What it Looks Like

DO NOT READ IF YOU DON’T WANT TO BE REMINDED THAT INCURABLE AND CHRONIC MEAN THE DISEASES ARE ‘every single day.’ THIS POST IS MY REALITY. HE USED TO CALL IT “complaining” (Negative, ‘You’re so ungrateful’ connotation) when I’d mention how tired and stressed and in pain I am and that I need a rest. It’s not. IT’S MY STATING MY REALITY SO HE CAN SEE HOW MUCH I’M GIVING WHEN IN TRUTH, I SHOULD BE RECEIVING. FOR THE BLOG, IT’S SO THAT IF YOU HAVE SOMEONE WHO IS SICK OR HAS CHALKENGING CHILDREN, YOU GET INSPIRED TO HELP THEIR MENTAL HEALTH BY ASKING WHAT KIND OF DAY IT IS, OR TO ACTIVELY HELP BY BABYSITTING, GIVING A BACK MASSAGE etc etc.

I now believe the dry and ugly lip- according to my mother and Black Xhosa cashiers- was the first sign of Sjögren’s disease. You know the irony? I truly believed ‘he’ loved me because he acted like he hated it when my mother would criticize my lips in front of him. He’d tell her my lips were fine, to leave me alone, and he kissed me often. It’s funny. He told her to leave me alone two weeks before she died, while he was with his hoochie. I wish he’d told himself to leave someone else’s wife alone! But anyway…

This is how Sjögren’s can present. With dry lip or another part of your skin, for years before the other symptoms and oh my word, the other symptoms are heavy on me, readers. I am only moving because of guilt and necessity. I’m teaching because I don’t want to NOT teach but then get sicker or they get sick and then miss more school. So, I force myself. The back pain is horrendous. I even have muscle spasms! You can feel the muscles contracting and expanding and you just want to hold them still! As for the lips, we moisturise all day long, multiple times a day. Many use cracked heel balm many times a day, on their lips.

Yesterday, I drove my daughter when really, I wanted to lie down. The stomach pain is BAD. Lack of moisture in my intestines and stomach has caused a whole lot of constipation and a whole lot of pain. (That phrase is all wrong!) During one point while driving, I was curled up trying not to groan in pain.

I need to rest. Instead, my girl wakes earlier and earlier. I can’t read my Bible, can’t read anything relaxing to take my mind off the daily round of stress, and my nights are disturbed anyway. In the same way people get disability for AS, there are people in the group who have to take it because of Sjögren’s. What a cruel trick, to give me two autoimmune diseases that both cause pain and suffering.

Then, the twin thing…Both needing me at the same time. My other twin decided not to have lunch, but to get a school reading book and read five stories from it to me. FIVE! Very exact. She didn’t flinch when in the background, her sister started screaming and crying. My tension increased. But I didn’t want to abandon her because of her sister. I don’t want them ever feeling their sister gets too much attention.

I am faking being ok a lot. I don’t even have time to cook for myself, folk. Zero. I can’t eat the legumes they can. The onions, the couscous. So I need my own separate meals and I just don’t have the ability…And their dad returning from his holiday in Japan won’t change anything. I’m still the one they wake in the night. I’m still the one who listens when they read. Still the one my not many words twin asks for “chocklit” after seeing it on the Starfall educational app. But my stomach is already sore and full, heavy and bloated. And he will never care.

Cursed is the wife who is not loved by her husband. I need a mommy. I wish I had one. I wish I had memories of having a mommy.