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 5 – Hitting the Wall

I’ve hit the wall, and hit it hard.  To think it only took me four weeks.

My anxiety is spotty.  It’s kind of on and off but when it’s on it’s intense.  I’ve had days where I spent hours just pacing and ruminating.  Leaving the hospital is still making me feel sick.  Le boyf is making me go out, and is getting concerned over how I’m somehow not getting less shaky every time we do go out.

It seems to be spiking at night.  At night, anxiety is just on.  I guess it’s because it’s the time of day when the zeldox levels in my system are at a low but I just run in circles around my room, so dizzy and shaky, trying to wear myself out.

I have an agitating factor at night time; there’s a very real issue that can prevent me from sleeping.  My neighbour’s.  Fucking.  Snoring.  It has to be heard to be believed.  And it can be heard through the wall with the door shut.  They gave me ear plugs which do work, but they’re uncomfortable and I don’t like wearing them.

The rational part of my brain tells me that I shouldn’t be expecting to not be a competent, non agoraphobe in just a few short weeks.  The depressed all of my brain asks when I will ever not be an incompetent agoraphobe.  Suicidal ideation is back.  I just can’t do this for another fifty-odd years.

I had to make the decision of whether to return to my regular inpatient psychiatrist who was returning to work this week.  This was more complicated than it sounds.  On one hand, I’ve seen the regular doctor for five years, we work well together and it’s important to keep her in the loop.  On the other hand, I’ve come to realise that these two have very different philosophies.  While I was frustrated at my current doctor to begin with, I came to realise that his comparatively conservative approach isn’t always a bad thing – bringing up my drugs slowly allowed me to tolerate them much better, and adding them to my chart as PRN rather than standard gave me greater control over when I increased the dose.

The deciding factor was whether I would have to change therapists.  Each doctor has a different psychologist working under them, and I was concerned that if I went back to my old doctor I’d have to change my therapist as well.  I just wasn’t prepared to change both at this late stage.  When I asked him though he promised that he’d fix it so I could see my regular doctor and his therapist.  So it was settled.  I’d leave his care and move to hers.

I was worried about this appointment, not because I’m scared of her – as the staff kept teasing me – but having explain my entire case summary to a new person is exhausting.  Plus with her less conservative approach to medication I was afraid that she’d effectively blow up this current regime and put me straight on a different cocktail which would make me violently ill, and keep me in hospital for several more weeks.

Despite my fears she did no such thing, but explained to me that she would normally be treating anxiety with a certain type of anti depressant.  Which as we know, for bipolar patients, is problematic.

She contemplated prescribing lovan, which is apparently a safer class of the drug but I know I’ve been on that before, I just can’t remember when or for how long.  If it was for a long time, that would indicate it was working.  She promised to dig through my files to see if it was in the last five years, I promised to check with my parents because I suspect it was long before that.

She also made the morning zeldox a permanent addition to my medication chart, so I don’t have to explain to the nurses every single morning why I need PRN just after I’ve woken up.  Taking it in the morning is definitely getting easier but I’m still struggling some days where I end up doing sweet FA all day really.  I have what my dad would call ‘bed days’ when he talks about his nursing home patients, where I just lie around and watch tv.   Of course dad would say that bed days are reasonable in elderly folk on their last legs who have slowed right down, not a young person like me.

Another addition to my anxiety is the demographic shift in the hospital’s residents that has happened suddenly this week.  I’ve noticed over my admissions that the hospital does go through stages of being either mostly young or mostly older folks over periods of several weeks. And there never seems to be a whole lot of inbetweeners like myself.  Maybe because they tend to assign themselves to one of the groups and manage to blend in but I’m not interested in either.  Although there are a few who, like me, do keep to themselves.

Anyway up until now, including over the holiday lockdown period, it’s been a decidedly old timers scene.  But this week has seen an influx of youngsters and whenever this happens the hospital turns into a giant sleepover party.  Shrill laughing, gossip, cliques, running in and out of each other’s rooms.

That last part I find particularly anxirty inducing.  I know that seems irrational but truth be told I would never go into another patient’s space.  And I would not tolerate them coming into mine.  In fact it’s against the rules to have another patient in your room.  Even if it wasn’t I would be enforcing that as a personal boundary.

The nurses don’t appear all that concerned; certain rules aren’t strongly enforced when nothing is being hurt except maybe the sensibility of personal boundaries.  One good thing about the youngsters is that they all want to hang out the smokers area so at certain times of the day the hospital completely clears out when they want their nicotine fix.  I do appreciate the quiet.

Something that has made a huge impression on me in my personal therapy journey is the importance of appropriate personal boundaries.  Generally – there are some exceptions of course – the older crew are totally on board with this idea, as many have been in therapy for years but watching the current lot is good for meditating on that concept.

I’m not saying that all young people suck at boundaries but, as I said seeing certain ones running into wach others rooms and jumping on their beds makes me wonder.  I could do I could do a whole other blog post on the topic but the gyst of it is, we are told that while socialising in here is fine, we are discouraged from maintaining friendships once we get discharged.  And after being admitted with certain people a number of times you often come to understand that despite presenting well freinship with them can be exhausting.  I include myself in that description, I suck at maintaining friendships.

Some food for thought might not be a bad thing, hey?  Anything to distract me from the anxiety.

Mac

The Rehab Diaries Week 4 – Holiday Time is Over

 

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Finally, I got to see the new doctor.  He was a pleasant character and after a few leading questions I found myself pretty much telling him my life story, including how I had applied for medical school this year, and missed the UMAT cut off for my school of choice my just a couple of points.

He was supportive, saying that he had several patients who had gone on to careers in medicine, and some much older than me.  He tried to decipher my doctor’s notes – apparently he has typical doctor’s handwriting – and it appears that he eventually intends to supervise me onto 100mg of Zeldox, which would indicate 2-3 more weeks of rehab.  He told me that he would be putting it up to 60mg this week.

When mum picked me up for leave that afternoon I passed on that information and her reaction was one of despair.  How could I be there for a month?  Don’t my doctors understand the havoc I am wreaking on my family yet again? Thanks mum, real helpful…  (Actually I’ve been there for five weeks before but I think this admission will top that.)

If last week was the week of agitation, this week is the week of anxiety.  I’m still experiencing racing thoughts, racing through everything I could possibly be anxious about.  Just leaving the hospital makes me feel so ill.  BF and I were going to the beach last week but that’s out of the question now.

For some reason thinking about moving home is triggering me badly.  It’s just the whole moving process being such a pain in the butt, I just want it over with.  We’ve been going to my place to get bits and pieces and that’s so hard.  For some reason being in my suburb is giving me anxiety over the fact that it’s a super rough area.  Which it is, but I’ve lived there for two years and never been broken into or had any such trouble from the residents.  The drama stayed out of our house and on the street but still I can’t help agonising.  It sucks.

I’ve been catastrophizing something dreadful.  My mind latches onto a dreadful idea, and I can’t relax until I’ve been able to confirm it.  For example, while I was on leave one morning I became convinced that someone had gone into my room and stolen my contraceptive pill.  Which is ridiculous, right?  That’s a horrible thing to do and I haven’t even talked to the other patients enough to infuriate someone to the point where they would do that.  But I couldn’t let it go.  I ended up calling the nurses’ station and making one of the nurses check that it was in my drawer.  Which it was.

I’ve had many ‘ideas’ like this.  When I have them I make sure to tell the staff so that my irrational thinking is going on record because this needs to stop.  Of course the fact that I’m aware that these thoughts are irrational bodes well for me but it’s still eating me alive.

And then to add a poisonous olive on the side of this paranoia laced anxiety cocktail, I woke up one morning and the double doors between ward one and two had been thrown open.

Holiday time is over.

“Oh yes, we’re back to normal functioning this week.  Prepare for fifty thousand admissions.”  My nurse confirmed cheerfully as she brought my morning tablets.

I later found out that this number is actually closer to seven.  Admissions generally happen two days of the week, so they were able to stagger the patients coming in.

The advantage of course is that all the staff are running at full capacity, including the therapists.  Group therapy is back.  I gave groups another chance, and the first one I went to left me feeling positive – the therapist allowed us to check in, so the self pitying ramblers were not allowed to talk over anyone or hog the air time.

I’m certainly not above talking too much, and it’s something I’m very self conscious about; I’ve noticed in group therapy that those who talk the most tend to apply the skills the least and I can’t possibly be the only one.  I always cringe and swear I’m going to pass ever time they start going around the circle to check in but let loose when it’s my turn.  Those damn therapists sure know how to ask leading questions.

I was also eagerly awaiting the return of my therapist this week to finally start unpacking all this anxiety but my excitement was premature.  I saw her once before she had to go on leave for a week for surgery.  LAIM.  Am I going to get any kind of decent interpersonal therapy before I get discharged?

We’ll find out next week I guess.

Mac

 

The Rehab Diaries Week 3 – Oh so quiet, just not in my head.

 

 

justmymind

 

My brain is resisting sleep.  Getting out of bed is hard but getting in is harder.  My anxiety is so restless even though I’m on more than ever before.

I was bouncing off the walls.  A good proportion of my dad was spent pacing back and forth.  I was hiding in my room to avoid human contact.  Even though the ward was closed and there were hardly any patients in, as we know I still found everything and anything to be irrationally enraged at.

My trichillomania had been triggered as it often is in times like this but bizarrely instead of pulling out my own hair, it has been transferred onto my boyfriend.

“Can you talk to the doctor about this?”  He asked jokingly, pointing to his scabbed up face.  I cringed.  Once he put it out there it seemed to be no joke at all.  Popping his zits is something I do a lot – be honest ladies, you know you do this – but my attacks on his face had gotten harsher.  Patches of hair from his beard were missing too, as I kept saying I “just want to get rid of the weird hairs.” I had to keep checking for grey hairs, or split hairs, or hairs thicker or thinner than the others.  And if I found one, it had to go.

BF had been saying that he wanted to meet the doctor to get a better understanding of my illness.  I asked the doctor if him sitting in for a bit was ok, which he agreed to but once the door closed, stage fright struck.  We asked BF if he had any questions and he kept saying he didn’t know.  After a few minutes of this I grew impatient and threw him out.

The doctor was sympathetic to my claims of elevated mood from the previous week, even though it was maddeningly settled that day so he couldn’t observe it in consultation.  He admitted that the increased melatonin may have overshot the mark and scaled it back to 25, increasing my zeldox by another 20 at night because previously when I had been taking 20 morning and night I always needed a nap at midday.

My med woes were not over however, as later that night a nurse came running into my room absolutely beside herself.  “It’s no good, Mac.  We’ve messed up your cycle.  You need to start used protection because if you get pregnant because of me, I’ll never forgive myself!”

She explained that there had been a communication issue regarding the dispensing of my contraceptive pill.  A few days after I arrived another nurse gave my pill back to me and told me to manage it myself.  I thought that was fair enough.  But that night, I saw a little Yaz in with my normal pills.  Silly me just assumed without questioning that they’d changes their minds.

Apparently it hadn’t been recorded that I was managing it myself, so depending on which nurse was doing the medication rounds, some nights I was being given the pill, and some nights I wasn’t.  And stupid Mac was just swallowing whatever she was given without checking.

After apologising profusely she launched into a lengthy lecture about safe sex that left us both ruffled and red-faced.  Do I have access to condoms?  Will BF wear one?  Will I make him wear one?  Can we abstain?  Is it hard for him?  Hard for me?

I’m going red again just thinking about it.

Her concerns turned out to be unjustified as I got my period a few days later.  Maybe that explains my mood.  I’ve had to deal with all the delightful extras that come with that, including the cramps.  My cramps are nasty at the best of times, and the only thing that really helps is heat.  Unfortunately heat packs are not allowed due to the risk of self-harm so the staff loaded me up with panadeine and I had several hot showers a day.  The temperature of the showers is set to a maximum of pleasantly warm so we can’t burn ourselves.

On the increased zeldox my brain became settled enough to make one major decision – I have decided to move back in with my parents.  My health has been so bad for so long I’ve had to get real about what I actually need and at this point I feel like living in my parents’ house is the best option.

The configuration of the house will have to be changed to give me acceptable independence.  My parents have tasked me with working it out and it has shown to be a good way to keep my mind active.

New year’s eve fell on this week and it had me really worked up.  Maybe because it was so hot, maybe because my mum and I had an argument over the way I cleaned the bathroom on leave but I was ready to go without dinner – and let my boyfriend do the same – after I called around several take out places for dinner to find they were all closed and had a ‘fuck this I’m done’ moment.

After a pep talk from mum I called one more place – which was open.  My anxieties about traffic and crowds were completely unfounded, while the restaurant was located in the middle of town it was deserted when we got there at 5.30.  And the pizza was fantastic.

I’m not really one to get worked up over FOMO, so I wasn’t keen for grandiose new year’s plans and BF is the same.  But I was a little bummed about not being able to do the midnight kiss.  See, normally the clinic doors lock at ten so we have to be back by then when we’re on leave.  The staff were willing to make an exception for new years eve but legally we had to be back by midnight.

So we went to 9pm fireworks which were fantastic…so fantastic that I had a brief seizure!  I’m epileptic, even though my seizures are very rare I am changing meds at the moment so it’s not that big a deal.  I notified the staff when I got back to the hospital and that was their impression as well.

My doctor was off for the rest of the week and I was supposed to see one of the others but I didn’t realise that he works on a different schedule to mine, who works Tuesdays and Fridays.  The fill-in works Mondays and Thursdays so I went out all New years day thinking I would be seeing him on Friday, but no deal.  Oops!

With only the one tablet being increased it’s not that big a deal; they can’t bring it up faster than once a week anyway.

I would have to wait until the next week to see him, when the ward opened again…how would I be handling that?  You’ll have to wait until the next instalment to find out.

Mac

 

 

The Rehab Diaries Part 3 – Week 1

Finally, we touched ground at the clinic.

The first thing they do, after you fill out the paperwork and pay the gap, is take your vitals and take a picture to put in your file so the staff coming in on the next shift can match names to faces.  I’ve had several pictures taken over the years to account for aging – and my hair being a different colour in each one.

In all my previous pictures I look either depressed or agitated but in this one I was concerned that I look inappropriately cheerful.  There’s a good reason for that though – after I’d had my medical and was awaiting the nurse with my admission package, BF ducked into my bathroom.  The nurse came in while he was doing his business.

She apparently didn’t hear him flush the toilet and wash his hands while she was setting up the camera.  When he threw open the door just as she was pressing the button, she startled so badly that she jumped and we had to take the photo again.  The second one came out but it was obvious that I was trying to supress my amusement.

After BF left, I was to have my admission appointment with a doctor who I hadn’t worked with for five years, as my regular hospital psychiatrist was away.  I was a little nervous about this meeting; I had been a difficult patient to deal with at the time but was having a lot of trouble expressing what was wrong with me, and took a lot of frustration out on my care team.  As a result I was told again and again that they had no idea how to help me.  I harboured a deep distrust of mental health professionals for a few years after.

My communication skills have improved since then and bearing in mind that I didn’t get along with my current psychiatrist when we first met, I was willing to give him a chance.  I figured it was a better option than starting with yet another doctor who I don’t know at all.  I was relieved to find that he was willing to give me another chance too, and after the official admission business he asked me what I hoped to achieve with this admission.

I explained the deal with my current medication.  The mood stabilisers seem to be struggling on their own.  The efficacy of Topamax is unclear.  My anxiety is out of control.  I probably need to be on antipsychotic drugs as well as mood stabilisers – as many bipolar patients do – but we’ve had trouble sticking with one so far because of side effects.

He listened, and conceded that this would be worth a try…and if I left it with him, he would come up with something.  Wait, what?

Turns out I didn’t have a good appreciation for how gung-ho my regular psychiatrist’s approach is.

In our next appointment three days later I found my frustrations from five years ago resurfacing somewhat.  The doctor seemed unwilling to make a solid decision and kept throwing the conversation back to me, asking me if I had other ideas.  Um, why go through three years of psych residency if it were that simple?

I pressed him and he listed off some antidepressants to treat my low mood which was met with an (admittedly ungracious) groan from me.

“Pristiq?  PRISTIQ??? Don’t you remember what I was like when you put me on pristiq before?”

“remind me?”  He quipped innocently

“kinda nasty.”

He suggested Cymbalta, saying that some of his bipolar patients had seen improvements on the drug but I was hesitant, maybe unfairly due to the number of people of mental health forums I’ve been haunting despairing over side effects.  I said I would ask my dad, also a doctor, for a second opinion.

Finally he printed out some information on the natural supplement SAMe, explaining that it could be a cheaper way to regulate my sleep and depression.  Oh great, now we’ve exhausted all our pharmaceutical options I thought glumly as I left.  Clearly he thought he was giving me greater autonomy over my treatment plan but at the time I felt like I had all these decisions on my shoulders that I’m unqualified to make.

I spend a lot of that week in bed.  I was low, in mood and in energy.  BF normally cares for his mother but she had been in respite for a few weeks so he was with me constantly.  Whether I liked it or not.  All BF all the time.  I just didn’t have the energy to entertain him and I was getting more annoyed by his presence because I felt like he was just doing it to ease his own guilt, rather than because he thought he was helping me.

On one such day he said he was coming over.  I told him no, I wasn’t up for company but he turned up anyway.  In the mood I was in I told him that if he must be here fine, but I said I didn’t want to talk so I wouldn’t.  And rolled over and went to sleep.

I napped most of the afternoon while BF lay on the floor playing candy crush, every now and then being woken up by an overdramatic look-at-me sigh from him.  About two hours in when sighing his feelings out got him nowhere he got up and stormed out.  I’m not sure how long he was gone for as I was asleep in between but he came back with my nurse who looked a little perplexed.

“You should get up.” She turned to him “She hasn’t eaten today.”

I pulled the covers over my head. “Too bad.”

He yanked the quilt off my bed. “Nope!  We’re going for a walk.  Even if I have to wheel the bed out the front door.”

After some protests from me – and a threat to roll me off the bed that probably would have been carried out – we did go for a walk to the nearby lake, and ate Thai food in the sun.  My mood improved for about five minutes.

I was hoping to debrief with the nurse over whatever my boyfriend said to her, but she wasn’t in for the rest of the week.  If he wants to be around and harass me fine, but I don’t want him annoying the staff.

That was a conversation I wasn’t able to have until week two.

So you’ll be hearing about that in the next instalment of the rehab diaries.

Mac

 

The Rehab Diaries: Getting the Referral

I had an appointment on a Wednesday.   The sole purpose of this appointment was to get me a referral to this private rehabilitation clinic which I’ve been umming and ahhing over whether I should go to for a few months.

It occurred to me that if I’d been thinking consistently for months with no signs of stopping, it was time to cut my losses and go.  My depression was intense for that whole time it felt like, and then I’d gone the other way and was a mess of raw nerves.  The mood stabilisers clearly weren’t doing their jobs.

So I had my appointment.  Then on Tuesday afternoon, the receptionist called me to say that my doctor had cancelled all her appointments, and would it be ok if she scheduled me with someone else?

Well, FUCK.

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