I recently prepared an article about how chronic illness has changed me. I have written articles on various topics related to chronic illness including its role in the workplace, its effect on depression, exercise, sleep, dealing with flare-ups and relationships. I have even written about its effects on intimacy. While many of these topics have been hard, especially because of my own personal experience, I never imagined that writing about how chronic illness has changed me could be even harder. I found myself looking back at the person I was prior to rheumatoid arthritis and fibromyalgia and what I realized was that, I no longer knew that person.
Having to think about how much I have changed since chronic illness became a part of my life, I realize that being sick is hard work. Sometimes, I want to just jump on a podium to let the entire world know what it is like. Not only is it hard work, it is frustrating to live a life with constant pain, fatigue and just the not feeling good sensation.
I am doing the best I can
So yes, living with two chronic illness is hard work and I am doing the best that I can trying to maintain a balance between my life and the rest of the world. Healthy people have no clue what we go through. I am not sure what people see when they see me. You know the old saying, “But you don’t even look sick?” Either I am good at hiding it or I really make coping look easy.
I wouldn’t wish what I go through on a daily basis on my worst enemy. Although sometimes, I wish that people could walk in my shoes so that they could truly understand what I endure on a daily basis. Or perhaps someone could borrow my pain, sickness and fatigue for one day so I can feel what being healthy is like since it is something I barely remember.
When I am thinking rationally about living with chronic illness, I realize it is my burden to bear. Every single day with RA and fibro is trying on my body and taxing on my soul. I try to push aside what I am feeling so that I can function like a normal human being but no matter what I do, the pain, sick and fatigue manage to catch up with me. So yes, I am managing my health but it is hard work.
Sometimes, it is hard to keep going. It is no wonder I became depressed. When you are sick all the time, it is easy to lose sight of the big picture. It is hard to figure out what your abilities are and you lose confidence. Sometimes, it is in the day to day stuff and other times, you are forced to look back at the pile of missed opportunities. Missed opportunities are big and small – like missing your child’s match because you are too sick and tired to attend or giving up your dream to attend law school because it would be too much with all you already have on your plate.
Every day is a battle with fatigue and pain. You struggle with expectations from others – family, friends, employers and coworkers- but mostly, you struggle with the expectations you have for yourself. How come something as simple as keeping your small home clean is difficult when someone else – your own mother- has a bigger space they manage to keep clean? I think my biggest struggle is that I am still trying to be the person I was before I got sick and it is something that is difficult to do. There is no way I can ever be that person again.
Yes, it is hard work
There is no question that being chronically ill is one the hardest jobs you will ever have. Illness takes a great deal of time and energy from you and even out of your day. Meanwhile, you still have to tolerate it to function in a healthy world.
Incurable, invisible and even impossible – that is how I describe my life with RA and fibro. Living life with chronic illness also feels like a pretty demanding job. Every day brings with it new challenges and life doesn’t stop because I woke up with achy and stiff joints. Further, no two days are the same so you can’t even plan or prepare for the bad days.
Being sick has been my second job for the past five years. It is also the baggage that I carry around with me everywhere I go. It is a 24 hour, seven day a week, 365 days a year job.
But I find ways to cope and to better manage my life with a chronic illness. Every single day is a determined and strenuous effort on my part. Planning depends solely on the amount of energy I have and sometimes, even my best laid plans aren’t enough.
The truth is that I have good days, bad days, and downright ugly ones. There are days where my entire body is inflamed, I feel sick to my stomach and I just want to sleep. Sometimes, the sleep comes and sometimes, it doesn’t. Other days, the pain leaves me and I have what I call my good days. It takes a lot of effort on my part to have good days. I have to be careful what I eat, I cannot overdo things, and I have to keep moving. The pain is never completely gone but when it is at a minimal, I know that it will be back when I least expect it.
I am managing
If I am managing well, it is due to great effort on my part. Having good days is a hard work and so is dealing with the bad ones. I have learned that managing life with RA and fibro is like trying to steer a battered ship in uncharted waters. Every storm changes my direction and leaves me confused and lost and it takes a lot of effort to get back on course.
Life with RA and fibro is difficult but life is still good. I am coping despite the struggles that both diseases bring to my life. I have learned that even on my worst day, I am capable of greatness. After all, it takes a lot of a courage and determination to continue to steer a battered boat during a terrible storm. I am still going and as soon as the storm clears, I can assess my situation. It is too difficult to stop and assess things during a storm. All I can do is plan for the worst and pray for the best.