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!

Posty post post…

I cried at my mental health nurse’s appointment today.  ‘I’m just not managing my pain very well,’ I said.  She asked if this was part of my perfectionism, or if something else was going on.  ‘I think it’s partly because the pain is worse, and partly because now the mania is coming down the pain is just there again.’ I said.  But it’s the nights that are worst. And I am doing everything I can to try and manage without taking too much medìcine – trying to get by with taking as little medicatión as I can, because I don’t know when I can get into to see my doctor again, and I don’t like having to ask for more paìnkillers.  I told one friend at uni, an ex-nurse, that I had a bad night the other night and had to take 200 mg of tramadól and I let her reaction really get to me and I shouldn’t have – she had no idea of the chronic pain I live with, I shouldn’t let one person’s reaction get to me this much. I’m doing what I can by moving around more, using ice packs, setting up a program on the computer that stops me every twenty minutes so I don’t sit and type for too long, but the pain has just been sooo bad… (I did call up and make a doctor’s appointment late this afternoon – she had a cancellation, so I can see her next week.  What  a relief.)

I have to remember to tell the Very Helpful Psychiatrist when I see her on Monday that I’m getting the shakes a little bit, but whether that’s the medicatìon, pain, or anxiety – who knows.  It’s swings and roundabouts.  You treat one thing and something else pops up.  You then have to decide – just how badly do you want to treat the next symptom? *headdesk*

I am definitely coming down from the mania.  I don’t want to spiral into a depression.  Talk about your rapid cycling… I managed to get to my appointment with the mental health nurse on time  today,  but I didn’t do a full face of make-up for the first time in a long time, just face powder, blush, lippy, mascara – which I then proceeded to cry off. I really must invest in some waterproof mascara, especially if I’m headed towards depression again.   My skin is behaving itself for a change, so I felt like I could just get away with face powder today.  No doubt it will be in the clinical notes – everything goes in the clinical notes.

Before I went out I put on the first dress I ever bought from TS14+, the one that Mr Beloved referred to as my ‘WW1 battleship camouflage dress’ when I first got it.  It’s too big for me now, it flares out too much at the sides to look attractive on me, especially over the mesh sleeved underdress.  Oh dear. Another one for the donation pile.  Looks like I’ll have to spend more money on some new dresses for summer after all – maybe once we’ve recovered a bit financially from the last hit.  I am glad to have lost the weight but I’m still getting used to the idea that things don’t fit the same way.  I have enough clothes to manage provided no one minds seeing me in the same things all the time, (who notices? I don’t) and provided I don’t mind wearing scruffy stuff at home, where too big shorts and t-shirts really don’t matter so much.

I’m still trying to work on my story for class.  Re-writing it and tightening it down, but I’ve got a way to go yet – the maximum length is 10% over the 2000 word limit, and at the moment I’m at around 2500 words.  It needs work, but I’m getting to the point where reading it on the screen is getting difficult – I’ll have to print it off, get out the red pen and get to work moving paragraphs around and editing places where information is repeated or unnecessary.  This iteration of the story is worth 25% of our marks for the course; then we get it back and a further 30% of the course marks come from how well we edit and re-work the story, which we then re-submit.  So it’s something I’ll be working on until the end of October.  (That sounds like a long time but is really only a few weeks, when you think about it… almost September as I write this.)  At the moment I just keep working on it every day, nipping here, tucking there, a sentence at a time, trying to make it better.

And now somewhere around the start of  November I have my brother’s birthday party to look forward to.  Not sure of the details yet, just that something will be happening, and the idea of seeing my family again has me teary with happiness.  It’s been far too long.  Even if I only get over to Adelaide for a couple of days, I’m looking forward to seeing everyone.

The storm that was trying to build all day seems to have gone around us.  We’re supposed to get a thunderstorm tomorrow, and sometimes this sort of weather makes my pain worse – my back and hips like to predict weather along with the kookaburras and the Bureau of Meteorology.  There must be some scientific explanation for barometric pressure and joint pain but I bet the rheumatologists don’t have any peer reviewed papers on it. (Not that I’m going to go looking.  I’m hurting too much.)

In which Our Heroine sees the Pain Management Specialist (again)

So today we went to the pain management specialist for a follow up  – after the Facet Joint Injections of a few weeks ago didn’t help.  So what WILL help?  We’re trying a new med1c1ne called Lyr1ca.  The only problem is that if it DOES work, it will cost about $100 per month – it’s not on the Pharmaceut1cal Benefits Scheme so I’d have to pay the full amount. Not sure if we can manage that.

The other things that WILL help: keeping up with the walking  – I’m not getting any faster but I am managing to do a little more each day  (today I walked for 28 minutes); and mindfulness training.

[cartoon by the wonderful Judy Horacek]

Last Friday I went to the first of 10 sessions on Mindfulness Skills at my psychologist’s office.  It was a group of about 10 women but this is skills training, not a whiny “group therapy” kinda thing – thank goodness!  The first session ran over time because the psych was explaining the neurology behind the psychology  – how the frontal lobes interact with the limbic system and what happens chemically when the mind perceives something as a threat.  Good stuff, and very helpful.

On Thursday I go for my intake interview for ACT group therapy up at the local private hospital – I need to check if my insurance covers it first.

I had gastro (AGAIN!  WTF? WHY?! ARRGH!) on Sunday and missed watching most of the Formula One Grand Prix as a result.  We’re pretty sure it was caused by drinking the town water (AGAIN) – this time from a bubbler in Queen’s Park when we took Connie for a walk in the off-leash area.  I have had gastro before when I’ve drunk water from a friend’s house – at home I drink either our tank water or fizzy mineral water from the supermarket.  I wish I could prove it was the town water making me sick, but I’m not going to double blind test myself to be sure!

I’m still way behind in my online art classes, since the pain has been bad and that means I just don’t get much of anything done.  Ah well, I’ll catch up.  The new med1c1ne is supposed to make you drowsy so perhaps I’ll get to sleep earlier instead of lying awake…  I need 10 hours of sleep to function at all, so the earlier I can get to sleep the better.

That’s about it for now – I’m going to go draw.

 

 

Sunday Sunday

And not much has happened here to report…

My back is still crook,  but it’s only a week until I see the pain management specialist and hopefully get the facet joint injections done.  I’m off to the chiropractor tomorrow (mainly because he does a great job on my upper back, he can’t really help with the lumbar spine stuff at the moment) and then I will have a stroll with my camera in Laurel Bank Park while it’s all tarted up for the Carnivore of Fowls (Carnival of Flowers, LOL!)

I cheated - this picture of decorative kale was taken at last years Carnival of Flowers

The weather has warmed up – after that cold snap last week when one morning “felt like” -2 with the wind chill, we now have a “mini heat wave”  – today is 27 C and the rest of the week is supposed to get even warmer. Lots of burn-offs happening this weekend so that sky is hazy and my lungs are a bit wheezy – nothing that the preventer isn’t managing, though.

The plumbers are coming tomorrow to fix the roof and downpipe leaks – we really hadn’t had heavy rain on the new roof until a couple of weeks ago, so we didn’t know about the leaks!

I haven’t got as much drawing or painting done as I would like this week, since I seem to have had remarkably few upright and lucid hours… so I’m feeling a bit behind in both my classes with Jane and Suzi.  This warm weather gets the gessoed pages dry quickly, so on to drawing tonight/tomorrow.