Since my illness recurrence last November, I have been categorised as a patient with chronic illnesses (Read my article titled “Recurrence: a blessing in disguise” to find out more about what happened). Even though two months have passed, I found myself still grappling with the term. Hearing my doctors and I say it out loud, especially during the ensuing outpatient appointments, is even more bizarre. I am slowly beginning to realise that my life has literally taken on a different meaning since I became chronically ill.
Being chronically ill have changed my life’s focus, as I am sure it had for countless other patients. I don’t talk much about anything other than finding the underlying cause of my illness, the never-ending multidisciplinary outpatient appointments, what to do in case of another recurrence, treatment choice, second opinions etc. I may have bored my friends and family member to death about it. Although this shifting focus is expected, it still feels rather unusual. And, I terribly miss those carefree days when all these worries were practically non-existent.
Change in expectations
When I realise that there’s no turning back, that it is what it is, I knew I had to change my expectations about my life STAT. Many times, I needed others to remind me to have realistic expectations about life in general and what has come to be my reality. I had dreams, as do others, but I had to accept the fact that some of those dreams may have to take a backseat from now on. It is foolish to think about anything else other than getting myself in the best position possible so that I would be able to function as normally as I could. But then, what is normal?
Scheduling appointments, the timing of daily medications and planning for medication continuous supply has become part of my routine now. And when I plan to travel, I constantly worry about illness recurrence happening while I’m outstation and far from my treating doctors. So, I venture a small distance at a time. Always proceeding with caution. Work has also ceased to exist in my life, as I take the longest leave of absence in my entire career. And now, I am not even sure if I’ll be fit enough to return one day. Talk about major lifestyle changes.
As you can see, a lot has changed in my life since I became associated with chronic illness. What I want you to take away from this article is that all those changes I wrote above are not unique to me. I am definitely not an isolated case, far from it. Many people go through these changes daily. Some people even go through the changes in worse circumstances than myself. I know it is not easy and I pray for strength every day. But for now, let me take my own sweet time on this journey that leads to nowhere. This is my life now, and I’m in no hurry.