Groundhog day

Monday last week, the 8th of April was Cushing's awareness day. Unfortunately because I was traveling from London to Hong Kong I was unable to write a special post or even put anything on Facebook. By the time I landed in Hong Kong it was late at night and I was so exhausted that I just couldn't bring myself to write anything. But as one of my fellow cushies pointed out, EVER DAY is Cushing's awareness day for us!! Because we suffer from this terrible disease every single day. In the last 10 or so years I've been suffering from symptoms, not a single day has gone by when I have felt "normal".

I wake up and feel more exhausted than when I went to bed the night before, it makes me "aware" that I still have Cushing's.

I get ready in front of the mirror and stare at the reflection of myself which I no longer recognise, I'm "aware" I still have Cushing's.

I try to run errands during the day but become exhausted halfway through, I'm "aware" of the presence of my Cushing's disease.

I've called this post Groundhog day in reference to the film with Bill Murray where he wakes up and every day is the same day repeating itself. Sometimes I feel like everyday is the same for me. I wake up, take my medication, feel tired and shit all day long, try and engage in some form of activity and end up exhausted and in bed by 10.30. Wash, rinse, repeat... 

Awareness days are all well and good and I'm glad that one even exists for Cushing's, but what's important to remember is that for those of us who suffer from this disease, it isn't just a one day thing. It's our entire lives. That isn't to say that I have let it consume all my life and no longer have control but the truth is there are lots of things I can no longer do because of what this disease has done to me. And it's tough!! Nowadays the struggle is particularly tough because as I mentioned in my previous post, my surgeries were unsuccessful at curing my Cushing's but did manage to successfully ruin all my other hormone function. I take a ton of medication every day and some of them are having some nasty side effects. I've been suffering from terrible nausea and fatigue and the worst thing is that no one is able to help me. My GP has no clue and my specialist only offers to prescribe me more medication against the nausea! Oh yeah, that's what I need, more meds!!!

Any way, the only good side effect so far is that I've lost most of my appetite and no longer have those horrible hunger pangs during the day. Nowadays I barely eat 3 full meals. Meaning I've lost a bit of weight but to be honest this is not the way I wanted it to happen...

I guess the reason I want to remind people that diseases don't just last a day is to increase their awareness and "consciousness". And it's not just for Cushing's, I'm talking about people suffering from other things such as Cancer or even poverty. I'm not saying you should spend every day mulling over the miseries of the world, but take a few minutes to be thankful for what you have and try and exercise some tolerance and care towards others. Next time you see an overweight person, instead of judging them why don't you smile? It might make their day! Or offer someone your seat on the bus if you are healthy and able. One big gesture (e.g. a donation) on an awareness day is a wonderful thing, but there are also tiny things you can do every day that can help make a difference.