Hakuna Matata

Today is Cushing's awareness day!!!

It gives me great joy to be able to report on this day that I am celebrating my 200th day of being Cushing's (nicotine, caffeine and alcohol) free.

Though today is a great day for me because the sun is shining and I feel good, it is important to remind people that Cushing's is a terrible, complex and deadly disease that is often overlooked.

Although today I can report that the results so far suggest I have been cured, things are never so black and white.

For those of you who read my blog regularly, you will know that a few months ago, only 4-5 months after my pituitary surgery, I was already afraid that my Cushing's was back because I'd gotten a high ACTH and Cortisol level on a blood test.

Turns out that was probably a one off as I had suspected but obviously I couldn't be sure without further testing. In fact, although my 3 x 24hr UFC (urine free cortisol) readings were good, I still have to do one more test to make sure. This weekend I'll have to re-do the low dose dexamethasone test which some of you might be familiar with. For those of you who aren't, all you need to know is that if my pituitary gland and hormones are functioning properly, taking a low dose of this medication should suppress my cortisol and when my blood will be drawn on Monday, I should get an extremely low reading. This also means that this weekend, while I'll be suppressing my cortisol I will probably be feeling like absolute sh*t!!! Good thing I don't have anything special planned...

So why do I think it's important to raise awareness even though I've probably been cured? Well because again, if you've read my blog before, you'll know that the journey to diagnosis, treatment and cure is a long, painful and challenging journey. I know from my own experience and that of others that it is a hugely misunderstood and under-diagnosed disease. Because it is so rare even being diagnosed does not necessarily mean you're closer to having an answer or cure.

I belong to an online support group and I'm amazed at how much information we have to provide for each other because the doctors simply don't have the answers!!

An another hugely important reason why I think it is important to raise awareness is because us Cushies are very often misunderstood!! You cannot imagine (well maybe you can) the amount of times I've been called fat or lazy by people sometimes even in the medical profession. I often get labelled that way because of all the weight I have gained due to Cushing's. No one will accept the fact that the weight gain was out of my control! I'm not making excuses or saying someone force fed me, but I challenge anyone to deal with increased appetite, lack of satiety and their body storing fat like they were going into hibernation. Try dealing with that and not putting on weight!!

I think what is most hurtful about the "sloth" assumption is that I, like most Cushies I know, am a naturally very active person and have always been until I became sick. Most people who know me in a professional capacity will know that I am not lazy!! Unfortunately, even people who care about you and are around you will sometimes mistake depression and lethargy as laziness.

The amount of times I've had to say to my parents: "It's not that I don't want to clean my flat, I just don't have the energy to!!"

And if I'm to be completely honest, I can understand why that would sound like a complete cop out. You expect an elderly person perhaps to say such a thing, but a 20 something year old? You'd just assume they were making excuses. But I'm not! That's the reality of Cushing's.

Not only does it strip you away from your sense of self by turning your appearance into something you dread, it also rids you of the ability to perform what others consider basic tasks.

Something as common place as hoovering, dusting, washing the dishes can require an entire day's worth of energy.

I know from some of my Cushie friends whose symptoms are worse than mine who describe being out for 3 days after spring cleaning their home. It might seem like an exaggeration or joke to you but trust me, this is no laughing matter.

In a way, it's ironic that before I became sick I hated doing the housework. I always did it with such annoyance, wishing I could be doing anything but. Now that it's hard for me to do such things, I wish I hadn't taken the fact that I actually could do it, for granted.

What I'm saying is that I wish I could have appreciated the fact that I was able to do that for myself rather than focus on the fact that I didn't want to!!

We rarely realise how fortunate we are to be able to consider not wanting to do something we can, than yearning to do something we can't...

But things are different for me now. Thanks to my experience I've come to appreciate what I have, the little things that make life worthwhile. I'm not going to go on preaching about how we should be grateful for the sun in the sky etc... But I will say this: Next time you feel like complaining about your sh*t job, or your small flat or whatever else you want to complain about, consider the alternative! You could be unemployed, homeless, in poor health or have your life devastated by something terrible like a tsunami.

Some of you will have noticed that I've changed the background image to my blog. It is now a scenic picture of the place where I was born, Hong Kong. There are several reasons why I chose this background.

Firstly, I wanted a brighter background because although I loved the old purple one since purple is my favourite colour, I just felt like it was a bit too dark. It was giving my blog a sort of dark and dare I even say, somber tone.

But I also wanted to put a picture up of Hong Kong, the place where I was born and spent 12yrs of my life because I will shortly be moving back there. I am finally able to go back to start the Masters in Behavioural Health which I deferred from last year.

Two nights ago, I was thinking about my impending move and I started getting very stressed and restless as I was lying in bed trying to sleep. The reason I felt troubled rather than excited was that I was nervous about what was going to happen with regards to my Cushing's. I hadn't received my results yet and I just couldn't imagine what I would do if the doctor had told me that it was coming back! I then also started panicking about all the things I had to do before I left, pack up my flat, put it up for rental, sort out my taxes, cancel all my contracts, credit cards, insurances, etc... Everything was starting to feel slightly overwhelming. I started panicking about what would happen if I forgot to inform someone about my change of address. I was really starting to spiral out of control when I stopped myself and thought: Hakuna Matata!

Honestly, this isn't a joke at all, the Lion King song just popped into my head. I just kept hearing the words:

"Hakuna Matata, what a wonderful phrase, Hakuna Matata, ain't no passing craze, it means no worries, for the rest of your days. It's our problem-free philosophy, Hakuna Matata"

Now there's a few reasons why I would think of this, and one being that I LOVE the Lion King, but mostly it's because that is exactly the approach I need to start taking in my life. I'm not saying I need to start living a completely care-free life where I ignore my responsibilities and eat bugs. But I need to stop stressing over certain things. I'm such an obsessive, perfectionist that I have to control everything in my life when really there's no point because life is unpredictable and that is a good thing!

I think I just need to go with the flow a bit more and trust that things will work out and perhaps trust in God too. Trust that my life will turn out well and that things happen for a reason. What's the point in thinking: Oh but if I leave the UK and declare myself as non-resident does that mean I lose any advantages if I decide to return? etc....

I mean, that's a lot of IFs!!

To be honest, I'm no where near where I thought I would be ten years ago when I was projecting myself into the future. But I'm not sure that's necessarily a bad thing!?

I still have a very clear picture of what I would like in the long run and the direction I'd like my life to take but overall I just want to be happy and I'm open to whatever opportunities life provides me with.