Head, Shoulders, Knees and Toes…

It’s not even funny. I have been getting headaches for the past two weeks. It’s only this morning that I realised they coincide with my increasing neck struggles. Whether I take the pillow away or not, my neck is suffering. The night was bad and my headache is back. And I finally clicked that they are linked.

Cervicogenic headaches

I’m considering taking some of the first tablets I tried-sulfasalzine. Just to see if they at least reduce the pain and swelling and stiffness in my hands, fingers, knees, foot. I feel like I’m wearing hard knee pads or.. like I’ve got concrete in my knees. I don’t have many, and you have to start on a low dose because of the bad side effects, and it takes months to work. But I’m desperate. I will take it slow because the side effects were horrible and hope. I don’t even know what to hope for.

I have been finding solace in AS groups where others come along and post their woes. My South African group was full of posts by people whose meds are working so occasionally had flare ups but were generally under control. The larger groups where there are many of us (Over 7000 while the SA one had less than 1000) have been a lifesaver. I told a ‘brother’ that I feel like giving up. But I can’t. And just a day later, someone had posted, “I don’t suppose giving is an option, is it? Because I really want to just give up. I can’t take this anymore.”

I get you, sister!

And so, I go to the groups. But even that is not helpful. We are stuck. People here think America is the land of plenty, but they have plenty troubles too. People whose insurance denied them the biologics they need. People side insurance suddenly stops paying for a biologics that has been working perfectly. It’s not that amazing there. Americans too, don’t have it all. Nobody does.

It’s perverse, maybe. It sounds wrong, perhaps. But when I can only feel the disease getting worse, I am grateful that I’m not going through it alone. You have days where loved ones focus only on their issues and don’t even ask how you are. I go to the groups. I see someone in my AS shoes tell them, “Same here! I’m sorry!” And then I feel seen when replies come.

I just wish there was a group for “Homeschooling AS moms of autistic children.” I might have said that before, right?

Someone posted that they don’t want negativity, only positives under their post, people must share the things that help put them in a happy place. People spoke about their children, their dogs, their expensive adjustable beds, how grateful they are that they’ve found biologics that are working for them, how they have time to read lots because of being stuck in bed resting all day. I should be so lucky!🫣 That was one post and set of comments I couldn’t relate to. Yesterday was a hard day where you couldn’t ignore Autism because she caused lots of suffering. I was praying hard to survive till night. And resting that both girls would sleep. Both are having increasing sleep problems-the twins. It’s hard to handle increasing pain when you have increasing parenting struggles. I had no positivity to share. The replies opened my eyes, instead, to how hard my life really is. How alone I am. It is VERY rare to have multiple neurodivergent children with learning disabilities while this sick too. Hmmmmmm

And yet. I’m not angry for trivial reasons like some meme that shared research on special needs parents started. I don’t snap at my children. I don’t lose my cool. So, I must be’ ok.’ More ok than I thought. I could feel or act worse.

There, I managed to pull a positive out of my ‘chronically yours’ life.👀

I pulled another one out just as I was about to ask my girls who always ask how I am, for prayer. My husband left his car behind. So, my son can go drop his sister off for her exam and then return. I can then still have my car for any emergency or anything that pops up, and then I will go fetch her. I’d been about to type to them asking for prayer as I didn’t know how I’d survive the drive to the school which is NOT close by, the long wait-over two and a half hours-and then the drive back in peak traffic. My staying home alone wouldn’t have helped either. Yesterday’s ’cry a lot’ twin is too heavy for my bones. Getting her into the bath and changing her diaper etc would have been too much for me. But now I have an option to make things a bit easier on these here bones. I might not be able to stay in bed all day, but I reduced the extra suffering that would have been inflicted on me.