza, and many of the South Indian foods that I like to eat), seem to cause me extra pain.  All I can say is:  “Eat at your own risk!”

I’ve had my share of good, bad and ugly mornings.  This one was particularly UGLY!  Maybe that is why this blog entry is finally surfacing.

Maybe it’s just the wrinkled sheets.