(tap tap tap) Is this thing on?

If anyone out there’s still reading, here’s where we’re up to.

When last we saw Our Heroine, (me!) I was having trouble eating.

It got worse.

To the point where I just couldn’t.

I just couldn’t eat.  The worst day I only managed 10 cherries all day.

And it happened that I had an appointment with my Very Helpful Psychiatrist that day, and my Very Good GP had copied the results of a blood test I’d had a few days before over to her.  “Caity, I was a physician before I was a specialist, and I have never seen some of these levels so low. You’re very sick.  I’m going to send you to hospital now.  You go home and pack a bag; I’m going to get you admitted this afternoon.” She made phone calls to make it happen and Mr Beloved and I headed home.

I was numb and in tears but so grateful that finally something was happening: and I didn’t realise how sick I was.  I was very malnourished.  Luckily my Very Helpful Psychiatrist has LOTS of experience with eating disorders – which, by the way I don’t have (no I’m not in denial!) and recognised that what I needed was hospitalisation so that I wasn’t in danger from refeeding syndrome.

(Refeeding syndrome is what happens when you haven’t been eating and suddenly you start eating again and your body has no idea what to do with the food – your electrolytes get messed up even more and in severe cases you can DIE. This is the simple version from the helpful dietician.  I was still fuzzy when she explained it to me so she had to use very simple words. )

Hospital was NOT FUN.  I’m just grateful that I have health insurance (through no good management of my own, you know who you are, thank you again for looking after me) that let me get into hospital straight away.  I know hospital isn’t meant to be fun.  Bed shortages (yes, even in the private hospital) and being under the care of several specialists made it a little more horrible that it might otherwise have been but we got through it.  Thankfully the hospital is only just up the road from home and Mr Beloved was able to visit every day and bring lots of books.  I got a lot of reading done – is there a worse place to try and sleep than a hospital? (I have problems sleeping anyway – it’s one of the things I am talking to the Very Helpful Psychiatrist about when I see her again tomorrow)

sleepless

They did some tests while I was in hospital – a ‘gastric emptying test’ which measured how fast  my stomach moved food through it : you eat a radioactive egg sandwich then try to lie very still for 2 hours on a very narrow platform while the CT scanner takes pictures. (Of course, once you’re trapped from neck to knee in the machine, everything itches – and you can’t move to scratch anything.) An ultrasound didn’t show anything out of the ordinary either.  I pushed to schedule the gastroscopy and colonoscopy as soon as possible while I was in hospital but then was too sick to have them. I have to go back in to hospital to do the prep and have the procedures next month (fun.)

My electrolyte levels are being monitored with blood tests every fortnight and I am almost back to eating ‘normally’ – within the limits of what I can eat, anyway.  Still no onions or any processed food with onion powder as an ingredient.  Which means – we cook from scratch.  Which we mostly did anyway, since it’s so much cheaper; but it’s annoying not to be able to just grab something like a tin of soup when you’re feeling blah and just want something quick.  Because there WILL be onions or onion powder in there, in sufficient quantity to make for a miserable night, or perhaps 2 miserable nights.

So what the hell went wrong, anyway?  Part of it was the depression that started in November – I lost my appetite. (When I saw the GP on Monday she mentioned that she had just been to a conference where she learned that one of the psych drugs I am on has been being used off label in the US for weight loss, since a significant proportion of patients report loss of appetite… ahhhh, light bulb!) But then something else happened that interacted with that – possibly an infection, possibly just a worsening of the Irritable Bowel Syndrome (IBS) that I have to learn to manage better.  It could be that the antidepressants we were trying triggered something. (Given the severe nausea that happened during the antidepressant trials, I wouldn’t be surprised.)   The gastroscopy and colonoscopy are to check that there’s nothing else going on: the specialist has said that he thinks I’m going to have to learn to live with the facts of IBS: it won’t kill you, it just makes you very miserable from time to time.

Meanwhile I am eating bread and pasta (NOT the gluten free versions) for the next month so that if there is a reaction to those to show up in the tests it will well and truly SHOW UP!

And in non-medical news… my dear nephew turned 21. Go NewSky!

hanneul makes pizza

We survived the Australia Day rain event (heavy and very inconvenient rain, but fortunately for us at least NOT a flood on the scale of the 2011 event… others down the range weren’t so lucky and had worse flooding than in 2011. We were only left with a soggy queen size mattress to dispose of, since of course my hospitalisation happened a day or so after we go the new mattress and before we could organise the skip to get rid of the old one.  Mattresses and other big rubbish are really hard to get rid of – hiring a skip/dumpster is about the only way.  I supposed we could hire a ute but by the time we load that and do multiple trips to the tip – just as efficient to load everything into one container and then get it taken away. Must organise that this week.

And uni starts again soon. I got a High Distinction for my Creative Writing subject in Semester 2 last year; I’m enrolled in the follow on subject starting at the end of this month. I’m looking forward to getting going on that again.

So. That’s it for now. Updated. Now I must go cook dinner.

Sunday…

I just walked up and down our back yard a few times, trying to work out the terrible clunk that happens in my hip when I walk if I’ve been sitting for too long. Step clunk, step clunk, step clunk.  I see the chiropractor on Tuesday and she helps, but I know one of the things I have to do is gradually build up the amount of time and distance I can walk again – I’ve let myself get stuck in a pattern of sitting too much. The weekends are worst: weekdays I usually have something I can schedule, whether university or doctor’s appointments, or just getting out to the supermarket; but Saturdays and Sundays drag on forever and I find myself stuck and in pain.

I’m not sure if it’s the medication for the bípolar or if the pain is causing it, but I’ve been getting the shakes.  I didn’t feel well enough to drive myself to class on Friday, so poor Mr Beloved got stuck doing the trip out to uni and back twice. Then I had to go to a birthday do for one of the scrapping girls – normally something I enjoy, but I was soooo tired. I had slept so poorly on our old mattress on Thursday night that I was seriously weepy about it, so when the scrapping girls mentioned that the egg carton foam topper thingummy had worked for them I thought it was worth trying – after all, there was no way we could afford a new mattress (about $1000) but we might be able to swing a new topper thing (a bit over $100).

Mr Beloved drove back to the other side of town again and we went home via Clark Rubber.  $125 later for this (which is properly called, I see, a ‘convoluted foam mattress overlay’) and $42 for the half roll version of this, which seems to be helping in the lounge chair – my neck is less sore, anyway) and so far we seem to be sleeping better. By which I mean that I have had at least one period of four hours of unbroken sleep, which is something of a miracle: I can’t remember that last time I’ve had even that long without interruption. (Broken sleep is something of a feature of fibromyalgìa, apparently opinion is divided over whether it’s a cause or a symptom – in any case, it SUX. Add in breakthrough pain, a bit of apnoea that the CPAP mask doesn’t entirely catch, and – well, it’s a wonder I’m not more tired than I am.)

Today has been accompanied by the interminable drone and beep beep beep beep of big diggers reversing as the railways work on some project just over the creek that involves moving piles of gravel from one place to another.  It’s been going on since about eight this morning and it’s after four as I’m writing this.  Lovely sunny day for it.

Not the digger across the creek.

Tomorrow we see the Very Helpful Psychiatrist again. I’m hoping that she will let me reduce the amount of Saphrïs that I’m taking (it burns my tongue, apart from anything else). Mr Beloved’s new spectacles are ready, so he gets to collect those once he’s had one more eye test that for some reason couldn’t be done while he was there last time.

In university news, I’m still working on my story that’s due on Friday. It’s getting to the stage now where I’m finding it really difficult to work out what to do to fix it before submitting it.  It’s just got to a point where I can’t look at it any more and see what needs to change.

That’s about all the news from here. It was freezing cold last night, 2.8 degrees according to the official record. Supposed to be about the same tonight.  Happy Spring, Happy Father’s Day, make sure to bring in the carnivorous plants in out of the frost. At least  Formula 1 is back from their summer break and we get to watch them tear madly around Spa tonight – one of the few older circuits left, seven kms of lovely twisty hilly racing. VROOOOOOOOOOM!

It’s been a tough week…

Whine whine whine…. that’s all I feel like I do these days.  It has been a tough week – my jaw is still aching from the dental work last Monday – the dentist did say it would probably take a few days for the tooth to settle down.  The weather has finally turned showery and blowy today, which usually makes my bones ache (and poor Mr Beloved too – what a pair of old crocks we are!) The TMJ pain is still there, even though the chiro treatment helped – I know that usually takes a couple of weeks to settle down.

I’ve been dealing with panic attacks.  Oooooh boy.  At least now I know I can take the pill (l0razepam) but I’m very aware that it’s easy to get addicted to them, and I sometimes feel like a failure when I have to take one.

Take the piiiiiiiilllllllsssss.....

But it’s SO MUCH BETTER to take the pill and be calm instead of spiralling into hours of misery and panic and thinking I can’t breathe and feeling like I’m going to vomit and having to run to the loo every 5 minutes because I get instant diarrhoea with the panic.  Isn’t that just a charming detail?  Just writing about it is embarrassing.  I wish I could even say what triggers the damn panics, but most of the time I can’t – once it was as simple as my ears getting clogged from this cold and feeling like I couldn’t unblock them and WHOOSH  –  panic.  Embarrassing.

And I’m FINALLY changing over med1cat10ns!  I’m feeling a bit wonky because of that, too, I think.  The nice psychiatrist has said I can cross over the T0pamax (the new one, that might help me lose weight, as well as stopping the m1gra1nes) and the Ser0quel (the horrible one that made me constantly hungry) – that is, I can start and increase the T while decreasing the S,  until I’m on the dose I feel is right of the T and the S is completely GONE.  And the nice psychiatrist is *available*, even if it’s just getting back to me in a phone message, so I feel much safer doing this than when I’ve changed other med1cat10ns.

And group therapy starts again this week.  Who knew, back when I started going, that I would actually be looking FORWARD to going to group therapy and the help it gives?

So that’s about it – just trying to keep going.  Still toying with the idea of maybe possibly doing a university subject but perhaps not this semester… maybe when I’m feeling a bit more stable.

Thoughts on the New Psychiatrist

Well, the much anticipated appointment with the New Psychiatrist was this morning.  And….

… it went well.

One of my friends’ daughter in law was a patient of the same psychiatrist and complained that her accent made her difficult to understand (this will pretty much identify the psych in question to any locals!) but Mr Beloved and I found her to be perfectly intelligible.

The New Psychiatrist (new to me, not new to the profession) is very nice.  Sensible. Asked what *I* wanted.  LOGICAL.  Not patronising.  Very understanding that I fear a relapse, and that when I am ready we can look at changing the med1cat1ons I’m on so I can lose weight.

Such a relief.

So it looks like I’ll be even going to group therapy *involuntary shudder* – last time I had to go it was horrible.  BUT this time it’s focussed on the same therapy I’ve been working on with my Helpful Psychologist (ACT and Mindfulness).  So I’ll give it a go, at least until the health fund cover runs out.

Tomorrow: hospital and hopefully relief from the back pain. YAY!

 

 

Mr Beloved and Our Heroine visit the psychologist

Most times when I have an appointment with my Helpful Psychologist, I go on my own – but since I knew that the Unhelpful Psychiatrist Who Has Since Been Sacked From My Team (phew, even using the acronym is long – UPWHSBSFMT!) had written a letter to my Helpful Psychologist, we decided it would be prudent to have Mr Beloved along to help explain what happened.

So off we trotted to the appointment on Friday morning.  And it was a good idea having Mr Beloved along, since even talking about the UPWHSBSFMT was upsetting.  Her letter to the Helpful Psychologist showed that yep, we weren’t just not on the same page – we weren’t even in the same damn LIBRARY!  Her representation of what I had said was completely topsy turvey.  She also asked that I start a type of therapy that 1) I have no interest in undertaking and 2) my Helpful Psychologist is not trained in! ARRRRRRRGH!!!  This combined with her close-mindedness about any other approach than hers is, I can now see, typical of the way she was interacting with me.

I feel quite validated in sacking the UPWHSBSFMT.  I also feel that my little list (cue Gilbert and Sullivan “Mikado” earworm!) is validated.

As I have mentioned, I am waiting to see a new psychiatrist – but that appointment isn’t until the end of September.  Meanwhile, I’m working on anxiety issues with the Helpful Psychiatrist, although a lot of the time I feel like this:

(The brilliant cartoonist who is responsible for these images also suffers from depression and writes here about using meditation techniques to help…)

I see the Helpful Psychologist again on Tuesday to work on “defusion” techniques… usually I wouldn’t go again so soon, but the government has changed its policy on accessing mental health services and I had to organise to use up the sessions I am allowed to have before November.   (After November I’m not sure what will happen – my private health fund may or may not cover the necessary visits – things could get very tight and fraught.  We shall see.)

 

What I want from a mental health professional

I’m making a wish list  – things I want in a mental health professional.  It’s possibly unrealistic, since the shortage of specialists (and my bad experiences with TWO psychiatrists now) means that in reality I’ll probably have to take whoever I can get in to see.  However:

  • I want someone who respects the other members of my mental health support team – my partner, my psychologist and my GP.  I want recognition that other things apart from medication and my infrequent sessions with the psychiatrists are valid and valuable.
  • I want acknowledgement that mental illness does not exist in a vacuum – I have other physical issues that contribute to what I can and can’t manage to do.
  • I don’t particularly want to change the medication regime that is currently (mostly) working, but if we decide TOGETHER that change is required, then the psychiatrist MUST be available for phone consultation at the very least during the changeover.  And no medication changes will be undertaken on the brink of public holidays!
  • I want someone who LISTENS to me rather than jumps on their own hobby horse. If I mention that getting fewer hours of sleep each night is bothering me, then I want that symptom discussed.  If I am concerned about weight gain as a side effect, I want that addressed.  I don’t want to hear how successful the Doctor’s daughter or sister-in-law are – unless they have the same illnesses and history as I do, it’s NOT RELEVANT.
  • I am not interested in a Freudian approach – unless it is DIRECTLY relevant to what is going on RIGHT  NOW, I can’t see how digging through my childhood can help.
  • I want compassion.  It’s not okay to ignore my distress.  If I am half way through an hour long session and crying so hard that I can’t see, then at the very least offer me a glass of water.  I am willing to go tough places if I need to, but I need kindness to get there.

Comments?  Suggestions? Am I being unrealistic here?  I would value some feedback on this…

Not much, how ’bout you?

Well let’s see – what’s happened this week?

I had my last visit to my psychiatrist before she moves her practice completely to Brisbane.  I’m still going to be seeing her (but every 10 weeks instead of every 8, is the plan) but it will mean a trip – probably by bus, since parking in Brisbane is apparently the third most expensive in the Asia Pacific – after only Sydney and Tokyo! I can’t get in to see another psychiatrist here – they’re not taking new patients.

It’s been COLD here.  Well, cold for Toowoomba – mornings getting down to 5 and 6 degrees C (that’s around 41F).  And while that’s nowhere NEAR how cold Canberra is, after 7 years or so up here, I’ve adapted – and 6 feels quite cold enough!  We’ve had several frosts already, but lovely clear days. We need to shut the house up at about 4 o’clock, and start getting warm again, and keep the asthma medication handy because that’s about the time the wood fires are being lit in the neighbourhood!

The cooler mornings have made my fibromyalgia worse, I think – I’ve been moving very slowly.  Mr Beloved has been trudging along with the studio reorganisation – it’s such a huge job, and continues to be a sliding puzzle of moving that over there so this can move over here…

Chair and carpet tiles

He’s reached a big milestone, though – these are the first of the carpet tiles!  YAY!  Of course this means he has to manoeuvre everything around yet again so he can put the tiles down, but he’s getting there.  Nothing we do is fast – we’ve both had broken backs, and continuing physical problems which mean we have to work around what we can manage.  Slowly, slowly…

(It doesn’t help that Mr Beloved had to start taking blood pressure medication, and it doesn’t seem to be agreeing with him at all.  Back to the doctors we go…)

It was pay week, so we went grocery shopping, in 5 different stores.  ARRRGH!   (See separate post on this topic.)  I had to buy new shoes  – after three years, the ones I wear almost every day had just plain worn out.  I bought the new model of the same shoe (Brooks Addiction Walker) but sadly, at Australian prices – ouch!  Now I know that’s such a good shoe for my very flat, fat feet, I might try ordering it online from overseas.

And of course we’re watching Eurovision (the final is tonight!) as we do every year.  So many white dresses!  So many singers who can’t sing on key!  So many acts where the backing dancers are more interesting than the song!

We’re still waiting for the electrician to come back and do the wiring and replace the lights – and for the painters to start on the outside of the house.

And that’s probably all the news this week.