Tag: Sjögren’s disease

But they keep waking me up!

(I have information in here for women dealing with Sjögren’s disease. It’s information about body parts your gynae or your loving spouse looks at. We are adults and we need to know how this stuff impacts us.)

My Island friend asked how we are doing, lamenting that Sabbath isn’t Sabbath for me. She’s managed to create a hidey hole so she doesn’t have to constantly be looking at the author of her suffering every moment he’s in the house. She even has cooking implements in her little corner of their home, though she still has to hide her journal and keep it locked up.

But it’s that sense of peace, that I envy, you know? Her children are neurotypical and older, when they’re all at church, she gets full time to be with God, no interruptions. She can watch whatever sermon she wants and be fully immersed in the message. It’s what many parent assume will happen when their babies and toddlers, preschoolers and primary aged children grow up. A sense of rest after years of being watchful and not rested.

Except it never comes for parents whose children will never be independent. And who can’t afford full time aides to be their eyes while they rest. And it doesn’t come for wives whose treacherous husbands don’t give them space.

It is very galling living with someone who hates you but uses you. Someone who isn’t a husband but also not a father. Someone who comes in and out of your bedroom, sits in your space and acts like they’ve done nothing to cause your nervous system to be shattered along with your heart when your ultimate goal is to be a single UNmarried mother, not a single married mother like you legally are. Though not in any other sense. It is horrible sharing a bathroom with someone paying for his and his floozies bathroom. And bedroom. And furniture. And on and on.

And so, with the cold and rain here, and the mental strain building, it’s no wonder the mother of all flares has decided to remind me that I am dying. And I was totally fine trying to die! Not a literal death! But I was fine not existing for anyone! I was fine just lying here. But I couldn’t.

Not when the children have no parent and they all need medicating, but I tried! I didn’t get up till after the twins came in. One pulling me with her very cold hands after waking and going to the kitchen and doing who knows what, and the other bouncing in wanting me to be excited about something I still don’t know it was while my head was pounding and my bones were screaming.

Head.

Sinusitis.

Sjögren’s disease is a formidable foe! Your skin is sensitive. Turns out that’s why I can’t handle clothing and underwear! It’s the skin! It’s cold but wool is horrible, I can imagine how people with SPD feel. It’s like the jerseys and polonecks are scratching me. So those flew off. Leggings hurt parts we ladies can’t mention but have to mention so any other new to Sjögren’s disease reader will know they aren’t crazy so …

Sjögren’s dries you up. You have no lubrication. No protective moisture. Your external but still private parts rub painfully on your underwear. Leggings and tights with their seam in the middle that go up to that area, are like steel wool on sensitive skin. So what then?Stay in pyjamas all day? How does one keep their legs warm when stockings, leggings and tights are painfully uncomfortable? Loose joggers or track pants. But then if you’re a skirt and dress lady, you look very WEIRD with big thick bottoms under your not huge loose dress.🤦🏾‍♀️ Also, I don’t have thick loose, not touching the crotch, bottoms yet so I am under the blankets as much as I can be.

And the head. I have chronic sinusitis already. Dryness from Sjögren’s disease means your mucus becomes THICK and clogged up. A haven for demons that cause sinusitis. I woke up from a weird nightmare because of it! I had surgery to remove my (already removed as a child) adenoids and tonsils. I had complications so I had to return to the surgeon where they plugged my one nostril with cotton wool.

After the post op visit, I went to worship with some young university girls. They discussed how apartheid doesn’t matter and nobody suffered. It’s a dream, of course the topic won’t make sense! I tried to speak up but they were singing too loudly. I walked to the front and was weeping as I thought of the (real) things I’d lived, my relatives had lived, society. I had to tell them apartheid was pain that continues to live on. I reached the podium, stood in front of the lectern and told those poor girls -all African-to sit down and listen to me because I had lived what they were dismissing!

Except, I couldn’t talk! Every time I said a word, my plugged up nose would produce a grunt of a snort. My throat would close up and my mouth would open but my throat could only grunt or snort or snore… I was so frustrated! I needed to make them understand!

Then, some kind of awful snoring sound that came out my throat woke me. And even when I woke up with a start, I still couldn’t breathe. Really? Why couldn’t I breathe? Why was my face sore? Why were my glasses hurting my bones when I went to put them on? Sinusitis.

Dry, dry nasal passages.

I got my spray out, used it, realised my entire body was in excruciating pain, the kind of inflammatory pain that has you reaching out for prednisone and morphine, and got back into bed. I don’t have prednisone. Nor morphine. Not even fentanyl. 😅

Then I got out of bed. I couldn’t die yet. There was medication to dole out. Then I tried again.

But I was in too much pain so I got out again and took pain meds.

Then I lay down.

And got up.

And lay down.

And got up when I recalled that I owed Karen a reply to her question so I sent her a voice note in the closet for privacy.

I told her I get no rest and I’m in terrible pain but nobody will let me rest.

And boom, the evidence walked in.

See, I can’t leave their craft accessories with them because their impulsivity and poor focus make them lose them, take them to the garage, leave them out in the rain, use too many pages just doodling and not the actual craft…So even when I find activities, I’m still needed so we don’t keep spending money replacing things that shouldn’t need replacing. But that means, no rest. No change to decompress and chat. No opportunity to lie down, turn the humidifier on and be forgotten and not asked to DO.

I was trying to die. I wanted to BE and not DO.

But they kept waking me up.