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A bit of this, a bit of that

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I’m struggling a bit at the moment. My body is deteriorating ever so slightly all of the time. There are many nights that I think about blogging but seeing as I usually can’t move my hands by that point, or sit up etc, etc, it never seems to happen. I promise myself that I’ll manage it during the day but I’m only just successful at dragging myself about, doing the things that my family needs, there is never the time or the energy for even opening my laptop.

All of that must sound pretty grim and in some ways it is, I’m worse than I have ever been and I am trying to manage that with almost no pain relief. I am happy not to add pain relievers to the chemical cocktail that I must take every day but I also sometimes just wish for a break. The funny thing is that I am probably happier than I have been since my disease began. I can accept it (which doesn’t mean it’s any less draining!) and I am just getting on with life instead of fighting against being ill all of the time.

My big girl started highschool this year, I was so stressed about it, she’s such a naive and I suppose sheltered girl. I don’t really know how that happened! As is usually the case though, she has surprised us. Poss has taken to her new school, new friends and new responsibilities with ease. As long as we don’t focus on the lost USB and house keys – aaaarrgghhh! Who puts those things in a non-zip pocket? They were on a lanyard for a reason! She’s off to her Year 8 camp tomorrow  (ooh crap – remind me to go and get small tube of sunscreen, won’t you?). She seems happy and she seems more mature every day.

Rhubarb (he’s 16 now, the horror!) has started Year 11. Despite serious finger wagging talks before school resumed he came to me last week with a look that said “I am weighed down by the weight of a thousand weighty things” and asked for some guidance with an assignment. There followed three hours of sitting with him while he worked and gently nudging along the process. In fairness to him, he’s doing a lot of pretty heavy-duty subjects and even if he asks for help, it’s for small things rather than “could you just write it for me, Mum?”. Mainly because he knows I would laugh. He told me that maths (which is usually a strength of his) has started moving ahead of him just a bit too fast and he feels like he’s not keeping up. It’s just hit him that this is quite a serious business and it’s not getting any easier from here on in. He’s finally accepted the wisdom of our approach to homework scheduling but he has accepted it in that resentful, I’m not acknowledging that I have accepted it way that only teenagers can muster. I know he’s 16 and it’s to be expected but could he be any more moody? And there are girls hovering around. Do you realise that I am not yet 35 and could end up a Nana by the time I am if he’s not careful. It’s terrifying.

The little two are just as time-consuming but more cute so it evens out.  Okay, here is where I am really concerned about how little I have been blogging. I can’t remember what I bloody call the 6yo here. That’s troubling. I’ll have to remember that or think of something else by the time I come back to update about them. That’s the thing about infrequent blogging, there is so much to say that the posts become epic and completely without focus.

I shall return soon.

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See how long-winded and ranty I get when I talk about him? That in itself explains everything really.

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On Sunday we were subjected to another round of the emotional blackmail that the kids’ school uses to bleed us dry. Last year we declined to take part in the inaugural “we’ll frame your kid’s artwork and charge you $20 to take it home” art show but last year we didn’t have an easily heartbroken 6-year-old at school. Poss wasn’t thrilled about us not buying her handiwork but, because she is a big girl, she understood. There is no way on Earth we would be able to get Skunky (the child who wakes up in tears at 3am due to some random slight that occurred a month ago) to understand. We also couldn’t try to trick Skunky into thinking we’d just forgotten about the whole thing, Poss was singing with the choir to open the new school hall at this year’s art show so we had to go – and then we had to shell out $40 for both kids’ art.

To be fair, they were both lovely and we had fun watching Poss sing and oohing and ahhing over everyone’s art.

Skunky’s rainbow fish, or rainbow whale to be exact. Whales are an obsession he’s maintained since he was three. He’s got staying power.

Poss’ Mama and baby bird. I loved Skunky’s response to this, once he’d wrung from me the desired compliment (that I loved his best), he gushed about how beautiful he thought it was. I agree, she’s always been an obsessive crafter, our Poss. I can imagine how many hours she spent getting each piece of paper placed correctly, just as she did when she was four. She used to spend hours making sure the pages of her colouring book were coloured in perfect detail and inside the lines, no short attention span on that girl. You can almost see in my blurry photo that she’s included a darling caterpillar on a branch.

The big kids had spent the previous night at their Father’s house, this after he called Beefy (not me you’ll note*) to insist that he be allocated a weekend once a month for each of the kids so that he could spend time with them separately. I had to explain to Beefy (who would’ve realised eventually but is not to good at thinking on his feet) that neither child would be ordered to spend a specific weekend with their father at this stage of the game (about to be 13 & 16 respectively). Moron’s imagined that they don’t want to spend time together and that’s at the root of their refusal to go, because it’s not as though they live together  or anything. Stupidity abounds over there. As expected the kids were unimpressed with his demands and also promptly agreed to go over for the night, TOGETHER. He doesn’t seem to get that:

a) This is their home, where their things and their respective caves of solitude are

b) They now have social lives, social lives that happen on the spur of the moment. He lives miles away and both of the kids have friends within walking distance here

c) They often can’t really be bothered with his house. The stepmother, who can be lovely and hellish in equal measure, and the fact that he and the stepmother do not seem to understand social cues very well make it a difficult place to be. Teenagers (or tweens) can be very “meh” about things, not because they don’t care (although often they don’t) but mostly because they can’t be bothered, Moron and The Stepmother don’t seem to grasp this. The kids have been taken home from a restaurant because Rhu didn’t seem appreciative enough that they were out for tea, he didn’t even say anything (in actual fact he just had a headache). The Stepmother threw a tantrum and insisted they all leave without eating. In essence they have never treated the kids like people, rather they are little monsters to be controlled and cajoled. The Stepmother has a short fuse and it is very, very easy to upset her, to the point that she screams and cries. Moron tried to force Rhu to give her a present, kiss her and tell her he loved her to make up for cracking a joke about a cake she made. Mama’s can’t afford such thin skin, and in any case it was really a joke, Rhu likes her and wasn’t trying to be mean. Anyway, they just can’t relax there, they have to be on guard and they’ll only subject themselves to that so much – now that they really have a choice.

d) They are nearly 13 and 16 respectively. They have not lived with him since they were not quite 2 and 4. During the intervening years he has breezed in and out of their lives (mostly out) sometimes not contacting them for (many) months at a time and when he has been in he has caused them both great distress at times. We used to get Rhubarb home from his fortnightly visits in such a state, he was out of sorts for a week after each visit, tears and tantrums, tears and tantrums. We would work to get him on an even keel again only to send him kicking and screaming back to them again. It broke my heart over and over. Moron either believes he can magic a strong relationship out of his arse or he believes that he already has one with his kids and I am being all evil and chaining them to their rooms and refusing to allow them visits. Probably both. He is not a man with a firm sense of reality. He cannot, for the life of him, understand why the kids won’t have their friends at his house or have birthday parties there, he thinks it is because I’ve been badmouthing him. He’s given the kids both talks about ignoring my relentless bashing of him, which they thought was hilarious. I didn’t agree. He even managed to imagine he could hear me saying nasty things about him to the kids whilst he was on the phone to Beefy (because that’s totally a likely behaviour for me to indulge in).

Anyway, the kids are soldiering on and will visit him as they see fit, which has been the arrangement ever since we came back from the UK over three years ago. They shall remain completely ignorant of his carry-on in the background because that’s the way we’ve always kept it but in the meantime I might go gray with stress, oh hang on, already happened. As you were.

*A while ago Beefy stopped me from talking to him, mostly to spare me the stress but also a little bit because I sometimes lose my shit when I talk to him, just a touch. He does not inspire my zen. Moron has caught on to this over time and doesn’t ever contact me directly now. That in itself has brought about some “ishoooos” but that’s another post entirely.

Poor Time Management and Running, Running, Running

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I’m not keeping on top of things. I am trying to push myself as hard as I can during the day. I am still struggling with the concept that I can’t do things. Of course, I try to protect my body as much as I can but I just get so frustrated with the mess and the jobs left undone and, and. I think I’m trying to claw back just a bit of functionality, the amount of pain medication it takes for me to do that is immense but I suppose that’s just how it is. I am seeing the private pain sepcialist on September the 8th and I am just hoping, hoping, hoping that he will have some new ideas, my GP desperately wants someone to share the responsibility with, she’s a nervous wee thing.

Over the last couple of weeks I have written several part blog posts, I just never quite get the time, or  I suppose, the time and energy in combination to complete them. I have been missing my online life so much, I have to try harder to pull the time and energy from somewhere.

Skunky’s birthday was mostly good, the cake was really cool, if somewhat disturbing. What can you do though, when your six-year-old wants a zombie head on a plate for his birthday cake? He triumphantly chopped the head in half, shortly after this, to reveal the bright red contents.

I managed, with the aid of a bucket of painkillers, to keep myself going throughout. As a result of my charming mother I ended up in my room with a friend having a little weep. I always forget her capacity to be completely self-centred,  it’s wishful thinking that makes me believe she’ll be kind or helpful or supportive. Thanks to my lightning fast brain I had my retribution. I forgot her birthday yesterday until about six o’clock when I noticed that people had been sending their well-wishes via facebook. I had even been texting her throughout the day so it just shows how talented my brain is, I think perhaps Brain did it on purpose. Did you Brain? It never answers me, bastard.

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Finally the warm weather is making an appearance. Skunky had been agitating for a visit to the spooky trees (immense Moreton Bay Fig trees in Botanic Park) so we headed there for a picnic on Sunday with Poss, Skunky and Gecko (Rhubarb declined on the grounds that he would rather be alone at home and we suck, which was nice, 15’s a golden age). It was lovely and the kids had a ball climbing around on the tangle of roots.

And running. There’s something so beautiful about watching Gecko run, she’s very graceful, for a girl of 3, graceful and fearless. I adore this picture. I was watching her run with her hair trailing behind her and I had to capture it.

And now, I’ve done something terrible to my left shoulder (the bad shoulder) in the act of typing and if I don’t stop I fear it will fall off. Pain relief, here I come.

 

Burning down the house (actually microwave but house sounds way more dramatic and it’s a song so I’m going with house)

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I use heat packs a lot to manage my pain. They allow me to use less pain medication and, since no bastard will prescribe me anything for muscles spasm (when they have it’s helped a lot), they help a bit to relieve the horrible, muscle spasms that are a big part of my life. This means that some days are just endless rounds of reheating my rice-filled socks in the microwave.

Being so well used, the rice in my heat packs tends to dry out over time. We replace them fairly regularly but inevitably, there are one or two filled with dry, brittle rice grains.

Last night after dinner, Beefy took my heat packs to be done in the microwave. Gecko needed help with something in the toilet (as you do when you’re 3) so he was in there for a few minutes when he noticed a strange noise. He yelled for Poss to check the microwave and at first she thought it was fine because she didn’t actually look (as you do when you are 12). When she had a proper look Beefy says he heard a panicked “Ah, Daddy, the microwaves on fiiiire!!”.

Beefy raced in and was able to blow out the flames (note to me: Buy fire blanket). He dumped the offending heat packs in the sink and doused them with water then turned to survey the soot covered microwave.

You know that metal plate that is on the wall of a microwave? Well, that plate was very soot covered but more worryingly, when he poked it, a hole, about the size of a ten cent piece, collapsed into the side wall. The metal plated had been charred so badly that it just crumbled away. We think there must have been something actually really wrong with the microwave, or the socks just caught on fire because it wasn’t spinning properly. Either way, this was the result:

So, Beefy’s probably dying of deadly microwave radiation exposure or something and also we needed a new microwave. Very bad timing for me as I had delayed my visit to the GP too long and ended up not being able to get an appointment until Monday afternoon (pain med rationing) and also I had my usual close-to-being-in-labour-style pain/bleeding like I’ve been disemboweled monthly torment so I REALLY needed my heat packs. Really, really.

Last night was not the funnest night ever and today we had to venture out to the land of the giant W to find the cheapest non-ugly microwave we could find. The decision was easy as there was only one microwave that was so deep that the front legs would hang over the designated microwave shelf. We, being entirely ourselves, decided there was no other microwave that would suit.

Still, t’would not be our kitchen if it were lacking in dodgy, botchy home finishes. A few swipes of a circular saw to some spare kicker and we had our solution. See those black boards that are supporting the legs? Not too obvious in this photo (thanks Beefy) but in real life they are tres chic.

This may seem like a pretty annoying, money-draining adventure but actually I’m quite pleased. Not just because that microwave was always annoying but because there was a major family property-destruction fuck-up in which I was only a minor player. Totally not my fault, really at all. That almost never happens people. I am still utterly exhausted, though.

So, how was your weekend? Oh, except all of you NNB2011 people, I’m not interested in your weekend, I’m sure it was really boring anyway, *sob*.

That light bulb moment

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Only a few days until the end of school term here.

The end of Skunky’s second term at school.

He’s changed so much since he started school. In the year before he started school, try as we might, we could not get him interested in learning to read or write anything. Kindy could barely pin him down long enough to scratch a crayon on a page a few times. There was too much running and jumping and climbing to do to be bothered with all of that.

Just before he started we convinced him to try writing his name. We managed to get him to sit still long enough to make a vague approximation.

When he actually started school we were pleased with the fact that he loved it. He loved to sit and be well behaved and listen to his (gorgeous, seriously, I am so thrilled that he got her) teacher. We heaved a sigh of relief, we had been worried she’d be unable to convince him to sit still, let alone learn to read and write. We were worried that school might not be a great fit for him.

Turns out he’s a rule follower though, just like his Mama. He actually might be too much of a rule follower, he thinks it’s his job to police the “bad” children who don’t follow the rules so carefully, but that’s a post for another day.

From the beginning he’s adored the idea of reading, of learning about sounds. Within a few weeks he was sounding out all of his words rather than just speaking them. Hardly irritating at all*.

Despite his apparent love for sounds, the reading just hasn’t been clicking like it did so easily with the two big kids. He’s been learning, for sure, and making slow progress but it seems to have taken a little bit longer for him to have that light bulb moment that hails the beginning of real reading momentum.

We weren’t that surprised, after observing his learning style over the years, we kind of expected it might take a while. He’s a slow and steady sort of guy. Still, after the other two kids, it’s been a new thing for us. Especially in a household where reading is everyone’s favourite pastime.

He gets frustrated easily and doesn’t like us to help in any way shape or form. Tears come easily if we try anything other than just sitting by him as he works at it.

Writing has come even harder. As I said, he’s never been huge on the fine motor tasks. They’re just not his favourite. He had some extra help from the class SSO in term one but when more new reception kids started this term he was on his own. He’d made some good progress by then but we still didn’t feel like he was really getting anywhere fast.

We’ve been really happy to let him take his time and his teacher has too so we’ve just continued to sit by him as he practices.

In the last couple of weeks he’s suddenly had those moments of leaping forward. He’s literally taken the pencil out of my hands and said “I’ll write that for you mum”, when I’ve been filling in his reader chart. He’s written his own list of things he wants for his birthday.

He’s reading things that are not school readers. He’s making jokes about things that he reads, using word play.

The boost to his self-confidence has been a beautiful thing to see. He knows he can do it. He’s starting to feel that buzz that independent reading can give. I hope he is able to feel that for the rest of his life.

Today he brought home a page of colouring in. Lots of tiny parts that he’d coloured in beautifully, all the elements in different colours instead of grabbing one colour, waving it at the page and moving on to something else.

It may not sound much but it is. It is huge.

He puffed up his chest and lifted his chin when I told him how lovely it was. I always tell him this, about everything he brings me but obviously he felt that way about his work today too.

Today we received his first ever school report.

His teacher echoes all of the things we have been thinking. I really wouldn’t have cared if she didn’t. It’s only a school report and yet, it’s a first, he’ll have many, many more but this is the first.

I was so proud when I read it, I told Beefy we should frame it.

I knew he would get there, of course, but I can’t seem to stop smiling about it.

He’s getting so big, my boy.

 

*After a week I was ready to tape his mouth shut.

 

Agitated in the bedroom

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Being in pain all the time is hard.

It does make me feel overwhelmed at times, and anxious and yes, even a bit depressed.

Depression was one of the key things that the PMU were focused on. They recommended that I begin taking an antidepressant. I suspected at the time and am now even more certain that they thought I was suffering from Fibromyalgia (FM), which is fine but if they suspected it, why did they not say that. Apart from being completely disrespectful, attempting to medicate someone for a condition without telling them you think they may have it? That’s just irresponsible and wrong. Were they planning to burst out of a cake bearing the slogan “Congratulations, you have Fibromyalgia!” at my review appointment and say “We knew you had it but we wanted it to be a surprise!”?

When I went to see them, I can see how they must’ve thought I was in a pit of deepest, blackest SAD. It was a combination of factors that made me so emotional when I saw them:

  1. It was very intimidating and confronting going through that whole process, it was just horrible, frankly.
  2. I had some of the worst PMS I’ve had in my life. The things that made me cry that week are laughable. Really, I was ridiculous.
  3. I was taking prednisone which makes me crazy (letsgetupat3amandcleanoutthekitchencupboards style) and also makes me cry at the mere thought of something emotionally stirring like oh, let’s say, bagpipe music. NOT joking.
  4. I actually was feeling quite depressed and anxious at that point BECAUSE OF THE PAIN!

Those things probably combined to make me seem like a complete loon and it’s no wonder they wanted me referred to a psychiatrist. I don’t blame them because they can only base their assessment on a brief snapshot of who I am.

It’s less easy to excuse the complete disrespect and disregard for the fact that I have never been depressed before (excluding a very bad teenage period). They questioned me about depression, over and over and over and….. you get the picture.

The other thing that I take issue with is the fact that they decided that my feeling depressed must be causing my pain. I tried to say that it was the other way around but they weren’t into that.

Lots of FM research suggests that sufferers commonly experience depression, I accept that, however there are also those who experience no depression or only experience it after the onset of pain.  It may be that antidepressants would help me but I would have to be a LOT further down the road of depressive illness to want to test that theory.

As it is, just the prospect that this medication might give me a bit of life back has changed my outlook completely. It’s amazing what relief it provides to have someone look you in the eye and say “I know you are in pain and we are going to fix it”. Just like that, a great weight lifted. I believe in R and she believes in me, that’s a doctor-patient relationship as it should be.  Trust and respect.

I belong to an RA forum and naturally, many of the RA sufferers there also suffer from FM. It is STAGGERING to hear how many of them have been told by doctors that FM is a fictitious condition created by bored housewives (really). I wonder, if it were a condition that was mostly diagnosed in men instead of women, how would it be treated? I wouldn’t mind betting that men wouldn’t be accused of having a “hysterical” condition and imagining their pain. It’s very frustrating that it’s such a long road for researchers to establish exactly what’s happening in FM but there are plenty of studies to show that there are differences in the central and peripheral nervous systems of FM sufferers. Actual brain differences. I wonder how the housewives managed to imagine that into existence? It surely can’t be a coincidence either, that 20-30% of people who suffer from another chronic pain condition (RA) also end up with FM. Sometimes the FM diagnosis comes first but there must be something going on there that connects the two.

At least I have something to research and get agitated about about whilst I lie here waiting for the medication to start working for the next couple of weeks.

Beached

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Yesterday was  a pleasantly sunny day here in Adelaide so we decided to bundle the kids and dog off to the beach for some hot chips and a play.

Skunky was convinced there were crabs lurking just under the sand ready to nip his toes and informed me that he would not be paddling, thankyouverymuch.

After we ate our chips, Poss and I convinced him to just come and have a look closer to the water’s edge for lovely shells and rocks because they are his weakness.

Within minutes of being near the water, this happened.

This is after I’d removed his completely soaking shorts. Luckily Beefy was wearing a shirt on top of his t-shirt because we were able to strip Skunky of his wet things for the trip home. I rarely take spare clothes anywhere for him these days and it was REALLY not warm enough to swim so I didn’t think he would end up that wet. I underestimated him, clearly. He was “battling” with the waves and rolling around on the wet sand every time he was “attacked” by the waves. Yes, really.

He and Poss also made a “blob” castle, which they defended valiantly until the incoming tide became too ferocious and then they destroyed it to “spare” it the pain of being killed by the waves.

All in all it was a pretty successful trip. I tire easily so we were only there for a couple of hours but that was probably a good thing as Gecko was terrified of the sound of the waves and insisted on being cuddled on someone’s lap as far away from them as possible.

Thank goodness for big brothers. She did manage to recover eventually and do some hardcore digging and bucket filling.

It’s a bit sad that we don’t get to the beach more often really, it’s only a half hour drive or so away but it if we don’t just do it as a spur of the moment thing it always feels like such a lot of planning and driving and we talk ourselves out of it.

I must try and remember that it’s not that hard.