Last week I “came out” to you that I suffer from Lupus and told you all a little bit of my background. Today I thought I’d share more about living with Lupus. I hope those of you who are following along will share your stories as well. The more people who learn about this disease and understand it the better.
What is a Lupus Flare?
It’s ironic for me that I’ve been having a “flare” for the last two weeks, just in time for awareness month. What is a flare? For everyone it’s different, but for me it means that a bunch of my symptoms are intensified while it’s happening. The flare can be triggered by lots of things, usually stress is the main culprit for me, and there is no set amount of time it will last. This time I know it’s a combination of stress and a sinus infection. Usually if I get ill a flare isn’t far behind. One of the problems is between Lupus and the drugs I take to control it my immune system is suppressed and that translates into getting sick a lot.
Living with a Flare
How does the flare affect my day-to-day living? Usually it slows me down-a lot! The pain in my joints intensifies, I can run a low grade fever, and I am exhausted and want to sleep. Sometimes my brain feels “cloudy” and it is hard to think straight. I have been experiencing the brain “cloud” this time. I dread it since it makes it difficult to work, write and even to read–like an enormous on-going brain fart. All of a sudden things just don’t make sense, even if they did yesterday. A document I have created a hundred times can seem impossible for me to do during a flare. It also scares me the most, and I worry that one of these times it will stay with me and not go away when the flare passes.
Another issue is increased pain and stiffness. My fingers get swollen and painful and the joints lock up on me while I’m typing. I can’t sit for long periods and getting up and walking around the house or taking the dogs for a walk definitely helps as long as I don’t over do it. I’m trying to stay more active, but when I’m in a flare I dread most of that. The trick is to try to stay active though, and it does alleviate some of the pain but it takes a lot of self-motivation to keep at it.
What Can We do to Help?
On the Lupus.org website there is loads of information about treatments, living with it, support, and importantly spreading the word. The more people who are aware the more understanding there will be for those who suffer, as with any disease, awareness is one of the most important aspects.
If you can POP today – Put on Purple and help spread the word! I encourage you to tell your story if you are suffering even if it is just to a close friend. If you have questions about any of these posts you can comment here or contact me via any of the options on my contact page.