Chronicles of a Single Special Needs Mother!

Sjögren’s disease has my digestive system in a stranglehold. Twice now – the last two mornings- I’ve had the burp of fermented food! I googled and yep, Sjögren’s does that! Your ability to move the food out your digestive system slows down due to lack of liquids in the digestive system so you have all the issues I have. The constipation, feel full but still hungry, burping OLD fermented FOOD which makes me want to vomit, pain so bad I woke up Friday in the night thinking I was having some horrible kidney stone pain.

The solution? Or at least, the attempt to reduce the symptoms? Have small soft food meals throughout the day. But I can’t do that. Eating while stressed is bad for the digestive system too! And during the day, from 6am to 20:30, I am stressed and constantly interrupted. If the children are on a drive, I record or edit, I don’t relax and eat! If not, I’m preparing school or reading up on activities to improve executive functioning…

I don’t have time and space to eat during the day. And eating one big meal at night? Worst thing a Sjögren’s person can do for their health. I’m in trouble.

I have bad nights… Horrible days. I lived with no night time AS pain and reduced daytime pain for six lovely months until stupid Sjögren’s. I had energy but now Sjögren’s has stolen it. I wake up and have to almost pull my eyelids up to put more ointment in my eyes, drink more water. But still, I catch myself reflexively rubbing my eyes and then getting scared I’m making the existing damage much worse.

I cannot accept this. I don’t want to. I want OUT! I don’t want this life. I am tired of never ever being ok! I am damn tired of not being ok. When the junior guy at the opthalmologist’s was doing my tests, he was shocked I’ve worn glasses for 35 years. I thought, “That’s nothing! Try suffering pain since age 3…42 and a half years of misery.”

I am tired. I wake up and force myself to shower, get dressed but the truth is, those use up precious energy.

I am ready to depart and wake up like Lazarus. Perfectly healthy.

But in the meantime, though it’s killing me, I will keep my children -from the sick 20 year old to the youngest, eating. I was sooo pleased they wanted more! But oh, I wish I had a partner to take my little ones out for the day so I could rest.🥹

I..want..out.

By the time I ended this post, she was crying a loud. 6:20am. A very long tiring day has begun.