Did I Mention Sleep??

So, from birth, the twins didn’t sleep. We finally got some medication help for each around the time they turned three. (Prescription anti psychotic that happens to help with sleep for my diagnosed angel, and a natural one for her twin sister.) This year they turn five. We had a good year and a half but things have come off the rails this year.

I had bad nights since I was five years old. Leg pain made me stay up in utter agony which lasted till I was a teen and then became full blown arthritis, and abdominal pain some doctor claimed was Crohn’s disease after a colonoscopy at age seven.

Then IBS insomnia and stomach pain hit from my 20’s on till I found the FODMAP diet in my 30’s. I always woke up at 3am on the dot and couldn’t sleep thereafter.

So, I’d had decades of not sleeping properly.

Then we get to what we now know is AS pain.

That started being a night time terror at age 40. I’d wake up at 4am- not too bad. But I was also very tired now. It’s been too long, I suppose! From 2022, it was any time- I’d wake up any time and struggle and toss and turn and pray to die and then fall asleep as soon as I’d done my Bible study at 4:30am. Wake up at 6am.

Now we come to 2024. My girl who doesn’t talk much is very loud. She will wake you up when she’s up. Not crying, just loud noises. Shouting noises. And her bladder is producing a LOT of urine because she’s asking for a LOT of juice. She has been peeing through her diaper but had been staying asleep while very wet till last month. Last month, she started waking twice a week from 3am and staying up. We changed her meds because of the weight gain and hoped Abilify would be better. But it doesn’t help her sleep like the risperdal did! She’s not sleeping through the wet pyjamas at all anymore.

At the same time, my AS started KEEPING me up and not allowing me to sleep till 11pn or later. Twice, I stayed up all night because of pain. And all day. I increased my night time trepiline pill that also adds to your sleep. But you can’t sleep when your child wakes up and stays loudly up from 2am even with help from Big Pharma. And yes, I did try natural meds first for my sleep but the nightmares caused by pain are too real in valerian root and this other herb I tried. Way too real and too long. I always screamed and woke my husband up too!

Which brings us to tonight. I slept at 1am due to pain. I woke at 2am. My dear loud, wet pyjama angel ALSO has a cold. Very blocked nose. There is no way she will sleep.

And I’ve made up my mind. Abilify is not for us, not now. Not until I can try a larger dose of melatonin and get it via syrup instead of hard tablet. I am hoping very hard that once this stupid cold passes, she sleeps through the wet diapers more with the risperdal, like she HAD been. Oh. And because of the weight gain, she’s too large for the largest diapers for her age and too young for the teen sized diapers which are too wide at pelvis so force her legs open.

I don’t know the solution to all these problems. We have tried to reduce the amount she drinks when she asks for juice. And she doesn’t drink after 4pm!! Surely she should have peed it all out? And nope, potty training won’t work. She doesn’t get the concept and wants OFF as soon as possible.

And now? When I’m up at 2am, the pain is screaming.

What a mess. Ankylosing spondylitis, autism, all day, almost all night lack of sleep.

I wish I had my girl’s energy. Nothing will keep her down during the day! She acts as if she has had ten hours sleep!

Help!

And then we have men. Men truly act as if they have the mythical man flu! (Man flu is the belief that men complain way more about symptoms of the flu that are less extreme than those of women. Ie. They act as if they are about to die when they’re really just dealing with sniffles. ) I believe in general, it’s really that men are oblivious to how heavy women’s burdens are. They don’t put themselves in women’s shoes and don’t really listen when women express their level of sickness and so act as if what they are going through is the worst thing ever. When their women had just experienced, or still are going through- something worse. And they can be so oblivious! They hear but they aren’t listening. 🙈My oldest brother has a terrible cold. I heard it when we spoke over the phone on Monday. Then Monday evening, my husband went to meet him at my dad’s house to choose stuff we want and get the books my dad bequeathed to me. He was there with them for hours. I didn’t go because my pain is unmanageable.

Yesterday evening, he comes back from work with signs of a cold. His reasoning, “It must be the lack of sleep. My body is extremely run down.” And I thought, “Because for two weeks you’ve woken at 2am, your body is so run down it creates a cold… After decades of less sleep than that, I’d have the mother of all colds- perpetually! Can’t you see me and what I’m hoping through?” It’s very likely from my brother, who sounded awful yesterday. Really scary bad. The cough… The blocked nose…The joys of an invisible disease. It is easy to forget it exists. And who would speak up about something they’re enduring every single day, all day? You don’t wake up and say to your spouse, “Well, again, I’ve had only two hours of sleep.” Invisible disease-so easy to forget when you’re not the one going through it.

Oblivious. Men are some times so wrapped up in their lives they are oblivious. The same man who will exclaim over how you ran for your pain pills as soon as he woke up will forget that very fact- that the pain is extreme sooner than ever. Our diseases leave us more than ‘run down,’ and for a very long time. We’d have pneumonia and be on life support if our bodies were to manifest the lack of sleep.

I really wish AS had red lights that flashed and sirens that screamed when the pain was unbearable. Then people would get it and when we tell them we have hardly slept, they’d remember it because of those red lights flashing and the sirens screaming and keeping them up too 😉I’m not too mean though, I’d allow them to escape the noise…But at least they’d know how long and often it is that we smile and talk through intense agony. (Though yesterday by 7pm I was seriously suffering and wanting to cry, visibly limping and dragging myself, not even completing my AS stretches. No smile from 7pm.) Then they’d understand how two weeks of waking at 2am or 3am to go change a diaper, is kinda not as bad as what the person they are complaining to endures. 😉

Wish I could do that for the people who know I’m unwell and never will be cured but blithely text, “Hi! Hope you’re having a wonderful day..” and end our conversation with, “Have a lovely day, enjoy it!” That is impossible. I can’t ever have a wonderful day. Even on biologics. It would be a miracle day! I can’t enjoy a life of constant suffering and not being able to do even more things every day, having more things stripped from me. But I CAN survive. I CAN keep my temper and stay gentle with my family even when there’s a fierce storm inside me. And that’s what I’ll have to do with the lack of sleep too. Survive and smile. Survive and smile.

Help!