Not Letting Lupus Take Over Your Entire Life!

I know how difficult it can be to not let Lupus consume your entire life. I’ve said it before, and I’ll say it again. When you have one of those disease where you “don’t look sick”, it’s sometimes hard for other people to understand that you’re tired, or you’re not up for doing something with them, etc.

There are tons of things we need to do that occupies a lot of our time. For me, while I always do my best to be “normal”, I also have to sometimes convince myself to slow down and take it easy. If you’re anything like me, that in and of itself is one of the most difficult things to do.

If you’re like me, you’re probably a walking, talking pharmacy. Have you ever had a friend say something to you like “I have to take prednisone for “, and your response was something like “Oh, prednisone is an immunosuppressant drug that……..”? I’ve definitely done that. I’ve had plenty of people tell me I should be a nurse, a pharmacist, or even a doctor. Aside from the fact that I have no interest in being in school for a kabillion years….I also have no interest in being in hospitals for my career. I think I’ve seen more than my fair share of hospitals thus far, and who knows? There might be more to come.

Now that being said, I spend so much time on Lupus-related stuff, like sorting my medications into pill cases so I can take the correct medications quickly and easily, going to dialysis and them coming home and going to bed right after because I’m tired (hopefully that’ll subside after I’m done my home hemo training), the need to simply just rest…..the list goes on and on.

A couple of weeks ago, I was lying down watching TV. Out of the blue, something occurred to me. Aside from Lupus related stuff, what is it that I do to make ME happy? My “Lupus related activities” include going to dialysis/dialysis training, going to physiotherapy, going to massage therapy, and keeping up with all of my doctor’s appointments. When I’m not doing either of those things, I’m probably working on an online math course that I’m taking, working part time…and that’s about it. I’m taking the math course because I need it for university. I do slightly consider going to work something for “me”, because it gets me out of the house and allows me to socialize with people who aren’t doctors or nurses. But what is it that I have that is completely separate and 100% something that I want to do just for me?

Nothing.

I thought back to 2001. I graduated from high school and went on to college. I took chef training. Let me tell you, that was one of the best experiences of my life. I admit that in the long run, working in a hot and busy kitchen with little or no breaks, especially with my condition, just wasn’t for me. One of the Chefs I did co-op for told me that while I was a good cook, I should also consider working in the front of the house in the future (server, hostess…maybe even manager). I’ve always loved pastry, but didn’t have a positive pastry experience at co-op. The girl who was in charge of the pastry for that restaurant was very condescending, rude, and not at all helpful. Instead of showing me how to do something, she would just tell me to “do it”, and when I did it incorrectly, she would simply say “move over, I’LL do it”. She was a real downer and she hurt my feelings a lot. The worst part was that she wasn’t much older than me, so for her to be so rude and jaded at such a young age wasn’t very encouraging either.

So after a few years I went back to school and now I’m taking Human resources. Despite having such an unpleasant experience working in the pastry department of that restaurant, I still really enjoy pastry and baking. So that day last week, I decided to take a cake decorating class.

I’m starting with the beginner’s course as I haven’t done anything pastry/baking/decorating related in over 5 years. The course is once a week for four weeks. Each class is 3 hours long, and my first class is today! I’m pretty excited and I’m not sure what to expect. If I really like it, I’ll definitely go on to intermediate cake decorating, and then advanced. I also plan to take the other specialized courses including the Wedding Cakes course, Australian method, etc.

So, my point is this. I think it’s extremely important to have something in your life that’s just for YOU. It can be a weekly art class, a book club, volunteering, joining a gym…anything!