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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.

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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.

I’ve got the FEVER!!!!!

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You know how it is.

You blog, play on the internet for a little while, then leave your laptop open, sitting down the end of the bed. Beefy closes it when he comes to bed.

The RA fevers, which are new to me (I thought I’d craftily got myself drugged up early in my disease and wouldn’t get them, wishful thinking much?) are bad and you can’t manage everything, getting out and opening the laptop seems so hard, and you wouldn’t be able to concentrate anyway. It’s best not to be too out of it when you’re going for a jaunt around the internet, anything could happen.

You check your phone for emails that need replying to and there are none.

It doesn’t occur to you that the laptop stole them while it was open.

The house is running out of food, you can’t put off the online shopping any longer.

You open your laptop and whoosh, it fills up with emails. Comments that you haven’t replied to, emails that you haven’t responded to.

You feel guilty.

Everybody else seems to manage to blog constantly and be all over twitter and, and, and.

I’m sorry that I’m a bit crap. My body makes demands that I can never seem to meet. I feel like I’m always falling a bit short, sometimes a lot short. I find it so hard to keep up in all aspects of my life. My kids get less, my husband gets less, my friends, my housework, my hobbies. Sometimes I feel like I’ve come to terms with my limits. Other times I am still longing for who I used to be, longing for everything to be easy. still put on the good front for almost everyone. Why do I do that? I think it’s because I’m embarrassed, I’m prideful. I don’t want anyone to see me as less. But it’s true, I am less. Less everything. Even though I know that this is life now, I don’t want to change how I see myself. Letting go of that other self. That self who was more. Who could do more.

Wow, I think I’m feeling a touch melancholy today, moving along.

As promised, a photo of the very green bathroom:

Now, when I bought my sarape, I promised that I would provide a photo to demonstrate the awesomeness that is the blanket. Today, whilst still in my pyjamas, with bed hair, I tried to take a photo of myself with my blanket. I couldn’t get a good one so I asked Poss to help me. She LOVED helping me take photos and we might have gotten a bit carried away with the posing and the giggling. In the end she took A FUCKING LOT. So, I thought I would share with you a selection of the photos we took, including the one where I hurt my back, see if you can spot it. I don’t know why I said that, it’s not hard to spot. Anyway, enjoy!

P.S. I don’t even let photos of me be on the wall, there are three small wedding photos and that’s it. I can’t believe I just did that. Blame the fever.

Everything is bright green

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We’re expecting visitors (Beefy’s friend who I’ve never met plus his wife and his brother). They’re just stopping in overnight on the way back to Sydney – the tail end of a road trip. I’ve known this for a while but now it feels like decidedly bad timing.

The bad timing hasn’t stopped me from going into full-blown clean and pretty-up the house mode. I’ve stopped short of hiring a bulldozer, knocking off our lean-to bathroom and building an addition for them to stay in – but only just.

On Saturday we had to attend a family function, which was the last thing the boob and I wanted to do. I was pretty wiped out after that so got nothing done.

Sunday I dragged Beefy outside to help me organise  our accumulated backyard junk. I talked him into taking the circular saw to an old door as I needed another shelf in the loungeroom. When it was cut I thought I’d just add a light coat of lovely green paint (vibrant grass green, a colour that seems to pop up in our house a lot, don’t know why*). I just painted the bottom of the door/shelf to cover the disgusting mission brown and I was quite pleased.

As that had all gone so well and I wasn’t exhausted I ended up on somewhat of a roll. I have a habit of undertaking major house changes on a whim. I get all fired up and Beefy has learned to just go along for the ride, bless him.

I suggested that a virulent green ceiling and white walls would be a much better bathroom colour scheme than the light turquoise that reminds me of hospitals for some reason. He agreed but was quite sure there would not be enough paint. I, in turn, declared that there would be enough but we compromised and agreed on painting the manky creme ceiling.

I was so eager to see it done that my usually careful cutting in was quite slapdash and I made a huge bit of a mess. I (truthfully) explained that it hurt my arms/wrists/hands to paint so slapdash was easiest. At this point he still thought we would eventually paint the walls white.

I then suggested we paint just one wall green.

We have a green bathroom now (photos to follow). I adore it but, well, let’s put it this way, it has wow factor.

Yesterday I woke up very sore and sorry for myself but as the madness still has a hold of me, I painted the underside of all of the other loungeroom shelves green. In my bathrobe.

In typical me style I brought the paint in before I had removed any of the books and photos from the shelves. We ended up with a large mound covering our entire loungeroom floor. Beefy didn’t say a word. Bless him.

I think he knows that I have to keep myself ridiculously busy right now.

The second course of antibiotics didn’t work. My breast is swollen and very, very sore. It is a funny shade of purple and well, other odd stuff, which you don’t want to know about.

Ultrasound is on Thursday afternoon.

Motherfucker.

 

*I love this shade of green. It makes me very happy. Our kitchen has a wall this colour. Also our bedroom curtains. And our shower curtain.

Just ticking along, hopefully, I think

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What is it with me and the temptation to just pull away from everything that makes me happy when I’m having trouble?

I stop blogging first. Fair enough, when you’re going through “stuff” sometimes you just need to keep yourself to yourself*. The next thing to go is reading other people’s posts – I don’t want to comment because that would be like talking to people and we all know that’s the last thing that will help when things are going wrong in your life. So, no commenting means no reading because if I read I will want to comment and I can’t even wrap my head around what other people are doing right now so really it’s best if I just leave my feedreader right alone. Now, because I can’t read blogs, it’s better not open my laptop because if I do I will read blogs. I mean, that’s what the internet’s for, right? I can’t imagine what else people might use the internet for (with the exception of obsessive googling of course, but I can do that from my phone or Beefy’s my ipad. Also, I can’t email bloggy people, even those who have specifically offered their shoulder to cry on. Not because I’d have to open the laptop but because that falls into the category of INTERACTION.

Before you know it I’m just collapsing in on myself from all sides, making myself small so that nobody can see me. If they can’t see me they won’t try to interact with me. It all works really well. Awesomely, in fact, if you want to lose your mind.

I’m not sure why I need to learn this lesson over and over again. I need to blog and I need to interact.

I’m pretty pleased with myself though, I actually talked to my very dearest soul-mate friend about “things” and before you think that’s easy, it’s not. When I dropped out of my career 6 years ago to have Skunky she kept working. She now has a million and five things (including Ph.D- can you tell I’m proud of her?) happening and lives far, far away and between my four kids and her two and everything else, we have to schedule getting together (or even a long phone call) with military precision. When you add in my strong tendency to keep things to myself it’s really something to be proud of.

Then I got forced, literally forced, to be on the laptop. Beefy put a new operating system on for me and after a couple of false starts I LOVE IT. It’s all bright and shiny and new and he didn’t set anything up for me so that I could play and put things the way I want them and, and I can make it pretty. And it’s cool. And pretty. So I have to blog now because I can only play with it for so long. I have a short attention span.

Anyway, things are ever so slowly getting a bit better. It’s still not wonderful but I can go whole days without crying (much) and I can now believe that we might eventually return to the normal state of things at some point.

I’m not sure how things are going with my badly behaved and ornery body. The new pain med seems to be helping a bit but we will have to up the dose if I am ever going to function. I bent down for five minutes or so to pull a couple of weeds out of the vege patch on Friday and something in my back (pelvis) went “clunk”, which spelled three days of not being able to walk (really, Beefy had to carry me to the toilet, not fun). I keep saying to my Rheum and GP that things will click in and out and cause surrounding muscles to spasm. Everyone acknowledges that my body does things it shouldn’t but they don’t seem to be able to process how much the muscles spasming all over the place contribute to pain. You just can’t mask that sort of pain, you have to stop the muscles from spasming.

I feel like I’m at a dead-end. I know we’re not quite there with understanding what’s going on with the bod but I can’t seem to push them to see that too.

We went back and checked my diary to see of there’s any pattern to things. Every month just before my period I put my back out, that can’t be a coincidence, can it? I read something the other day that said that the increased relaxin levels in women at that time of the month can cause problems for those that have had pelvic instability during pregnancy. I’m wondering how much difference it might have made if I had seen that orthopaedic surgeon at a different time.

Maybe I just overanalyse anything. I can’t help it, I’m just looking for something that will make everything make sense.

Somebody needs to put me in a google-free environment so I don’t keep searching for answers. It’s an obsession.

Finally, thank you to everyone who contacted me, either privately or through comments. I’m sorry I didn’t get back to people, I just couldn’t, I’m sure you understand.

* Yes, I’m aware that I did blog about it. That particular post is gone now, for the time being, maybe. That’s probably wrong or not sharing things warts and all, not being truthful, whatever. I can’t bear to have it looking me in the eye when I come here.

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.

In which I am not good at being a basket case

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I’ve been seeing a psychologist to try and “discuss” how my pain is making me feeeeeeel.

The thing is. I don’t think I’m very good at it.

I think – and this is just a guess here people, correct me if I am wrong- that I am supposed to tell her stuff and it will help me feel better and I will gain a deeper understanding of my inner workings. The thing is. I think I am just too private a person  (says she airing her innermost for strangers on the internet) to make it work.

First of all. I spend half of the session consciously forcing myself to make eye contact with her. I am really bad at eye contact in this sort of situation. I want to crawl into a hole. So I am there trying to make myself look at her and internally debating with myself that it’s probably okay not to make eye contact all of the time and then realising I’ve stared at the table leg too long.

Then I can’t decide what I am supposed to say to her. I mean she asks questions and things but they are so open ended and I could go in any one of a billion directions with it and half the time I find myself meandering off in some unrelated direction and having to somehow swing it back to something remotely related to what she was trying to get at. Then I am sure I have done it wrong and then I have to pretend that what we have been talking about has somehow deepened my self-understanding and given me things to think about. What I am actually thinking is, oh my god, how am I going to think of things to say for the next forty-five minutes?

It doesn’t help at all that I am actually emotionally fragile at the moment. Look at me the wrong way and I will either cry  or in the case of Beefcake cry and attack with the nearest sharp object. I probably do need to “talk” to someone about “things” but I just don’t think I am going to be able to really be open and honest with a complete stranger.

I mean, I say stuff. I have plenty of juicy and significant life history to share, all very meaning-laden and important BUT I’m pretty lazy* really. I can’t be bothered rehashing stuff, or maybe I don’t want to think too deeply on things, I don’t know.

Either way I think I am done with it. We have talked about some things which have helped in a way. We have talked about how I am, by nature, not kind to myself. We have talked about the fact that this is not good. I have cried a lot but as I previously noted, that’s not really a feat at the moment. I saw her today and left utterly exhausted. I feel so on my guard while I am there that it’s completely draining.

I am so self-defeating aren’t I? Go on, I know you were thinking it. I think I shall try and leave it for a while and see if I can come back to it later. That sounds good, yes? Considering I have to spend days mentally preparing for any appointment with doctors or anyone really (or you know, working up to making a phone call) I think this is just one more health professional I don’t need to have to deal with at the moment.

I will have to convince Beefcake that I should be allowed to crawl into my little doona cocoon and hide from it all for a while longer. That will be easier said than done as he is all about the making me do things that I don’t want to do.

Bastard.

*Dingdingdingdingding – a word I am not supposed to say or think in relation to myself. This stumped me for a good while as I was supposed to think of a word that I should say/think whenever I say/think that I am lazy. That was really HARD.