“Thank you for these poems, Mommy! They’re so amazing!” Said my little joy, Naynay aged six since the 16th of this month.❤️ “Thank you for doing school! I luuuurve school! It’s my favourite thing!”
My girl is proving to be a challenge. She’s perfectly at grade level for Maths for America, advanced for South Africa as we’ve always known and as our educational psychologist noted. She runs through every Maths situation and understands the first time I explain it then races through before I’ve given the next instruction! She has a wonderful memory. Glorious memory that even made her ten year old sister exclaim yesterday.
I have added some Cambridge subjects to her school life because she has such a thrust for knowledge. As I showed Ammy what she’d do next (I put them at the same grade level for Geography), and what her textbook looks like, Naynay exclaimed, “I’ll show you the two friends! There are two friends to teach you!”
I had no idea what she was talking about. But she sure did! We had only done two lessons in one day last week or the week before, and she recalled that there were two children in the textbook who teach! Her sister had leafed through the book and SHE hadn’t noted them!
So what’s the delightful problem?
She’s too ahead with her reading and spelling! I’ve moved onto a new grade for those even though she’s at the lower kindergarten level for Maths. But she smashed the first story in record time! So much for it hopefully being challenging!
But as you saw in the video, a child who can read the word “ awesome” is NOT going to struggle with these words below. Nor with the activity! She did this type perfectly twice before so I don’t plan on making her do it again today!
She noticed the box with her next grade level had arrived and she was excited!! So excited! “Look! Look! Our name! It’s our name on the box! The Good and the Beautiful!” (No, I can’t tell you why it’s “our” name.) She quickly grabbed her grade 1 reader. And didn’t even struggle except for typical ADHD stuff.
It’s glorious having THIS kind of problem! I’ve bought lots of books at different levels that will be stimulating and challenging. As she said about her list of words in her current curriculum, as she said about Maths, “This is so easy! It’s boring.” And so, on we move!
I stupidly tried to sleep on my tummy. Bad mistake. My neck doesn’t like being turned. Nightmare woke me as usual as the pain reached a crescendo. Hey, it’s better than when I forgot to take the pillow away. I woke up with my right arm down to fingers paralysed, totally convinced that the arthritis in my neck had now permanently damaged my nerve, imagining having to tell the rheumatologist and get more testing.
I’m tired of the testing.
Then I couldn’t sleep. (It’s currently 3:47am) I, even more stupidly, then read the news. An obese journalist died young. Was she dealing with thyroid problems or other health issues that caused her to be obese? She’s younger than I am… Then again, look at me. I had foolishly (See a theme?) hoped I could stop my anti hypertensives but nope, after a few days of not using them, the Rinvoq induced high blood pressure returned and I had to start them again yesterday. So maybe we are both as unhealthy as each other, thanks to AS. My children’s dad did say so helpfully on Sabbath, “You’re going to die. I’ve been listening to a book about sleep. You’re going to die young. You’ve never slept in all your life.” Yeah, very cheering. Especially as it was after I came across research stating that just three NIGHTS of bad sleep raises heart attack risks.
Change topic.
Oh, but now I can’t breathe well. Why didn’t I use my inhaler last night? I’m just tired. Tired of all the medicines fighting the disease. Tired of the medicines fighting the medicines fighting the disease- including the esomeprazole fighting the anti inflammatory impact on my sick ravaged eaten away stomach lining. Tired of the Rinvoq constipation making IBS worse so now I take Soflax tablets for THAT.
Tired.
Then I saw how many people have been shot in the past week in our city. The innocent children, the baby, the taxi passengers, the gang violence that is so endemic.
Shared a status about how THAT triggered the “It could have been me” feeling I had when I was about 11 or 12 years old. The Mowbray Golden Arrow Bus Station was close to the taxi rank. Depending on how long the taxi line was, whether my taxi was there, how long the bus queue was and what time I’d arrived there in Mowbray after walking from school in Rondebosch, I’d then choose whether to take a minibus taxi, or the bus.
One fateful day, I decided to just take the bus I was tired. It was there as I arrived. I didn’t feel like going further down to see how full the taxi was or how available it was. Then the bus kept stopping to let people off and on. So much slower than the taxi. But then, as we drove towards Gugulethu, passing through Gatesville, one of the taxis I usually took was stopped. Nobody was moving around. Shops quiet. The driver was hanging out the door held by his seatbelt. The middle passenger had been someone’s relative. Now she was a dead lady with a beautiful perm and an ugly bullet hole in her head. Head blown backwards by the force of the bullet so we could all see the entry wound from our high vantage point in the bus.
Silence.
Fear.
Heartache. I imagined that she was a kind loving mom and now her children would be wondering where she was. I will never forget that scene. It is as imprinted on my mind as the fear when at 16 as I walked to my cousin’s funeral, a gangster who’d been shot in the head, a youth holding a gun came out a house in front of me and I had to walk behind him in abject fear that he’d suddenly turn around and shoot me dead.
Ok. The news was not a good idea.
No sleep.
Too much pain
Chest wheezing.
Time to think about something better. Ok, before that, let’s get the inhaler! I did promise Ammy that I was taking care of my lungs. She had a bad night two nights ago because she heard an ambulance in the night and then thought about me dying and couldn’t sleep again. What compounded her fear was her imagining my collapsing, having a heart attack and dying. Somehow, she links that with the most recent SI joint infiltrations (those deep injections they do into your SI joints) that had – by the time I had driven myself home all the way from Durbanville- made my legs numb so I was stumbling and falling and all three little ones had to hold me up to get me to my room and bed. That traumatised her. She was scared I would fall down a section where we have two steps, and die.
Ok, yet another reason not to try those injections again. Plus the mild pain reduction wears out and they ARE bad for the joints they penetrate.
Ok… That’s again not a positive thought! Hey, the inhaler is working now. Less wheezing but chest sore.
Ok… Really time to dig deep and try pretend I’m not in pain. And no loud noises from my spasming intestines. What can we think about?
School!
My crazy five year old!🥰
I came out the bathroom where I’d been convinced I’d heard her father shuffling around, and went to the front to go start her sister’s braidlocks. Yep, I am trying for the very last time, to get their locs re-started now that their hair is more grip-able. I’ve begged them to never cut their locs ever again. I’m tired. Loose hair? My natural (read-EXPENSIVE) hair potions are used up in a day. My cheap ones, mixed with water for some reason! Put their hair in cornrows? Ammy fidgets with her hair and it looks terrible within a few days. Do wool braids? They style and re-style and do such tight styles that there’s way too much pulling and they’re too young for the traction alopecia nonsense. The missing hair line… Injibhaba in isiXhosa. (Don’t ask me how to type that. The only Xhosa reading I did was the Bible and the hymn book. Those don’t talk about missing edges!)
Got out there, and Nalo called me back to the bedroom to show me what she’d been doing while I was in the bathroom.😅Back I went, leg and hip burning. She was so proud of herself. “I did Maths! Come see! I did Squeak and Scratch!” (Two squirrels who needed five acorns each.)
“See!? Look! I sat down and I did three plus two! It’s incredible! It’s so amazing!”😂😂😂😝😝
“And then I did THIS dangerous thing! The chair was shaking when I was holding on and my feet were up! Ooooh!”
She killed me with cuteness. She is in love with maths. (For now!) Like many children, she loves kinestethic methods of learning. But she loves numbers in general.
I wish we could bottle up her joie de vivre! It would give us so much energy and joy! Life is good for her. She eats, she does school, she talks and sings a LOT during school, sometimes singing the words she’s meant to be reading, or singing the numbers she’s counting…
We could all do with such happiness! We need it.❤️
Warning- I have fellow autoimmune inflammatory arthritis followers so I am very real about what active Ankylosing spondylitis is like for people like me who aren’t responding to treatment. I will include nipples.
She has absolutely NO idea how this long running conversation of many topics has been a help. Because it’s through WhatsApp, I can do other things while still taking a chance to steal a glance and reply. And with the level of pain I’m in, the distraction has been perfect. I’m unable to lie down and rest because of parenting duties, so she’s seeing me through the suffering. If I’m in bed and the pain is this bad, I can’t even try converse because I feel so alone in the war that the other doesn’t realise or can’t imagine. But like this when I have no choice but to keep smiling and guiding and leading… I need the distraction.
It’s mental too. My daughters change their clothes multiple times a day. I had tried to keep their clothes in my wardrobe but I don’t have space. I have quite a few outfits like this- three are thick dresses/robes like this below, and four are onesies. Worn because skirts hurt. And with thick material, you can’t see nipples from a body that can’t wear a painful bra. I mention this because it sometimes comes up in AS groups, women asking if it’s just them who can’t handle clothes and bras. Some don’t wear bras at all. Some stay in their nighties all day… All because of the pain..
That means my own wardrobe space is filled with warm hoodies, normal clothes, and these space stealing style clothes. So I took some out and put them back in their wardrobes. Which then results in this.
I just want to cry. I hate mess. I can’t bend down to pick it up. I got a third of the room done via directing the owner of this shared bedroom and then went to see how much I could get if the other one whose owner was too sleepy and angry to be of much help. See those pink fleece tops by the bed? I reminded my girl to hang clothes, put others in the drawer.
Yeah, that’s not a drawer. It’s all day, every day, it’s draining and frustrating. And I’m tired, readers. I’m so tired of being single mom. Last Sabbath, there was someone constantly coming in so so often that I ended up texting their dad about how Andrew Yates was found guilty of killing her five children by reason of insanity and so avoided the electric chair. I told him that one of the things her defense pointed out was that she “only got two hours a week away from her husband and children.” I pointed out that I get no time away and she was healthy. And I added that I can fully understand the South African doctor who forgave his wife for killing their autistic children when they moved to New Zealand and she was alone with them.
He got the message and told them to sit down and stop bothering me. It should not need to go that far. Surely if people know we are constantly bombarded every day, they should automatically give you a break on a weekend? But anyway, it was a warning that this was unbearable, not that I was about to harm the children. because if anyone would die, it would be me. They deserve life. I’m the one who is stressed and sick. So I don’t understand killing the children. It’s selfish – in MY eyes. I’m the one with the problems, not THEM. Why should I get to enjoy life while little children lose theirs at my hands? Even during the worst of postnatal depression, my wish for someone to randomly come and adopt them, or for them to suddenly be taken into a wonderful baby care facility. Never for them not live. I don’t understand it. But anyway, that’s how it is. Constant drip drip of torture. Yesterday afternoon, my five year old came to the room barely 4 minutes after she’d already come and I’d given them activities to keep them busy, and I exclaimed, “Please, please don’t say anything. Give me one minute. Just one minute, then you can come back.”
She didn’t come back right then. She told her ten year old sister, “Mommy is begging for one minute to rest.” So big sister wisely told her not to come at all because what was the reason she was coming? To ask me to buy them a ballerina dress each. Definitely not something that would exactly make me rejoice! (What they don’t know is that I’d already ordered ballerina dresses and they’re on their way.)
Yesterday I realised that unlike a school teacher, I don’t get break times in the staff room. I’m with the pupils all day every day. I don’t get a drive home like my husband does, who then listens to an audiobook and basically ‘relaxes’ on the way home, leaving the work environment. We live work. There’s no holiday or sick leave.
My shoulder. My thumbs. My leg. My shoulder felt more pain just stirring a child’s bowl of maize porridge. Just doing that. That’s the pain the WhatsApp conversation distracts me from. The back. The hip. The SI joint. The heartache and loneliness.
You can’t feel lonely when you’re alternately laughing and being serious.
So next time your sick friend seems very amenable to chatting, even if there might be long pauses while they feed or medicate or remonstrate or hug a child, please do chat if you can. You have no idea the blessing your conversation might be to them. I crave adult conversation and I’m thankful. Yesterday, as my son ate a clementine, he – who knows full well that we believe God made fruit and fruit trees- asked me how people opened up the peels to glue the wedges together.
That’s the level of conversation I have sometimes. The adult conversation is a blessing. Think about THAT too if you’re chatting to a sick mother who is a shut in. Not all husbands ask about the children. Not all husbands ask about progress with spelling or even know the resources being used to help the children. Some husbands seem to exist only to tell their wives about THEIR work. You sincerely might be the only one who cares and knows and gets frustrated about occupational therapists. A story for another day. If she’s chatting, she might be chatting not only because she loves you, but because she needs you.
Do you know how expensive dark chocolate is? Did you know that dark chocolate has anti inflammatory properties? Do you know how expensive it is??
I’ve been eating a bit each day. On the day I got back from the rheumatologist, I went into the room and then left it unlocked. I went back in and noticed pieces of dark brown on the floor but it didn’t compute till the next day. I thought maybe Reo had eaten a sugar-free cookie in my room.
Then, the next morning while I was medicating Little Miss Reo, and sorting food out for the little ones, I realised Ammy was gone and had been gone for a while. I became suspicious. The recent rule is that they do NOT enter my room at ALL and if they want something from my room, they must ask me to get it for them. But I’d forgotten to lock the door..again.
I crept to the bedroom. She was taking way too long for someone who was apparently just taking all their (Samsung) tablets out the room where we keep them. Indeed, as I walked in, she came from the side where my bed is with something clutched in her palm, and also chewing.
I made her open up her hand and it was my chocolate. I don’t know if I can ever get used to the disappointment. Will j ever not be surprised or sad? We teach our children right vs wrong. I live the right example for them. But like Eve and the serpent, my voice of reason is drowned out by ADHD impulsivity and inability to analyze actions and consequences. It’s not the wasted money. It’s the fact that while I broke my body cooking yummy food that I can’t eat because I’m intolerant to it, they /she can eat it, and then go take what is not hers. Stealing. Every day, something gets stolen. I don’t realise until I need it. Or when I find it where it should not be. Even unopened packages are opened and torn apart. Nothing is safe. That’s why I lock my bedroom. Even when using the loo, I lock because they creep in. Well, I try to. But it’s not normal or reflexive to lock your bedroom door when you go cook or when you go pack laundry etc.
I get hungry. The silly Amytripiline has increased my appetite This time I wasn’t just hungry, I HAD to eat something substantial before taking my antibiotics. I went to the kitchen cupboard and there we go. Two gluten-free rolls gone. Eaten by one girl who can eat wheat rolls, of which we had many. Do you know how expensive gluten-free rolls are? See a trend?
I had grapes. I had crackers. There was NOTHING else that was safe for me to eat that day. The bananas were still green. I couldn’t make food for them then prepare frozen veg for myself. I needed it immediately so I could take my tablets and medicate and teach and plan.
Compound this with constant lying, and you have a constantly heartbroken mom. Many parent report the lies and negative behaviour but you keep assuming your children will act differently. You don’t spend the day thinking, “Brace yourself, you’re about to hear a lie.” And also, I can’t predict where the next onslaught will come from. I can’t prepare my heart. I can’t prepare my stomach. I can’t shield myself.
School equipment. Books. Anything and everything. Sugar that Vi uses. It’s ongoing. Relentless. Constant.
Disappointed. Constantly disappointed.
I think of my child’s biological mother who when we were searching for her, was found to have a criminal record by an ex police officer we first tried. After finding her and cajoling her for years to tell me WHY she had a criminal record, she finally told me. She and a friend decided to go break into a the friend’s ex’s house and trash the place. Breaking and entering. Malicious damage to property. Criminal record due to impulsive behaviour.
There’s always been the background cry about how many prisoners have special needs.
If you can constantly steal from your parent, what stops you stealing from a stranger? Or breaking and entering? Or trashing someone’s house?
I don’t know, reader. I pray God will form a hedge around my children, especially my ringleader child. I pray the disappointment I’m constantly feeling now will not be felt forever. She has so much to give to the world. So much love, creativity and loyalty. I pray those strengths increase and the negatives decrease.
This letter was during the week.
I’ve just had to dispense another, “I forgive you,” hug just now. It’s ongoing. The disobedience, defiance. We have many I’m sorry moments and many I forgive you moments. We have agreed that tomorrow will be a new week and we will forget – till it happens again – all the waste of misused hair spray and stolen food and slavery. (Bossing her brother around while not letting him play with them.)
Impulsivity has many ways of manifesting itself. I’m so tired of people minimising ADHD that I’ve added yet another person to my list of people I reply with a, “Casual, ‘we are fine’ answer because they never seem to get it when they ask what the children are up to then reply with a “My child is like that too” retort.
Example. They saw a photo of my child walking on a wall.
They commented how their child who is HALF her age, ALSO climbs. I responded, “Man, she hurts herself when she is climbing. I hope yours stops hurting themselves soon because it’s really stressful not knowing if you’re ignoring a serious injury or not.” I knew full well that their child is very likely NOT getting down dangerously. And indeed, as I KNEW, the person responded, “No, this one never gets hurt. Ammy must just learn how to get down safely. My child is so different to their peers. They like ladybirds and all the other children are scared of them.”
Guys, my child is different to other children because she eats pencil crayons, erasers, rubber bands, picks at her hair and makes it severely untidy, chews her blanket day and night, and still has no bladder control – day and night. At age 10. I could only wish that fearlessness of tiny insects was what made her and her siblings less like their peers.
That’s what makes this special needs life so lonely. The ones who try relate but haven’t actually put themselves in YOUR shoes and so relate to nothing related to your experience at all. As I said last time, you feel unheard when your cries are trivialised or the abnormal normalised and the stresses ignored. I can’t. I need to protect myself. I’m fighting too much to fight trivializing of major problems.
During EEG
I could have retorted, “Yeah. You and I truly go through a lot. Remember last year when my child pretended they were seeing demons and even told doctors that and we ended up spending nights in hospital while they did expensive and painful and dangerous tests on her to check why her brain was sick? Except actually, it was her psyche that was sick and she just wanted to get attention from a Paed who had taken care of her the PREVIOUS year when she was hospitalised after she hadn’t felt any pain from a spider bite (thanks to her low sensory registration) that became infected till the infection almost took her leg from above the knee down? Wasn’t that crazy!? Our children put us through a lot don’t they? True outliers! They really are different to most kids. I’m so GLAD you can relate to what I’m going through with my sick body that homeschools neurodivergent children while your healthy body sends your neurotypical children to school. And you know frustrating it is to tell them to get up and get dressed over and over and 30 minutes later they’re still not even partly unclothed yet?”
But that would have been repeating a point I’d already made to them when I begged them to stop minimising major things. And I don’t like being facetious even when someone deserves to be corrected.
No more special needs version of casting pearls before swine. It’s a waste of time and a cause of pain, responding truthfully to a questioner who has no real desire to know what your answer to their question means for you.
A psychiatrist told me (when diagnosing our non speaker) that I need someone to take care of ME. Such people do the opposite, they add to the burden. It’s great having a blog. You get to spit it all out and a page can’t reply and show you it didn’t hear you.❤️🥹
(For context about my principles and faith, and what my husband and I used to believe together, picture the most conservative Muslim couple you can. Do they show their arms, legs? Do they were tight clothes? Do their children do swimming or wearing typical western gym wear? Do they admire gymnasts or ballerinas or go watch them? Do they hug members of the opposite sex? That is who we were. That is who I still am.)
My friend has observed a few things. My ten year old daughter, Amarissa, has observed a few things. This very evening she asked me in front of her dad about those different principles she’s noticed in her dad that made her ask if I’m more Christian than he is.
See, years ago, he used to teach that racing, running against other people, etc aren’t necessary. (As taught by our founder. Probably the same principle as the Jehovah’s Witnesses’ no ‘competitive sports’ rule.) His whole theme was that in the God game, there are many victors and nobody feels anyone is superior in strength, power, ability etc. And as my oldest said last year, “What I remember so clearly, is dad asking the church if they could ever imagine Jesus in His long robes taking part in a running race, or in a soccer game.” Paul also taught against vainglory, emulation but rather about being helpful and viewing each other as on the same team.
As a lover of our founder’s writings, I still live by those principles. Unlike my husband, I don’t hug members of the opposite sex. In terms of earthly relationship, I put our family first. He puts his mother and siblings first. (I left and cleaved) And so, with all the things she has noticed, my girl asked in front of her dad, if I would join him in a race if I was well. I told her, “ No WAY!!” I have better (nobler) things I could be doing. Things that are still exercise but not in a competitive spirit and more importantly not surrounded by males who are immodest. If you believe it’s wrong, you’re not going to choose to be in a sea of it.
She then asked if I agree with her dad for running the races. Again, I said no. She then asked how we (She and I!) will stop him. Her first suggestion was to “take his money” so he can’t pay the entrance fees for these marathons. He then asked if she’d seen him pay anything this year. I told her his foot was sore so that’s why he hadn’t done a race this year.
A friend had remarked on this discrepancy amongst other issues that are different from what used to be taught by him, (Which are sadly, the things that drew me to him as a godly man of our faith) and she said she hopes I don’t die else our faith would die with me. I had to hope along with her.
See those fluffy pyjamas in the photo? Pathological Demand Avoidance (PDA) is extreme anxiety that sees the person needing to exert some bit of control over their life so they don’t lose their mind completely. The first and major thing you’re taught as the caregiver or partner of one with PDA is to give them choice. Make them feel as if they are making the decision.
Instead of my saying, “Nalo, here are the pyjamas you must wear” while her ADHD brain and body dawdled with getting undressed to bath, I asked her if she wanted any specific pyjama. She grandly told me as if conferring a hrest privilege upon me, “YOU can choose any. It’s ok. YOU can decide.”🤣
No crisis. No being made to feel powerless and even more out of control. No anger. No sadness. No telling them what to do. Letting them choose. Letting them ask for help if they want it. And giving freedom for things that aren’t important. Like them rearranging their bedroom without asking.😆
But dad doesn’t get it. Maybe he doesn’t know how to speak and ask. It’s not like I myself ever feel any tenderness in speech so maybe it’s just not possible for him. And children are fragile. So to have dad come out the room and he’s immediately barking instructions while the children are busy with something else, “ Go tidy up your room. Now! Go!” does NOT work even for adults. We want love. We want to be seen and valued. We want to know that you care how we are instead of the first greeting being, “Go tidy up.” Now especially as children, and children with ADHD nogal, is there a need for understanding why the room is in a mess, for checking what they are currently busy with, and suggesting that in X minutes, the floor being made tidy… Then the bed… Like that. They need directions one at a time because it’s overwhelming to get there and have a mountain of work. And because you have executive functioning disabilities (planning, coordinating, decision making…), you truly have no idea where to start so your brain freezes or panics and gets overwhelmed and your body does nothing.
And tone, for PDAers is everything. It’s the difference between peace and a huge meltdown and feeling like you’re hated.
And so, I don’t want to die. My friend doesn’t want me to die. And my children don’t want me to die. But I didn’t realise this was a FEAR of theirs till today.
Amarissa has harbored a fear all this time, that I’m hiding my impending death from them. 💔🥹She asked today if I’m sure the doctor didn’t tell me I’m dying and I just haven’t told them. This was after the three of them thanked me for their breakfast and then as I hugged them, she said it. “Are you sure you’re not hiding that you’re dying? What did the doctor really say? Please don’t die.”
I told her that according to my tests, I’m not dying. (Kidney function only went down by two units. Still waiting for test results on the pus she swabbed that was still coming out the abscess. Rheumatologist is scared the GP’s antibiotics might not be treating the right pathogen and it could be some other bad one so she dug inside and took some pus to send for testing) I told her I must still use my inhaler and she knows I am, so my lungs are not any worse. So no, I have no knowledge that I’m so sick that I’ll die any time soon.
So now I have a few more mom reasons besides being the only one who knows their school status and vision therapists and OT and exercises. To help keep the children seeing in living example what I read and study with them, to be their safe space, to understand their varied conditions and the best way of making them comfortable in a world not designed for children like them.
Abscess pain still there. Still no Rinvoq till I’m done with my course of antibiotics so the nights, pain, stiffness are getting even worse. I woke with my neck and head so sore I could barely see from when I woke up permanently, till maybe two hours later. (Don’t ask me how they are linked) But I can still love.
But hey, I have an ally! Our helper told our girl that she should go with her to Malawi when she goes to see her children so that I can rest. As you can tell from the video below, she’s the chief instigator of all the mayhem. So, not only physical rest from her wet bedding, school work, finding urine deposited in random places, (It’s a thing. Many of us moms in the ADHD group lament but have no real solution) but mental rest too. She came in at school time, “Mommy? Can you believe what Aunty Violet said? She said she will take me to Malawi so you can rest! And then when I’m naughty, she will send me to a FARM!! No way!!”🤣
Ahh the joys! It honestly is HARD. The number of anonymous parents sharing their despair in the groups and it’s over the exact same things I live my life despairing over is heartbreaking but so helpful. We’re all at see. If we were to tell what happens every ten minutes, people would accuse us of what a certain mom was told when she dared to TELL THE TRUTH about her ADHD son.
“You complain so much. You clearly don’t love your son.”
It’s such a prevalent response that even if I had anyone who asked how my parenting day was, I’d never tell them the lows and lows. You see it on disclaimers tired parents give (And don’t forget our non- speaker who is absolutely miserable today and I have no idea why. We’ve done all we can. Taken her on multiple drives, given pain meds, given extra to eat, let her watch jumping dolphins. She attacked me earlier for not discernible reason. Those too are things we don’t bother sharing because only those who live it even think of it as a possible part of your day, and because it’s again … Who wants be reminded that life can have the joy sucked out of it in different ways every half hour? Like my daughter’s eye lid cyst which is NOT gone despite surgery? It is on and on. Your heart resides in your children and when they are miserable, so are you.)
I digressed! I see it so often with mothers and caring, hands on fathers, “We love our son to death, but we are tired. He doesn’t listen to anything we tell him. It’s just fight after fight and my wife and I were left in tears last night.” 💔
What a life. And I’m meant to outlive the very ones who do bring joy, yes, but oh, so much heartache. So much money gone. So much time. And so much thought. I only had ‘breakfast’ at 15:00 today and that was meal one of the four I’m meant to have before each two capsules of antibiotics.
We have to live long.
But nobody takes care of us so we can care for our children in a healthier physical state so we can be strong when they are weak. (The irony of that sentence with an AS diagnosis.)
All of us are survivors or surviving. Long life to us and here’s to a hope of better.
We sang this in school. It was one of my favourite choral productions- Joseph and the Amazing Technicolour Dreamcoat. We sang a lot from there, a show I’d never seen but knew was done by someone extremely famous, Andrew Lloyd Webber. We sang a LOT of his songs in our choir.
My friend told me of how she blacked out this week and got injured. The world no we chronically sick people live in is such a parallel world. We are constantly suffering while everyone rose lives their day hot by hour unconscious of the pain, while the moments that allow the sick one to forget the suffering are minimal. I blacked out once at school. Found myself at the bottom of the steps with my friend extremely concerned and wanting me to go to the sick room. But I didn’t want to miss choir, so given I was feeling ok, I pressed on. I didn’t even think to tell my parents. As always.
This is the same school friend who would tell me I’m walking “like a granny” when what we now know are AS flares started up. The pain in my feet would burn so bad and I’d try curl my toes so they don’t hit the floor hard. My toes and finger so swollen I could barely hold my pen to write and sometimes just listened after showing my teacher why I wasn’t writing. I’d get home and make a mug of cocoa but my fingers couldn’t even curl to hold the handle of the mug.
I don’t know why, but I woke up this morning and as I tried to psyche myself up to get my pain tablets but the pain so bad I didn’t even want to move, I remembered this song. It was sung at the beginning and end of the play. For me, it represented Joseph in prison. Alone and sad. Weeping while the world slept. Forgotten. Sold by those he loved. So alone in his innocence. Just like me when I was a child.
What memories does this little one have hidden behind her smile? Nights of pain. Nights of lying on the bed she shared with her parents rolling around trying to figure out why her legs hurt so much, night after night. Doctors claiming it was growing pains. I’m still waiting to grow, then.🥹The stomach pain bringing her first colonoscopy two years after this photo. The daily burning abdominal pain as she walked to the train station with her daddy after school.
When we were still newly wed and living in Kenya, they had the production going. Joseph and His Amamzing Technicolour Dreamcoat. We’d stopped watching most shows by then but this I just had to see. My husband had also done it at his school, so it would have been nostalgic for both of us.
As I sat and watched, the tears just flowed for so many reasons. Nairobi, Kenya was the first time I knew that Black people (not just a few here and there, but almost an entire cast!) did theatre. It was amazing watching all these Black people singing songs we sang in our very British schools. Just seeing them so energised and hearing those lyrics coming from their lips was emotional. I don’t know how many black people TODAY in South Africa know the works of Webber.
Singing the lyrics as they sang all these songs we’d sung in school, took me back to school. The choir was my safe space. Music always took away emotional and physical pain. It was there too that instead of insults about my looks or body, I was told I could do something well. Very well. So well the choir teacher would tell the first sopranos that I was carrying them and they were flat so I should keep quiet and they must learn to sing the right key. (I can see where I got my absolute distaste of bad singing😩🫣 It’s jarring to my ear. There’s a church that has a very flat woman who leads with a very loud voice. It’s unbearable on top of how many don’t stick to the actual tune which we at our Xhosa churches grew up singing because we sang the notes as they are in the hymn book.) I digress. Beautiful music was my healing place.
I could forget myself and be the person singing the words. I could be Joseph. Betrayed by those who loved him. I could be Joseph, seeing how God allowed the bad to lead to great good. A good better than his past. I could see God better when I sang to Him. Even in normal assembly.
God appears vividly coloured when I sing, just like when I’m reading His word. I can forget the pain I’m in. I can forget that yesterday my ten year old wanted me to go back to bed as the flare began again. I can forget the neck pain, headaches, deep sore in my gum preventing me from eating ok and brushing my teeth (Rinvoq side effects), hip and leg pain when I’m lying here crying over lyrics from decades ago.
I too wish I could have someone “give me my coloured coat, my amazing coloured coat.” (Last line of the song) I just want to be ok. Joseph wanted to be ok. And the God Who eventually led his bones to the promised land, will heal mine one day. But oh, I close my eyes and know the someone far away who is weeping, is me. And maybe Flydah in Kenya, far away. Thank you for reading my heart ramblings and encouraging me.
By the way, I saw THIS version below first when I looked for the song so I could sing along to it. I felt so stupid as I watched. It took me ages to figure out why the lead singer was wearing a colourful ‘dress!’ Ankylosing spondylitis brain fog. Even Ammy quotes “brain fog” at me when the cloud caused by AS messes up by memory or my speech. I love the mix of singers. THIS video is what made me realise how BIG this song is. I truly never knew even though people have acted the entire story. 🤦🏾♀️Maybe the blacking out and falling down the stairs knocked some brain cells out.
Haha, I was looking for a picture of a skeleton and this one reminded me of first year speech therapy and audiology. We were each given a human skull to take home or to res to keep reminding ourselves of the bones of the inner ear etc. My husband-to- be thought I was creepy. I didn’t even think about it being human. It was more real cutting open the corpses in the hospital basement. But even then, I just wondered if the corpse I was working on was one donated specifically for us to cut up as some people do (Leaving their body for research or students) or if it was the corpse of an unknown homeless man whose body was brought in for students to mangle learn on. Those were two of the main places the university for corpses from.
Back to why I’m posting today. The chronic issue that gave rise to the name of this blog. I am starting to feel my skeleton and the first frisson of fear has begun. Unlike Enbrel which started working on my AS symptoms after four months, Rinvoq started in the third week. And the difference was much more obvious than with Enbrel – until the flare started last week. But even then, I didn’t have the usual, “God, this is no life. Please kill me,” request.
Until today. In the same way Rinvoq works fast, if you’re just an hour later than normal, your body starts acting up. Now it’s been three doses missed and the cystitis symptoms are still there and instructions from the rheumatologist were clear. “Do NOT resume the Rinvoq until all symptoms are gone.” And they’re not. I still have the pain. And honestly, I wouldn’t want to take it until I am healed. Who would want to change a hopefully easily treatable situation into a potentially kidney function threatening (As if my kidney function needs to get worse as it is), if not life threatening, situation?
So, I wait. But, as I just told my mother in rural Zim who asked how I am, my bones are crying now. I am in extreme pain and the fatigue has returned. Even my sternum is reminding me it exists. My children obviously see it because they kept telling me to go rest when I was tidying their dishes and plates up.
The new fear doesn’t end there with just the fear of an infection that won’t respond to the first antibiotic and will need longer treatment. Remember the ‘many months long’ paronychia when I was on Enbrel? WILL this infection heal soon? But also, what if more infections keep coming and it turns out I can’t keep using Rinvoq because it might kill me, like the way we had to stop using Enbrel? I’d be bereft. This has helped me more than any other attempt.What if the next infection damages more of my lungs? What if the next treatment attempt after having to quit Rinvoq will be like Cosentyx? Useless to me?
As I said, never in my life do I recall having cystitis. I just knew I had it because of my symptoms matching it, not because of experience. The test just confirmed it. By the way, I’m thankful for Intercare that always has appointments available to book online for the following day. I’d also never had a paronychia till Enbrel.
So now, I actually have to pray about these extra possibilities. All along, I’ve been masking up to try avoid those kinds of infection. But as the finger and now my bladder have reminded me, there are infections you can’t prevent. Enemies you can’t predict. Things I don’t think of as threats when I’m praying to not catch a cold or flu. And now my minor blood pressure worries have truly become minor. I guess because I knew that there are anti hypertension medicines but there’s no other way but to stop if I keep getting sick.
And with the improvement I’d started to feel, that’s a big problem. My daughter even asked how I keep making my bones crack when I get up. She thought it was on purpose! Like when people crack their knuckles. I wish!
Ankylosing spondylitis has reminded me who’s boss. It’s still that same incurable, progressive (ie it gets worse or treats you worse as time goes) inflammatory autoimmune disease. As if the leg that’s permanently painfully limping if it has to walk for over two minutes straight or try to exercise wasn’t already reminding me.
Chronically Yours signing off.
The one whose club you don’t want to join and to which if you belong, you wish you could get out of.
And don’t forget my children. My ten year old said she has always remembered my telling them never to play with fire. But, she thought the BLUE flame on our gas stove wasn’t fire. She touched it. It hurt. She was surprised.
She’s turning 11 this year.
As I’ve said. I need many of me to watch them and keep them safe.
My heart sank. At least she’s stopped self harming with needles and scissors. But yes, this life is extremely unpredictable and WORRYING. Their angels are working over time to keep them from permanently leaving this life. She’s promised never to climb up here again.
Autism and ADHD aren’t famous for helping their ‘victims’ sleep well. I have three out of four who don’t go to sleep well, don’t stay asleep, make hectic noise… Some mornings I don’t get to study my Bible because noise woke me and continues. Sometimes there’s boredom and one wakes the other. It’s just constant awareness of ‘something will disturb the night and/or early morning.’
And then when you wake up, you have my chubby five year old and her driving commands. On weekends, her dad takes her on a few of the drives. At first he’d tell me, “Just say no!” when he’d see me reach for my car keys. Now he sees why I don’t. The screaming and crying destroys everyone’s peace. Agreement leads to peace. And added pain for me in my bad leg.
So, we have Violet who comes in too often. The agreement was Monday- Friday and two Sundays till 1pm a month, but she tends to come in on more Sundays than she should! And my nine year old doesn’t help. I cringed one Friday when he said to her, “So we will see you on Sunday??” And she agreed with him! I reprimanded both of them. But, they’d made their agreement!
Some days, I want to cry. Since yesterday, I’ve been in a flare. Bones aching, fatigue back, almost didn’t reach my 10000 steps. Morning has broken and my problematic right hip is not giving me s break despite my 200mg Tramahexal. And that’s on top of the tongue that has two sores on it that are so bad I’ve asked the rheumatologist for help so I can eat.
I agree with the rheumatologist. The stress must be causing fibro issues. But wow, it took three full months for my tongue to obey my brain. It was scary. So I’m never touching Lyrica again. Which means that though I’m already on an antidepressant because it helps with nerve pain too, I wake up with a sinking feeling or am woken up by someone that will cause a sinking feeling that lasts throughout the day.
Why?
“Another day has begun. What will I be putting my body through today? How many times will I reprimand fighting children? How many times will I have to deal with my two PDAers demands and my ten year old’s struggles and my non-speaker’s demands? How do I get out of the multiple drives?”
Violet tries so, so hard. A few times, my girl comes to me saying, “car..car…” and then she is content to play and Violet watches her to ensure she doesn’t hurt herself. Other times she pulls her brother onto a scooter (really meant for younger chosen but her likes to ride on it anyway) and he has to keep riding around. One time, that ‘play’ caused her to speak! I was in there watching them just before I made lunch, and every time he stopped riding, she would pull the scooter. At one point, she shouted, “Good job!”🤣
Sadly, more often than not, she can’t be distracted or doesn’t allow herself to be distracted from her driving urge. And so, if I don’t go, if I try rest, or if I try continue working, it will descend into screams which cause her twin to cover her ears and ALSO scream. And then she and Micaiah complain to me that “she’s making noise!” And if I am in the loo (my bladder etc issues are back and I refused to catheterise myself daily so I have trouble with that aspect- taking ages to relieve myself) she will become so upset that there reaches a point where even when I am now driving, she can’t regulate anymore.
So..I’ll have to do it and have to when she wants. This morning, I’m truly dreading this day. But also, thankful that for a few hours, I’ll have someone in the house who wants to take the burden away.
My children’s photographer when they are at the playground.
Good job indeed. Earned me a few minutes’ rest and time to make their lunch without Little Princess pulling me or pulling plates or dishes out my hand because I’m not going to the “car.”
By my ten year old (washable, don’t worry. I use washable markers so I can get some hand strength going on when they wipe it off besides the positives of writing on an upright surface anyway)
It’s the little things. The little things that mean so much to us mothers of special kiddies. It’s like when your neurotypical baby takes its first steps or suddenly reaches a milestone they hadn’t yet reached. I used to praise my babies for “sitting without falling!! Good job!” Or “You got off the chair without Mommy helping! Well done!” To which my husband would respond, “Look! I just got up. Why can’t I get praised too?”
You can imagine the withering glance I gave him.
All new moments are worth celebrating. And so, when the same moments took longer for our next ‘set’ of two, it brought slight worry. (Amarissa crawled and walked later than normal and never crawled typically, but her babbling was ok but more importantly, her brother who we adopted nine months after her, was VERY obviously not ok that her small late milestones were ok.) That was a mouthful between those brackets! I was just glad I COULD also celebrate that she was walking.
With our fourth, our second of the second ‘set,’ it was the lack that was glaring. It was the sudden realization that it wasn’t ME who was suddenly unable to bond with him which meant I was a bad mother, but it was his inability to look me in the eye. It was HIS looking anywhere but at me as I held him, bathed him, fed him. It was his leaning away that meant I could not hug him to myself that caused the lack of closeness.
Fast forward to this week. It was his lack of engaging when I read a book, that meant we had no joint mother and son moments at all. The lack of babbling, the lack of turning when I’d call his name but perversely, the screaming cries when I coughed in a different room. The idiot doctor who didn’t listen to me about what we came to confirm was sensory processing disorder and global developmental delay and autism. and coldly told me, “He’s fine. There’s nothing up with him. But if you’re worried about his hearing, you can get him tested.” Despite my telling him how sound caused him to wail.
He was my first autistic to not enjoy being read to. But it’s my last autistics who have forced me to go about reading to them in a totally different way.
Like this below. How gratifying that the same boy who didn’t utter a word more react to a word, has words that he voluntarily speaks today. The one who didn’t react to anything, has “favourite” parts.
Yesterday morning, this one below came to me, “Mommy! Let me ask you a question. I was saying my vowels in bed today. Listen, a, e, i , o, u!” I haven’t had the heart to tell her how often her questions are actually statements. Not in that moment of great excitement about VOWELS, of all things.🥰
This special needs parenting job has hard times. I’ll focus on just one aspect for now. You seriously want to bang your head against the wall every single day, multiple times a day. I have FOUR children with ADHD bad enough to be medicated. But that doesn’t exactly strip them of their wonderful personalities, nor of their tormenting creativity. “Let’s cut this thing that shouldn’t be cut. Let’s paint with proper adult paint wearing our cream dresses that we will splatter with said paint. Let’s use the hair dryer and cause smoke to come out. Let’s use the toaster but instead of leaving it where mom said we should, let’s turn the temperature up to the max so that mom comes out her room wondering why there’s smoke everywhere. Let’s walk around outside on brick and thorns wearing only our pantihose. Let’s catch bees after having been warned multiple times, then stress our mommy when the stinger has to be removed from a finger and it stays swollen and sore for two days. Let’s argue about whose doll should be called what. Let’s tattle about who said what yesterday/five weeks ago or just now.”
It’s relentless mental strain. It’s so tiring keeping calm when you just want to scream. “They can’t be left alone.” They don’t WANT to be left alone sometimes, anyway. Not only once, my talking five year old has knocked on the toilet door then screamed and cried because I was “taking too long” for HER liking.
So, every positive is a huge bonus.
My girl who can’t say what she wants but couldn’t reason much either, is starting to understand at last. Remember how she spent over a year pulling me to do something impossible then attacking me because it was impossible? Those days are over at last. She doesn’t want much that’s impossible. When she wanted to try on her sister’s shoe – smaller than hers- it didn’t fit and she didn’t throw a tantrum, she just threw the shoe gently away. No tantrums. No violence!
And..she’s planning more and seeing how she can get things to work instead of being angry it’s not working out and then attacking me if I’m too slow (for her liking) to help her.
Speaking of “angel.” My ten, nine and five year olds who talk didn’t know why I call them angels when they age human. I tried T explain… Micaiah said this week, “I think I see why you call us angels. You’re trying to say we are nice like angels.”
But of course, there’s more to life than learning from books and play.
There’s also life. And so I leave you with the reason I’m now in bed with terribly aching feet and bones.
She played out in the garage for 31 minutes. No coming in for supper. So I kept sorting out the three that were indoors with their supper and medications, and had to go up and down doing the same for her! Meds, water with a bit of fresh juice (Still can’t get her to swallow water unless I give it in a syringe), meds again, grapes, meds, banana. In and out. I went from 9000 steps to 13458!
This is what she was doing in the garage. This is why I was going in and out. My life is crazy but sometimes it’s a good crazy.
The SHOP
I haven’t taken ALL the small ones to the shop alone. Not without the teens. Never, ever. I’ve gone with my talking three. But today when our minimally talking twin said her infamous, “Car. Kayi” I took them for her required three times a day drive and decided to just take them in to get treats.
I won’t do it again. I forgot that she’s a runner so I’d need to put her in the trolley. She also wanted to walk ‘funny,’ not facing forward but sideways like those crabs you sometimes see on documentaries. It was cute, but stressful because she also wanted to step over certain lines, so into the trolley she went. Which meant I broke the biggest rule my rheumatologist had for me. No LIFTING!!
We got out in one piece but I almost lost her when she tried to go running off as soon as I put her down after lifting taking her out the trolley.
But all’s well that ends well. I didn’t lose any child and they had fun. My BP which Rinvoq has raised properly shot up even more. On that note. I’m worried. The leaflet in the box states that strokes and heart attacks are “frequent” side effects. I emailed the rheumatologist about how my diastolic numbers (and sometimes my systolic rises above my norm but badly) have gone up. I expected the type of response I’ve seen other doctors give to their Rinvoq patients which is to either put them on anti hyper intensives like my nurse cousin wants her to, or to stop the Rinvoq.
My rheumy doesn’t believe it’s the Rinvoq. So instead she’s changed my anti inflammatory. I’d WANT it to be caused by the old anti inflammatory as that would mean I continue seeing if Rinvoq can put me in remission. But I’m not convinced. Especially given I then sent a WhatsApp to the Rinvoq NURSE who said it’s not common but it is definitely m a side effect of the Rinvoq.
So here I am. It’s been over a month of a raised BP. From a normal range of 68-74 diastolic (lower number) to this below and hoping it is the anti inflammatory though not sure. And it’s not like I’m taking my BP every day. Maybe it’s gone higher. She said I should continue monitoring it. It’s just too long , having an elevated BP and doing nothing, especially with the headaches that aren’t the bone pain.
We shall see! In this family, the entire school – teacher included- is special.🫣
I want to do more! You know how it is. All the things you want to do and only remember when you’re busy with something else…
Like noticing how untidy the garage is when you’re busy hanging damp washing in it.
As every mother knows. Well, mothers who don’t have live in nannies, that is. As every mother knows, mothering is your calling and job. So when you have four little ones with autism, ADHD, intellectual impairment and nobody else to talk to and plan activities for them, you don’t have time to do those things that irritate you.
Add active AS, and you don’t really have the ability to fix those things that irritate you either.
So what I want is to go into remission. There are people in my Rinvoq (My newest treatment attempt) group who are in remission. That means no pain whatsoever and they’ve almost halted the disease completely. The CEO if the large retailer, Shoprite said in his book that he’s been in remission for 30 years!! And he knows that when the AS starts being active again, he can find other treatments. I can’t imagine having no pain for the next 30 years!! By then I’d be 75! Better now than never, right??
I want to stir food and not be in pain. I want to lift light shopping and not have my husband ask what’s wrong because I forgot he was there and so didn’t hide the grimace the pain in my shoulders put on my face.
So I tried to do one thing I wanted to do.
I put the kiddies to sleep first. The first one to go to bed is this non-speaking angel who threw a very tiny fit because I took her for a drive that was too short. (third drive of the day) I put their soy yoghurt, peanuts and raisins and peeled and separated tangerines on the table and RAN away so she would not pull me. She stopped her half hearted crying! And by the time I came back out to finish off medicating them, she was happy again.
This was sent to me last Friday when I was hiding from having to do the second drive of the day. (See a theme?) She did the arranging of the soft play therapy toys plus her now too small car seat on the treadmill ☺️☺️
I want to enjoy more of that. Her crazy creativity and moments of peace.
I got a lot of ‘crazy’ tonight. She was in her room laughing and laughing on her own! For 25 minutes straight, my girl laughed and laughed! Then she slept.
The next to go to sleep was her twin.
I set up her electric hot water bottle, turned on her walk heater, tucked her in and told her I loved her.
Two to go.
I forgot about their meds. I hope their dad medicated them. I got busy! But I did give my ten year old an activity book to do before lights off. Then I went…
And I’m now lying here putting my hot water bottle on my very sore shoulder and then putting it on my lower back. All because I did something else I’ve been wanting to do.
I went to the garage, knowing I’d already done grocery shopping and breakfast and lunch. And knowing I should therefore REST! But then, the washing was getting damp in the waning afternoon as dew fell on it so I had to drag my sore body out.
And then I saw it.
The thing I always want to sort out but only notice when I’m busy with something else.
The garage
I focused on this area with the box full of damp books. Damaged books. Damaged by the children. And broken toys and some that could be salvaged. I took all the moldy books and papers out to the fire pit outside. Threw away all broken prams, flat balls nobody uses, all of the stuff that irritates. Kept the dirty cups for sand play. Sorted the “stuff” out. Typical and normal night.
It was fun. Earbuds in so I could listen to music without having my son (Who always comes on the drives his sister asks for) asking me what this word means or asking what language I am listening to while I’m trying to sing along.
I want to be able to do this every day, and not suffer afterwards. Not to have to choose between putting my hot water bottle on my shoulder vs on my lower back. I want to be able to work and know that tomorrow, I will NOT be in worse pain.
I want to be able to use the extra energy Rinvoq has given me without fear of what using that energy means to my pain levels.
I want to be much better.
I want to be able to do all the movement activities I plan for the children but don’t get round to because teaching and doing vision exercises are too much as it is.
I want to be a mother in the way I used to be. I want my day as a mother to be as full or as empty as I choose for it to be. I want to stop doing something not because if I do more then I’ll be in worse pain for more days, but just because I feel like I’ve done enough.
For now, I’ll be thankful that I at least had ENERGY to get rid of everything in here and that was in front and around it.
But I want more.
Is that too much to ask?
But also, I want to be thankful that most nights since I started this ‘not so good for my heart’ treatment, I’ve slept better than I have in 40 years. Counting from when the bone pain the GP said was “just growing pain” started keeping me up at night.
I want to acknowledge that somewhere in this horrible world, there is beauty.
They said I should write a book 