We are back!

It has almost been a whole year since my last post, the reason being I did not want my blog to be something that people read and become upset or feel pity for me – I have decided to start writing blog posts again and hopefully keep you all updated on my life.

So, since this time last year my health has declined quite rapidly. It has since moved into my spine, full legs and bones. There are many other aspects to my health – mentally I am much better and have such a positive outlook on life, it has taken over 6 years for me to come to the realisation that I do not have control over my life and to just take each day at a time.

Although it can be very lonely to live with my health. The 3 am mornings when I am so exhausted but unable to sleep from the flare ups in pain I lie there hoping the flare up will end soon, I do not want to make any noise to wake the rest of the family, I do not have anyone to talk to because the rest of the world is asleep, it is then in those moments you truly need someone as nobody I know and talk to can fully understand and has the same issues that I face on the daily.

Friends come and go and some even say to you “you are so lucky you get special considerations for VCE” and “it’s not fair that you get special considerations” although these idiotic people would have no idea of the reality of my life; the inability to get to school because of the pain and pure exhaustion, the stress of missing class and having teachers expectations set way too high, the doctors’ appointments, the heartache of doctors giving up on you, the stresses of being in so much pain you are unable to sleep. Yet again, my family has been by my side through it all. In the past 6 months, I have been rushed to emergency twice with one time me being admitted for a full week to tests medications with no results, but plenty of side effects.

I also have had many tests done since the last time I posted a blog; some of the important ones are multiple sclerosis, Fabry disease and Lyme disease. Blood tests, medications, intravenous drips, constant monitoring while on some of the medication as some are quite dangerous.