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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.


Holding Pattern

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Oh, how I wish I could come here and say that I have turned a corner. That the massive injection of steroids I had last Monday or the four week course of pred did it’s job and my body is now taking the hint and laying down weapons, stopping it’s vicious unprovoked attack.

I wake up every morning and try to lay for a moment and run through what’s going on in my body. Check each joint, how are the pain levels, Ali? The answer is always the same. It’s like waking up to the roar of a furnace blasting my entire body with white-hot pain.

We go through the routine. I call Beefy (who has already been up for ages and taken the kids to school, usually) and he gets my morning dose of pain meds, gets my breakfast, heats my eleventy million rice filled socks and giant pillowcase (also fetching children’s tights wrist bands) in the microwave so that we can try and get some of the muscle spasm under control and I get some pain relief while I wait for the meds to kick in.

I make a deal with myself that I have to eat x amount of whatever breakfast is and them I’m allowed to stop. I have almost no appetite. All eating is a bargain I make with myself. You have to eat enough to keep going, Ali.

Beefy tells me: “Look how much you ate! Well done.”

We laugh but my smile is tight. The laughter hurts.

I saw a different GP in the practice a couple of weeks ago when my back had some sort of drastic muscle spasm attack that left me in unprecedented pain. She prescribed muscle relaxants that help SOOOOOOOOO much. My GP is really against me taking them. She keeps asking me if I have.

“They are addictive you know”.

“Only occasionally”, I say. This is mostly true. Yesterday was a terrible day, I had three yesterday. Three is half the maximum dose as prescribed but three is three too many for my GP. They just help soooo much. Sometimes I just need the relief. I feel guilty.

I am just making my life bearable from moment to moment.

Still don’t know about bone scan results. I can’t imagine that they will show nothing. How is that even possible when I feel so awful? It is possible though. If anyone is going to end up with useless bone scan results it will be me.

I read up about the anti-depressant the PMU want me to take. It is not indicated (even off-label) for my condition. It is indicated for osteoarthritis, fibromyalgia, neuropathic pain caused by diabetes, anxiety and depression. Rheumatoid arthritis? No.

I read studies and reports from patients. They report very little help with pain and terrible, crippling side-effects. Even those prescribed it for depression who have had some success say it was a nightmare in lots of ways. To cap it off, there are apparently months of relentless, horrific withdrawals when you try to come off it.

Why would the PMU think it would be a good idea for me to try this drug if they are so concerned about my being addicted to pain meds?

They are moronic arseholes.

There can be no other explanation.

I had left myself open to the idea of trying it at some point but now I know that I will definitely not try it. Some of the patient reports said they had been off it for months and were still suffering. They said they were scared they would never feel normal again. There is nothing any doctor could say now to make me try it. I will not take the risk.

I am waiting to here back from the Rheum. I hope she has something else to try.

I am just waiting.

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.


*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.

My immune system is an arsehole

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We’re on trial of drug number 3 now. The first two didn’t do a thing for my joint pain or inflammation. Meanwhile, my immune system is going into meltdown and one by one my joints become stiff and painful. This drug I am trying now will take 3 months to start working. I think we are into week seven or eight of taking it now. My rheum hoped that the cortisone injections would cover me until the new drug miraculously worked.

I was really, really awesome for a few weeks. I could drive a car, I had loooooads of energy and felt free to move about – well more free than I have in a long time. About two weeks ago the pain started to return. Everything seems to have escalated dramatically. It’s as though my body is punishing me for daring to try and be functional.

List of joints which now are inflamed and arthritic (in no particular order):

  • All fingers
  • Both wrists
  • Both ankles
  • Both big toes
  • Right elbow
  • Pelvis
  • Both Shoulders

My immune system is an arsehole.

I am mildly allergic to oranges, as in, I can eat them but if I eat too many or get any juice on the area around my mouth then I will get a rash or eczema. Yesterday, after I had sliced oranges for the kids, I made the mistake of eating a small piece. My lips are now so swollen it looks as though I have over indulged in the latest lip plumping chemical. Add to that the cold-soreish eczema on one side of my mouth and you’ve got yourself a really pretty look.

I’ll say it again. My immune system is an arsehole.

I’m trying to maintain some sort of optimism. I reeeaally want this new drug to work. Really, really. It’s just, it’s getting a little bit hard to be upbeat about it. To field questions from concerned or interested people without turning into a hysterical puddle of snot and throwing things at them. You would think a very tight-lipped “I’m fine” would give them enough of a clue to shut the hell up but apparently no.

My pain-killers don’t really do anything any more.  Beefcake  forced me to the GP today to discuss pain management. I would have preferred to hide my head under a pillow and moan. As it was we waited for nearly an hour to see the doctor but she really was lovely. It was the same one who referred me to the rheum and today she was all about getting things happening, a mental health plan (so that I can see a psychologist to talk through some of the strain that all this pain has been putting on my poor wee brain), a referral to a pain management specialist and some new pain relief meds so that we can get things under control while we wait for the arthritis drugs to work.

I cried. I didn’t mean to. Truth be told I am still pretty embarrassed about it but she was so very nice and so very sympathetic that I just lost it for a moment. Oh well. I am reluctant to go and see a psychologist but perhaps it will help. Maybe.

All of the children, to varying degrees, are becoming resentful and grouchy about my inability to do anything. Rhubarb, who at 14 should really be the most able to understand that it’s not really my fault, seems to take it as a personal affront to him.

Because he’s 14.

So, here’s to hoping that the new (very strong) pain meds will give me a break. Apparently I need it.

Baby, can you light some incense so I won't be able to smell your feet and the dog's farts so much?

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There is something seriously wrong with our dog. She has the most horrendous gas at the moment. Honestly. I’ve never experienced anything like it. Even when she’s in the next room it drifts in and wraps itself around your face like a suffocatingly warm, stinky scarf. And it stays. Her farts have unparalleled staying power. By the time one dissipates, another has wafted in to take it’s gag-making place.

On the upside, I am a marginally better this week. A bit less nauseous, a bit more energy. I have been able to clean a bit so we are not knee-deep in our own filth. It feels good to be able to muster up the mental energy to plan an activity (such as cleaning the kitchen and putting on a load of washing) and then still have the energy to actually get off my arse and do it. I’ve actually been able to manage pretty much all of the housework, not just one day but every day. I am still sleeping a bit too much – today Beefcake woke me at *ahem* 1pm (how embarrassing) but a couple of weeks ago I would still not have had the energy to get out of bed and do anything after that mammoth sleeping effort. Today I even went to the shops! Small victories people. It is a great comfort to begin to feel that I am coming back to myself, I was beginning to doubt that I was in this shell at all.

Unsurprisingly, my idea of going back to work and reclaiming my career has been put on the back burner. I can’t imagine that I will be able to manage that in the very near future. I have mixed feelings about that. The lazy, insecure part of me is relieved. I will not have to challenge myself. I will not have to test myself against the expectations of my profession and be found lacking. I will not have to try (and fail). Another part of me feels frustrated, caged, angry that I can not go out there and do what I want. There are other multitudes of thoughts and emotions. I am glad to be staying at home with my babies a while longer and I feel lucky to be able to do that. I feel a failure for having not tried harder to go back to work – has the self-sabotaging part of my embraced this being unwell too readily?

Oh my god. What on earth would possess me to think all that shite let alone write it down here for other people to read? I need to learn to just go with the flow. That’s what Beefcake would say.Unfortunately, the flow this evening consists of dog and husband smells swirling around me in a miasma of disgusting. I’m not joking, Beefcake just got so fed up with the smell of his own feet he took his socks outside and I can hear him washing his feet.

Anyway, I’ve decided I am going to try to rejoin the human race again. I have neglected all of my friends. There are people who I have been ignoring completely. I am going to have to suck up to several of my friends for forgiveness. I’m having people over tomorrow, providing I can get the house aired out enough. Nobody should have to suffer through what I’m currently being punished with. There is not enough incense in the world.

Not Draft

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I have so many posts in drafts it’s beyond a joke. I start and then don’t get around to finishing and I then I just decide to start again because I am not in that space any more and it feels false or something. Glad of the glimpse into my inner workings? I thought you would be.

On the weekend, Beefcake and my brother-in-law helped my Mum move into her new house. She is still guided by the habits of the last few decades. Sometimes she’ll say something or rather that she’s planning to do something and we all have to explain to her why that’s not a good idea and it would be just as easy to take option b, which will break these patterns and spare her all sorts of stress. She’s made a lot of progress though and having her in her own house is such a big step, we are all very relieved.

I’m not really comfortable calling my father by name or calling him my father, really, so from now on I will refer to him as B.

B has been re-detained in hospital under another 21 day order. He will be in hospital now until the middle of March and he may well be detained again. I suspect that they will have trouble getting any medication to work for him now, he has been heading in that direction for many years (in my opinion). Despite being very heavily medicated he was becoming more and more unstable, with each passing month.

The restraining order becomes final on Wednesday. My mother told me with a heartbreaking smile that it is their 37th wedding anniversary. There is no correct way to respond to that.

My nightmares and insomnia have worsened but I have recently read that this may be a side-effect of the arthritis medication I am taking. I see the Rheum on Wednesday and unfortunately, after three months, I have seen no improvement. In fact, my arthritis is worsening, with new joints now affected.

I’m very disappointed. I have decided that if the Rheum says the other drug options are not compatible with breastfeeding then I will wean Grub. She is 20 months old and I wanted to get to 2 years but my pain is so bad that I feel a little bit trapped. I am sad but I’m sure she’d rather have a functional Mummy than boob…….Ummmm, maybe not, but that’s what she’s getting.

I had an excellent GP visit last week. Not my usual GP, but one I’ve taken the kids to before and he was so sympathetic to my need to keep getting pain med prescriptions that he gave me the mother of all authorities (means I can get large amounts of pain med very cheaply on the pharmaceutical benefits scheme). The size of the script is almost comical but we discussed the next step up for pain management and let’s just say I hope I don’t ever have to go there. It is a relief I won’t have to worry about it running out. Usually when it does I tell Beefcake that I am going to try and go without for a while. I get more and more grumpy and eventually give in and go to the GP.

This time he rang and made an appointment for me before that could happen.

He’s learning.

Adjusting the fat paradigm

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I’m struggling to find blogging inspiration lately. Actually, no that’s not true. I have things that I could blog about, things that I probably should get out of my system – and have, in a few not really publishable posts, in my drafts folder. I want to be able to blog about the kids and about things we are doing, about nice happy things, but I just can’t muster up the emotional energy to do that. It feels as though that effort might just break me. And I can’t post about the other things. I guess I think that I have exceeded my quota of grim and whiny posts lately. I can’t subject anyone to more of my whinging.

So, I can’t write anything nice, I can’t write what’s on my mind, therefore I can’t write anything at all.

This is my blog, though, isn’t it?

Consider yourselves warned.

It is exhausting having to put on the cheerful, functional act for people in the real world. I can’t say to most people – Yes, I am in pain. Yes, still. No, I’m not any better. No, those 43 helpful suggestions of things I might like to try to make-myself-better-and-why-aren’t-I-doing-them-already are not any more helpful or useful than the last time you made them to me. There is no simple thing that just hadn’t occurred to me before that will suddenly make it all better.

It’s just so very much easier to say, “I am fine, pelvis is fine thanks”.

So, in case you were wondering, pelvis is not fine. I am not fine. But what do you do? You can’t get a replacement body.

I had pelvis x-rays the other day. I am convinced that they will show a normal, happy pelvis. Pelvis knows how to turn it on for the doctors. The rheum will tell me that my pain is in my head and I will be back in the land of no-one gives a shit.

Gee, I’m an upbeat little thing, aren’t I?


He gets out on Monday. His detention is coming to an end, our piece of mind with it. He appealed his detention, subjecting us all to more stress but thank goodness it was upheld. He has been on his best behaviour though (we think, no way of knowing for sure) because he has been transferred back to local, not so secure public hospital ward.

The police screwed up the restraining order. A typo means it started and ended on the exact same date. It went back through the magistrates court to correct that today but the paperwork Mum received still shows the typo. The police can’t serve him with the typo in place. Did I mention he gets out on Monday?

We are hoping that the court mistakenly faxed her the old, unaltered one and he will be served tomorrow. I am not that hopeful.

If it doesn’t happen before he gets out then we will have to convince her to hide somewhere.


As my more astute readers will have surmised, Beefcake is, um, beefy. He’s been that way since shortly after we met. I like to joke that once he’d snagged me he just let it all go. It’s kind of true. So. I was whining to him about it tonight. I’m not annoyed about his huskyness so much as the vast sums of money we’ve sunk into his weight loss in recent times only to have him turn around, sit down and gain it all back again.

He takes my annoyance (mostly) good naturedly as he knows it’s just the general background drone of whining I like to produce to accompany our lives. Tonight though, he came up with a phrase that I felt was so genius, I had to share.

Apparently all of this losing and gaining has been of benifit to him after all as he is working towards “adjusting his fat paradigm”. His father subjected him to many a self-help tape as a child and it has obviously had an effect. Imagine trying to have a serious whinge to someone who is adjusting their fat paradigm. Ain’t gonna happen.

At least he makes me laugh.

Update: The magistrate’s court did indeed put it through complete with typo AGAIN! Seriously.