There is no doubt about it. Lupus sucks donkey balls. Hair loss and skin lesions are only the MINOR issues. Sure, those are the things that others see and may be the ONLY reminders to people around me that I am sick. But as horrible as they are, they really are just annoyances in the overall scheme of the illness.
The REAL issues are the ones that nobody sees. The joint pain, the neck pain, the headaches, the incredible fatigue, the BRAIN FOG…OMG, the brain fog! The frustration that I can’t do what I want or remember what it is I wanted to do. The frustration and…shit, I can’t remember the word. Give me a second here. Ummmm….the….the…dread? Sure, we’ll go with ‘dread’ because it is close enough. The frustration and the dread….no, that’s not it. The
shame guilt depression DESPAIR (I literally just went to Thesaurus.com to find that word)! The frustration and despair I feel every time I realize that I can’t do all the things I want to do. Fuck…the embarrassment of realizing that I just mentioned that a few sentences ago and didn’t remember that. The constant knowing that Lupus affects EVERY system in my body. Thinking about irreversible lung damage with every cough. Will every twinge in my chest turn into a heart attack? The FEAR that my illness will progress even more.
I am not afraid THAT this disease will claim my life. In fact, I have pretty much come to terms with the idea that it will some day. What I am afraid of is HOW it will claim my life. I won’t be feeling terrific one day and be gone the next. I am convinced my death will be a slow and painful one.
So, how the hell is this disease a BLESSING? How can I possibly look on the bright side here?
For starters, I have to. If I constantly obsess over the crap that has been handed to me or wonder if I did something to cause this (if only I didn’t go back to school, maybe I wouldn’t have been so stressed and that Lupus gene could have stayed quietly tucked away in my body, never to be seen), and never look for the blessings that came from this, I would simply give up. I would deprive myself, my family, my friends, and my Father in Heaven of all the good I have to offer (even if my offerings have to come in smaller doses now because I am feeling warn out). And the fact of the matter is that there IS good in this diagnosis. I have to really look for it and I am sure others around me don’t always see it the way I do but the good is there.
Perspective. I NOW understand that sweating the small stuff is a total waste of time. I also see how things that I used to see as big really are actually small in the over all scheme of things.
Self-Forgiveness. When I do things, I DO THINGS. Go big or stay home is my motto. If I am going to do something, I am going to do it right, damnit. Unfortunately, my way of having to do things perfectly causes stress and exertion and Lupus will jump all over that shit! Although I still beat myself up for not having the physical ability to do things perfectly, I am constantly reminding myself that it is out of necessity, not laziness, that I can’t do things the way I used to.
Self-Care. Call it selfishness if you want but I need to come first. As a wife, mother, sister, aunt, niece, daughter-in-law, sister-in-law, friend, EMT, EMS Captain, lover of animals and wanter of making the world a better place, this is THE MOST DIFFICULT gift for me to accept. Luckily for me, it is becoming easier for me to 1) believe that I AM important enough to put my needs first at times and 2) remember that if I put myself at risk, I won’t be available to help others and 3) rest without feeling guilty about it.
I don’t answer the phone when it rings if I don’t want to (and yes, I hear the phone ringing now. If it is you calling me, I am choosing to ignore it because I come first today). I say things like, “I am sorry but I won’t plan a family get-together at my house.” I still feel bad that I am letting others down and I hate that although people say they understand, the look of disappointment and frustration in their faces tell me that they will NEVER understand unless they have Lupus. Regardless, I am now able to say “no” when I couldn’t before. I also realize that when I say “no” to people, it is up to THEM, not me to handle that. I took care of me, now you can take care of you.
I spend a lot of time resting now. My husband wakes me up every day with my coffee, my meds, and sometimes breakfast. I spend most of my day propped up in my bed with my laptop, coffee, TV, and cross-stitching. I relax. A LOT. If I feel like it (and ONLY if I feel like it), I do some chores and run some errands. I go on ambulance calls when my body can handle it. I pamper myself and I allow my husband to pamper me.
Appreciation For My Family. And by “family” I mean my husband and my children. This goes back to Perspective. I come first (because I have to), my husband and children come second. If I have the physical and mental energy for the rest of the world, they all will come third, fourth, and so on. But if I don’t? I still love you. I still want good things to happen for you but sorry, you didn’t make the cut. I only have so much to give and I will give to me and the wing-nuts living under my roof that either put a ring on my finger or slid out of my vagina first. End of discussion. Why? Because when Lupus finally does take me away from this place, my husband and my children can say things like, “God, she was such hard work. She was bitchy, sometimes selfish, and totally neurotic but she loved and appreciated the fuck out of us!” And THAT is really all that matters to me.