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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.


Filling you in

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See, I’m doing better already, I knew I could do it! But then, there’s something quite addictive about writing some ungrammatical shite on the internet and having people come and say actual things to you. That is, if you check your email and actually read those actual things, which is obviously something I also have to work on. Baby steps.

I have photos of people (Poss) graduating from PS and being all grown up and gossip about Rhubarb  (almost 16! It’s getting interesting!) that I shouldn’t share but will (a bit – in the most respectful and discrete way possible*). Those updates will have to wait though because they require the uploading of pictures and I am knackered. Despite plenty of warning that Christmas was approaching I have still managed to overload my body doing last-minute things that need doing in order to have Christmas. I’ve had to resort to the good painkillers tonight, which hasn’t happened in some time.

Here though is a health update in bullet points:

  • The pain doctor who was okay but not great has been downgraded to a status of just barely tolerable if there are no alternatives, which there aren’t. He’s promised great mediocre things but not really delivered. Round one of drug recommendations were almost all unhelpful. The exception being a different med for neuropathic pain, which makes a noticeable difference. I’ve gradually stopped taking all but some pretty mild pain relief, it was a significant reduction. I seem to need elephantine doses of all manner of things so it’s a pretty big deal to be on almost no pain meds.  Round two of drug suggestions was slightly better, I acquired one more med aimed at reducing muscle spasms but it’s not fabulous, just okay. Also, if you were to shake me now, I’d rattle.
  • The MRI results showed a few disc problems and a few things that Dr Passable said were obviously a source of pain. Naturally he then failed to move forward with a plan for treating said things or give any clues as to what might have caused them. It wasn’t until after that appointment that I realised that he had not actually ordered the correct type of MRI to properly investigate MS. Not that I am really worried about it but you’d think that (it being a stated goal of the MRI and all) he would’ve done that part correctly.
  • I’ve now organised through my GP the appropriate referrals for my discy problems. I didn’t bother pressing too hard on the “thingies” on the MRI, I have doctor exhaustion, I’ll think about it next year. Maybe.
  • Over the last several months my usual intermittent numbness, tingling, buzzing, burning etc in extremities (and other places) has increased in intensity and frequency quite a bit, to the point where I’d almost class them as a new thing. I mentioned it to my GP and she said not to worry. I told her that I wasn’t worried, however I feel that it’s prudent to mention these things just in case it comes up in two years and she asks me why I never mentioned it. She was also pleased to note that it couldn’t be to do with, say, MS because we checked already. I couldn’t bring myself to argue. I mentioned them to my Rheum the other day and she barely skipped a beat before ordering a nerve conduction study, which is tomorrow. The one thing that has come about really quickly and I hear it’s painful, or at least that’s what Rheum said. Bastards. She’s optimistic that I don’t need a proper referral to a neuro just yet (only a temporary one for this test) so that’s some sort of upside I think.
  • I’m coping a lot better with my pain levels. I am in a bit less pain thanks to some of my new meds but have also come to a good place of acceptance about things. I think it’s just about coming to the end of grieving for the loss of function and the being all pissed off about it and getting on with trying to manage with life the way it is. I still hope to get a bit better if we can work on pinpointing some other things but I am not counting on it any longer.
  • There are other things I won’t bore you – just niggly weird things my body has decided to throw into the mix. I think they constitute a whole post though so yeah, actually, I suppose I will bore you with them at some point. Lucky you.

I shall return with some sort of Christmas post in the next day or so. I am determined to find the time somewhere. It will likely be simply a photo of me wrapping presents but it will be something.

It’s a big day tomorrow though, I’m having a haircut. I last shaved my head in January and it’s now made it halfway down my neck. I am a hair-growing wizard. It will be interesting to see if the hairdresser (who is a friend and had better not give me a bad haircut as that’s what led to the head shaving in the first place) can make anything good out of it. We shall see.


* I obviously respect Rhubarb’s privacy (especially here) but there are some things that I am bursting to share. On the other hand, I am banned from discussing him in any way with friends and relatives. For instance, if I were to mention to my friend that he needed new jeans, that would be in breach of his rules. Really. Bless him.

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.


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.


Short and Sour: Waaaahhhh

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When your eldest daughter puts your youngest daughter’s water bottle in a bag OPEN and that bag happens to contain your iphone, the result will not be pleasing.

If your insurance will not cover said iphone because you recently switched polices in order to save money, it will not be pleasing.

If the good digital camera was also in the bag and is similarly defunct, you may lose your mind for a minute and tell everybody  that Christmas is cancelled.

This will be a mistake and will produce strong feelings of guilt. You will be forced to apologise to those involved.

Apologising will not fix your phone.

All and nothing

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A whirlwind of a weekend, we have had.

Friday evening Pudding got a new and very manly haircut. It is still kind of longish and wild actually but we like it like that. He was so very proud of himself for sitting still (on Beefcake’s lap) while his locks were chopped. He ran  out of the shop afterwards saying

“Did you see how still I satted Mummy??” &  “Did I do a  good job?”

Awwwww. Heart-melty. He well and truly earned his choccie frog.

There was a belated birthday celebration for Poss with her friends. This meant the her room had to be primped and prepared with new cushions and curtains and things. Of course we like to cram a lot in so we had new insulation installed throughout the ceiling Friday and we had shifted all the attic storage into her room. Cue long tedious cleaning and prepping. Still it looked lovely and she was very pleased with her new room.We made cupcakes and decorated them. It was sugar-laden and fantastic. The girls stayed up very, very, very late and Poss has spent the day today at less than her best, slightly snippy with us all.

I have firmly established that no glucose-based products may be stored in the house, whilst I am in this frame of mind. I am unable to restrain myself. It is not safe to be a cake or a lolly in the vicinity of Ali. It is particularly annoying as I had been doing a fantastic job of not eating anything sinful. Today I ate a cupcake and a handfu of m&ms for lunch. Perhaps I should go now to the kitchen and eradicate all sweet treats, that way I won’t be able to indulge tomorrow, I’ll be starting with a clean slate. Okay, I’m obviously deranged. I have asked Rhubarb to hide the from me. Far better idea.

This morning we went to the fabulous Adelaide Showground Farmers Market, which is seriously never disappointing. We have been members for about a year, which affords us a small discount, but even without it it is the most fabulous, fresh produce and it is not expensive. It has such a lovely buzzing energy to it and it always makes me feel really upbeat and filled with energy when we do our weekly fresh food shopping there. I lurve it.

Filled with markety type vigour, I mentioned to Beefcake that I would like him to build the washing machine/dryer cupboard that will allow us to demolish the snakehaveny laundry shed. Earlier in the week I drove past a local salvage yard that had put out some of their less desirable timber etc as “free firewood” on the curb. I sent Beefcake down today and he managed to pick up enough structural pine to build the frame for the cupboard and a door to use for one of the sides. I’m pretty impressed actually at our cheapskate ecostylee laundry cupboard. It cost us about $25 for dynabolts and screws but the rest was completely free. It needs a nice coat of paint (and a roof and a door) to prevent it from looking like a dodgy nightmare DIY monster on the back wall of the house but all in all I am very pleased. Tomorrow we will be able to finish it enough to move the appliances in and start the shed demolition. I heart demolishing stuff and will post a blow by blow. You’ll love it.

Also, my foot hurts

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I have written three or four beginnings to this post and deleted them.

I do not have my creative flow. My blogging mojo is absent.

I shall put a brave face on it, though and bravely push on with a bullet pointy type post that requires very little of my brain to be functional.

To make it interesting, let us divide the bullet points into two categories. “Awesome things that are great and happy and light up my life or are just funny” and “Whingey things that I could spare you but will not because I am selfish like that”

Awesome things that are great and happy and light up my life or are just funny:

  • Grub has decided to cut me some small slack. She has cut down her overnight breastfeeding to between 0 and 3 feeds overnight – yes you read that correctly, she had her first ever night without a feed during the night – and she has agreed to sometimes sleep for several hours in her own bed. I will admit that this is a very new trend –  she has only done it twice – but I declare it to be the new norm. I will shortly be  the proud owner of one of those modern, new-fangled sleeping-through-the-night-and-putting-themselves-to-sleep children I have heard about. I can feel it in my waters.
  • Spring has sprung. There is sunshine, there are butterflies, there are flowers (unfortunately with sniffle-making pollen to make my eyes water but let us not dwell on that). I feel as though a great grey shroud has been lifted from my person. Sunshine makes me happy.
  • Beefcake has been working very hard this month, doing a bunch of very long days in order to haul some projects at work towards their deadlines. This may sound like it is not such an awesome thing but what it does mean is that the slight overspend that we had with the original kitchen renovation, which has been hanging over each month and making me feel stressed and depressed, will be taken care of. We will be back in fine shape. It hasn’t really been a big deal but it would be nice to have a month where I do not have to plan our spending down to the very cent. It will be lovely to be able to purchase one or two things I have been putting off for myself because they were not 100% strictly speaking necessary. I feel much relieved.
  • The few extra dollars we might have will mean that I can perhaps paint the bathroom or re-tile the shower recess or re-enamel the very old bath. A bath should not have a rough abrasive surface. It will only be a minor bathroom refresh as opposed to a proper bathroom renovation as we will one day demolish this bathroom and it would be wasteful to replace it now but I am sure I can get it looking quite nice. I should show you what it looks like now – remind me to do that.
  • Beefcake and I bought a rare and much appreciated coffee to get us through playgroup on Friday morning. In the cafe where we purchased our take-away beverages, there was a family (two older parents and an adult son) eating fish and chips. It was nine thirty in the morning. We thought maybe they were tourists, they had the look of being not quite local about them. We thought perhaps they had just arrived and it was dinner time where they come from, or maybe fish and chips is a breakfast food in their country. I don’t know but I thought it was a bit odd. Would you go the deep fried seafood and chips for brekkie?
  • It is Poss’ birthday in less than two weeks and she has requested a shopping spree to redecorate her room with nice things. New bedding and cushions and such. Beefcake is completely puzzled that someone would want this as a birthday gift but I am excited  because it will actually be quite a fun thing to do. She has already chosen a new quilt cover and is planning a colour scheme she wants to work on – cute! I shouldn’t say that, she’s going to be eleven, that’s practically a teenager.
  • Also on the topic of Poss’ burgeoning adolescence. The other day she was excitedly telling me about a school project when, to my delight, she threw in the tweeny term “totally random”. I have been unable to resist taunting her. She hates me. What fun.

Whingey things that I could spare you but will not because I am selfish like that:

  • My body is an unpredictable and vile hell-monster with it’s own independent and beastly identity. I was feeling fab on Friday and went to the park with the small kids and the friend that used to come to playgroup (you remember) and her two girls. I had a spring in my step. It was great. I felt as though things were on the up and up. As some sort of cosmic punishment for feeling good (yes, I am melodramatic) I dislocated my wrist when I picked Grub up off of the slide. No odd movements or anything. Just picked her up. I couldn’t bear to tell my friend. I feel like a hyperchondriac so I grabbed my wrist and we walked home – lucky the park is around two minutes away. My wirst was very swollen and purple that night but is beginning to feel better now. My pelvis has arced up again quite badly. I am on a neverending merry-go-round of crap.
  • Beefcake is working insane amounts. It will not stop this week. He will not be being paid extra for anything he does now either and he is mostly picking up the slack for other, slackarse people. Very frustating but at the same time I must remember that he is here, at home with us and we are actually extremely luck – so shut up Ali.
  • I have been comfort eating. It is a pain/depression thing. I am usually pretty good but I have dropped the ball with my eating and I feel quite grumpy with myself. It is made worse by the fact that I am still carrying the vast majority of my baby weight from Grub and I can not exercise at all really. I feel really guilty about it and sometimes that seems to actually make it worse. It is a whole self-perpetuating cycle of self-loathing. I need to take control of it but some days having to be really careful about what I eat seems like a step too far. Like it will just be the thing to push me over the edge. I need to get a grip.
  • Also, my foot hurts.

There you have it people. You’ree lucky I don’t blog more often really, aren’t you?