I've had the effects of Ross River Fever and Glandular Fever for over 10 years and although there has been some improvement, I'm nowhere near the health I was before I contracted them.
When you're like this, suffering for an extended period, the health people term it chronic fatigue syndrome, and sadly, many people still think it's a make-believe illness.
My family has a tendency to contract auto-immune diseases and I'm not alone in having this illness. I'm not even the worst affected by it. Although we've been told it isn't genetic, there is a propensity for some genetic makeups to exhibit these illnesses more readily.
It's a debilitating thing because there isn't a cure. You have to manage it. You have to learn not to over do it (I'm still working on that!). You have to miss out on so many things you would have enjoyed if healthy (e.g. sports, activities, events). You've lost your identity - you aren't who you used to be and you can't do what you used to do. And the worst thing is that you don't look sick. You look exactly the same as before.
It's difficult for people to understand that you have an illness when you aren't fading away before them, or showing some other physical sign.
It's a difficult disease to understand and to live with.
I've found a lot of help through this website (http://www.cfidsselfhelp.org/) and the online courses and groups.
It's very easy to isolate yourself when you're too exhausted to function in life, this online group allows you to have support when you can cope with it.
I also read Leigh Hatcher's book I'm Not Crazy, Just A Little Unwell, which was great at making me realise I wasn't insane.
I don't like talking about illness. It seems to put a dampener on everyone as soon as you bring it up.
On the other hand, I think if we don't start talking about illness, people will never be comfortable with them, and a stigma will always be attached.
So I'm going to start the conversation with a couple of things that affect me. Feel free to start a conversation about illness if you'd like to. I'm happy to respond.
I am not a medical person. I have no skills in healing or for advising. I'm just sharing what I have. If you have something similar, or need advice or diagnosis, please seek medical advice.
This is a skin condition which I've had all my life but only found out the name for it in recent years.
It's hideously awful, completely embarrassing and I hate it but I'm going to talk about it.
It's a condition where the the pores in your skin get blocked up, leading to great big pus-filled boil-like pimples that hurt like blazes. They often form deep inside so you don't know they're there until they start throbbing and then hit the surface.
It's not a pimple, it's so much worse. It can blow up to a throbbing head that's red to look at, but underneath it's filled with pus and when it bursts, or vanishes, you are left with a scar, or maybe an open crater.
It's common in groins and armpits but can be elsewhere - between your breasts, around your neck, on your face.
When they're throbbing, I get relief from a hot compress pressed on it. When they're a god-awful wound, I keep them clean and don't let anything rub on then.
There isn't a cure, only management.
You need to be tough to survive this - not just because it hurts and it's unsightly, but for some reason people seem to think they need to point out the sores and ask why you aren't doing something for them. Quite simply, there is nothing you can do.
I contracted Ross River Fever in 2005 in Condobolin. There was quite an outbreak of it with about 20 people catching it at about the same time.
What is interesting about Ross River Fever is that there are a bunch of common symptoms (e.g. fatigue, flu-like symptoms, pain) but everyone seems to have specific things that really bother them (e.g. some may have almost unbearable pain, where someone else may not be able to lift their head off the pillow, and another may just be excessively tired and sleep 12 hours but be okay the rest of the time).
I fell somewhere between all three examples. I had pain that moved around my body so I thought I was insane. One moment my toe would be throbbing, then it would be a knuckle on my left hand, then my right wrist. My left hip always had a dull ache. Some days I could sleep 12 hours and function for 8 hours at work, other days I could not lift my head off the pillow no matter how hard I tried.
Add to these, alcohol started to affect me badly. One sip and I'd have a hangover from hell. Sometimes I'd be ill from one sip.
It took an age for a diagnosis. Luckily I was working with a doctor and he knew I wasn't right. Even luckier, a good friend knew what I had and mentioned it, so the doctor went looking. I had Ross River Fever and Glandular Fever.
I quit my new job because I had no sick leave and I couldn't function. And then started the long recovery.
When I moved to Condo in 1999, a woman I met told me about contracting Ross River some years before that and she went on about it. It stuck in my mind. It sounded awful. Little did I know that I'd find out exactly how awful it is.