How I stay so optimistic ...

When diagnosed with any illness you have two options. Option one; feel like your life is over, be sad and let the illness take over your life and everything you once enjoyed or option two; look at the positives, focus on the things you can control and try your hardest to wake up every day with a smile on your face and remember 9 times out of 10 there are still worse things that could have happened.

Obviously, you are going to have days where its hard and you will be tired, emotional and just want it all to end and go away – this is normal and you need to remember that. Especially when you first get diagnosed as you are still discovering it all for yourself but there will become a point where taking medication and having your standard symptoms become the norm. and that is the point where you learn to accept this is your new life.  

I know it doesn’t make sense to most people but if I am sitting at work with a headache or my eyes start to hurt it is such a common response for coworkers to say “why don’t you just go home?” If I was to just go home every time I had pain or symptoms I would never be at work and that’s just it, you need to keep going. Yes there will be days when it would be so much easier to just call in sick, roll over and go back to sleep but you would be surprised mentally how much better you feel when you get up, get ready and go to work – yes you may be in pain but it is so much better for your mental health staying in constant contact with others and even just being around others vs. hibernating at home alone.

Another thing I find really helps is exercising. Now don’t get me wrong I’m not perfect and I certainly don’t train every day of the week but even if it is something simple like waking up half an hour earlier so you can go for a walk will do big things for your mental health. Not only does it help if you are on medication like steroids as it is highly important for us to stay active to try and combat some of the weight gain that naturally occurs from our medication it also helps clear your mind and feel good about yourself.

Lastly, think about your future, make some plans and a list of goals you would like to achieve. If you have other things to focus on and look forward to it helps take your mind off your everyday issues. It’s all about looking at the bigger picture in life and not forgetting how lucky we are to still be breathing and alive – although its hard it could always be worse. I am lucky to live in Australia with such a great healthcare system where although at the moment it seems like a struggle to get the medication right and actually find a drug that works, I am extremely lucky to live in a country where the government subsides a hell of a lot for me. So yes, it’s unfortunate that I have a disease that could potentially take my vision and is something I will never get rid of but when I have such a good support network with a great specialist, loving family and friends and a great healthcare system fighting for me to get better why wouldn’t I want to look at the positive side of life …

What it's like living with an invisible illness …

Throughout everyone’s life there will be times where you get “sick” and need to spend a few days in bed with the flu or if you are unlucky enough you may need to spend a few nights in your local hospital but for most that’s where it ends, you get better, go back to work and live your normal life. When living with a chronic illness it’s the opposite and probably one of the hardest things to explain to people as technically we never get better we just have days/weeks or months that are worse than others.

For example, waking up with a headache every day for me is the new normal, if i'm tired I’ve got no hope in reading emails at work and this new burning sensation in my forehead seems like it’s here to stay. We then have times where we will experience a relapse or flare which is when our medication decides it doesn’t want to play anymore and our symptoms flare up to a point that it makes it hard to do the day to day tasks and those are the times we need to accept the fact that going into hospital is probably the best place for us to be as if we don't do anything to settle it down its only going to get worse. At this point we will usually be given stronger medication, potentially have another MRI and have a million blood tests so then we can try new techniques to help calm down the flare and restart the process of controlling our immune system that has a mind of its own. This is where is gets confusing to most people as when we get out of hospital everyone assumes that we are 100% okay and back to normal but 9 times out of 10 this isn't the case - we are just well enough to go back to OUR normal.

I commonly refer to my condition as an invisible illness as to most people that’s what it is and it’s also really hard for most people to understand that even though we look fine we have days where we may actually be really struggling but we don’t have a choice other than putting on our happy faces and just carrying on. Whether you have an invisible illness yourself or know someone who does, it will be normal to find yourself saying you are okay or all better when people ask how you are because trying to explain what it’s really like is normally more confusing than the conversation is worth. It’s not that we are being rude or trying to palm you off when you ask but when living with an invisible illness the best way to live life it is to accept it is what it is and just deal with it. If we were to constantly mope around and look at all the negatives we would get nowhere so sometimes acting like we are okay (or what we consider normal) even on days when its actually a struggle is just what we need to do.

Everyone’s coping method is going to be different and trust me the further you get into your journey you will find what works best for you. I’ve found for me personally writing these blogs and hearing other people reach out and tell me their stories really helps as it makes me feel like i'm not alone in this world of the unknown…