I guess I should start off by telling you a little about me and what I'm about. It's pretty simple in my own mind but I've had numerous people tell me they just dont understand how I do it. I have a teenage girl who is the light of my life and lives with us, a husband that loves me and tries his best to be supportive in every way imaginable, a teenage son living with his father and stepson living with his mother, so life is good, at least in this regard. On the other hand I have my personal trials and tribulations, none of which are as horrible as they could be but aren't fun either. I'm living with SLE, or in layman's terms Lupus. In and of itself that's not always a life altering thing, mine however has been. This is far from a pity party, I dont want or need pity...however, some sense of kinship or understanding is always a welcomed thing. I guess now would be the appropriate time to explain what aspects of Lupus affect me enough to say it's life altering.
For starters I'd have to say the biggest most impacting aspect was and still is the photosensitivity. It alone drastically changed by ability to come and go as I pleased during daylight hours. Being allergic to sunlight devistated me in ways I am not able to explain fully. I went from being able to garden or lay out in the sun whenever I felt like it to not being able to go outside until dark. In a lot of ways it felt like a big part of who I was somehow cut away from me without warning. The sense of not even being in control of when and how I did things got the better of me and at times still does. Other aspects of the disease started chipping away at my resolve as well. Having the flu sucks no matter who you are, but repeatedly feeling like you have the flu for no apparent reason grates on a person after a while. The other impacting addition came later, vertigo... Lets rehash this, photosensitivity, flu symptoms right down to the fevers and severe joint pains and now vertigo. Talk about a mess. Vertigo presented it's own problems, I no longer feel safe attempting to drive my car much less being in control of anything large enough to kill innocent people. I joke about becoming a drunk so at least then I'll be giggling while the room spins instead of crying. For the longest time I felt utterly lost, pretty much helpless, that feeling comes and goes even now. I watched my daughter cry when I did and my husband try to hide the pain in his eyes everytime he had to help me do even the simplest of daily tasks. By this stage I'm sure you're wondering if there's any cure for any of this mess, afraid not. They treat the symptoms but have no cure for the cause. This is just my day to day life, I've come to accept that.
I'm still a smartass like I've always been and though this body is hindered greatly, I'm still the same old me I always was. I watch my daughter and live vicariously through her more times than not. This entire fiasco has changed her too. She worries over me incessently and mothers me often more than I have to mother her, which is funny to witness but it's also sad to me. She's growing up so fast because of things completely out of either of our control. Kicking and screaming "it's not fair" doesnt help, trust me I tried it already! Now you know at least some of who I am, I'll make a point to add more tomorrow but for now..sleep beckons.