On Christmas Time

In the past week or so, both parents have checked in with me to make sure that I’m ok with Christmas.

As the days wind down I have to say I’m doing fine.  The most stressful part of Christmas for me is the shopping and shopping centres in general.  As December rolls around the local Wesfield fills up with stressed out people, finding a park takes ages, it’s always too hot and claustrophobic no matter what they do with the air conditioning.  This is the reason why I do most of my shopping online and well before the last week.

Trying to find a car park is really the worst though isn’t it?  To a point with the crowds I can put my head down, stick my elbows out and just barrel through to focus on the task at hand.  But you can’t focus on anything if you can’t get into the building in the first place.  Some shopping centre parking situations are so ridiculous they’re getting media attention.

Three hours?  Really?  Everyone’s parking tickets would have expired!

My mother went to the shops twice yesterday – once at midday to do the food shop, and then returned at around 4 to do the last minute presents.  At midday she was circling the parking lots for ages, at 4 she got lucky because someone left.  Today she returned at 9.30 to get some fish and there were no parks.  None.  After driving around for ages she gave up and came home.  She intends to return at about five because she thinks there will be a lull in between the people on holidays and the people who work rushes.

As for me, I asked my family what they wanted in mid November – trying to be organised and all that – but no-one knew what they wanted.  I had known what I was getting my BF for months – new Nike running shoes.  He knows what he’s getting because he couldn’t tell me what shoe size he is, so I had to have him try them on.  The wrapped up shoe box was sitting in our living room long before our Christmas tree was.

My sisters continued to be coy about present ideas so I got sick of waiting and just bought them both surprises that they’re just going to have to like.  One is getting a new Lorna Jane top for the gym and the other is getting Peter Alexander pyjamas.

My parents did eventually give me some ideas – mum wanted a cooling jacket for her wine.  Huh?  I had no idea where I would find such a thing and in the end just googled “wine jacket” until I came up with something I could order from an online store.  Dad wanted a bottle of port so, given that my BF lives close to a bunch of vineyards we went up there to source a bottle.  It just so happened that as we went to the cellar door for this vineyard where we got the port I saw a whole lot of these cute and colourful wine jackets for sale, but these ones had handles to carry around.  I couldn’t resist buying another for mum.

And yes, this is a secret blog.  My family definitely aren’t reading here.  My BF might be, but he already tried his present on, soooooo…

The last few things I have to do before Christmas is clean the house and help with the cooking.  My jurisdiction of the house is done – upstairs hallway, bathroom, toilet, stairs and my room – and mum will do the ham tomorrow.  She ordered a smoked ham from the local butcher which she picked up this morning.  It smells great.

Today I will go to church with my grandmother and when we come back from that we’ll have the ham and fish.  On Christmas morning – I either wake up inordinately early or sleep in on these meds so we’ll see what happens.  Either I’ll be pestering everyone else to get up for presents or they’ll be waiting for me.

Christmas lunch will be with Dad’s side of the family and Christmas dinner will be with my BF’s family.  I’m not sure what’s happening on boxing day but I know mum has a rib roast.

Christmas is a stressful time for many people but I don’t really feel that stress.  This year is very different to last year when I was in hospital, which was added stress for me and everyone around me.  I’ll be able to enjoy the day more now that I’m not adjusting to new meds, or having to go back to a ward and marinate in all the other patients’ dramas.

Of all the anxiety inducing things that happen to me in a year, Christmas is really unremarkable.

A Doctor’s Appointment and Lots of Hairballs

My hair is falling out.  In freaking sheets.

I can’t quite remember when it started – maybe at the end of last year sometime – but I’m shedding like cat coming out of winter.  I fill up my hair brush in just one brushing session.  There’s always masses of it on the back of my shirts.  When I wash my hair clumps of it can be seen on the floor of the shower.  I swept out my bathroom and created a massive blonde tumbleweed.

It ends up absolutely everywhere – all over my clothes, through my car, my boyfriend’s beard – everywhere.

I’ve been a bit concerned even though I don’t appear to have thin spots on my scalp, but I do have way more hair than the average person.  I’m not sure what’s causing it, my meds, my anxiety or bleaching my hair.  I’m pretty sure it’s not the latter because it appears to be falling out at the root, not breaking off.

My anxiety has been up and down this year depending on what’s going on in my life – I had a particularly stressful end to the college term, but the hair loss has been steady and constant.  As for my meds, I don’t know what could be causing the shedding.  I’ve been on meds before that did it – on epilim I nearly went bald – I had never heard of any of the current set causing hair loss.

After a frustrating afternoon of pulling my furballs out of his shower drain, my boyfriend insisted that I raise the issue with my doctor.  I had an appointment coming up so I promised to do just that.

I haven’t seen my doctor since the Zeldox discussions.  She’s only seeing me six weekly now, as opposed to three.  I’ve been handling things well I think.

On the day of the appointment though, it was obvious that I was having an off day.  I usually take my night time meds early in the evening so I can have a good long sleep and wake up early.  Even though I take the maximum dose of Zeldox I don’t usually experience a hangover effect, but this morning was different.

My boyfriend pretty much had to drag me out of bed when his normal alarm tactic – rolling a chilled can of diet coke across my face – didn’t work.  I slept in the car and when I got out I was immediately overcome with a wave of nausea.  Unfortunately I didn’t have my ginger pills on me.

It was obvious to my psychiatrist was soon as I came in that I was doped up, and she questioned whether I was on too much medication.  I assured her that this episode was unusual.  I must admit I panicked a little – I think every appointment I have with her I’m going to be worried that she’s going to take me off Zeldox.  It’s not just that it works, I’m keen to stay on it because it keeps me thin.

Shallow, I know.

I didn’t talk much because I was so tired but somehow I convinced her that I’m going ok.  We raised the hair loss issue with her and she told me what I already knew – that none of my meds were known to cause this.  She also said that while it might seem like a lot of hair falling out, if I can’t see any thin spots then I probably shouldn’t worry too much.

I was probably in and out in under twenty minutes, and that was me done for another six weeks.  It looks like I’ll still be scraping furballs off my shower floor for the foreseeable future but hey, at least I get to stay blonde.

Mac

Antipsychotics Update

The Zeldox saga continues.

At my recent psychiatrist appointment we were discussing my Zeldox dosage again.  My BF came with me because he was unhappy that I’ve been taking both doses at night – he read up on the drug online and came across this from the NPS website:

Unlike most other atypical antipsychotics, ziprasidone must be taken twice daily with food. Absorption of ziprasidone may be significantly reduced if taken without food”

He interpreted that to mean that I shouldn’t be taking both doses at night and complained to my doctor that he thought it wasn’t safe.  She assured him that it’s perfectly safe, and that loading me up at night is the best thing to allow me to sleep.

Also, my sleeping has improved a lot now that I know I have to take it with food.

I asked her if I could have a script for maxolon due to some nausea I’ve been experiencing in the mornings and she refused – apparently zeldox can interact with maxolon and cause dystonia.  I’ve been told to go to a health food store and look into natural therapies for nausea.

She also sent me to get an ECG to make sure I have no abnormal rhythms which is a risk for the drug.  Not going to lie, that has been bothering me ever since.  I got my ECG that afternoon and haven’t seen the results yet, but this is just another example of my mental health messing with my physical health.  I did some more reading on the nps website and found this:

A small but increased risk of sudden cardiac death has been observed for all antipsychotics — consider the individual’s cardiovascular risk profile before prescribing an antipsychotic

Yikes.

I know it’s a small risk but it’s just another thing to worry about.

Mac

Antipsychotics and Me

Finding the right medication is often a balancing act between how well it works and how many side effects you can take.  While I’m aware that I have to live with some effects – there’s no such thing as a quick fix in psychiatry after all – I’m still holding out hope that I can find medication that works and doesn’t pile weight on me, or zonk me out all the time, or give me such bad memory loss I’m blanking on my personal details.  I’ve been through quite a few now and I’m really hoping that this current one is the one that sticks.

I started on Zeldox in December last year.  I had been on it before, and it was a disaster because my doctor put me on 40mg straight away and I was violently ill for weeks.  This time we started with me taking 20 mg to start with, with my psychiatrist aiming to have me settled on 100mg.

I talked about my experiences getting on the new medication regime in the rehab diaries, but the complications with my medication didn’t end once I left hospital.  There have been side effects that only became problematic later.

So, back to the end of my hospital stay.  I’ve just been discharged and I’m taking 80mg of Zeldox – 20 mg in the morning, and 60 mg at night.  I persisted with the daytime dose for about three months but midday drowsiness was a persistant problem, and is a problem for me for any antipsychotic medication I’ve taken.

I’d take the pill at about nine a.m.  I’d feel great for a couple of hours, then start feeling a bit seedy around midday.  Generally I couldn’t get through the day without a midday nap.  For those eight hours between the nap and night meds however I can’t deny I felt fantastic.

I put the problem to my psychiatrist in an appointment scheduled when I would normally be napping.  She agreed that I appeared over medicated, and put a stop to the morning Zeldox.  But, would I mind trying to take all of it at night?

So I did.  Still on 80mg of Zeldox but all at night.  While I was much more animated during the day, and could go places without worrying about crashing suddenly in public, not taking the drug during the day did see my productivity go down.  I had trouble focusing,  I was restless, and just generally more anxious.

Then came something that every happily medicated person with bipolar disorder dreads: I stopped sleeping.

Generally when this happens it’s time to change up the meds but I was not prepared to give up on Zeldox just yet because….well, I’d been losing a lot of weight on it.  That might sound petty but I’m willing to hold onto any drug that doesn’t push me in the other direction.

I went back to my doctor and told her what was happening – and had her despair over my continued weight loss – and she agreed that we should persist with Zeldox for now.  While my weight loss has been bothering her, I previously gained 20kg in a couple of months thanks to other antipsychotic drugs.  She’s very mindful of not putting me on anything likely to repeat that.

So to fix the sleeping and other positive anxious symptoms she decided to jump from 80mg to 120mg of the Zeldox.  She told me to try taking 40 in the morning and 80 at night, but to switch to all at night if the daytime dose was knocking me out.

That worked – for a week or so.  Eventually my sleeping became problematic again, and taking 40mg during the day was making me drowsy.  Though again, in the afternoons I was feeling fantastic.  But life isn’t forgiving of a need for a siesta so I started taking it all at night.  I still wasn’t sleeping, and my anxiety symptoms returned during the day.

So at my most recent appointment she told me to jump 40 mg again so that I was taking the maximum allowable dose, 160 mg a day.  Because I do seem to do better when I take it during the day she told me to split it 80 mg at night, 80 mg in the morning and to persist with this for a while just to see if we couldn’t make it work.

I tried to make it work.  Taking 80mg of a sedating antipsychotic as soon as I got up had me feeling like I had been hit by a train for the first half of the day (and of course feeling fantastic the second half.)  I persisted for a few weeks but it just didn’t get better.  I tried setting an alarm for 4 am to take it, hoping to be able to sleep the sedation off before I had to be anywhere but it still lasted until about 11 am.  It was so strong that if I had to be anywhere before that time, I had to get someone else to drive me.

So now I’m back to taking it all at night.   I have been sleeping fine, still a little drowsy in the mornings but not scary sedated.  While my mood might be more stable on a daytime dose of the antipsychotic it looks like taking something at that time just isn’t realistic.  I can’t deal with the sedation.

I wish I could be one of those people who gets on a particular dose of medication and stays on that dose for years but medicating me is like a game of jenga – carefully building a complex structure and taking pieces away, hoping the whole thing doesn’t collapse.  Which it inevitably does.

Mac

What is CBT, and how will it help me?

So in my absence, I’ve been attending a weekly CBT group therapy session.  The decision to refer me to this group was made when I was discharged from hospital back in January to tackle my anxiety.  I went onto a waiting list then a spot opened for me in April.

So what is CBT?

Cognitive behavioural therapy is a problem based, action focussed form of psychotherapy – it identifies problematic behaviours and thoughts, challenges them and encourages you to form new ones.  It has been proven to be effective in treating many different mental illnesses but in this group was focussed on depression and anxiety.  It can be done individually, or in a group setting.

I’ve done group therapy before but that was DBT, a therapy more oriented at reducing problematic behaviours in people with personality disorders.  I had to do the group something like four times before the therapists decided that they were done with me.  What can I say, old habits die hard.

With that in mind I was apprehensive towards CBT.  I was hoping it wouldn’t attract the kind of drama that comes with a DBT group, where you don’t tend to end up unless your life is well out of control.  My own life was pretty chaotic at the time, and I’m sure there were plenty of people in the group who got sick of hearing about me getting into the same dramas over and over.

My brother in law also tried individual CBT to treat his depression and didn’t like it.  Which is fine, not all therapy styles are appropriate for every individual but he really felt it was too impersonal.  He likened it to treating his brain like a computer that needs rebooting.  Which is interesting because I find that to be an appropriate metaphor for how my anxiety works.  It’s like my brain is programmed to dread unspeakable horrors at all times for no goddamn reason and if reprogramming is what CBT can do for me, then I’m all for it.

So I went along to this group.  It runs for three and a half hours, separated into three sections, sharing, mindfulness and doing worksheets.  When we first arrive we take turns sharing situations where we struggled with our anxiety and/or depression, and where we have done our homework from the last week which generally consists of identifying some problematic thought patterns and connecting them to our behaviours

After sharing – which usually takes twenty minutes or so per person – we have a twenty minute break, then go back to do a mindfulness exercise lead by the therapist.  This is the part I struggled with; I can’t keep my head clear to save my life.  Intrusive thoughts are a big deal for me.  I can do some mindful deep breathing but I’ll guarantee I’m also thinking about my favourite Archer quotes or something.

We then spend the last hour and a half working through the info and exercises on our handouts for the week.  If you follow me on Instagram you’ll notice I’ve been posting them as I get them; they are separated into two seven week modules, one on anxiety and one on depression.  Each week we explore some aspect of thoughts and behaviours that might be shaped by both.

Even though I was put in this group for anxiety, I found the thought challenging exercises in the depression module to be more relevant to me.  I love to catastrophise and obsess over possibilities – and I have a double whammy of autistic spectrum disorder and paranoid delusions from mania facilitating that – and I found the exercises grounding.

So about the people in the group…obviously I can’t share details about them, but was I right in assuming that they would be less dramatic than our mates in DBT?  The answer is yes…mostly.  People with anxiety as opposed to personality disorders tend to be higher functioning I’ve found, but there’s always some individuals who can’t not escalate any drama they get into and don’t want to help themselves by using the therapy tools to challenge their behaviour.  But one of our group rules is accepting that everyone is at a different stage of their recovery journey, so I just have to take it for what it is I guess.

After all, One of the benefits of group therapy that they’re too polite to tell you about is that there’s always something to be learned from other people’s mistakes.

Mac

Bipolar Disorder Feature On Australian Story

This week the ABC’s Australian Story did a feature on the Newling family’s journey with two out of three children diagnosed with serious mood disorders, with two very different outcomes

Watch it here:

Or read the article on the younger brother Nic here

This feature provides an insight into the way kids with mood disorders are treated in the Australian system; Nic had access to more help than most but getting the right diagnosis is still so difficult.  Like me and so many other teens with bipolar they persisted with a depression diagnosis and feeding us anti depressant drugs that that just make us worse.

Getting a timely diagnosis for bipolar is difficult at any age but it’s so important because generally the longer we go without treatment the harder it is to control.

This story does have a happy ending for Nic and I feel so much more motivated just for having watched it.

I hope you all get something positive from this

Mac

The Rehab Diaries Week 6 – Get Me Outta Here!

I’d started getting restless.  It was obvious that I was getting overcooked.

I’ve heard staff and patients carry on about the evils of becoming institutionalised.  Getting used to being taken care of.  I don’t know that I’ve ever experienced that but I do know that after a certain amount of time in hospital I start feeling very anti-institution.

It’s not that it doesn’t happen – for the long term unemployed chronically unwell, particularly the youngsters, hospital seems be their primary social outlet.  I’m sure I don’t have to explain why that’s problematic.  But me, I’m independent by nature.  Even six weeks in I’m struggling to take set meal times in good humour.  Breakfast at 7.30-8.30.  If you sleep in like a normal person who hasn’t got anywhere to go, bad luck it gets cleared away and you miss out.  Lunch at midday.  Dinner at 5.

I miss being able to go for a walk without signing out and specifying a return time.  I miss driving.  I miss having the freedom to choose what I eat.  I miss baths.  I miss shaving.  I miss being able to watch more than an hour of youtube videos before I’ve used up my downloads for the day.

I’d established on fluoxetine and had seen definite improvements.  My irritation had toned down a lot and I was feeling general good will to those around me.  Even hearing guitar boy mindfully strumming away down the corridor didn’t make me uneasy at all.  I know my irritation towards him has been unfair; he keeps to himself and refuses to participate in the drama and politics of the other youngsters on the ward.  I can respect that.

To test my anxieties I went on leave one night with BF for a dinner and movie date.  A few weeks ago that would have been impossible but with the improvements I’d been seeing I was keen to try some regular world stuff again.

It went well.  I sat through it, even though it was a long movie and the cinema was very crowded.  I’m still hyperaware of the movements of all people around me so when there’s a lot of people in one space I get overwhelmed.  There were no meltdowns in the cinema that night however.

After last week I finally felt that I’d had some quality time with my therapist.  I was talking with her on the Tuesday of that week, saying that I was doing so much better in just one week and that I’m totally ready to go home.  I was prepared in my doctor’s appointment that week to ask for a discharge appointment on Friday.  She reminded me that, being a voluntary private clinic, I can actually leave whenever I damn well want.

Generally when a patient has reached the end of their treatment plan discharge planning begins a week or two in advance.  We talk about the support systems that we have in place, which outpatient therapists we’re going to see, whether or not a referral to day programs is appropriate.  The doctor has to record a final diagnosis (which in my case is practically a paragraph) and fax a bunch of discharge summaries to our various community care providers.  The number of appointments is usually planned around the patient being discharged on the day of the last appointment.  As we know however, patients can abruptly decide to check out without discharge planning.

I hadn’t had those conversations with my doctor yet.  I like to think that discharge planning for me isn’t hugely complicated; my care team is well known to my doctor and hasn’t changed much in the last few years.  I believe she was waiting to see how I established on fluoxetine before she started talking about it but in our appointment she accepted that I was doing better.  I told her I wanted to leave tomorrow.  I expected her to be taken aback but she said she was willing to support that, and set about writing discharge summaries.

Given that I’ve mentioned patients checking out without discharge appointments several times now, you’re probably wondering…how does this happen?  Well, all it takes is to inform the nursing staff and they’ll bring you the discharge papers.  My doctor ordered them and that evening a nurse sat with me and asked me a bunch of questions from a sheet of paper like, did I have accommodation? (yes.)  Who would be picking me up? (BF would.) What is your plan for the next few weeks? (moving house.)

I signed off on my details again, and when they provided me a feedback form, I wrote about the Christmas fiasco, saying I think everyone would have coped better with some more staff on.  That was that, and she left me to pack my things.

The morning of my victorious exodus discharge I was really only waiting for one thing before I could leave – scripts.  And the CMO took his sweet time with those.  BF arrived at 9.30, we got kicked out of my room at 10 so they could clean it for the next patient.  We finally got hold of him at 10.45

And by then I’d started feeling unusually drowsy.  While we were waiting for the scripts the nurse unit manager burst in and asked me if I noticed anything different about my medication that morning.

As soon as she asked I realised what must have happened.  I take 80mg of zeldox a day.  60 at night, 20 in the morning.  This morning I’d taken the 60.

My nurse came in at 8 as I was preoccupied with trying to force my running shoes into my carry bag (how do I end up leaving with double the clothes I came in with?)  This particular nurse hadn’t dealt with me and my meds before.  I took the cup, swallowed it without looking and got back to work.

I couldn’t remember if there were extra pills in the cup, but I did think it went down harder than it usually does in the morning.

The nurse was trying to say that my meds couldn’t have been wrong because I would normally question them if I saw something odd.  And it’s true, after the contraceptive pill debacle I always looked over my meds before taking them.  This mornings, of all mornings, I decided to make an exception.  ARGH.

So my return home wasn’t the joyous occasion it should have been because I rolled straight into bed and crashed, leaving my poor BF to work on his laptop instead of celebrate.  Then I couldn’t sleep that night because I could only take a 20mg tablet to balance the overdose out.  Nurses, take note.  Double check what you’re giving out, just because it’s not life threatening, doesn’t mean this shit doesn’t matter!

So that’s it.  My rehab journey this time around.  I may do a post talking about what I’ve been up to since I’ve been out –  I haven’t been overly interesting but there has been some changes.

Mac