When I got my diagnostic, it felt as if my boat capsized. I had been feeling down for over a year.
Before that, I was told that I was depressed, and it sure felt like it. No energy, loss of hair, dark thoughts, piling up pounds while I was never snacking, I was a subbing teacher for pilates classes at the local gym and I was biking to work. None of these made sense.
I woke up tired and went to bed exhausted. I was not happy, and I was physically hurting. Calves like stones, pounding headaches, serious memory loss…
I did not tolerate the Australian sun and would wear rashes on my face all year round, with only weeks of recess. Then I got thyroid problems and they thought it was the key. Months of painful and costly analyses later showed that there was nothing to be fixed there.
Anyway. When I finally got diagnosed, I realized that all this time when I thought I wanted to put a name on my tiredness and my fake-looking symptoms, I was lying to myself. I wanted to be cured, I didn’t need to know what I had: I just needed the doctors to put a name on my disease so that it would come with a list of pills. And a manual for an easy fix.
Well, ironically enough, I got tested for the disease while in the USA but it came back negative. I guess my doctor got a good hunch and I was already starting it. I also have published on Lupus in the past, with my former boss Patrick and a medic research team from Yale.
So I knew from day one that there is no cure. I also knew that the disease ranges from a simple skin bother to a life-threatening condition. Which one would be mine? I have a truly beloved husband, whom I’ve shared half of my life with now, and my entire grown up life. I have two little kids who need a lot of energy, no a lazy-‘cause-hurting, always-on-the-couch-with-a headache-mom.
So my life capsized just like one of these little 420. You see the signs and know that might happen, and all of a sudden you’re in the water! And like these funny little boats, if you react quickly enough, you can turn around pretty easily. Just push through, you get a bruise on your arm but you can breathe again. And in no time you’re back on your way. Although I have a rather severe form of Lupus, I am very fortunate to also have the kind that works with flares and remissions episodes. I’m mostly ok, and only sometimes really bad.
My doctors are great and found me drugs that not only help me with the symptoms but also don’t have any side effect. Another wonder presented to you by medical research! I have resume attending Yoga classes, and teach more pilates classes to keep my muscles strong and slow down nerve damage. I’ve learned to stay home and go back to bed when I need to.
Nicolas is a champ and helps me to get through anything. Talking through what’s happening, being a great dad and posing as the family chauffeur since we arrived in Australia. I didn’t like driving a stick on the left before, but now that I’ve lost my deep-vision, I’m even a worse driver and a potential liability on the road. Nico deals with my students when I have headaches or worse and I’m stuck in bed.
When I’m not sick, I feel fine. When I’m sick, I’m grateful to know remission will come. I’ve read about Lupus patients who have been in remission for 15 years and I’m hoping to become one of them.
Autoimmune diseases are really cruel ones. Attacking your own body is not cool, and no fun. Having two friends affected by multiple sclerosis, I think a lot about MS patients. While some go through much-welcome remission phases like I do with my Lupus, others only go worse gradually. But with time, it always gets worse for both categories. They cannot turn their boat back up, or not that easily anyway. But researchers make serious progress on auto-immune disease these days. Fancy a donation? MS is a great research cause… Just saying.
