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.

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.

I think about blogging every day. I mean to but I just don’t have the energy to invest most days. I feel sorry for that. Most of all because I am not documenting stuff about the kids that I know I’ll forget.

I feel guilty about not commenting. I keep a ton of posts unread so that I can go back and comment later. Some people’s posts go completely unread so that I can save them for a time when I can really concentrate and give them the attention they deserve. None of it happens. I feel more guilty.

I have a couple of award/memes that I really intend to do but have still not gotten around to. There are one or two people who I really need to post about and link to because they’ve done something lovely for me. I haven’t done that either.

In short, as a blogger, I rock.

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Today I went to a local hospital and lay on my stomach in a cold room that smelled of alcohol swabs. I lay still, breathing only when a machine with an American accent told me that I could, as the techs took x-rays and made marks on my back. A doctor came in and introduced himself, he swabbed my back with betadine and injected a small amount of local anaesthetic into the skin around my sacrum (triangular shaped bone at the back of pelvis). He and a tech, dressed head to toe in protective gear, turned on the CT machine and I lay perfectly still as they slowly inserted a long needle into the joint between the sacrum and ilium. Once the doctor was sure that the needle was positioned just right he injected a mixture of coritsone and local anaesthetic into the SI joint. He said “there will be a bit of a sting” but what I felt was the most agonising and profoundly wrong sensation I have ever had to endure.

I am au fait with pain, I consider myself a  pretty tough cookie. This made me whimper and weep. To lie perfectly still while he inflicted this on me went against every instinct. And then he did it again, the second side was worse. They told me it was so bad because the area is extremely inflamed. The steroid injections sends all the inflamed muscles into spasm. They are still spasming merrily away.

So now I have to wait. It should be a week or so before we know if it will help. I really hope that it does. Also, I hope it doesn’t because if it makes me all better  for a while then it means I will have to do it again. I will need a serious dose of sedatives to tackle that.

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.

Hellooooooooooooooo there.

It has been so long since I blogged that I barely know how to do this any more. I poke my fingers at these keys and hope to make a sentence that contains some meaning, yes?

I wish I had a really, truly  earth-shatteringly good reason why I have not been about the place, truth is, I’ve just not been able to muster up the energy to drag out my laptop and type something. Quite bizarre that I could go from having it permanently welded to my lap to not touching it for weeks on end.

Life has just been too exhausting. There has been the near constant dramas that my mother has been subjected to by B. It’s kind of progressing in a two steps forward, one back kind of a way. He seems intent on making it as difficult as possible, as is his way. For someone so lazy I’m surprised by the amount of energy that he has been able to throw towards not leaving her alone. He plays the victim most passionately and is devoting a large portion of his life to trying to inform as many people as he can that he has been grievously wronged. So tedious.

My major problem, however, has been this new medication that I am taking for my pelvis. It is a quite toxic concoction that is used for all sorts of things, including chemotherapy. Whilst I am taking a teeny weeny dose, nothing like that which would be used for chemo, it has had some pretty significant side-effects.

I am constantly nauseous, I rarely vomit so I haven’t actually been subjected to that but I sometimes wish I could. It’s not just the nausea, I literally have ZERO energy. Some days I feel as though lifting my arm is just asking too much of my body. To begin with I tried talking myself out of it. I mean, I am on a tiny dose, it’s ridiculous that it could make me feel this bad, isn’t it? In the end I decided that I was doing myself no favours by persisting with the continuous loop of nasty, negative internal dialogue. I realised that if I accept that this drug has the power to do me some good then it also has the power to inflict horrible side-effects on me. And, I have to say, it does seem to be making a difference to my pain levels, not a sudden, “Oh my god, I’m all better, I am now capable of running a marathon” sort of better but a gradual easing. I am still needing pain relief but less and less all the time.

So, here’s to hoping that it continues to work and stops making me sick because, honestly, I don’t know how much more I can take of this lying about while the children trash the house around me. There are now more crayon wall murals than there is clean wall and I’ve just had to come to terms with the housewide carpet of toys.

I hope that the house will smell better after today. Beefcake had SA water come and clear a blockage in the drain outside our house today.I now have a bucket of waste buried in my back yard to attest to just how revoulting a blockage it was. Hmmm, no wonder our house smelled so unsavoury.

Thank you to all of you who have emailed to find out what’s happening. Makes you feel all warm and fuzzy, it does. My feedreader is stupidly full. I will try to pop in and comment but I fear I will have to just hit mark as read and start afresh to make it manageable, you’ll forgive me, right?

I have been spending waaaaay too much time hunting for little  nappy icons. I can’t help myself, this is my fourth hunt and once you start it’s very easy to become hooked.

I am neglecting all of my other duties. My children are getting around unwashed and unfed (well, not quite but it’s just lucky I have Beefcake). I have sore swollen hands from click, click, clicking my mouse looking for that tiny nappy. It is not compatible with arthritis.

Speaking of arthritis, I had my Rheum appointment. As I suspected would be the case, my x-rays showed a normal pelvis. Okay, not normal exactly but there were no signs of arthritic change. You can see marked asymmetrical separation of the pelvic bones, which I suppose is a validation of sorts but it didn’t stop me from bursting into tears. If there is nothing concrete to treat then my problem remains untreatable, you see. I feel desperately low at the thought of having to go on like this indefinitely. I feel very lucky that my Rheum takes my pain very seriously.

The plan of action is as follows:

• Stay on arthritis drug that hasn’t yet worked as it still may start to have an effect.
• Have an MRI to have a better look at my pelvis.
• Have steroid injections into the joints of my pelvis – this should (in theory) really help.
• Start a new and very toxic (actually used for chemotherapy) drug to see if that also helps.

It feels good to have a plan in place but I am also a bit sad. The new drug is most definitely not compatible with breastfeeding. I have allocated two weeks to wean Grub before I start taking it. She is doing ok. She is at two feeds a day and so far I have been able to put her off when she asks for other feeds. I am trying to drop the first thing in the morning feed but I have to admit that I am struggling. I keep looking into her sweet face and thinking there are so very few feeds left. I don’t want to tell her no. I know it’s best to gradually wean over these two weeks but I actually feel like I want to fit in as many feeds as possible before it comes to an end. That must sound so silly but she is my last baby and…… I will miss it.

Well, because I am now bawling I think that’s all I have to say.

There are still nappies to find.

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.