I decided yesterday; I am going to name my autoimmune. For those of you thinking this is strange, bear with me. I do not know about you but having to say I cannot make it, I am sick, or I wish I could help you but my autoimmune just gets old. Especially when a flare lasts for months. It just makes me feel worse saying the words out loud! I mean let’s face it, autoimmune is a lifestyle and not necessarily a flattering one.
I feel like calling it by a name feels less invasive. It gives it ownership and presence but rolls off the tongue in a much softer way. I shared in a blog post, My Autoimmune Journey, that my autoimmune was high maintenance. Well, Develin to me sounds like a high maintenance, used to the finer things in life kind of name. A woman who knows what she wants, and she is not afraid to go after it. It is a beautiful and strong name just make sure you stay on her good side! So, there you go, Develin it is!
I consider my autoimmune to be high maintenance because it takes over. My focus shifts from myself to my autoimmune. Sometimes I cannot even tell a difference, am I just my autoimmune? Is this what my life has come to?? The true answer to that is NO, we are not just our autoimmune! We all have many layers, some good and some bad. Well, let us just say this one leans a bit to the not so great side!
Develin is in town, so I am in an autoimmune flare right now. This one has been a heavy hitter and lasted four months so far. I have days where I think I am feeling better and am going to turn the corner and say, “Bye Felicia.” Err “Bye Develin.” But this one, she keeps me in her grasp. I have been patient and let it have its time, now I am over it already! I am ready to get back to the more active me. I cannot help but feel at times that I am being punished, even though I know that is not the case, those feelings can arise.
I tend to go inward a bit when I am in a flare. It is something that no matter how much they love you; non-autoimmune people cannot quite understand. The loneliness and isolation that comes with a body that does not want to work right can be quite heavy at times. I try and put on a happy face and act like Develin is not there, but she is. I will lay in my bed in the morning with my eyes still closed and think, this literally is the best I will feel all day. I really hate that because my day is just starting.
I said before that Develin is high maintenance, and I meant it. When I am in a flare, it is all hands-on deck. I have my bag of tricks, necessaries and rituals I put into full force. I sometimes think my family watches me and thinks I am a bit coo coo for Coco Puffs; but that is ok. It is a necessary if I want to get to feeling better.
If I am being honest, I must admit, I get scared. Develin has all the power and the control. She can drop me to my knees if she wants to. I try to put on a brave face but deep down I am crying. I resent that she has the control over me that she does. For the time being I am stuck and must wait it out. Sometimes I can be more patient than others.
I spend a lot of time hiding how I really feel. I get sick of myself so I can only imagine how my family must feel. No one wants to be around a sick person all the time, it can be a real Debbie Downer or should I say Develin Downer! I think the key to autoimmune is learning to fall into it. You must give yourself some grace, sometimes a lot of grace and know that this too shall pass. Use this time to nurture yourself. If you need to cry, then cry. If you need to laugh, then laugh.
Sometimes I will put music on in my kitchen when I am alone and just lightly move whatever part of my body I can. I make sure no one is around because it can look a bit funny just moving one leg or one arm and a hip. Remember the music video to the song Thriller, when the zombies begin to dance, there is your visual of me in the kitchen. I am pretty certain my three little old dogs are thinking, “Hmmm what exactly is mom trying to do.” I think music reaches our soul and that is someplace I assure you that Develin is not hanging out.
Cheers to Recovery!