Warning- I have fellow autoimmune inflammatory arthritis followers so I am very real about what active Ankylosing spondylitis is like for people like me who aren’t responding to treatment. I will include nipples.
She has absolutely NO idea how this long running conversation of many topics has been a help. Because it’s through WhatsApp, I can do other things while still taking a chance to steal a glance and reply. And with the level of pain I’m in, the distraction has been perfect. I’m unable to lie down and rest because of parenting duties, so she’s seeing me through the suffering. If I’m in bed and the pain is this bad, I can’t even try converse because I feel so alone in the war that the other doesn’t realise or can’t imagine. But like this when I have no choice but to keep smiling and guiding and leading… I need the distraction.
It’s mental too. My daughters change their clothes multiple times a day. I had tried to keep their clothes in my wardrobe but I don’t have space. I have quite a few outfits like this- three are thick dresses/robes like this below, and four are onesies. Worn because skirts hurt. And with thick material, you can’t see nipples from a body that can’t wear a painful bra. I mention this because it sometimes comes up in AS groups, women asking if it’s just them who can’t handle clothes and bras. Some don’t wear bras at all. Some stay in their nighties all day… All because of the pain..
That means my own wardrobe space is filled with warm hoodies, normal clothes, and these space stealing style clothes. So I took some out and put them back in their wardrobes. Which then results in this.
I just want to cry. I hate mess. I can’t bend down to pick it up. I got a third of the room done via directing the owner of this shared bedroom and then went to see how much I could get if the other one whose owner was too sleepy and angry to be of much help. See those pink fleece tops by the bed? I reminded my girl to hang clothes, put others in the drawer.
Yeah, that’s not a drawer. It’s all day, every day, it’s draining and frustrating. And I’m tired, readers. I’m so tired of being single mom. Last Sabbath, there was someone constantly coming in so so often that I ended up texting their dad about how Andrew Yates was found guilty of killing her five children by reason of insanity and so avoided the electric chair. I told him that one of the things her defense pointed out was that she “only got two hours a week away from her husband and children.” I pointed out that I get no time away and she was healthy. And I added that I can fully understand the South African doctor who forgave his wife for killing their autistic children when they moved to New Zealand and she was alone with them.
He got the message and told them to sit down and stop bothering me. It should not need to go that far. Surely if people know we are constantly bombarded every day, they should automatically give you a break on a weekend? But anyway, it was a warning that this was unbearable, not that I was about to harm the children. because if anyone would die, it would be me. They deserve life. I’m the one who is stressed and sick. So I don’t understand killing the children. It’s selfish – in MY eyes. I’m the one with the problems, not THEM. Why should I get to enjoy life while little children lose theirs at my hands? Even during the worst of postnatal depression, my wish for someone to randomly come and adopt them, or for them to suddenly be taken into a wonderful baby care facility. Never for them not live. I don’t understand it. But anyway, that’s how it is. Constant drip drip of torture. Yesterday afternoon, my five year old came to the room barely 4 minutes after she’d already come and I’d given them activities to keep them busy, and I exclaimed, “Please, please don’t say anything. Give me one minute. Just one minute, then you can come back.”
She didn’t come back right then. She told her ten year old sister, “Mommy is begging for one minute to rest.” So big sister wisely told her not to come at all because what was the reason she was coming? To ask me to buy them a ballerina dress each. Definitely not something that would exactly make me rejoice! (What they don’t know is that I’d already ordered ballerina dresses and they’re on their way.)
Yesterday I realised that unlike a school teacher, I don’t get break times in the staff room. I’m with the pupils all day every day. I don’t get a drive home like my husband does, who then listens to an audiobook and basically ‘relaxes’ on the way home, leaving the work environment. We live work. There’s no holiday or sick leave.
My shoulder. My thumbs. My leg. My shoulder felt more pain just stirring a child’s bowl of maize porridge. Just doing that. That’s the pain the WhatsApp conversation distracts me from. The back. The hip. The SI joint. The heartache and loneliness.
You can’t feel lonely when you’re alternately laughing and being serious.
So next time your sick friend seems very amenable to chatting, even if there might be long pauses while they feed or medicate or remonstrate or hug a child, please do chat if you can. You have no idea the blessing your conversation might be to them. I crave adult conversation and I’m thankful. Yesterday, as my son ate a clementine, he – who knows full well that we believe God made fruit and fruit trees- asked me how people opened up the peels to glue the wedges together.
That’s the level of conversation I have sometimes. The adult conversation is a blessing. Think about THAT too if you’re chatting to a sick mother who is a shut in. Not all husbands ask about the children. Not all husbands ask about progress with spelling or even know the resources being used to help the children. Some husbands seem to exist only to tell their wives about THEIR work. You sincerely might be the only one who cares and knows and gets frustrated about occupational therapists. A story for another day. If she’s chatting, she might be chatting not only because she loves you, but because she needs you.
❤️
They said I should write a book 