Your Shoulder?

Do you ever think about your shoulder? As in, the entire bone running from your neck all the way down to your fingers? I still wish I could tell that dismissive orthopedic guy that he was a dummy. Even a GP took my shoulder pain seriously enough to inject cortisone into it. Anyway…

I don’t think about my shoulder. I do think about my painful and swollen, ribs, stiff neck and hip and SI joint and back. And feet. But it had been a long time since my shoulders had wanted to remind me they exist. Last night and today, they joined in and I just couldn’t sleep. Hands sore, left shoulder sore. From neck down to the tips of my fingers.

Cape Town is definitely no good. We have high humidity and I’ve often wished we could move to somewhere warm in winter to avoid winter flare ups. No weapon formed against AS has won yet. And I’m tired. Tired of pretending to be ok. Tired of knowing people know I have AS but not giving grace and empathy and tenderness. It’s so LONELY. It’s my ten year old who worries. So let me re-phrase that. Except for my ten year old when she notices I’m limping, there’s no empathy and tenderness and worry and, “I don’t know how you do it.” No concern and care. All I got when the rheumatologist said I need to ‘resign’ my teaching job and go on disability aka stop homeschooling, was a husband asking, “Is she crazy?”

And I’m not alone. Too many men don’t want to understand how bad it is. I’ve often wished I could give him just an hour of the pain and fatigue I’m pushing through. Just an hour. It’s so common for men not to get it or want to get it. If you’re in my shoes, you and I aren’t the only ones. I personally know people, and have seen it in AS groups. In general for all ailments, most men don’t get it.

And then, with the confirmed learning disorder diagnoses, comes more work, not less.

I have mixed two dysgraphia curricula together as one full one that the educational psychologist recommended is just too expensive. Not only did physical goods like these ‘unknown to me’ things that arrived yesterday, but a whole lot of ebooks too. It’s a whole new journey that I first have to study. And I’m not even coping with the current one.

I forgot to put antibiotic ointment in my girl’s eye yesterday. Thankfully we’d reached the right number of days but I wanted to do some extra days because she fiddled so much with her eye lid. Thankfully the pain is gone and it is settling down after surgery. I forgot to take all my medications yesterday (and most days.) When I woke up from pain, I was wheezing. Time to take the forgotten inhaler and use it. Time to take my forgotten nasal spray for the chronic sinusitis and use it.

I am on the edge of breaking but the children rely on me. The hours in the day don’t match what I have to do for each child. Nor for the amount of rest the rheumatologist and I both know I need.

Of course, having to study the dysgraphia curriculum and figure out what is needed per day is adding to the daily trials. Besides a husband who doesn’t understand, there is a lack of special schools anyway. I’d be trapped either way. And so, I have to get a heater and get this room warm so I can prepare even later into the night and start earlier in the mornings. Complicated by increasing pain that sees me having to wait for the painkillers to kick in a bit so I can focus on my Bible reading FIRST. But I find myself falling asleep when reading. AS fatigue keeps you tired anyway. But add lack of sleep…

Winter in Cape Town (and elsewhere but I’m here!) is brutal. Pretoria is less humid and so my oldest two had had no problems with their fingers like they have had for YEARS here in our winter. Until yesterday. My poor daughter’s fingers swelled up way more than mine but thankfully she’s not feeling any pain yet.

We need more hours in the day. And with my non- speaker responding more I have to add more for her too. Puzzles! She’s been loving looking at the picture. She pointed at each animal I asked her to point at. Every single time! She’s never done that before! She shouted in a high pitched- kinda scary because it was an unexpected and new -voice, “Puzzle pieces!” for the first time ever when I took a new puzzle to her room and told her “Puzzle!” She gestures more. Wants the room dark when she’s having her quiet time. She copied my movements when she had struggled with the pieces. Understanding what to do after I only did one for her.

Everyone needs more work and attention. But my body is failing me, there’s not enough time, and their education is becoming more complex. What a crazy ride this has been. And it’s not about to end!

I hope the trials of your day today don’t wear you down. I hope we all survive today and every day. I hope an end is coming soon and I’m thankful to the author of @lyfedreams for commenting. When I have time, I’ll scroll all the way down. People all over are dealing with trauma and pain. Overcoming and sharing to help others. Let’s do it! Grace and peace to all!