Define me Chronic

(Of an illness) persisting a long time or constantly recurring.

I checked up the dictionary on the meaning of chronic, because although I keep encountering this word as I try to educate myself on my condition, I don't think it really hit me on how long I should expect to experience this pain.  I was hopeful that my flare ups are occasional and go away in time.  I guess CHRONIC means I was wrong. 

I had wanted this post to be about my 12 day trip to Nepal, where I did 5 days of trekking on the Annapurna trail.  And how I managed it with my condition.  I can simply cut that short now just by saying I took 90mg of Acorxia everyday that I was in Nepal.  Yes, I pumped my body full of drugs just to achieve an enjoyable holiday.  It was completely worth it, to see the beautiful mountain ranges and flowing rivers.  But somehow, i feel that the drugs costed me more than it helped me.

When I came back home, I stopped Arcoxia completely.  Unfortunately, I fell sick also, complete with fever, sore throat, flu.  I'm not sure if it was the stoppage of Arcoxia or the infection, but the flare up that happened that weekend was completely unbearable.

It's been almost 3 weeks since then, some days are better than others.  I had been getting up earlier in the mornings because I get awoken by my pain, but I was okay with it, because I was getting up at 6am.  On the bright side, that just gave me more time to get ready for the day!  However, last night I was awoken at  3.15am and had such difficulty getting back to sleep because of the pain in every part of my back and neck.  Finally, after a long, hot shower, my pain eased a little and I was able to sleep again. 

Honestly, this is a constant battle. I don't think I fully understood the meaning of CHRONIC till now.  I just pray this understanding helps manage my expectations and my condition better. 

The Flare Up

Mornings are the worse for me.  Sometimes I dread going to bed, just imagining the pain I will feel in the morning when I get up.  I've learnt that running hot water down my back helps and eases quite a bit of the pain and stiffness. Thank God it gets better through the day.  

In the last post, I mentioned that I am currently experiencing my worse flare up.  It started sometime in August and it felt like backaches, and that's what I thought it was.  As time went on, the discomfort progressed into more pain and stiffness. I do yoga regularly, around 2-3 times a week and began to find it difficult to do yoga, as I was experiencing pains in my shoulder and upper back region.  My neck began to feel very stiff.

By September, my discomfort grew so great that I finally convinced myself of the need to see the doctor. (I admit I amquite stubborn   and don't like seeing doctors! That would just mean admitting that I am sick and I hate that feeling!)  I went to the local GP and had a consultation.  He was shocked that I tolerated the pain and discomfort this long, instantly proclaiming that I was currently experiencing a major flare up.  He prescribes me 3 doses of maximum strength (120mg) Arcoxia and 10 doses of 90mg Arcoxia.  I only realized how far i was feeling from normal, since I had tolerated the feeling the pain (and exhaustion, fatigue and low-grade fevers) to the point of being used to it.  

The pains came back as soon as I stopped the drugs for a couple of days. I was slated to go to Nepal for a mini adventure trip, which involved trekking, water rafting and jungle activities, at the end of September.  How will I make it?

Ankylosing Spondylitis

I wanted to start a blog to document my journey as a sufferer of Ankylosing Spondylitis.  For those who don't know, Ankylosing spondylitis (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 & discomfort.  In the most advanced cases (but not all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes causing a forward-stooped posture.

AS can also cause inflammation, pain & stiffness in other areas of the body such as shoulders, hips, ribs, heels & small joints of the hands and feet.  Sometimes the eyes can become involved (known as Iritis or Uveitis) & rarely, the lungs and heart can be affected.

The hallmark feature of ankylosing spondylitis is the involvement of the sacroiliac joints during the progression of the disease, which are the joints at the base of the spine, where the spine joins the pelvis.  (Source: http://www.spondylitis.org/about/as.aspx)

I experienced my very first flare up when I was 22 years old.  I had just completed my university studies in Perth, Western Australia and was working as a waitress.  My Saturdays then had a nice routine to it, I would go for Ashtanga yoga at Leederville with a couple of friends, after which we would proceed for brunch.  It was one of those Saturday mornings that I got out of bed, and immediately fell onto the floor.  My right hip was in excruciating pain and I could not support my own body weight.  It was another few moments before I regained my strength and could walk again.  Within the same day, the pain came and vanished, and I did not encounter another episode for a few years.

I suffered my second attack when I was 25.  I was struck down with massive inflammation in my sacroiliac joints.  By this time, I was working a full time job in a bank and had to take a whole week off from work as the pain I was experiencing rendered me immobile.  This was when I went to see the rheumatologist and got diagnosed with Ankylosing Spondylitis.  Statistically, this disease happens to male patients between the age of 20-40.  I wondered what were the odds of me, a 25 year old healthy female, getting this condition?  I could not accept this diagnosis.

However, I had a painful bout with what I thought was sore eyes last year.  My left eye was red, swollen, teary and photophobic.  My vision was completely unclear.  I went to the GPs and the eyedrops they prescribed only made my eyes worse.  A visit to the eye specialist and I diagnosed with iridocyclitis, which is an inflammation of the iris and a condition that could occur in conjunction with AS. 

In June this year, I had a second flare up of the iris and I am currently suffering from the worst flare up I have ever encountered.  I am now dealing with the daily pain in my sacroiliac joints, lower back, upper back and neck.  It hurts me to stand up after long periods of sitting still, and I suffer the most pain in the mornings when I wake up.  I am now unable to turn my neck full rotation and unable to see behind or above me.  I experience a tightness in my chest and breathing difficulties as my ribs are not expanding as much as it used it.

But regardless of this, I am keeping my faith.  "I will lift up my eyes to the hill - from whence comes my help?  My help comes from the Lord who made heaven & earth.  He will not allow your foot to be moved; He who keeps you will not slumber.  The Lord is your keeper."  Psalm 121:1-5 (NKJV)

I have also committed to taking active steps in helping myself, staying active through yoga and swimming.  In addition, I will change my diet to remove inflammatory foods and include ingredients that help to battle inflammation.

This blog will document the struggles I have with this disease, changes I make to my lifestyle and I hope that it will help fellow AS sufferers out there.