Glimpse into a misunderstood illness; Chronic Fatigue Syndome/Myalgic Encephalmyelitis

Having a chronic health problem is frustrating and horrible. Having a chronic health problem which is yet to be fully understood by medical and scientific explanations is like slamming your head against a wall of nails. The sheer arrogance, ignorance, insensitivity and degradation put towards people with these illnesses is mind boggling. 

I recently had a cardiologist tell me that all I had to do was to "change my attitude." This was based on an extremely brief summary of my current diagnosis and a tilt table test. The fact that he heard the words "Chronic Fatigue Syndrome" was enough for him to summise that I had just got up one day and said "eh, I couldn't be bothered." Had he stopped a minute before his relentless lecture, I could have informed him of the years of pain, discomfort and illness I have pushed through, trying to live a normal life and keep going. I could have told him of all the tests and doctor visits I have undergone; all the days at work when I could barely make it though; all the times I've blacked out while driving. I could have shown him the out of whack blood results, the kilos of weight loss, the limited diet my body allows me to eat, the signs of physiological stress, such as hair loss and nail ridges. My extremely low blood pressure alone could have shown a cardiologist of all people, that there are multiple physiological issues with my body. I could have told him about all the social events I miss out on, the relationships that have abruptly ended, about the work that I love but can not do, about the mind numbing boredom and loneliness that comes with it all. I could have told him about the endless articles I read looking for answers; about the hydrotherapy sessions I do each week; about the natural therapies I undertake; about the never ending hunt for something to help me improve my health. It just blows my mind that someone could have such an almighty view of himself to think that telling someone who is chronically unwell to change their attitude, when he obviously has absolutely no idea what my attitude is, was something appropriate or useful. He barely told me the results of the actual test I went in for; he just got lost on his tirade against a condition he clearly does not understand.

Glimpse into New Year choc chip cookies

For New Year's Eve, I decided to make a quick and easy batch of cookies. I know, I know...I make up a lot of cookie recipes! But I love them! So easy to make and so yummy to eat! I used a different combination of ingredients this time, and they turned out to be probably the best cookies so far. Slightly crunchy but soft in the middle...yum!

 

Glimpse into the New Year

Today is New Year's Day. A day typically dedicated to reflection and statements of intentions. Every New Year for the past 3 years, I have made New Year's resolutions. These have all revolved around my health and improving its state of deterioration, which had begun to speed up between 2008 and 2010. Each year, I felt more determined than the previous to work harder at finding out what was wrong with me, how to fix it, and go about doing so. And at the conclusion of each year, I was left feeling varying levels of failure because of these resolutions. (Although, 2013 has probably revealed a lot more potential than other years, even if it has been one of the worst for my body.) So this year, as 2013 began to wrap up, and 2014 loomed closer, I decided to not make a resolution. I felt I did not want the self imposed pressure, when I already know that I am doing my best to improve my health. More specifically, I didn't want that added feeling of failure when reflecting on previous resolutions, when my health battles are frustrating enough.

However, on the day of New Year's Eve, as I read people's statements, and listened to them explore their purpose and decisions, I began to think that maybe I do need a New Year's Resolution. After all, it is but a goal, and I constantly have small, medium and large goals in my life, which all of you with chronic health problems will understand too well. So after mulling over what I need to improve or appreciate or stop doing or start doing, I came to this conclusion. In 2014, I will just be.

          ~ Let go. Just be. ~

I am constantly over thinking things in my head, partly due to having too much time to over think, partly due to the frustrating dead-end feeling that comes with chronic illness. I find myself unnecessarily worrying, or unnecessarily being frustrated or saddened by some one's actions, or building something up and then being unnecessarily disappointed when it doesn't happen that way. Chronic illnesses takes what you thought was normal, and throws it up in the air and causes it to land in a million different directions and angles. I have said it before and I will say it again; we need to allow ourselves to step out from the dark cloud that chronic illness is, and enjoy what we do have. Live in the moment. We don't get to do this "life" thing twice (as far as we know!), and it seems ridiculous to let it slip past us, while we let illness tarnish our thoughts, alter our plans and change our happiness. Obviously, chronic illness comes in all shapes and sizes, and inevitably our thoughts, plans and happiness will be effected. Also, chronic illness requires determination, motivation, strength and perseverance to battle, so I am not saying we can just sit back and hope all will go the way we would like.
However, somehow, in the blur of pain, confusion, frustration, and sickness, we need to find a way to see the good in a moment, not just the discomfort. In 2014, I need to, we need to, just be.
           Happy New Year!