In the movies the hero always saves the day, just in the nick of time. Sure the hero faces many obstacles and there is some doubt about a successful outcome, but in the end the hero comes through.
Now what makes the person a hero will vary, it depends on the issues at hand. My hero sometimes doesn’t make it in time. To save the burning food, or spilled cup. He tries, but let’s face it Beloved is no Flash Gordon. He also will never leap tall building in a single bound or fly.
But Beloved is my hero, one of em anyway. It’s not easy living with a stubborn person. Really not easy living with a stubborn person who happens to have lupus. It can be down right near impossible to live with a person who is not only stubborn and has lupus but refuses to follow the rules. And yet Beloved does this all with a smile on his face.
When he’s around there is less chance of burnt food because he will do the cooking and the washing up. As for cleaning up spill Some? You better believe he does that when he’s here. He also does whatever else needs doing, even if I insist I can manage it on my own when we both know there is no way I’m getting it done because of lupus.
So they will probably never make a movie about the type of hero that Beloved is. That’s okay, he knows he is my hero just by being himself.
The problem with a mostly invisible illness such as lupus is that you either end up living a lie to try to be normal or you feel like you are being pulled into a strong undertow.
For me, it seems its best to appear normal to the rest of the wo world. I don’t know when I made this decision, I only know that I’ve spent a good portion Of my life ignoring fevers, pains, swelling just to appear the same as healthy people. I’ve stayed away from hospitals just to appear normal. I’ve stayed away as if to prove to myself I’m okay.
when you know you will be taking drugs like chemo, anti-rejections and steroids for your life it’s overwhelming. So I’ve streamlined meds, opting for quality rather than quantity of life. An easy decision for me, not so much for those who love me and care about me.
THe problem with having an invisible illness and trying to appear healthy and normal is that it’s almost a full-time job. Make up to hide a rash if lupus is being truly dreadful. Artfully arranged hair or hats and scarves to hide thinning hair. Clothes to hide the needle marks and what have you. Just add a huge dash of stubbornness and a heaping of pushing beyond wha gone should and you are good to go.
I know this because I’ve lived this way for a long time. It’s exhausting and yet I do it because it’s important to be seen as a person, not an illness. That’s my flawEd logic. Usually it works enough that most people don’t equate lupus with me because I don’t want to be my illness.
Lupus makes me feel weak, helpless, useless, hopeless and lost. So into what I ca to pretend and fool lupus into not knowing how it affects me. Imagine my surprise when after a day where lupus was winning this battle Beloved held my hand at the hospital and told me that I was some kind of superhero. In his eyes I wear a cape, tights and whatever else. I do battle with the evil lupus and still find time for him and other pursuits of life. He told me just watching me can be tiring, and yet I d it and still find a way to do things he wants to.
I guess my cape and tights etc. are like my illness, invisible. Hopefully I never forget that least I head out the house in my superhero outfit and no clothing! 😉