Glad my Dad is Dead

Doing my Ankylosing spondylitis ‘slowing of disease progression ’ exercises is becoming more difficult. My one side does not agree to go down much. And doing normal exercise is becoming more frightening. After a lower body workout, I cannot walk properly at my hip and right SI joint. It’s like I will collapse because my legs don’t want to move. Not muscle fatigue, but the actual pelvic area is stiff and weak, shaky and doesn’t obey my commands me to carry me and walk to the bed!

For this bridge above, I rely on my left leg to hold me up. My right one just sinks down. Doing marching bridges-where you’re basically walking while doing a bridge, means a sharp pain when my right leg is holding me while the left knee comes up.

At the same time, I hate that I am in so much pain that I cannot exercise (normal exercise) as much as I want to. By the time night time comes and allows me to -I asked the children’s father if he could do his 5am treadmill running in the evenings as the time change doesn’t impact his body’s ability but it hasn’t happened-the pain has built up through the day and I’m too fatigued and sore to do it. I take pain meds but they don’t reduce the pain.

I wonder if the children were in school as the rheumatologist said, if I’d be in as much pain by night time. One evening this week as I was writing out the work the aide was tk do, I ended up writing, “I’m dying. Just do the next sections.” (Usually I look at weak points and create or find worksheets to reinforce the areas Amarissa and Micaiah struggle in that he deals with.)

But more than that pain during exercise issue, is the reduction in mobility of my right side that is worrying me. When I am fused, will I be able to bend to sit? Will my leg give way even more? Will I actually fall as opposed to being able to stop myself from falling when it gives way now? It’s been years. How effective is the Rinvoq in slowing this process down? But, when you are fully fused, you feel no more pain. Which is worse? Suffering no through the day and night? Or being permanently unable to move that area? Why do I have to ask myself these questions? Why does AS exist?

Any kind of lunge is bad for me. Doing a side plank on the right side is painful for me. It’s like afterwards a nerve is pinched and making me numb so I can’t feel my leg and stumble.

This is all insane and terrifying. How will I survive when I’m living with older, stronger children? Already, our non speaker has crazy strength. Remember the very experienced paed who’s never had a child as strong as she is yet she’s only six!? One mom’s now 21 year old has broken her leg. What happens when she’s 10 and twists my neck like she tried? Especially given the fragility of AS bones?

When my father started getting super sick, I took him for bone scan way before I realised I’d also need one. The amount of inflammation in his body was horrific. My doctor friend who gave him the lifesaving prostate injection, bringing her White Afrikaner female self to Gugulethu to administer it, prescribed diluted morphine for the pain.

Y’all know the pain where I tell God I just want to die? He’d lived it for 40 years, always telling people it was a car accident that caused his back and leg pain. Like me, he also couldn’t sit in church. But he couldn’t even barely handle lying down for the bone scan and I knew then that it wasn’t the accident even before they sent me the report. (Another reason I’ll never have another injection into my spine. Lying there on that hard surface for temporary minimal gains…)

He suffered. His shoulders fused by the end of his life, so two men had to try help him get dressed for my mother’s funeral. It’s that fusing that scares me. I don’t have the luxury of people helping me. I am the one helping my other people who are getting stronger and scarier. She doesn’t want her nappy changed sometimes, I’m not even meant to change it nor dress her anyway… But sometimes I have no choice. A live in helper would be a dream! But until then..

My father gave even when he should have been resting. Their ‘caregiver’ would disappear and they’d not tell me until weeks later when he wants me to track the person down to return his car. And so my father would be the one washing my mother’s soiled bedding. (She took months to accept adult diapers but with nobody to change her anyway…) He’d be the one I find don’t ironing when I take grocery to them. He’d also be the one telling me not to be crazy and buy them new dish towels when theirs are fine (full of holes!)

I am glad my father is in no more pain. His other children from his first wife took his morphine away. Gave him herbal pills instead. This is the couple where the wife told me I’d be healed from Ankylosing Spondylitis if I saw her counselor who traveled IN HIS MIND to Ukraine and spoke to Zelensky🤯🫣Where were they when I was killing my back sitting in Groote Schuur hospital queues for his cancer appointments?? Where were they when I paid R13000 for a bone scan for him?Africans and morphine! Were they there when I sat with him discussing with a doctor that we’d need to cut his testicles out to stop the hormone driving the cancer? But they were there to remove the one painkiller that helped him move around with less suffering.🥹

Given by the very same palliative care, cancer specialist doctor who helped him have many more years of life and allowed him to wait the long hospital waiting times for THAT surgery. “Yes,”my 92 year old father said, “Cut them off, I don’t need them.”

If I could surgically fuse my SI joint like many in the States are doing, AND be guaranteed it would work, works for most in taking that pain away, I also would tell them to cut me up.

And lastly, I am also glad my father is dead because only now will I have no pressure on me. I have a sibling who’s a terrible drunk who makes babies everywhere. Old church members have seen him with his latest floozy at the public clinic, having a pregnancy check up. I have nieces and nephews I don’t know about. His wife said she wanted to divorce him. My father often told me, to phone her and tell her not to divorce my money finishing, adulterous, ‘does he not have STDs?’ brother.(She has a child my age that she had as a teen. Why would I tell a grown woman what to do with her lousy husband?)

Ironically, she had been in the UK all those years so it was the children telling her about the women they’d find, and the beer bottles. He told me last month that she’d back in South Africa and living with him. No comment.😅My father would have been happy!

And my mother would be firmly on the cheater’s side too. After all, my solely caring for the children day and night and worse so when their father travels, wasn’t taxing. She would feel sorry for him when just once a month I’d leave the babies with him and take grocery to my parents as a form of me time. I did nothing in her and his mother’s eyes. Apparently keeping children alive, fed, taken to hospital, EDUCATED, is nothing. And so she too would have come down hard on me like my father would have.

Now, I have sister friends who get it. One of whom regrets having ever told me NOT to divorce back in 2016. And no contact with relatives to pressure me. No contact with church elders who pressured me last time to act romantic towards their cheating idol. “I used to admire him…I still admire him.” Good on you, you should marry him then, is what I should have told him.

The irony? He was upset when his wife received birthday money from a man-the man’s wife asked him why his wife was talking to her husband and receiving gifts. I think it was R200 airtime . But somehow, my situation-“It was just a loan!” (SSaid and ‘repaid’ after I found out about the R19500 a MONTH to his floozy) evokes no anger. Sexism is …

I see why more women now prefer to just worship God alone.