Under My Skin

Monday is a big day for me. A significant day. A day that will set off a chain of events, and I don't know where it will lead me. I admit, I'm rather nervous about it.

On Monday, at around 3pm, I will have blood taken. That blood will be couriered to Germany and, at a cost to me of about $900, tested for Lyme Disease and select co-infections. 

I don't know if I'll test positive. I'm not even certain if I want to, or not. If I do have Lyme Disease, I feel hopeful that with a year or two of treatment, my health could improve dramatically. I could even achieve my dream of, by the time that I turn 32, being able to both work part time again, and have coffee with a friend without feeling like death afterwards. That would be beyond wonderful. And maybe, just maybe, I'd get the chance to meet someone, to get married and have a child. I'm aware that while I remain as sick as I am, the odds of that happening are slim.

However, there is a catch. 

Treatment for Chronic Lyme Disease is expensive. From what I've heard from others being treated, it can cost up to $15, 000 a year. Money I do not have. And it's harsh on the body. In many cases, a patient treated for Chronic Lyme Disease will get a lot sicker, before they get better. It has been compared to going through chemotherapy, but instead of killing cancer cells, you're killing the Lyme parasites that have taken over your body. Saying that, I'd rather kill them, even if doing so puts me through hell, because the alternative is that they could kill me.

Lyme Disease is a controversial illness. Some doctors don't even seem to want to believe that Chronic Lyme Disease exists. But it does. Many doctors in Australia insist that we don't have Lyme Disease here. But we do. 

If I do have Lyme Disease I probably got it in Europe. That helps, when it comes to getting doctors to believe that you have it. Thankfully I have an amazing Lyme literate doctor, who is also my specialist for ME/CFS. 

Since I was a teenager, I had aches and pains, and needed a bit more sleep than other people seemed to. Those aches and pains got gradually worse over the years, but I was still able to both study full time and work part time, as well as having a social life, going to the gym and attending dance classes. I now know that this could have been a sign of the connective tissue disease that I have been diagnosed with &/or ME/CFS. Things changed in 2007. 

I lived in London 2006-2007, and before returning home, I packed up my backpack and spent three months travelling around Europe. A few weeks into my travels, I got very sick, with what I thought was a chest infection. It lasted for about a month before I started feeling a bit better again, but I got so sick that I took myself to Accident & Emergency in Bruges about 3 weeks in. There, they told me, that if it's a chest infection it looks like it's on it's way out. I never noticed a 'bullseye' rash, associated with Lyme Disease, but around 50% of people affected don't get one. I now believe, that if I do have Lyme Disease, that is when I got it. The 'chest infection' returned a number of times over the next two years, and my health declined dramatically. By 2009, though I was still attending dance classes a couple of times a week, I could not work more than 3-4hours before I became so tired that I could barely function. A year later, I was forced to stop working, studying & exercising altogether.

If I don't have Lyme Disease, the way forward becomes a little more tricky, and the light of hope for effective treatment a little dimmer, but I won't give up. Nor will I base all my hope on getting better. There is light, love purpose and hope to be found today. I will continue to work towards making my dream of Caribbean Pink become a reality, enjoy & appreciate the incredible people that I have the pleasure of having in my life, and focus on the things that I can do, rather than what I cannot.

Whether or not the level of disability that I am experiencing is due to Chronic Lyme Disease, I will have an answer in the next few weeks. Results are often emailed through within a fortnight of the day that the blood is taken & sent off. At the latest, I will find out at my specialist appointment on September 18th. That's 26 days away. Let the countdown begin!



If you are at all interested in finding out more about Chronic Lyme Disease, and the difficulty in getting treatment due to political and economic issues, please watch the documentary Under Our Skin. It is based in the US, but is still relevant for people suffering from Lyme Disease here in Australia.