There are many a thing that come up in the life of a Lupie. Symptoms come and go. The tell tale signs of your next flare can and will vary. Keeping a journal of them is the only way to truly keep track. There can no longer be a reliance upon ones memory alone. It, surely, will fail you. There will be times you do not recall what you were doing or that you had in fact already done things. It comes and goes, this fugue state of uncertainty. What does not leave you is the feeling that you are never entirely in control of yourself any longer.
I used to be a person of infinite patience. To rouse me into reply to another was nearly unheard of. Lupus took that from me, among other things. Now days it is my emotions that seem to be like loose stringed dogs. I pull at the strings, urgently trying to reel them in. The string snaps, a blink of an eye has passed, and the things which never would cross my lips, let alone my mind, are spewed out. The recipients are just as surprised as I. The trouble is that I had not spoken anything that was not true, yet everything that was best unsaid. Certainly best not said in such tones and force. What am I to do but apologize? The apology is lack due to the fact that I said nothing untrue, nothing that was of the past beyond trademark observations of the other. It is of no use. The other person almost always is unwilling to accept that it was not me, but my condition to blame. Though I rarely say such a thing as “I was not myself” or “Lupus reared it’s ugly head.” No, for these sound so much just an excuse to someone who knows Nothing of what it is to feel untethered by a disease you are at the mercy to.
Each of us will have symptoms that come, and symptoms that reoccur. Some we may have once a year, others once a day. The strange ones are the hardest to explain to ourselves or others. Not being able to eat because everything tastes like earwax. A metallic taste. A rash in your mouth from the same food or drink you had hundreds of times before. An itch that will not be sated. A worry that something is about to happen, that just will not leave you. The mental certainty that your doctor has given you a placebo. A sudden inability to speak. The severe pain in your hand that will not subside. An ache at the back of your head that feels as if someone has hit you with a 2×4 or baseball bat. Or the excruciating pain in your head that feels as if it is being smashed in and pushed out all at once. No memory of a conversation you had. Insomnia.Etc.
Perhaps the above my seem strange. Maybe you are familiar with one or two. Perhaps more. For me, each of the above are reoccurring symptoms. At this moment I am feeling the pain as if someone hit me in the back of my head and neck. It will increase and I will eventually turn to one of my many ice packs in order to get the pain to subside. If it continues for more than a day then my lower back starts hurting too. I get it every three weeks, sometimes more. My doctor has no answer as to why.
I read the stories of other Lupies who were cooking food for their families. Three times, their families inform them, they had asked the same questions. They go into an emotional fit, a small outburst. Then it’s finished. They have to rest. Their families understand, some say. Others, like me, are surrounded by people who are unwilling to realize that it is not us but the disease at play. It victimizes us double in these circumstances, regardless if our loved ones understand or not. To know that they can never know what to expect from you, and are perhaps always weary of you, is painful and frustrating. Especially so because we never know what to expect.
Yet there are a great number of Lupus Patients who read this and are baffled. Why? They do not experience such instances. At least, not to their knowledge.
My purpose is two fold; to be sure you understand you are not alone, and the urgency of keeping track of such things so that you are familiar with them, as is your doctor. You can not get help or know what needs attention unless you keep track of them. There are plenty of ways to do so. I had a journal, a nice one sent to me by one of the many companies trying to push new medicine on to us. That just didn’t work as I could not remember to write in it, let alone where I had placed it. Then I realized how much time I spent with my tablet. I tried to put in a note area for my symptoms. I couldn’t keep track. Then I decided to just note things in my tablet calendar. I almost always had it with me when I went some place, including the doctor’s. So I was sure to have the information. My trouble now is to find a way to get that information organized.
If you are a Lupie with the means to make such a program then please do. I would gladly spend a few dollars on such a thing. Calendar with headers in the date notes that synced up to a chart listing my symptoms to share with my doctor. Better still if it kept charts on frequency. A great idea, surely, that one of you could invest time into.