Almost a year ago now I wrote about the day of my diagnosis and made it sound oh so dramatic… which in my defence at that point it felt that way. It turns out last year I had to have two diagnosis days…..
Diagnosis one was Ross River fever – if you ever needed an example of how the smallest thing can create the biggest issues this is the disease for you! It starts with one damn infection carrying mosquito deciding that you are their target. They bite, you slap then itch and briefly regret not applying repellent and go about your business. Until 2 weeks later when you get achy and tired, not ‘its been a busy week’ kind of tired but the kind of exhaustion where lifting your eyelids to wake up is tiring enough to need a nap to recover from. And not achy like yesterday’s gym workout was a tough one, but achy like walking unbearably hurts, holding things hurts, hell even breathing hurts. The combination of the ache and exhaustion floors you, sometimes literally. Living in a two-story townhouse saw me making the decision to sleep on the couch at times because walking up stairs was just not a viable option!
Ross River Fever can last up to 12 months, I was one of the ‘luckier’ people, I was able to work for the most part, with a compassionate employer I was able to work for as long as I could function and then go home and fall into bed (or onto the couch pending the level of that day’s exhaustion). I became a pin cushion with consistent blood tests and best friends with my doctor – but all of this is somewhat bearable when there is a ‘get better’ date in sight. One day hanging out with my new bestie Dr Eugenie (legit her name) she informs me that I am not getting better and that she can’t help me anymore – I need a rheumatologist. Which leads us to…..
Diagnosis two. I was rushed through the public system as a high priority – which made the whole thing a little scary really. To find a space I am put into the Young Adults system and soon find myself sitting in the waiting area with teens in their high school uniforms – who I’m pretty sure are looking at me trying to figure out why I look so old or where my kid. After having a blood test that saw more blood taken out of my body than I even thought was possible without passing out and being told that I am ‘super puffy’ my new condition is Rheumatoid Arthritis.
If, like me, you know nothing about RA, here is my extremely layman’s description – you know how there are antibodies that attack infection in your body? With RA those antibodies get confused and start fighting all the healthy fluid around your joints. This results in you feeling sick, sore and run down all of the time – like when your body is actually fighting an infection, add the bonus points that because you are already fighting fake infection you are now more susceptible to real infection! Similar to Ross River, and while one doesn’t cause the other, from the reading I have done it seems lots of people end up with RA after RR – lucky us!
For someone who had a belief they were somewhat of a superhero and perhaps invincible it has been difficult to accept that I have been diagnosed with what is classed a ‘chronic illness’ and struggle to accept that potentially I will never feel completely well again.
We first trialled a drug called Methotrexate – which is literally low dose chemo (now that was confronting to be prescribed!) but it left me feeling drugged and fuzzy and in my best description to the doctor – just a whole heap dumber than I actually am! I was willing to choose living in pain over living in a fog. I was moved on to a drug called Arava, that for me was like a cure, but the stubbornness in me meant that I wanted it to have actually cured me, so in consultation with my doctor I stopped taking medication after six months of having 98% good days.
Within weeks I was welcoming back my old friends pain and exhaustion – in the same levels of when I first got sick, I think I had blocked out the memories of those days, so it was almost as shocking to my system as it was the first time round to be literally floored by fatigue.
I am now back on Arava (drug number two) and working on accepting that ‘like a cure’ has to be good enough for me, because I am lucky. Some people try every drug and treatment option available to them and still live with constant symptoms and no relief. It is hard to explain invisible illnesses to the people in your life both close friends and families and associates, it is hard to never be able to say a convincing yes when asked if you are ‘feeling all better now’. I personally did a lot of reading about what I had and how bad it could have been in the past 12 months and can’t say enough how lucky I am to have what seems to be a ‘lite’ version of RA.