Tag: chronic pain

I’m Trying to Die

Grace by any other name2 Comments

But they keep waking me up!

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

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

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

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

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

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

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

Head.

Sinusitis.

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

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

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

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

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

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

Dry, dry nasal passages.

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

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

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

Then I lay down.

And got up.

And lay down.

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

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

And boom, the evidence walked in.

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

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

But they kept waking me up.

NICE-cream!

Grace by any other name1 Comment

Hello, hello! Guess what I made today? Sugar-free, vegan ice-cream! I had a whole recipe book that I began when I was 13 years old, in preparation for my future family. But then I went plant-based and then only one or two of my carefully handwritten recipes worked. I made a yummy kiwi fruit ice-cream and then I lost the book in a move back in 2011.

Thanks to my Kindle Unlimited Membership, I was able to hatch up a plan for our resident ice-cream eater. Woolies vegan dessert/ice-cream contains sugar and it’s expensive! I’ve never had an ice-cream maker machine so I knew I could use my blender. But would I find the right recipes? Are people still making homemade vegan ice-cream?

I decided to test a recipe from a book titled N’ice-cream by Virpi Wikkonen. I had no idea how it would go. I’ve never used cashews for an ice-cream recipe before so I made just enough for four small servings in case it’s unpalatable.

Mine is the white (vanilla) one and the other is the store bought caramel. You can see which one my non-verbal angel devoured FIRST. I can’t explain why she has two spoons. Vanilla flavoured with coconut milk, cashews and maple syrup or any other sweetener you’d have.

Everyone began with it because they said they liked it. You have no idea how excited I am. A few tablespoons of maple syrup, a can of R34.00 coconut milk, a portion of a bag of cashews, a few drops of vanilla essence do not cost as much as one carton of the full of sugar one does! But the excitement is that because big girl is here to cook, and I didn’t have to teach, the only things that caused more pain than normal were talking laundry in and out the machine, hanging them and bringing them back in. I ironed five items and rested. And I could make dessert!

I haven’t made dessert from scratch in a long, long time! I made my children smile. 🥹All of them. With their varied tastes, that was never going to be a given.

I am lying here and typing in order to prevent pain! Not because I’m suffering.

I am so thankful. 🙏🏾

Distraction Time

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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.❤️

WhatsApp and..Bras?

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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.

❤️

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.❤️

Long Live Mom, Viva!

Grace by any other name2 Comments

(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.

Oh, I Want My Amazing Coloured Coat Too!

Grace by any other name1 Comment

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.

Morning Has Broken

Grace by any other name1 Comment

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.”

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.

Letting Go

Grace by any other name2 Comments

Years ago! Nine years ago. My oldest girl carrying our newly arrived son, and their sister touching him in curiosity.❤️

My big girl is wearing a skirt I made. It’s the last full item I sewed. (I did sew a few bib sets thereafter that I sold.) After the making of this skirt, sitting had become so painful that even hemming or repairing hems is a nightmare of pain, though I enjoy the actual doing of it. Knitting and sewing gave me peace.

A few years ago, I bought a sewing machine. I told myself that I’d start sewing again once we figured out what was wrong with me and why I could not sit ( or do anything really) without so much pain. I thought we’d find a cure.

That sewing machine is now gone. I gave it away this year. Never used. Still in the box. I don’t know where this disease (AS) will take me and where Rinvoq ( or whatever else will come enxy) will lead. But I do know that I don’t ever want my house to burn down and have things I could have blessed others with, burning with it. Same thing with clothes. Why keep treasure when others need it? I always give away all good quality pre loved clothing as soon as possible. There are children TODAY who need to be covered up. Not tomorrow. Today!

And thus, I let go of my dreams despite the sewing machine not ever having been preloved. I opened the table cloth packaging. Remember, the table cloth I might have blogged about two years ago that I also bought with hope that I’d one day be able to dish out food and sit down on a chair to eat with my family? Why keep it till a time that might never come to fruition?

I’m letting go of SOME dreams, but until I exhaust ALL treatment avenues, I will still hope I can be the mom I used to be. That’s what my children need, more than my homemade skirts.