Thankful and Watchful

(ETA I posted a lie!! I got a bladder infection and had to quit! And then I got an abscess in my groin and had to quit again. Wow, my memory is SHOT!)

Our ausome non verbal angel and her traitor domestic worker who is leaving next month.

The nerve to be leaving to take her children from grandmother and raise her herself! Who cares that she misses her children and they need her?😉

It’s been hectic! AuDHD lives are non stop as it is. But our ausome non speaker has never been well since December when her symptoms began, then hospitalisation, then discharging with incomplete emptying but her hating the medication to help her out…And two flu attacks back to back. Not a cold, flu. She’s not rested. Which means those who medicate are trying to get even more medication into her -and failing because she clenches her teeth together and how do you fight that?

Once again, this disorder deserves to be called a disorder in the way it manifests in her. She has no understanding that the stuff I’m giving her is to help her. To us, it tastes ok. Ok one is horrible, but before the flu she was allowing me to syringe the not tasty one throughout the day into her mouth and refusing the other completely. When the first flu bout came, that ended. She now takes almost zero meds without a fight, or it not happening at all.

The children came down with it too. Then they started recovering, though our current big girl of the household- seeing as big sister is away studying-was still coughing.

Their dad came back with a bout of the flu. And this one was bad. He kept complaining, I kept telling him to then take anti inflammatory pain tablets! He even went shopping with chills and sweats that made his clothes wet. Then the children fell ill. It was and is sad – sore throats, headaches, respiratory problems, coughs, horribly blocked noses, nausea, weakness, fatigue, body aches, painful lower limbs, “I can’t walk. I think I’m turning into a grandma” my poor six year old wailed as I had to put her on my back and put her back in her bed.🥹

It’s been the worst ever. The only ‘solace’ is that it’s not just us. I’d read an article about how flu season started too early this year and is worse than other times according to suffering patients. I was so relieved that I wasn’t ignoring some crazy pneumonia or TB! It reminded me of some other time I started doubting my ‘Florence Nightingale’ routine and thought maybe I should have taken them to a doctor. I knew though that there’s no actual real treatment they can give that I can’t, but for a day, I thought I was ignoring pneumonia. Then the next day recovery began. I thought I could be treating a strain of the flu when it’s something else completely…

But then three got it. And my anxiety grew even as I sighed in relief. Less time to rest due to treating everyone and also giving their normal meds, means less rest. Less rest means lowered immunity. And to fight AS, I’m already on treatment to lower my immune system so it stops fighting my body when it should only be fighting disease and not me! If they get it, what if I get it? We can’t afford that, not NOW!

Nobody wants the awful flu the children have. Nobody wants the flu when they are the only caregivers the other patients have. I’ve been there before. I made the GP angry because I ignored how bad I was because I was worried and helping others who were actually better off -good thing they don’t have fibrotic lungs. I also know how desperate one feels when they’re suffering but still have to force themselves. I live it daily with AS. But if I get sick, I have to go off the AS treatment that reduces the severity of the disease so that my body can try fight the sickness. That means double torture and still no rest. Stronger AS symptoms added to the flu. Noooooo!

But also, we’re about to do my bloods. My red blood cells have been decreasing each time. We need them to stop that! We need to know exactly how badly Rinvoq is impacting them. We need to test me while I’m on it. We need to check that my liver is still ok. Two more members in the group had to quit and try a different treatment because it almost killed their livers.

This AS patient needs proper info so we know the way forward.

And it’s anxiety you hold inside. You don’t tell your children. You just try bottle it up and smile while you hope your check up hurries up so you can know you got tested and seen while on your meds.

I went to fetch ironing and the lady handing it over had the flu too. And like my children, she’d gotten better and then WHAM it returned with a vengeance. It’s barely winter. It’s clearly going to be a very long one.

We’re in for a tough ride. But for now, in the AS world, we thank God that a year came and went and I didn’t have to go to hospital multiple for IV pain relief as I did in the previous year!! Here’s to more years of Rinvoq! Please. And no flu so we know if it’s harming or only helping reduce symptoms which is good enough for me!A

As for Vi and our ausome angel outside…

The whole thing will shake like it’s going to be blown over, and she won’t care. So we take it in turns to go keep her safe for her ascent up the slide. I must say, she’s grown stronger! She couldn’t climb up before. Now she can -depending on the shoe! Her arm strength has improved! 🥰But wow, doing this when winter is starting…🤦🏾‍♀️