Mr JC Lee
Age : 43 ( Ankylosing Spondylitis (AS) Warrior )
I was diagnosed with Ankylosing Spondylitis (AS) through an incidental finding. It was not on purpose and we found out via a common comprehensive health screening and blood test at a hospital. The readings of both the inflammatory markers namely the ESR and hs-CRP where higher than the standard benchmark and I was asked to repeat them 3 months after.
The same results were recorded when I did my blood test again 3 months after. I was then referred to a rheumatologist and she did a few assessments on my flexibility including the Schober Test. Thereafter she sent me to get an x-ray of my pelvis and found some very minor fusion on my left sacroiliac (SI) joint. It was based on these assessments and the x-ray coupled with high reading of the inflammatory markers that she diagnosed me with Ankylosing Spondylitis. Later on I also got a HLA-B27 testing where I was tested positive, further confirming my diagnosis of Ankylosing Spondylitis.
Living with Ankylosing Spondylitis (AS) is definitely not easy and it can be very challenging most of the time if not all the time. Ankylosing Spondylitis does not only affect our spine though primarily it does. But it also affects many other parts of our body too. Physically there will be a lot of pain to be endured. Some mornings and days are better than the others. Personally, for me I struggle with uveitis rather often. It visits me once a year if not twice. But there are also some years that I do get through without any recurrences too.
Sometimes it may affect one eye sometimes it affects both eyes either one after another or worse, both at the same time. Stiffness and limited flexibility is also a challenge. Most days are filled with morning stiffness, fatigue or lethargy. Pain in the body is a constant but the tougher part for me is the mental challenges. For me personally it is the uncertainties that affects me the most.
Not knowing when the next inflammation and flare up will happen, where will it strike and for how long will it stay or go, these are the toughest questions that will cause a stir of anxiety and sometimes could throw me off my work schedules. And it is a vicious cycle, the more the stress the more the inflammation and vice versa.
My take on living with Ankylosing Spondylitis as a patient and for all fellow patients too is to have a longer term perspective of our conditions once diagnosed because this is really a lifelong condition. We have to start off learning as much as we can about this disease, the treatments available, where to seek help, what to do and how to live with it for life. Find a rheumatologist who is passionate about Ankylosing Spondylitis and most importantly also has the patience and interest to care for you on a long term basis. Try to write down new conditions, pains and symptoms that affect you and refer them to your rheumatologist and get proper advice on them.
Visit your rheumatologist often to ensure your condition and inflammatory markers are well managed and continue to have regular follow ups. Try to be as active as possible and do your best to make time for exercises everyday. There is a saying in Ankylosing Spondylitis that “motion is our lotion”.
Learn more exercises and stretches that can help with flexibility and stability, do some workouts for strength and endurance too if you may. Get connected to a sports physician and physiotherapist who has an interest in Ankylosing Spondylitis and whom can attend to you when you need help. Lastly, learn to manage emotions and stress because these could trigger much inflammatory responses in our bodies.
Do reach out if you need any help or assistance, join Arthritis Foundation Malaysia (AFM) or a community or support group where you can share and leverage on the experiences of other senior patients who has gone through or going through the same issues that you are facing. Keep a strong mind and positive outlook on things and hopefully with stronger will power we can keep on going and living strong.
25th of October 2022