Dealing with The Constant Change with Lupus

Dealing with The Constant Change with Lupus

This weekend was a whole new experience for me. Many of us with chronic disease try to fight for any independence possible. Whether it’s going to the store alone or indulging in our favorite hobby. I, for once, had to let go of all reservations and recognize assistance was the only option. For the first time, my husband pushed me in my wheelchair.

It wasn’t a rented or a temporary one. It’s actually mine, prescribed to me by my doctor, because I need it. When it showed up I was not sure how to feel. Should I be happy that I can get out more? Should I be ashamed that I need it? My feelings were all over. I am a thirty-four year old woman that looks healthy but can hardly walk/ stand for long periods. It’s not just Lupus that causes this issue. I also have Joint Hypermobilty Syndrome and Fibromyalgia. The combination makes it almost impossible to do much without pain.

I don’t want to get lost, I am grateful for my wheelchair. My point was more that I never thought it would get to needing one. I thought somehow I would get better. Getting pushed around in my neighborhood on my family walk made me so anxious. I kept thinking what if the neighbors see me? Or what of people don’t think I really need it? I don’t know why I even care. My kids were so happy to have me with them. Their smiles and nonstop talking helped calm me. They seemed so okay with seeing their mom being pushed in her wheelchair by their Daddy.

I realize I need to be more like my kids. They just want to go! They’re so resilient. Anytime I’m unable to do something because of Lupus or any of my chronic issues there is no hesitation. They don’t get upset, they don’t tell me they wish I was a “normal” mom. That’s me, I want that. I get upset. I am embarrassed.

It’s silly really, why should I be shameful of this? The lack of control is obvious. The ever changing symptoms are constant. Nobody would choose this. All the the adjustments you have to make, the relationships you loose, the dependence created. I’d rather just not go out. No walking equals no wheelchair which means no dependence.

You know what really happens though? I miss out. That day is forever gone. Wasted. I don’t get to enjoy the night air or hear my kids laugh. I miss out on life. I’ve tried to be tough through this. I have fought. I will continue to fight but I have been humbled in knowing it’s okay to need help. I lean on my loved ones and let them know how very much their support means to me.

I have a wheelchair. I need a wheelchair. I am not limited because of it, I am getting the chance to experience life in a whole new way. I am willing to make the adjustments needed in order for my quality of life to be at it’s best. Maybe it’s not what I thought it would be, that’s okay. I get the chance to live at the best of my ability. I refuse to give in, I am not stopping. 

 

 

 

 

 

*****please be kind, wrote freehand with limited edits****

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