Hands Holding Mine

I thought when my AS progresses, it would get worse only in terms of stiffness and fatigue. I didn’t realise the pain could become so bad that it doesn’t respond to pharmacological help at all.

As I told one of the hands holding mine, before, lying down gave me relief. Being able to take the weight and pressure off my SI joints allowed the pain to dissipate. My only concern was that as a teacher and therapist, I couldn’t exactly lie down as my body dictated.

But now I’ve lost even that luxury. It’s like I’m lying on bone and nerve, no fat, muscle or skin to cushion my bones. Nothing is bringing relief. Nothing. And that’s a scary place to be.

My son’s paediatrician had to see him yesterday. We are focusing on his anxiety on top of the mood and ADHD. The office manager asked me how I am. I told her I’m ok, and she said, “No, you look like you’re in pain. Is it the surgeries?”

I hate that. I thought I’d forever be able to hide my suffering from people.

Same with the pulmonologist. After he told me he believes I have pulmonary fibrosis in my right lower lung this week, I went to get a nasal antibiotic and steroid at the pharmacy. (My sinusitis is taking its own sweet time to clear up.)

There’s a store manager we’ve known for years who happened to be on duty. She asked how I am. I said my usual, “I’m fine.” And she said, “No, you’re not. There’s something wrong with your lungs. I can hear it. You need to take care of yourself as well as you take care of your children.”

Wow. I didn’t know an acquaintance would hear anything. My family doesn’t comment on it. Only one friend has commented via voice note that I sound out of breath.

This is hard. I have no choice. I can’t ‘rest’ like I should. I’m constantly researching as therapists are very hard to find. So I need to be the researcher therapist when my children aren’t around . I also need to be the teacher and mom and cook and cleaner. Yes, we have help but it’s part time on the few days she does come. It’s not even a full day’s work on the days she comes -budget issues.

It feels lonely. My closest friend in my province and church has absolutely no clue what it’s like. She has never asked what the actual nitty gritty realities are and has never attempted to understand how relentless the strain is.

And so, I have people holding my hands from a distance. One even in a different country. But..they are holding my hands even though none are home educators, have children or children with extra needs. They can’t relate, but they can LOVE!

And also, someone I’m not even close to sent a monetary gift for fuel or whatever we need. I could safely go to the paediatrician knowing I had enough money to pay his fee -R1070. Thanks to someone holding my hand.

I’m so thankful for the care, concern, trying to understand…The video watching to try enter my world means a LOT to me.

While I pray for a breakthrough in terms of my treatment and the children’s therapies, I continue to wholeheartedly pray for the best outcomes for THEIR situations.

They are God arms, holding me up when I spend over a week limping and using a cane and then stopping because the wrist pain is too great. They are His love.