They said I should write a book

A post in a Christians with Chronic Illness and Pain group really resonated with me. It’s something I shared on here already, I believe. The person asked if she’s over sensitive or what? She has less time for nonsense now that she is living with incurable suffering. She can’t tolerate trivial conversations that go nowhere, and has no tolerance for people who don’t get it.

I wasn’t the only one who agreed with her. I recently cut someone out my inner circle. They kept reaching out to complain about her very loving husband and two healthy children who she has said herself, are victims of her very harsh temper. She knows she shouldn’t be as cruel and verbally abusive, but she is. And I am tired of the, “My life sucks. I have to parent two older, able to communicate, neurotypical, healthy children who can play together without my fearing they will destroy something or harm them and have to live with a loving husband who cooks when I order him to. How horrible is that??” Seriously, if you read her texts over the years. you’d want to cut your own neck instead of cutting her off.

But my children need me. So I told her that I hope she finds a community that understands her but I am not it. Oh my word, people truly think you owe them access to yourself the way THEY want to access you! I come from a generation where not everybody even had a landline! Let alone a cellphone! I would take the phone off the hook if I didn’t want a phone call at a certain time and that was that. Nobody demanded I never NOT answer the phone. I made it clear that she can send me an sms, she can email, she can phone me. But nope, she wanted to be in my WhatsApp world.

Nope. My WhatsApp world is for people who aren’t draining. I don’t have the bandwidth for nonsense anymore. If you are using me to vent, stop. Go vent somewhere else. I need proper friendship and true community, where we all care about each other.

As I sit here in pain even in my sternum, I think back to two people who were in my actual presence -not counting the sweet ones who have sent money for meds or surgeries, incontinence alarms for the children, Hope and love -who are what I have time for. One person is the one in the photo above. We didn’t have a diagnosis but she knew I was suffering. I have spoken about her too. How she raced down the mountain so she could stop me over using my body. I don’t know if the depth of “I matter??” I felt that day. It’s not like I had told her my body was aching. We didn’t talk about me. But it was on her mind. That is someone safe. Someone who sees me even when I’m not actively trying to open her eyes to my reality.

Another one, also happened on a Sabbath. After a long day at a church the adulterer was preaching at, I went to the car, silently hating the long drive home as it meant I still had a long wait before I could take the pressure off my swollen bones. As I chatted to an old friend, she asked, “But how are you? I worried about you when we were kneeling to pray. I didn’t like knowing you also knelt down given you live with so much pain.”

She opened the dam. I just burst into tears. Kneeling HAD been hell. It’s always hell. “But why would anyone bother thinking about ME?? I matter?? I hadn’t even said anything about myself all day! It was about her and church…”

That’s what my WhatsApp is for. For people who hear me. Not for those who want to educate me on things I know more about because I live them, not for people who forget how privileged they are to have healthy children. It’s for people like a young lady who didn’t realise till this week that the twins are autistic.

It’s for people who express shock and sadness because they fully comprehend what the impact is of what I’ve told them. My inner circle is for those who admit that parenting a neurotypical child is hard and they appreciate having a break when the child goes to her mother (child’s grandparents)so how does a homeschooling mother who is constantly with her multiple special needs parent cope? It’s in her wishing she lived nearby to do anything to take the weight off. It’s THAT. It’s living her reality which of course, isn’t trouble free, while also seeing mine properly. It allowed me to tell her honestly that I felt so jealous when she told me her daughter had gone to spend the holidays with her mother. The privilege of support, rest, is appreciated by those I invite into my world. And that’s seemingly typical for many of us who are sick.

We want to be seen just as well as we see others.

I remember these two ladies who saw me because it’s so rare for an invisible illness to be seen, and for people to acknowledge what is not spoken by the sick one. I’ll never forget it.

I survived reflux and baby colic by telling myself, “Soon they won’t be babies. They’ll take care of themselves. They won’t need me. I’ll be able to get chunks of time to myself.” I’d been spoilt after all. As I keep reminding you, by age six and seven, my oldest two were asking to watch sermons (aimed at adults!)! And they did watch. Sometimes watching two, and the sermons were over an hour long each. So I would cook, clean, not even plan any lessons because they just moved forward each day and they didn’t need extra help, read my Bible, minister to depressed people without interruption. If they weren’t watching, they were playing peacefully together.

I had breathing space and I appreciated it a lot. I was very thankful that I’d come out of the sleepless and rest-fog of their baby and toddler years.

You can’t rest or relax with ADHD. Even if they are playing happily alone, they are probably being destructive or dangerous. They need someone watching them all the time. We are in a terrible heatwave and there’s a fan in the hot garage where there’s also a play room. My 11 year old – it’s always HER- damaged that by putting ribbon in the fan while it was blowing. Now it’s all coiled up around the turning mechanism.

I had to buy a new vacuum cleaner because of her. Do you know how expensive they are!? All because she had let pool water into the garage and thought she could vacuum the water up. The vacuum was NOT one of those fancy wet/dry vacuums. She didn’t tell anyone. She never does. Either vi or I find it and I immediately know who the culprit was, and when I ask her why she did something, she asks, “How do you know it was me?”

Microwave I was using to heat my heat packs for my bone pain? Dead. She killed it. Wardrobe shelf in her room? Broken. She smashed it in anger.

School time? My six year old twins are both needy in different ways. Remember, I’m not meant to be teaching. I’m meant to be resting my body. But our talkative twin wants to do more school lessons than she needs. That is the down side of being gifted. They want more. They crave more! And then gifted and autistic means you just know that what you want, is what others also want for you.🫣

Her non talking twin will pull me when I’m teaching. And if I try refuse, crying ensues and the class is still disrupted whether I leave or stay. It’s bad. As I told a friend who asked how I am today, I wish they made daycare centres for intellectually challenged children where she could go and be watched and kept safe but not forced to sit in a chair and learn like all the other places want. But if other parents can’t find such a place, and I’ve never come across one except one that very quickly shut another mother down when another mother…Ok, let’s try that one again.

A mother in one of the groups, asked where her child could go. She was virtually describing my non speaker so I kept an eye on the answers. One place needs them to be potty trained. One place is one I had seen, a place a friend called Mercy had looked at and suggested, but their staff member very quickly stated they only take care of cerebral palsy children, not autistics who can move around and need one on one care.

I am willing to send her aide with her to a centre and I just suffer teaching the others till the government lets them in, which can take more than four years!! 🥹. I have no option. He has two daughters so maybe he’d be willing to change the diaper? Maybe? We had males changing diapers in a centre I worked at for disabled adults in the UK. But until I find a centre, I can’t even ask anyway.

Then I have my oldest two. My son was meant to put food in the fridge that I’d killed myself cooking yesterday. I chopped even when my hands got sore. Chopping baby tomatoes in half, chopping yellow and red pepper, and a block of firm tofu. Imagine being in pain chopping such small things! Mt feet were so sore at night. I woke up today with bones screaming. Even in my teens, chopping butternut was beyond me, but this..? It truly is a progressive disease. To see all that effort and food go to waste was awful.

We’ve had a heatwave. And even if we hadn’t, we always put the food in the fridge and I have always taught that. Alas, the food was NOT put in the fridge by the one on kitchen duty and it is off. All the tofu! And it had looked and tasted so good! It was a scramble with spinach, red and green tomatoes, yellow and red pepper and I’d mixed cumin, coriander, paprika to a bit of water and seasoned it with that, with a sprinkling of garlic powder -and obviously, salt. All gone to waste. It had been enough for two meals! And as I said, my six year old doesn’t care about mommy cooking, mommy must teach as soon as the six year old is ready. I fought for that cooking.😆(To go with sweet potato, cucumber salad, glazed carrots.)

But that’s not all! I then have my 19 year old in a different province who has a pest after her. And it’s the security guard working in the complex she lives in! In the morning no yesterday, she told me that he had told her to go talk to him in the security hut after classes. I told her I didn’t trust him and he sounded like he’s trying to hit on her. She said no way, he’s “normal.” He’s been there since her brother was there and now is not there anymore. Even worse. He’s watched long enough to know she’s alone. I told her men don’t care what age they are. She brushed me off.

Then afternoon came and she told me I had been right. He was definitely acting like a creep, despite his old age. She even told him her unit (house) number because he was so persistent! She recorded him. And later that same day (yesterday, when I started typing this) he dialed through to the unit on her intercom. He said he had tried to call using his personal phone but it didn’t go through so was using the one owned by the Complex. He asked her which mobile network she’s on. She then pretended she couldn’t hear him till he ended the call.

Very, very bad. I am terrified for her. But her dad is relaxed. He thinks that as long as he’s moved to another location the risk is gone. But he will always know which house she lives in and that she’s alone. I remember some pastor in that same province whose 21 year old daughter was found deceased in her gated complex flat. I am not happy about how blasè she and her father are. We need to be vigilant.

I have cut my post short. My sick girl is just screaming too much and my leg pain is extreme. I can’t think and I think that pretty much sums up this kind of special needs parenting. So many needy children day and night means very little sleep, and very little time to think. I cried yesterday over how I can’t even utter prayer without being interrupted. How do you fuel up when the fuel pump gets stopped before you’re done pouring fuel into your tank?

I can’t even live in hope anymore. It isn’t getting better and I’ve seen enough adult autistics with intellectual challenges to know it most likely will NOT get better.

And so, I leave you with a small positive.

We’re done – with Maths K! We had a ‘final exam’ for our Kindergarten Maths today. And despite all challenges…

Like a twin who found crisps meant for everyone for Sabbath and crunched loudly,

and despite being crawled on,

Our girl got 100%. She finished a whole year’s Maths syllabus in six months. Which she said was too long! And we are in her final English and Literature chapter. They’re still doing sight word revision but she already knows them and needs no revision. And she will learn more about antonyms-our current lesson-in upcoming years too. Mind you, I don’t recall ever learning antonyms when I was six. But then, I wasn’t American when I was six.😆But I do assume they will review them as she gets older.

Another positive is that my 11 year old thanked me for keeping the notes and letters they write or make for me. She told me that her father only kept one thing, something her little sister made. I keep them because each one encourages me. In school, we were told to make things for Mother’s Day or Valentine’s Day. As a homeschool teacher, I don’t even mention those days, so these are purely from the heart. To know that curse is done away with, means a lot. My mother was not only distant but cold that the only notes I wrote were to ask for necessities, as I recently shared. For them to be able to tell me they love me is amazing. I marvelled yesterday how as they walked out the door, Amarissa casually yelled, “Bye Mom, I love you!” I couldn’t believe I could have a child who feels love for me and wants me to know it. It’s always beenI wanted to have a Cosby Show type family. Where feelings weren’t taboo, and love was the ruling principle. I have achieved my part. And THAT, is encouraging.

It’s 16:59 on a Friday. I’ve just finished making up a new batch of scrambled tofu with baby tomatoes and spinach and peppers. I’ve made sure I put it in the fridge myself!

Shabbat shalom, no matter what that will look like. Even in the hurricane, may we feel seen and strengthened enough to try survive yet another day. Many others have fainted along the way and chosen to end the suffering while bearing less. So I mean that with all my heart. May we find the courage to choose life, for another day.

Next to God, the mother’s power for good is the strongest known on earth. AH 240.1

My mother hated me. Since the day I was born dark skinned unlike her, she hated me. I looked too much like my father too. And what made it worse? As I grew, people from church who had known my father when he was still married to the love of his life, his first wife with whom he had two sons, would always comment about how I looked like my dad’s firstborn son.

He was tall. Dark. Handsome. Did I mention dark? And my mother hated him before she even had me. She erased him and his brother from my father’s presence. When my father’s first wife died, my father had promised his young adult sons that their home (Chosen by apartheid officers) would always be their home even though he had now so swiftly found a new wife. A woman only two years older than his firstborn son! He promised the home he’d gotten with their mofher, would always be theirs.

But my mother made sure they were not only evicted, but didn’t even get a POT that belonged to their mother. The dining room table and chairs I sat on till the day my last parent was buried? It was bought by my father’s first wife. A clock we used all my childhood had been in use since my brothers’ childhood.

It was as if they weren’t to remember they had a mother. But not because she wanted to be a mother to them. Nor to me. The one who looked wrong. And so, I grew up never being seen. Nobody praised me for calmly reading my books, not making a mess. Nobody thanked me for ironing and cooking when I was 13. I was not seen. Nobody acknowledged that unlike my older siblings and my younger, I didn’t cause any stress because I never drank, didn’t make babies while drunk, didn’t make them sit up till the early morning waiting for me to return from the tavern.

Instead, you know the insults and physical abuse I endured. My good qualities were not seen. My good qualities are still not seen by the adult meant to be my partner in life. I ensure Vi and our aide know they she seen and appreciated. I praise them to others in my circle.

And my children? They arise and call me blessed, à la Proverbs 31. Ok, they don’t really. But they see me. Literally too! My ten year old son told me to stop tightening his sister’s locs as I was sweating “terribly” and it looked scary. We are in the middle of a heatwave here.

Look at the cool nature of our hair. This is the part I didn’t get round to tightening this evening as my body is fighting extreme pain.

Compare it to the bottom (the roots) that have been latched into submission.

I love the versatility of our hair, the way we can all have natural hair but maintain it differently.

She herself ensured I knew I was seen. Nothing new there, I know! But it was what she noticed that made me feel warm. She told me, “Mom, I’ve seen the books in your bookshelf. There are so many about understanding and helping children like us! You care about us! How come daddy doesn’t read about us? He only cares amour business, that’s all he reads. But you care about us. I’m proud of you.” 😅

Never did I consider what my books would symbolise to the children.

The love I have for them, is seen. The sacrifices I make, sometimes are seen, by them!

And the way they talk to me, the things they write and say, show me they know they are seen too. Yet another generational curse -broken.

I also know I am seen by my Creator Who is ever by my side or whose angel is ever by my side. Never forsaken despite how alone I may feel. Seen. And so are you in your sphere.

Woman should fill the position which God originally designed for her, as her husband’s equal. The world needs mothers who are mothers not merely in name, but in every sense of the word. We may safely say that the distinctive duties of woman are more sacred, more holy, than those of man. Let woman realize the sacredness of her work, and in the strength and fear of God take up her life mission. Let her educate her children for usefulness in this world, and for a home in the better world. CE 178.2

Autism comes with its own symptoms. Social communication weaknesses, inability to understand nuance, hand flapping or other stims that help them feel more at ease – regulated. Different situations or conditions make different autistics feel the fright or flight sensation way too frequently and for things that wouldn’t phases a non-autistic – the sound of a car, a garbage truck, the ocean, waves, wind, kettle boiling…

But autism also comes with its ‘friends that stick closer than a brother.’ Some autistics are average or above average in intelligence. Or gifted even, like my talking twin. But others have friends like “intellectual disability,” like my ten year old and his six year old sister. ADHD is another one that likes to attack itself to autistics. And one that I’m focusing on today, is gastrointestinal problems.

Autistics are four times more likely to have tummy issues than non-autistics. My son is lactose intolerant and has loose stools. My six year old has always had times of constipation which have responded to prune puree and laxative syrup. Until now.

Above in that photo, is her trying vainly to push out a LARGE amount of stool, as shown by the x-rays she had at hospital last week. Yep, my readers who don’t watch my channel don’t know the horror we went through last week. If you check my YouTube channel, you’ll get a glimpse. She has slow gastric emptying -which is sadly quite normal but very painful, causing nausea, irritability. The stomach empties the food out way too slowly, so it collects. And she is currently also dealing with a gastroenteritis attack. Talk about two bad reasons to be feign relentless abdominal pain.💔

That’s where we are now. Laxative syrup at high dose, prune juice, prune puree and a suppository are not flushing out the large amount of stool she has in her system. But the medical option- using colonoscopy prep meds is not likely to work on her. The doctor is very aware of how disgusting the mixture tastes (Don’t we who have had colonoscopies know it?) and so for an autistic, that’s already a huge no no. For those with taste sensitivities, it will feel like an assault. Add the fact that she doesn’t understand why we are giving her these things, and you have even less chance of the very large needed dose being swallowed. If she swallowed it all, it working would also cause her a lot of distress.

It is terrible when your child gets so much intervention but it doesn’t actually help, it just reduces the pressure a little bit.

She’s on heavy pain medication but it then adds sleepiness and wooziness so I didn’t give her any of the sedating type one before her OT session today. But without it, she screams, and even with it, when it wears off, she will scream for a long time and no amount of belly rubbing like suggested for IBS-C, makes a difference. Has never helped me either, to be frank. It leaves me and her big brother, so helpless. And she wonders around pulling us here and there screaming and not knowing that drinking more will help.

Autism has rude friends. Unfriendly friends. Friends that hurt both body and soul. I wish she could understand that she needs to drink even though she doesn’t want to. I wish she understood why certain foods are bad for her digestive system. I wish she could understand why she’s suffering and that we are trying to help her.

I wish she didn’t need to understand any of these things, anyway.

Blessed are those whose autistic loved ones have very, very few friends.

DO NOT READ IF YOU DON’T WANT TO BE REMINDED THAT INCURABLE AND CHRONIC MEAN THE DISEASES ARE ‘every single day.’ THIS POST IS MY REALITY. HE USED TO CALL IT “complaining” (Negative, ‘You’re so ungrateful’ connotation) when I’d mention how tired and stressed and in pain I am and that I need a rest. It’s not. IT’S MY STATING MY REALITY SO HE CAN SEE HOW MUCH I’M GIVING WHEN IN TRUTH, I SHOULD BE RECEIVING. FOR THE BLOG, IT’S SO THAT IF YOU HAVE SOMEONE WHO IS SICK OR HAS CHALKENGING CHILDREN, YOU GET INSPIRED TO HELP THEIR MENTAL HEALTH BY ASKING WHAT KIND OF DAY IT IS, OR TO ACTIVELY HELP BY BABYSITTING, GIVING A BACK MASSAGE etc etc.

I now believe the dry and ugly lip- according to my mother and Black Xhosa cashiers- was the first sign of Sjögren’s disease. You know the irony? I truly believed ‘he’ loved me because he acted like he hated it when my mother would criticize my lips in front of him. He’d tell her my lips were fine, to leave me alone, and he kissed me often. It’s funny. He told her to leave me alone two weeks before she died, while he was with his hoochie. I wish he’d told himself to leave someone else’s wife alone! But anyway…

This is how Sjögren’s can present. With dry lip or another part of your skin, for years before the other symptoms and oh my word, the other symptoms are heavy on me, readers. I am only moving because of guilt and necessity. I’m teaching because I don’t want to NOT teach but then get sicker or they get sick and then miss more school. So, I force myself. The back pain is horrendous. I even have muscle spasms! You can feel the muscles contracting and expanding and you just want to hold them still! As for the lips, we moisturise all day long, multiple times a day. Many use cracked heel balm many times a day, on their lips.

Yesterday, I drove my daughter when really, I wanted to lie down. The stomach pain is BAD. Lack of moisture in my intestines and stomach has caused a whole lot of constipation and a whole lot of pain. (That phrase is all wrong!) During one point while driving, I was curled up trying not to groan in pain.

I need to rest. Instead, my girl wakes earlier and earlier. I can’t read my Bible, can’t read anything relaxing to take my mind off the daily round of stress, and my nights are disturbed anyway. In the same way people get disability for AS, there are people in the group who have to take it because of Sjögren’s. What a cruel trick, to give me two autoimmune diseases that both cause pain and suffering.

Then, the twin thing…Both needing me at the same time. My other twin decided not to have lunch, but to get a school reading book and read five stories from it to me. FIVE! Very exact. She didn’t flinch when in the background, her sister started screaming and crying. My tension increased. But I didn’t want to abandon her because of her sister. I don’t want them ever feeling their sister gets too much attention.

I am faking being ok a lot. I don’t even have time to cook for myself, folk. Zero. I can’t eat the legumes they can. The onions, the couscous. So I need my own separate meals and I just don’t have the ability…And their dad returning from his holiday in Japan won’t change anything. I’m still the one they wake in the night. I’m still the one who listens when they read. Still the one my not many words twin asks for “chocklit” after seeing it on the Starfall educational app. But my stomach is already sore and full, heavy and bloated. And he will never care.

Cursed is the wife who is not loved by her husband. I need a mommy. I wish I had one. I wish I had memories of having a mommy.

My dear 11 year old stunned me yesterday. She was talking about how a husband should be taking his wife to do tours of Japan…I didn’t even bother reminding her how the same man who can take all these days off work refuses to take me to the Emergency room “in case I’m late for work.” And on that note, he loves boasting that he’s a CIO so everyone fears HIM. So..in the same vein, what would he suffer if he was late for taking his sick wife to hospital? Nothing. Unless of course like in 2016, he gets to work and phones his floozy before their work days gets busy.

As she went on about how he’s unloving, she asked, “But whose idea was it for you two to get married?”

I told her, “He asked me to..” Let’s not go into how he technically never ever asked me. He wrote it in a CARD that he left by my bedside for my friend and I to find after our exercise session.

She asked me why I had agreed to marry him. I told her that I didn’t know he’d become even worse than he had been, he had promised to stop being too close to other women, and his sermons told me he loved God. But he lied.

She then comforted me, “Don’t worry. I also thought he was a kind daddy. But now I know he’s not. He lied to both of us.”

I have nothing else I can say. To think I owed it to her birth family to remain a two parent family when as soon as her birth sister heard about he is as a husband, she wanted me divorced and free. Assumptions. She’s a wise girl who immediately understands there’s no cure for a narcissist who doesn’t want to get a heart.

I already felt guilty in the morning when Twim B decided I had taught her twin long enough and she wanted me to go where she wanted to. Thankfully that little tussle didn’t last long. But it wasn’t good because all my ADHDers need hands on teaching and I can’t be hands on when I’m being pulled around.

Fast forward to tonight and the guilt hit again. Yes, it strikes during the day too but this one was more in my face. I was making stew for the children and Vi, and also planning and choosing school and skills work for tomorrow. I had asked Twin A’s biggest brother to brush her teeth while carried on looking at which lessons should be done tomorrow and what resources they need. Eg. Different book, the

Then I heard it, “SOMEBODY!!??”

Twin A! Was she in the toilet and needed toilet paper? I left the school work and went to look for her, finding her in bed. She’d wanted someone to put her to sleep! And nobody had🥹. She had to yell for it. The guilt was terrible. I’m meant to be her soother. How could I forget her when I’m the one who had told her she could sleep?

My children went to go drop ironing off at an ironing business earlier today. Yes, I’m jumping from one time of day to an earlier time. The sweet employee told the children that I “gave birth to beautiful children”, meaning all of them! My poor Amarissa said it made her feel sad because she wasn’t born from me. I told her the fact that nobody can tell there’s a difference between how she is loved vs how her siblings are loved shows how she’s a natural part of the family. She felt better.

And also, her talkative twin was then reminded of how Ammy had begged for a baby sister. “You just had to be patient when you were asking for me!”😂she told her sister.

Speaking of ‘family…’

I posted a video on YouTube and recently where I share about the financial abuse I’m subjected to and have been subjected to. How my pitiful wage for caring for, raising, doing therapy admin, school research (Everybody has blanked me despite multiple attempts for a school for my boy) is scrutinized as well as purchases I make for my family. I don’t have my own account except the one the pitiful ‘stipend’ goes into, so everything I buy is seen by the Boss. And the boss has been claiming we will be broke by year X because of my spending.

Yes, not because he gave away half a million rands to his whack brother despite my definite no. Not because he’s secretly giving away tens of thousands to his floozy. But because of the money he knows of, that I’m spending on members of our family. Not because last Wednesday he paid for lights to get to Tokyo for a marathon, hotel fees, your fees for four days after the marathon, but now extra hotel fees because the Dubai route is shut, different and extra flight ticket costs, and more hotel nights. But somehow all the money that will allegedly run out is my fault and never his.

Miss me with that. I don’t fall for manipulation, gaslighting and control. Especially as the ‘money is running out’ only started out of vindictiveness after I had found out about the money being spent on his ho. I don’t bother reading any “financial analysis” that suddenly comes because it doesn’t have all income included. Nor all outgoings. That analysis would have worked when I was 20. Not now. I have found myself now.

What I do think about are bladder issues. Pun intended. My 11 year old is still having pee accidents despite the consistent ‘every 29 minutes’ alarm I set throughout the day. An alarm she hates and complains about. She came asking for new underwear and pyjama bottoms this evening because somehow between toilet visits, she’d had an accidents no physiological reason. Not good. The washing powder, fabric softener, the clothes and under clothing that need daily washing…I have more pressing things than worrying about a man who isn’t sure when he will return from his holiday.

So, what gives me a piece of happiness? Good things, good people, funny moments. Like my six year old telling me I don’t need to teach her about nouns today because she studied what nouns are already from somewhere she can’t recall. She was right. I just got her to do the exercise linked to the lesson and understood it.

My dear Amarissa might be behind academically, but she’s doing well with her Grammar lessons despite her learning disorders! Same with comprehension skills, She got nothing wrong for one of her tests and I know that that will motivate her even more!

And my ‘scratching everyone and pulling their hair out their scalps’ twin daughter was quieter today. No screaming and attacking! That’s a win, right?

And so, as I now prepare the last child’s school work (Computing) at 22:00, I thank you for sticking with me. Flydah, thank you for showing me you see me. Karen, I am thankful I can put some of my venting on here so you don’t have to deal with all of it!

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.

I couldn’t walk.. for a while today. Last week, I took my walker out to the garage. I hadn’t used it in months! That’s how well Rinvoq is working! But today, I had to ask my children to bring it in, all because of their sister.

As you know, she has had a rough few weeks that have been progressively getting harder and tougher on all of us. She has been screaming randomly, crying for prolonged periods. And we don’t know why. Before, she was crying because she was having a tantrum-she wanted something and if we couldn’t make it happen, the tantrum starts, stuff like that. This was like she’s in pain. It was horrific. She was so loud that her aide could hear her while parked across the street in his car, our house closed up as tight as possible so as not to bother the neighbours. When she starts, I go round the house shutting all doors and windows.

It is horrible. It raises my already existing anxiety and stress from raising multiple special needs children by a lot more. I already don’t want to get up and face the day as it is! So, yesterday was one of those days. Multiple times a day, for long periods. Children discomfited by their youngest sister, all trying to figure out how to “Stop her!” I had to try comfort her while telling her irritated older sister that she wasn’t doing it on purpose. I gave her pain meds, I gave her meds to stop stomach cramps. I wondered if it was the Ritalin causing it. Was it the side effect of stomach pain and nausea? Or headache? What if it’s pure emotion caused by it? Reddit threads are full of adults on Ritalin unable to regulate their emotion and suddenly crying and feeling extremely emotional.

This is what she did to her poor sister’s lip. Oh my word this life is soooo hectic. Speaking of my 11 year old. Poor girl has gained massive amounts of weight. She was so hungry she was waking in the middle of the night and making noise looking for food. I took her off her antipsychotic in case it was the cause. But then today her emotions were .. psychotic. She was crying for no reason. She was very angry. The very anger that had made us put her on the medicine. Irritable. And by this evening, she’d told me she wanted to kill her father – twice.

So, back to Abilify she went. I’ve emailed the paediatrician to see if there’s any other option. Risperidone gave her that horrible dystonia where she couldn’t control her muscles including her tongue. Shaking, head pulled down sideways, tongue out her mouth. It was awful. I don’t know what else can be done. But murder? Not an option!

I had given her screaming sister only half her Ritalin dose yesterday. But nope, the discomfort that she was feeling – physical or emotional- didn’t care about the reduction. She still screamed. One time she aimed for my eyes. It was terrifying having to quickly get jk before she tried again. Another time, she came and sat on me. Mainly on my right leg. And that weight, is what has killed my leg. Also, I changed her diaper too. Her father gone to Tokyo to go run a marathon, brother too sick to even count as existing when it comes to handling his siblings. Pain.

And so, today, I struggled. The pain, the weakness took me back to those times when I’d almost fall. I had to get my walking frame and use it.

Thankfully, it ended after three hours. By the time my talking twin wanted me to exercise with them, I could walk. And I could exercise with them just as she was about to start crying because her older sister was telling her they don’t need me. Needed. For comfort and for exercising.

They were eating avocado. Sister in pink told me she looked like she’s autistic because of the noise canceling headphones. She didn’t see the irony, given her sister is autistic!😅

Today? There’s been grunting that usually leads to the uncontrollable screaming but so far so good. I hope she stays stable. And I hope her 20 year old brother who had wanted to avoid the doctor, starts recovering. He’s been given steroids, antibiotics and other meds. “You were right, my sinuses are very inflamed.”

And oh I pray so hard that Sabbath won’t be as awful as last Sabbath.

Please hope so with me!

My positive of the day is again, how in love with learning her twin is.

Meanwhile, she leaves her poor siblings totally blank. The other day she felt we were leaving her out and came barging in telling her siblings that she learnt about Hasui Kawase who was Japanese and he did landscape paintings and cherry blossoms which were very beautiful and then his paintings were destroyed in an earthquake and then he died.😅🤣

She had already lost them at his name. They had no clue what landscape was…

And no interest in paintings and Japanese history.

When our Maths lesson ends, she asks if we can continue later. Thankfully for my body, her ADHD takes over in the afternoon and she forgets she’d wanted to continue with Maths.

And nope, the screaming has begun. Oh well…

Hey, at least she’s not screaming in her bedroom instead of sleeping. She ‘only’ screamed for about 10 minutes this time. It’s a semi win.😅