I used to bake. From when I was 13, I baked. Sometimes my dad and I would bake at the same time. I’d bake chocolate cake and he’d make muffins. He was the one in the family who made idombolo (Traditional S African steamed bread made in a large pot of water.)
I baked when I’d go home on weekends. I baked when I went vegan. I baked gluten-free when my gastroenterologist pointed that gluten is a huge IBS trigger. I baked for my oldest two.
But then AS progressed – as it does- and I couldn’t bake anymore. Not often and not without having to rest and then sometimes forgetting there’s something in the oven because I’m now working on something and it burning.
I had hopes. I truly believed Rinvoq would revive me. I thought I’d be able to handle laundry like it’s nothing. But wow, i feel like collapsing after just one load hung or brought down, and my arms don’t want to be raised for long. I can’t be the mother and worker I wanted to be. Also, I thought I’d be able to stand and bake. Instead, I don’t even make my own IBS-friendly food because I’m in so much pain after cooking for the rest of the family. Rinvoq has not changed my right leg. I can’t even do might walking exercise for five minutes. Movement and standing and sitting cause worse pain than ever And so, the cupcake liners I had bought, remain unused.
Unused till today, when Ammy (my ten year old) had decided to raid the kitchen and find unorthodox hair decorations. She found some-the cupcake liners to do something different with their wool I’d put in their hair.
It was a painful trigger. It was a waste buying them. The hope was not fulfilled. So instead of being angry at the wasted money, angry at them being used without permission for something they were not bought for, I held my peace and instead commented on how they should ask before taking people’s possessions , and that it’s very creative.
Hurray for crazy creativity. She should be one of those designers whose clothes when on the runway dazzle ( If you have different tastes to me) but aren’t for normal people.😄
AS keeps stealing from me. But my children have taken a few things back and use them for a different purpose.
This morning, someone sent me a voicemail passing condolences to me regarding an in law who passed away. Except I didn’t know the in law had died. They’d become an outlaw when they pointblank refused to care for their child and left them for others to feed and love.
Never even a visit to see the child, nor to have the child visit him.
So I contacted the relative and with a sense of irony to gushers where she stood, passed condolences on for the death of her husband. The relative quickly replied that they would pass the message on to their child who. unlike the relative and I, is truly grieving.
Children have an idealized version of their fathers. Especially little children. Moreso one who engaged with father only via telephone. He could be any kind of hero when he’s just talking and not reprimanding you or making false promises or not in your presence just sitting there while mom is mom and dad.
But I and the widow know better. So do other relatives and friends I told. Some people are ‘mourned’ with as much sorrow as if they were complete strangers, because of how they acted, or worse yet, there is a sense of freedom in being freed from shackles binding one to the now deceased spouse.
What will YOUR wife say to herself when random people think she’s grieving and treat her accordingly? Will she think, “Really!? He wasn’t a great husband, what is there to miss?” Or will she think, “My heart is so empty. What will I do when people move on and I’m still here grieving?”
When colleagues and ‘friends’ praise you, will she think, “Yeah, to YOU he was like that because he craved admiration, but to me who saw through him, who saw the lies he pretended to live when he spoke to you, he was as artificial and as loving as a plastic flower.”
Or will she think, “Yep, that’s him alright. I will miss all those qualities and the ones he had as a husband, a role he played only with me, his wife?”
God matters but many men (and women) don’t care about God, and God isn’t the One sending my relative messages. God isn’t the One asking my relative to pretend to feel feelings he never awoke in her. People are. And people are very easily deceived.
Are you a liar? Pretending to study God’s word when in reality you only study when you’re going to preach or teach? Or are you living in His Word? Would your wife say you were a godly husband? Or is she hoping you don’t die so she never has to say anything about you?
Are you really a family man as you pretend to be at work? Or are you fully invested in the interests of your wife and children in a way you can’t even fully portray at work?
Were you generous to strangers who would praise how giving you were, but withheld your love, attention, affection and heart and ears from her?
Or would your wife stand up front if asked to speak, and be lost for words because you were her heaven on earth and now she’s in her own version of hell?
What I know is that the same word came from the widow as came from me when I told a friend the husband had died.
“Numb.”
We aren’t cold hearted enough to not care. But we have only a shadow, an idea to miss. Someone others loved because he pretended to be loving, when in reality, he was a source of strain and pain to those who truly tried to love him..and win him to God.
What will your wife say to those who are close enough for her to be truly open with?
And if it’s justifiably negative, what are you going to do about it today?
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.
The range is actually 30-40% delayed thinking, functioning, planning, memory, organising… I believe this. Especially for my older two who amongst other challenges, have moderate to severe ADHD. It also matches the outcome my ten year old had after an assessment. Her emotional age was six years old yet she was ten. I hope it helps any other person out there to understand why their child is being more childish than they ‘should’ be. Why they lack common sense or logic that ‘should’ exist at their age. Obviously, some aren’t as lacking, and some are even more behind than 40%.
(ETA doing the hair of ADHD kiddies is an exercise in patience. You see other children absorbed in their tablets or iPads. Mine are absorbed. They recite what they’re watching. Especially Nalo. “I e is ie for pie.” She knows every line coming up. But they still move around soooo much. Given they cut a lot of their hair. We had no choice but to cut it all, so it’s SHORT. Trying to grab a hold of short hair is hard. Add a child who just as you have it, then sharply turns their head merely to see what the other is doing on their iPad even though they can hear it… (And yep, they all broke their noise canceling headphones. Even my poor son who needs them the most.)
Now, onto the smiley things. The things that make me smile!
My boy is the girls’ personal butler. His five year old sister used him the most.
I was working on closing the ends of wool journey. Haha, I call it a ‘journey’ because as with my locs, I learnt online. Someone coming here for just one head would cost R1000! Imagine all that money! Impossible. I’ll save our hair products myself. The girls kept finishing our sprays and moisturizers in one week or less. Breaking lids and emptying contents even onto the floor. And they creep into my room to get them even when I try hide them. It was constant “Let’s go to the mirror and comb our hair.” And they’d hate starting their school day because they hadn’t litter their hair to be puffy. Cue, the jumbo box wool braids to stop the madness till we can (for the THIRD time, resume locs and hope that this third time will see them never cutting their hair again.)
That was a much longer paragraph than planned! I asked him if he’s HAPPY that Nalo keeps asking him to make toast with peanut butter for her. Their appetites return with a vengeance after their ADHD meds wear off, so evening is hunger time! And my sweet boy goes up and down fetching bread, peanuts and raisins. He said he LOVES to feed his siblings. Ammy is a bit miffed. “Why him? Does she like HIS bread the most? Why doesn’t she ask ME?”😅
Another smiley one is our non speaker insisting on her older sister using her tablet in her wardrobe. Our schedule includes breaks where they each get their tablets and do educational apps or watch educational videos I’ve either created for them, or have downloaded for them. It’s been months of this. It’s crazy but cool. And her sister is totally happy with it. We all need some darkness and calm.🙂
The last smiley thing is Nalo’s absolute joy of learning. I posted two or three little snippets of our one class session. Besides thinking about her work, her brain (AuDHD) is running in multiple directions. I hear, “I love you” out of the blue and she tells me ‘completely unrelated to school or to the topic’ things.
But what was made me laugh was when I came out the bathroom and she proudly showed me all the pages of one of her reading books that she’d read while “waiting” for me to come out. I don’t know if she’d the right judge but I’d like to believe she did read everything correctly. 🙂 I truly hope she never stops enjoying school.
But it was much better than the previous night, and for that, I am grateful. I’d told a young lady who always checks, how scared I was to sleep. And you can therefore imagine how great it felt to tell her that I survived the night.
Resuming Rinvoq after the break meant that it felt as if I was starting it afresh, never took it. Every side effect was as bad as the first time. The stomach bloating and pain and weird creepy crawly intestine as if I’m in an IBS flare where it feels like you have a baby that’s kicking and making waves in your belly. The headaches. The swollen throat that closes up and causes bad snoring… (That one never stopped except for when I was off the treatment.) I can’t even make the Afrikaans g sound anymore. It’s quite scary what this has done to my throat. And the horrific dreams. Extremely vivid and mirroring in a gruesome way, the actual pain I’m feeling.
Thursday night was the worst. The children slept better so they didn’t keep waking me with their noise, which meant, I could sleep better. Too better. Remember, Rinvoq makes many of us feel anesthetized and terribly sleepy almost all day too. That night was so bad I contemplated just quitting and letting the disease continue taking my lung function and turning me into a ball of hellish, burning pain again.
I dreamt I was holding something which then turned into glass right before my eyes. The glass shattered into small shards. And pierced my right hand. Many pieces embedded in my right hand. As I used my left to try pull them out, pieces that were stuck in my left hand would pierce my right hand too. I looked at my fingers, full of little slivers of glass, the pain horrendous as the pain grew worse.
Then I woke up. In real life, I had pain from elbow to the tips of my fingers. My hand was swollen and stiff and sore.
Then in another, my husband somehow got a branch into my throat from in front of me as opposed to through my mouth and down. I couldn’t speak to tell him he was killing me. But then he realised and started trying to get the branch out my throat. But each time he tried to pull backwards, the branch would cut off my airway completely and I didn’t have the ability to tell him I was dying. Then he’d realise and lower it again. Then he tried again to remove the bean h, the roughness causing extra pain in my throat, but again I’d choke and have no air.
Turned out I was on my stomach and my throat was so swollen that when unconscious, it wasn’t staying open. It was painful and swollen feeling in real life. THAT was when I truly started believing the treatment will kill me before my diseased lungs do.
There were other dreams when I tried to sleep. I couldn’t roll over but on my stomach I was being smothered and dying.
But, last night was normal. And so, I hope that today will be normal too.
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.
I’ll start with unloving mothering before I go into special needs mothering. Readers know the two posts I typed about the missing Joshlin Smith. Her life imprisonment sentence even made it into international papers so I won’t go into that except to say that I wish we could get the TRUTH out of her so everyone who loved Joshlin could hold a memorial service for her. (You can tell what condition I feel she’s in.)
I saw today that a mother reported her two year old as missing but it was quickly found that she had sold the child for R75 000 to a witch doctor. The witch doctor has been found and has shown police where he buried the little one.
AGAIN?? Just like Joshlin but for a much higher ‘price.’ But at least this time her little bones have been found and so has the evil witch doctor who practices death and darkness.. and that’s where I’ll stop.
It’s when you see things like this that you realise how perhaps loving your children isn’t normal. I know that most parents in my ADHD groups have yelled, hit, sworn at their children for doing things mine do. I’ve never done any of that. So hey, I can’t be too terrible a mom. I have not sold my child nor do I angrily scold them no matter what they do.
It is heartbreaking that while I stress that our twin is hardly eating vegetables, preferring dry cornflakes, dry pasta, noodles and grapes, some are ok with giving their children to a killer. Clearly like Joshlin who was neglected and abused, this little one also must have not been loved even while in mommy’s care. It beggars belief. The wrong people keep falling pregnant.
And unlike stereotypical African society, I’m not ashamed of them nor their challenges either. God has a plan to fulfill through them and my job is to ensure I allow Him to work.
So, we move onto our special needs parenting wins. I became weary of telling my teens to TALK to their last born sister. Just because she doesn’t answer doesn’t mean she can’t hear. And just because she’s intellectually impaired doesn’t mean she’s deaf, mute and blind. She is easier to reach than the great (though unlike our kids) neurotypical Hellen Keller. But they didn’t. So I’ve carried the torch alone. Naming things over and over. Naming what she pulls my hand for. Naming anything we come across.
And this week, she asked for one of the things I always name which she had never said before. “Cornflakes.” She said it verbally. First time she’s said the word cornflakes!
Same with popcorn. I made up a video for the word “questions,” and one segment included me asking, “Who ate all the popcorn?” And then I show a video of her eating popcorn. She stopped pulling me to look at the TV screen and repeated another word she’d not said before, “popcorn.”
I am so grateful that I experience little moments of knowing she is taking in what I’m saying. Well, at least she’s clearly taking in the names of things and people.
Another victory is water. She isn’t into water, but her twin is now finally drinking plain water. With her non-speaking twin, I have an eighth of the cup filled with fruit concentrate and the seven eights made up of water. So it was awesome that a while ago, little miss in the photo above drank a cup of water and sometimes asks to drink the entire cup of water I give her to swallow her tablets with. (Hoping that makes sense!)
Another victory for the other three is SPINACH! They don’t like the texture so I chopped up potatoes that I didn’t peel, boiled and mashed them with spinach, a touch of garlic and turmeric.
They finished it all! I was pleased. It’s a struggle getting veg based iron into them. And as for little miss, basically impossible. She likes smoothies though, this one was blueberry smoothie. Maybe I’ll add spinach leaves so they all get good quality iron besides the supplements they’re on .
Held prisoner by his non speaking sister.
There’s a lot I could say about motherhood and homeschooling but I’ll end with this because I recorded a vlog that I haven’t edited etc so much would be repetitive if you are subscribed to my channel. SnapType Pro has allowed my son to ‘write’ numbers and letters we couldn’t decipher before. I first bought it for our ten year old and then another for our son. Well worth it. You take a picture of the page you need to fill in or write on and then you type the answers in the blank spaces. It’s made school less stressful.
I’m thankful that my six children are happy, loved and safe. I wish all were guaranteed that. Safety, thoughtfulness, and true love.
Until that day comes when only Love will reign, I will try advocate, answer about how I parent without the yelling, and pray for our children. Their mothers are letting them down. May all loving mothers I know keep on keeping on. Jesus said the angels are always telling the Father about what’s being done to His children. They are special. Strength and patience to parents of neurodivergent and neurotypical children. We have to do this. We have to love. Maybe our love will overshadow the love other bad things going on and we will be our own personal feel good stories.
I have a channel for kiddies’ Bible stories. It’s reverent and sticks to the actual story- no weird additions that aren’t true and uses as close to realistic images as possible instead of cartoon characters that secular kid shows also use.
And what has kept me posting the videos (I creat them for my children but Ammy asked me to post them online) are two little children who aren’t in my family. Well, one is a dad of children and the other is a little girl who told my husband to tell me never to stop.
What are YOU saying to people you meet? What message is it giving them?
I don’t know if I shared here that the talking girls (age ten and five) cut their locs. They kept cutting off a few despite repeated warnings to stop and my hiding scissors. But nope, they kept sneaking into my room to get scissors, or took them from their brother after he used them for his school lesson and kept cutting here and there till my ten year old Amarissa had a full front section with no locs at all. After all the months and years of pain from standing and creating them and then tightening them monthly over weeks as they are impatient, I had to cut them off. I won’t lie, it hurt. Each loc represented a lot of pain for my shoulders, pelvic bones and back, and a lot of time wasted.
They had been very eager to start afresh but a day after their dad shaved a few bits off to make their hair more even, they regretted it bitterly. “Mom, why don’t you also cut your hair so you are like us?” And cries of, “Why did we cut our hair?? When will it grow again? Can we have locs now??”
So, they started putting all manner of things on their heads to pretend they had long hair. Stockings, bonnets, petticoats. It was crazy. I told them their hair was fine just as it is and that nobody thinks less of them just because they don’t have long hair but it didn’t settle in. They never saw any children with short hair.
On Thursday, I pointblank refused for them to walk out the house to go to the playground wearing stockings on their heads.
The girls returned and my ten year old tells me how the nannies, domestic workers and dog walkers they usually meet there, (“Our FRIENDS!” they always tell me) were surprised to see their hair.🤣They said their hair looked good and they clearly take great care of it.
Since then, since those STRANGERS, said what they said, they no longer hide their teeny weeny Afros. No more embarrassment, no more shame. I am so, so grateful that Black people (We notoriously aren’t into keeping our hair natural and without braids or wigs or weaves) managed to do what I couldn’t. They reminded the children that what matters is healthy hair, not length of hair. And all that is NEEDED is for it to be taken care of, not made to look different or thinner or longer. No traction alopecia from tight cornrows, or braids etc.
Their hair is beautiful just as it is.
Priceless.
So, what will YOU say to someone today? Especially to a little child? 🥰
Imagine if I’d just brushed her complaint aside. I’d feel like a right old dummy, now! A real nincompoop. But, I did put myself in her shoes and so I can gladly say that after today, I’m glad I did understand and also express a verbal rolling of the eyes at how ignorant people can be.
I’d met her some years ago. She’s one who invited me to her shared apartment when I started going to the church nearby. So much better for me so I can actually converse instead of wondering what the children are doing. And I enjoy listening to new people tell me about themselves.
One of the things was her prosthetic leg. She’d been in a terrible vehicle accident and had to have her leg amputated from the knee down. She had a great fake leg and they’d made sure it was as close to her skin colour (Zimbabwean Shona lady a few years younger than me) as possible. She therefore had a disabled badge to hang in her car, and though the leg was very good quality so didn’t hurt much, it did help to park closer to the entrance when the shopping centre is big or when there’s no parking nearby or when she’d been walking for a long time before going to the shop so was starting to feel fatigued.
But, because she could walk so well and tended to wear jeans sometimes, people didn’t always know she was disabled. And so they ‘judged’ her a lot. And thus, I couldn’t relate but I could imagine how exasperating it would be to have to prove yourself to strangers.
And so today, for the third time, it was MY turn to have to prove myself. I went to the hospital to collect my ten year old’s prescriptions and as I left the car in the rain, a security guard came running behind me while another man started shouting, “You can’t park there!” The guard called me and kept gesturing at the car without saying anything, so I too silently looked at him as I flinched in the rain. I wasn’t going to make it easy. It wasn’t his job to confront patients but to check that their cars had the disabled badge visible on their dashboard.
They came together and I told the one older man that not everyone who is disabled is in a wheelchair. I was so angry. It’s cold and rainy and the man I’d hired to do the driving on fine days, doesn’t know how to take public transport to get to work so I had to go up and down while in a flare. And now you’re making me stop in the rain? When I left home it had stopped raining so I hadn’t brought my umbrella nor worn any kind of extra jacket.
I told them both loudly that I don’t need to be in a wheelchair to be classified as disabled and they should check my dashboard. I turned to the black security guard and told him he knows where he should look instead of calling me.
The older man, Coloured guy, lit up a cigarette (SAVE ME!) while saying he understands because he’s got fibromyalgia and sometimes he has bad days. I told him my amputee friend goes through this nonsense and I have Ankylosing spondylitis. He was taken aback, “ Oh! Oh no!”
Oh yes! Leave us alone and check for the disabled badges, man!
I got back home after doing the pick up and straight into the clutches of Ratie who said her infamous word, “ Car..car.” And so back out I went, my trusty son always coming along too. He’s cool man. Despite his constant interruptions to ask what a line means, he is also very flattering. He likes my singing and says so, (Aww, love is deaf) and today I kept telling my girl I love her as I buckled her into her booster seat, and told him, “ I love you too.” To which he replied, “ Aww, you look so cute. When you said that, your cheeks looked so cute.”
Hahahaha.
And so, we reversed as we sang the first song together.
She’s just come back for car ride number three but Violet is trying to hold the fort. 😅I’m even too scared to turn the heater on. I’m scared she’s too close by and will run in and grab me again. She’d come and I told her to go play and then locked my door.
Let’s hope she is. These bones, even my ribs, are crying.
And so, that’s why I’m glad I did get angry at the faceless people my now back in Zim friend had told me about who didn’t want to just keep going about their business but got into HERS uninvited and unnecessarily.
She’s coming back…🤣🙈 Stove on low and out we go..again.
Autism and ADHD aren’t famous for helping their ‘victims’ sleep well. I have three out of four who don’t go to sleep well, don’t stay asleep, make hectic noise… Some mornings I don’t get to study my Bible because noise woke me and continues. Sometimes there’s boredom and one wakes the other. It’s just constant awareness of ‘something will disturb the night and/or early morning.’
And then when you wake up, you have my chubby five year old and her driving commands. On weekends, her dad takes her on a few of the drives. At first he’d tell me, “Just say no!” when he’d see me reach for my car keys. Now he sees why I don’t. The screaming and crying destroys everyone’s peace. Agreement leads to peace. And added pain for me in my bad leg.
So, we have Violet who comes in too often. The agreement was Monday- Friday and two Sundays till 1pm a month, but she tends to come in on more Sundays than she should! And my nine year old doesn’t help. I cringed one Friday when he said to her, “So we will see you on Sunday??” And she agreed with him! I reprimanded both of them. But, they’d made their agreement!
Some days, I want to cry. Since yesterday, I’ve been in a flare. Bones aching, fatigue back, almost didn’t reach my 10000 steps. Morning has broken and my problematic right hip is not giving me s break despite my 200mg Tramahexal. And that’s on top of the tongue that has two sores on it that are so bad I’ve asked the rheumatologist for help so I can eat.
I agree with the rheumatologist. The stress must be causing fibro issues. But wow, it took three full months for my tongue to obey my brain. It was scary. So I’m never touching Lyrica again. Which means that though I’m already on an antidepressant because it helps with nerve pain too, I wake up with a sinking feeling or am woken up by someone that will cause a sinking feeling that lasts throughout the day.
Why?
“Another day has begun. What will I be putting my body through today? How many times will I reprimand fighting children? How many times will I have to deal with my two PDAers demands and my ten year old’s struggles and my non-speaker’s demands? How do I get out of the multiple drives?”
Violet tries so, so hard. A few times, my girl comes to me saying, “car..car…” and then she is content to play and Violet watches her to ensure she doesn’t hurt herself. Other times she pulls her brother onto a scooter (really meant for younger chosen but her likes to ride on it anyway) and he has to keep riding around. One time, that ‘play’ caused her to speak! I was in there watching them just before I made lunch, and every time he stopped riding, she would pull the scooter. At one point, she shouted, “Good job!”🤣
Sadly, more often than not, she can’t be distracted or doesn’t allow herself to be distracted from her driving urge. And so, if I don’t go, if I try rest, or if I try continue working, it will descend into screams which cause her twin to cover her ears and ALSO scream. And then she and Micaiah complain to me that “she’s making noise!” And if I am in the loo (my bladder etc issues are back and I refused to catheterise myself daily so I have trouble with that aspect- taking ages to relieve myself) she will become so upset that there reaches a point where even when I am now driving, she can’t regulate anymore.
So..I’ll have to do it and have to when she wants. This morning, I’m truly dreading this day. But also, thankful that for a few hours, I’ll have someone in the house who wants to take the burden away.
My children’s photographer when they are at the playground.
Good job indeed. Earned me a few minutes’ rest and time to make their lunch without Little Princess pulling me or pulling plates or dishes out my hand because I’m not going to the “car.”
They said I should write a book 