Alli
New member
- Joined
- Mar 2, 2014
- Messages
- 2
- Reason
- DX FIBRO
- Diagnosis
- 10/2012
- Country
- US
- State
- VA
I've had a rough winter, my fibromyalgia and lupus seem to only be getting worse. I've had symptoms since I was 9, but I wasn't diagnosed until age 22. Having a diagnosis is bitter sweet. I have proof that it's not in my head and I'm not overreacting, but it also means that this isn't going to go away. I already take 6 different medications a day to keep it 'manageable' but every few months we have to up the dose because they lose their affect. I get really overwhelmed with the thought that I will always feel like crap.
Every future plan includes the disease. We're planning our wedding and I need to plan in nap/rest times so I don't crash, my dress is strapless and worries me that my ribs will hurt throughout the evening, I'm afraid that my scalp is going to hurt and I won't be able to have my hair done, my concerns go on.
My fiancé wants to help, but gets frustrated because I still hurt and I don't 'think positive'. I feel like my soreness, stiffness, and fatigue are driving a wedge between us. When he wants to go out, I'm stuck on the couch, I need him to help me do my own laundry, or I'm asleep whenever he's home. He never knows what parts are tender when, and I often have to pull away when he touches me. Most of the time we can't even hold hands because the lupus cripples my fingers.
Every future plan includes the disease. We're planning our wedding and I need to plan in nap/rest times so I don't crash, my dress is strapless and worries me that my ribs will hurt throughout the evening, I'm afraid that my scalp is going to hurt and I won't be able to have my hair done, my concerns go on.
My fiancé wants to help, but gets frustrated because I still hurt and I don't 'think positive'. I feel like my soreness, stiffness, and fatigue are driving a wedge between us. When he wants to go out, I'm stuck on the couch, I need him to help me do my own laundry, or I'm asleep whenever he's home. He never knows what parts are tender when, and I often have to pull away when he touches me. Most of the time we can't even hold hands because the lupus cripples my fingers.