Tag: chronic illness

Distraction Time

Grace by any other name1 Comment

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.❤️

Creating Awareness?

Grace by any other name1 Comment

Creating “awareness” is so that people who might suffer the same condition know where to get help, and to educate others not to expect the impossible from you, now that they know what you’re fighting against.

Do others “create awareness” for the rest of their lives or do they ever sit down and say they’ve done their part?

I was diagnosed in 2023. I think know it’s time I retire. It was so major, having a name for symptoms that started in childhood and just got worse and worse. More importantly, it was a disease I’d never heard of. So I knew most of my people didn’t know of it either. If it had been common, I’d not have even begun with “awareness.” Those who are in my world don’t have AS nor its symptoms. And too many of those who are in my world find it very hard to be empathetic. To put themselves in my shoes. You’ll find an asinine comment like the following after I celebrated being able to work till later than normal, “Don’t forget, we also get tired.”

Ma’am, we’re fighting inflammation. We are always tired. We don’t get tired, we just get WORSE as the hours pass. And we’re fighting constant pain and stiffness in large bones. We’re fighting the conditions the disease has caused too. It’s very different to a very healthy person with only one child. If you can’t extend mercy and understanding, then awareness has not worked. You’re still unaware.

And so, my awareness campaign has stopped. It’s now left to those who ask specific questions to be aware and to leave me happily aware that the ‘campaign’ made a difference. One even remembered I am also fighting too, too early menopause yesterday!! That meant so much to me! That’s when I realised I could truly hang up my gloves. Those whose hearts are big enough, have retained all the information. I can count them on one hand, but .. there are people I can count! Some literally have NOBODY at all in their personal lives. I have some who check on me and remember what AS and other conditions do to me! Even when I’ve been silent for months about it.

My awareness creation has ended with the awareness that I am in some people’s minds. They’re aware. And they care. I am GRATEFUL.

What was the trigger for this post? This random image above that appeared on my wall, by Positively Rheumatoid. Fighting my pain and fatigue all day, every day, is part of my life; pretending all day that I’m not getting WORSE as the hours pass. I used to post when things changed, when I’d seen the rheumatologist… But one day when I celebrated working too much and for too long in the night, a very healthy person with only one child shared that they had done the same. It’s NOT the same. If they’d been aware, they’d have never compared their healthy body working late, with mine, which suffered badly the following day. Someone telling you with fatigue as a huge burden you and your pain are constantly fighting that “we also get tired” shows they understood nothing of the things they were to be aware of. Instead of celebrating that for once I was a bit more normal, they think it’s nothing. Purely because it’s nothing for them with their healthy bodies. Also because they didn’t gain from the awareness shared, what an inflammatory autoimmune disease is. And so, they helped shape future AS posts. And this blog helped too. And more the two sisters who ask the specifics are enough.

I’m in a global village and I’m thankful. I can also come across people far away who understand each symptom because they are living it. Again… I’m grateful.❤️

The First Frisson of Fear

Grace by any other name2 Comments

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.

She can’t ever struggles to keep her promises.

Hmmm

Special School at Home and the SHOP!!

Grace by any other name2 Comments
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 Know what I Want for THIS Mother’s Day(s)

Grace by any other name2 Comments

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.

A Little Child Shall Lead Them

Grace by any other name1 Comment

“Suffer little children and forbid them not. For of SUCH is the kingdom of heaven.” Jesus.

Last night, my heart ached as this little one coughed and coughed the worst of all the sick children. My heart broke for her. That deep chesty cough is scary to me as I can just picture the mucus growing bacteria and causing a bad infection. And also, she had been extremely sleepy and tired, so to have her sleep disturbed after she’d complained all day about how terrible she felt, was unjust.

So as I lay, I prayed. Prayed she’d be able to sleep soon.

In the morning, mask firmly on my face, I went to check on her. The conversation went something like this, “Is it morning time? Ok! I was coughing ‘n coughing ‘n coughing at night and so I prayed. I prayed to God and He stopped the coughing! And then I sleeped! I love God! He told me He loves me and He made me feel better! He’s the Best Man!”

🥹😊

I told her I’d heard her coughing and I had felt very sad. She responded with, “ Did YOU pray?” Boy was I glad I could say YES!

(Before unsolicited advice from any reader, yes I know it all and do it all. I’ve made all homemade remedies and bought some more echinacea and hot toddy cough drops with echinacea, vit C and what not. Thankfully the one we’ve spoken about it with knows not to give it!)

Then she followed me into my room, found one of the sticks I use for Maths for Ammy and said, “You can use this like a pen! You can write ‘JESUS!’”

THEN, I woke up the one who began everyone’s descent into sickness (minus the teen sisterand us adults for now). My sweet Ammy who had done this outside.

Tiny altar of love

Her conversation wasn’t as light at all! She opened her day with, “I don’t know how I’d survive without you if you died.”

Ok then…We are back to THAT! Poor girl. I reassured her not that I won’t die because I don’t know that, but that Vi loves her, her aunty Azola (my friend who loves them with all her heart) would check on them more often. But that I loved her and we would pray that I don’t die any time soon. I gave her a big hug while trying not to breathe in and hasten said death by getting sick. And hopefully she will get it one day. I’m irreplaceable, but she is loved by more than just me. There are others who are patient with her ADHD symptoms and enuresis problems. There are others who are gentle. Vi even laughs about the yucky things we find. I want her to know there are others who’d be her safe space. Who see beyond the behaviour to a child who once asked, “ But won’t God send me to hell? Because I do naughty things on purpose. I can’t stop myself. Aren’t I bad?” She has people who will never hold her behaviour against her but will continue to teach her the best way to be.

It’s like one of the suggestions given us regarding her self harming (Her anti anxiety meds we’ve moved to have reduced THAT) and destruction of clothing : Provide old clothing she is allowed to destroy.

Here’s to more of God and less worrying about my death.🙏🏾🥹

Seeing as my ten year old loves writing, I’d better work fast on finding a ‘speech to text’ programme (Yep, lots of recommendations to work against the challenges caused by her earning disorders) for her so she can say everything she wants to say. Finish her thoughts and be more understandable.

And as I’ve been saying, her poor brother has more severe challenges so I foresee him not even being put on a dysgraphia curriculum to try learn to write better, but straight into speech to text software like one of Ammy’s suggestions. My poor boy!

PS after handing the above to me, my girl asked what an anniversary is and how it’s celebrated.😆

My poor boy…

Yet he can READ so well. The brain is a curious thing.

This has taken me all day to write. Let me go see if my girl feels any better about my dying. And WHY she’s so stressed about that.

I’m back!

She is feeling less scared but doesn’t want me hanging around them while they are sick. We can hope. Pray. And watch.

WHAT Sabbath?

Grace by any other name1 Comment

I used to dislike hearing people say, “Happy Sabbath” when greeting me at church. I’m not worshipping for happiness, to feel good, but for blessings that will help me become good, holy, pure in God’s eyes. So I’ve always deliberately said, “Blessed Sabbath,” or, “I hope you will have a blessed Sabbath.”

Nothing strips you if the FEELING of being blessed as pain. Emotional, physical, both types. If you aren’t resting from negative experiences, you don’t feel like it is a Sabbath. Sabbath is meant to bring us closer to God and further away from the earth’s charms and harms!

But not when the devil has your health and your children firmly in his grip. You feel as harried as you would on any other day. Yes, you might not be “doing school,” but you’re still teaching. And AS, ADHD, Autism and intellectual impairment and everything else, have no day of rest.

And so, a day which began with some hope has not ended yet *gulp* , but has come with some hard moments. I’ve been warning my ten year old, our helper has warned her, but still, despite us telling her to stop touching and catching bees, she got stung yesterday. And her finger is still sore and swollen and red at the tip. Normal, but it’s the fact that she caused it that makes it worse. I don’t like worrying about my children. It takes away my peace. And knowing it was by choice sadly doesn’t make me STOP worrying or being sad about her (according to Google) few days of suffering.

The teens have been here for almost a week now. I had THOUGHT I’d be able to take the children to nature on Sabbath last week but my body said no. And it’s still saying no. So I told them they could go wherever they’d like and so it was, they went to the aquarium.

After doing some Bible reading, I felt in a hurry. We took a short walk. And that too is a big deal. We used to take walks in the evenings when my husband is around when the children were calm- twins in bed and middle two reading or playing calmly. But now, there are no teens to watch over them in the evenings or on weekends anymore so we’ve been stuck at home. I could walk alone, but I feel like my limp when alone draws too much attention to me and I feel self conscious. And it’s not like it’s a power walk for exercise. Just a short gentle stroll. A third of the distance I could walk two years ago.😐

Back to the point. I was feeling rushed. We just had a few moments of ‘peace’ till the group returned. I came back home and settled in, trying to finish as much of their nature story as I could. But they arrived before I had finished.

And that is the crux of the matter. Two hours isn’t enough to give true rest. Because of their peculiarities, one twin pulling me when I sit with everyone, the other not focusing well when I’m teaching face to face, I have to then record their videos. Edit them, find engaging pictures. And then put it all together. So I’m sitting.

Pain.

They returned from the aquarium. And chaos started. I went to go warm up lunch and dish it out and my girl began, “Car. Car. Kayi. Kayi.” (Don’t know how the vowels change.) Her dad always says we should say no. After all, they’d gone all the way to the CBD to the aquarium, it’s enough. Nope, not for her.

So I went to hide at his urging. But the girl wanted her car ride come hell or night water. And the loud tears began.

Ten minutes later, I gave up. My driving leg has been giving me a lot of trouble. But I couldn’t handle the fact that SHE was unhappy, and everyone (perhaps excluding her father who was saying no to the car ride) else also had to be party to it. I needed to make things better for the other children.

So I took her for her drive.

Calm restored.

But not my own.

For just an hour after that, I found a mess that didn’t make sense at first. Till they told me they’d been melting crayons with hot water. I know ADHDers are creative. But at this point, I wish all their creativity was in a positive direction. Not something resulting in MORE work like their little sister’s brand of autism results in. How will I even begin to clean this?

And this is the crux of the problem. My body doesn’t allow me to be watching over them wherever they go. And I have to parent and teach, feed and launder. I can’t follow them outside to ensure they don’t get stung by bees. I can’t drive all the time. What happens when my joint on that burning bad right leg is fully fused? Or I’ve caught an infection I don’t want them to catch so don’t want to sit in a car with them? What happens when I’m in an even worse AS state and can’t drive her anywhere? How will she and all of us handle her screams and cries? I can’t be hovering over them to make sure they don’t melt crayons. I can’t do it all.

And because I can’t do it all, lots happens that definitely does not feel like a blessing. That short break I got when they went to the aquarium didn’t feel like one at all. Because I was still giving my body to my children. Not by choice, but because their special needs demand I record so they can learn.

I feel like the strain is aging me.

Today is definitely not FEELING happy nor blessed. It’s stressful, PAINFUL and sad. My pain levels are increasing. Even at night I dreamt I had fused up and was planning surgery to break the bones and fuse them in a better position.

Nevertheless, I keep on. What else can I do?

Prompted by a comment

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How are things going with my not very predictable, and very physical daughter? This post was prompted by a father of an autistic child who commented under the post in which I spoke snot my daughter hitting me and hurting me.

Sometimes good, sometimes bad. She has no real texture she prefers anymore. She will eat porridge-y Pronutro just fine, and oats. And sometimes..not. Today was one of those “Not oats” days. She came into the house, saw the oats on their table and came storming to the kitchen yelling angrily. I knew what that meant. This time poor Micaiah who happened to come into the kitchen got caught in the crossfire for the first time (in my presence. ) I didn’t know how he’d react when I was telling her to be kind so didn’t even have a chance to warn him to rather stay away instead of getting close. But, it ended ok. Well, it ended ok for him. He left and then when I replaced the oats with original flavour Pronutro-which she keeps gesturing for-she knocked the bowl out my hand and cereal went flying.

I’m sorry the camera glitches so you can’t see it all.

This is what life is like here. Not ALL days, but MANY days. I will need someone to be nanny who understands the unpredictability but will remain calm under fire. I think of a baby who was hired by a lady in a South African homeschool group. She took a month holiday and went home and they had a sub. She wrote to tell the mom that she misses her autistic son who is so loving despite how often he hits her. I’ll need someone like that unless I miraculously find a very affordable therapeutic centre for her. If we lived somewhere like in the States, I’d definitely have an aide for her and send her to one of their special schools. But, I’m here, not there. And we have nothing here. The government only even starts putting our children on their two year plus special school waiting list after your child turns seven! AFTER. And the waiting list is long! Can even be longer than two years. It’s BAD. I really don’t know what to do and am constantly stressed to the max. I’m struggling.

Then we come to the middle two. I’m meant to brush their teeth. And I’m starting to struggle there too. Just folding laundry has been tiring and difficult. My arms have been giving up on me and feeling strain. This week, it’s gotten even worse. I can’t even fold ONE SHEET! I have to put it down half way through the process. One sheet! I was telling my husband that I wish he could feel what I’m feeling. I wish everyone who expects too much of me could feel what I’m feeling too.

I really DO need to stop working.

It became evident that what I’ve been wanting to do is truly necessary (finding them educational and therapeutic external centers) when I couldn’t even brush one child’s teeth without stopping in pain. One set of teeth! But my arms got tired and were extremely sore. Just brushing my son’s teeth so I had to stop and rest a while. What kind of a life is that? Thats the fatigue we mean. It stops us moving. It makes us wonder if we won’t collapse. It is overwhelming.

I need a second mother for my children. A kind, honest, gentle, able to drive, patient, mother to teach. I don’t think they make others like me. I haven’t even met anyone who doesn’t lose their temper at their own children or relatives. How much more when dealing with mine?

Clothes and shoes constantly left outside overnight to get rained on, or for heavy dew to fall on. Socks getting lost by my mine year old daughter. Underwear thrown out the window by one of the middle two. Daughter still making holes in her clothes. Eight year old throwing food down the toilet. Both extremely easily distracted. I’ll tell my son to go wash his face and he will stop to ask me why babies use pacifiers instead of doing so. Then he will forget I ever told him to go. Or my daughter will go get undressed but you’ll find her sitting down with only one sleeve off, reading a book.

I need someone like Job.

I need them NOW. So yes, it’s been up and down. I’ve managed to divert some anger and get my unpredictable girl her to be less violent. I’ve verbalised her feelings but told her straight after that we are kind and gentle and hug each other, we don’t push. Sometimes she hears and then squeezes me for a hug. Sometimes not.

Homeschooling while terrible unwell is another level of torture. I can’t even finish the next day’s lesson and therapy planning as I’m so in pain by 20:30. Hoping for a breakthrough. And a break.

In the meantime, I grasp and clutch to myself every comedic moment and every insane second. Like my four year daughter who only partially listens when I’m teaching -doing what I tell her, but also planning her own thing. Above, she decided on her own that while I’m reading to her, she’d suddenly draw two C’s. And she did. I’ve never had a student like her before. She marches to the beat of her own drum in every single area of her life. It’s funny. It’s tiring. It’s frustrating when her drum beat is out of sync with the symphony I’m trying to conduct. When she wants to do something totally out of line with what she’s meant to do. And she does most of it, with a smile and easy confidence that her wish is not disobedient nor distracting.. and never negative. So what if she can’t say without stopping to want a very specific book we can’t find and she won’t eat until we find it and put it next to her? So what if she sometimes even coughs and splutters a because she’s chewing and singing at the same time so some food goes down the wrong pipe? She will be warned by me. But she continues and then with watery eyes say, “Oh, I’m choking!” 😩🫣Her not very talkative sister does the same too. She will jump and spin with food in her mouth and sometimes cough and splutter when the food goes down the wrong pipe. I don’t know which is worse! Their extreme activity instead of eating- wondering up and down and going around to find toys and books. Or the middle two and how they will take an hour and still not finish a small bowl of food. And it’s not because of the ADHD meds that reduce appetite. They do that even without the meds. To feed them less would be to under feed them. But to make them sit for three hours would mean I don’t get time to teach. So I end up telling them stop and learn then eat again after a short school lesson.

Told you I need a breakthrough.. and a break. The mind can only take so much constant stress before it breaks. And that’s a mind in a healthy body. Even healthy parents of even one neurodivergent child can’t cope if the child is challenging. And I understand it. I need a break. We all need respite. We all need hope and help.

Rheumy Tomorrow. Museum the Other Day

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Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?

Perfectly Ok

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I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.

What is perfect in the day of a sick mother of disabled children?

Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.

But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.

It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.

Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”

Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.

I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.

The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.

After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!

So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.

That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.

And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉

If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?

And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.

AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?

I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.

And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.

Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.

She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.

Give ourselves the grace we would extend to others. Start with yourself first.