There are days when you have great energy and minimal pain, and then a flare pops up and changes everything. Your body lets you know about parts you didn’t know existed, and the only reason you found them is because they now hurt like mad. Recently, my body has gone into full rebellion, including my ankles, hips, knees and back. It has been a challenge to talk and take deep breaths. Just a typical day in the life of a lupus warrior.
I have shared my entire journey via social media, from diagnosis to present day. Sharing my story has really helped those around me understand lupus a lot better. However, there are still those who think they understand lupus pain because they once sprained their ankle.
I live in Thailand and the kitchens here are a joke by American standards. Most people do not cook at home, so the fact that I have built-in burners means I have a killer kitchen, at least by Thai standards. Perspective is everything, and pain definitely will change your perspective.
I never in a million years would have thought a comment about a kitchen would have prompted some of the comments I received after I posted a question asking which other countries had large kitchens, like they do in America. One comment was disappointing and quite condescending. It basically said if I wanted an American kitchen, I should have stayed in America, and that I couldn’t come to another country expecting my country’s standards. There are many homes here that actually advertise a “western kitchen.” However, my question was not about having American expectations. The question was about pain management, let me explain.
When you are not a citizen of a country, they require you to do certain things to remain within their borders. Thailand has a rule that says you must leave the country every 60 days. To comply with that rule, whether I am feeling well or not, I go every 60 days. This time, I was in the middle of a flare and had to board a plane to a strange city. My question about another country with large kitchens came because both my visa and my lease expire in April. I need to figure out if I am going to lease elsewhere within the country and still be forced to leave every 60 days, or if I can head to a country that offers a visa with a longer stay (and a potentially larger kitchen.)
The reason for wanting a larger kitchen is every move I made was painful, making it difficult to cook in a smaller kitchen. I can guarantee you that when I chop carrots about half of them will be on the floor. Standing after sitting for a while results in screaming hips and an angry back. Often I waddle across the room because ankles bending at the joints can cause tears. Walking from the dining area back to the kitchen just to chop is often the difference between eating and deciding it really isn’t worth the extra pain.
I smile when people say “If I can do it, you can do it.” I often wonder if I’m too positive, because people assume I am better than I am, and they feel as if they can relate to what I feel. I save my meltdowns and my tears for my family, so most people see me in what is perceived as a great mood.
I have to make decisions based on not just where I can get good healthcare, but also on how to make sure I experience minimal pain. Just because you can do it, does not mean I can do it. Those five or six steps may be easy for you, but my hips, knees, back and ankles are not happy. I’ve learned not to always talk about my pain, but that does not mean the pain does not exist. Traveling every 60 days results in days of brain fog. During my trip to Malaysia, I face-planted partly because of the fact that my body was riddled with pain, and because I was trying to move too fast trying to get the embassy so I could be admitted back into the country.
If you are a healthy person reading this, please know that the sprained ankle you once had is not an accurate comparison to what I feel. I’ve had sprained ankles, and I have lupus. Please do not diminish my pain as if you can relate to by a sprained ankle. Unless you are dealing with this disease, you cannot relate.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.