For over a year now, it seems I have only been able to complete about 60% of my obligations. I mainly blame the symptoms of nausea and vomiting and severe fatigue, especially mental fatigue. These symptoms also take away from the quality time I have to offer my loved ones. Of course, the extra financial stresses from medical expenses create another strain on taking care of business.
Those of us living with chronic illnesses, like lupus, are too familiar with dealing with these issues. This is part of our job, taking care of our health. It gets costly. It is physically draining for anybody, much less, somebody whose symptoms are triggered by stressful situations. I feel like I need to meditate all day, to stay away from stress, and that isn't possible. Which gets depressing.
If it is not one thing it is another.
I am sick of explaining this to people. That is, the people that still ask about me.
Most of those people are doctors which I pay.
I want to be strong enough to fight for a cure. Although I don’t think I will try to form a team for a lupus walk this year. I am tired of feeling like a failure. I have been unable to rally any new members or donors to my team for quite a few years. I will still attempt to attend our local lupus walks. I am sure I can find another team who would welcome members because my problem is not that uncommon.
It is easier to speak out for others than for myself. I am certain that is a common feeling. I try to imagine what I would do if my best friend were in my situation. I would like to think I would build a team for my best friend. My problem is my best friend is my husband and he supports me in so many other ways I cannot be disappointed if he doesn't try to build a team. The one friend I have in this area, who easily qualifies as my closest friend, is trying to juggle her own life and also supports me in many other ways. So as much as I get frustrated that there is nobody in my life who will take the time to help me build a team, I also understand. And there are other ways to spread awareness.
For example, using social media and making personal requests for friends to share lupus awareness information and the like. If you have friends who do not use social medial try to let them know you would love to hear about them talking about lupus with anybody. Even their mail carrier. It is easy to show support, without giving too much time or energy.
I also think it is important for anybody living with a chronic illness to remember how we were when we were healthier. As much as I want people to understand how I feel, I don’t want them to experience it (not even the unbelievers). However, in my past, I have experienced what it was like to be working full-time, going to school part-time, while raising a child by myself. I know I would have joined a walk if I could afford it. But it was rare back then that I could afford anything extra. So I cannot say for certain what I would do if the situation was turned around. The only thing I do know for certain is I would care, and I would love it if I had simple ways to show it to anybody struggling.
I have to believe that is a common feeling as well. People care. The bottom line here if for those of us who are fighting illnesses to be aware that we have a much easier time understanding where the healthy person is coming from than the healthy person to understand what we are going through. Share your experiences with anybody who wants to listen when you can.
And lastly I want to share one of my favorite ways for people to show support; send a lupus warrior(s) a photo with the #Lhandsign*. The #Lhandsign Flash Mob Freeze* was made in April of 2013, and has become quite popular within the lupus community. A simple picture of yourself and the #Lhandsign could make you somebody’s hero. Do you want to be a hero? It is easier than you think.