Felicia has been living life as a Lupie for nine years now. Albeit not an easy feat, she’s intent on kicking Lupus’ butt.
So how is life as a Lupie?
It’s hard, that’s the honest truth. Lupus takes the fight out of you. There are some things I will never do again, like sit outside in the sun. It’s hard knowing all the things you can’t do. Having this condition is hard because people don’t understand it. They don’t understand how difficult and debilitating lupus is. They think you can just take a nap and get over it. But the fatigue is something outwordly. The chronic pain leads to tiredness. Your body is constantly battling itself, which exhausts you and makes it difficult to sleep. I also suffer from insomnia which exacerbates the situation.
How do you know when a flare is imminent?
When I sense a flare is coming on, I get a general feeling of being unwell. I think as a Lupie I become conscious that my ability to cope is just not working. I start to get increasingly tired and pained. I get insomnia, chest pains, achiness in my joints, a dry cough that doesn’t go away and the feeling that I’m catching the cold. This can go on for as long as I refuse to acknowledge I just need to stop whatever I’m doing and pay attention to my body. I also get brain fog. This makes it hard to focus and be an active part of conversation and interaction.
I’ve learned that pushing through the pain doesn’t help, in the end I do more damage than good. So I have mastered the art of saying no to people, to conversation and responsibilities. When Lupus comes knocking, I answer. This does not sit well with people who seem to think you’re just faking, you don’t answer the phone, you’re being evasive, but I can handle it. I know I’m trying to prolong my life and it’s worth a few people being unhappy with me. During these times I text, even with my husband who is sitting with me. Talking is too much work so we text each other. I’ve learnt to just go to bed and stay there because sometimes even turning over in bed hurts, so I just lie down and let my body try to calm itself down. Sometimes I feel like I’m in a constant state of either being in pain or being tired.
This sounds so familiar. My sister hated it when people told her ‘you don’t look sick’. Her response was always I tell y’all it’s not how I look its how I feel. What do people say to you that irks you the most during a flare up?
When I’m having a flare please don’t tell me to take a nap, it won’t help, and it’s condescending to assume you’re an expert on a condition you’ve never had. Just wish me well and thank God it’s me and not you, that’s good enough.