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

Link Between ASD and Substance Abuse

An interesting article from Psychology Today appeared on my Facebook wall today:

Autistic Symptoms Make Higher Risk For Substance Abuse

Which apparently doesn’t mean people with an autism diagnosis:

‘As you would expect, previous research shows that people with autism tend to have low rates of substance abuse – the preference for low risk and avoidance of social situations means less drinking or drug use. But new research from the Washington University School of Medicine found the opposite: in their study of 3,080 Australian twins, people with symptoms of autism were more likely than people without symptoms to abuse alcohol and marijuana.’

So I think this article is saying that people toward the lighter end of the spectrum, as opposed to those with HFA, are at a higher risk of substance abuse issues.  It’s been observed that Asperger syndrome has a higher risk percentage of mood disorders than the neurotypical population.  One in three people with an Aspergers diagnosis will experience depression in their lifetime, as opposed to the one in five in the general population.

People with mental illness do tend to self-medicate.  A mental illness diagnosis reduces your life expectancy by up to twenty years and no, it’s not because of suicide.  The biggest killer of the mentally ill population are diseases acquired through smoking.  Also significant causes of death are cardiovascular diseases and diabetes.  Diseases acquired through various forms of self-medication.

Me, I have an addictive personality.  At any given time I indulge in a number of obsessive behaviours but as we know I am a hotbed of assorted psychological malfunction.  To blame my behaviours solely on any one of the conditions would be disingenuous.  Labels are useful tools for getting help but not always for treatment – rather than worrying about what was causing my obsessive behaviours the most helpful approach has been to address the psychology behind the behaviour (hello DBT.)  That way we can break the cycle and form some new ones.

So what does this mean for people on the spectrum?  It’s important to remember that association is not the same as determinism.  If you have a higher risk for substance abuse, that does not mean that you will be a substance abuser.

Like how I have bipolar disorder which means I have a life expectancy of 60.  That does not mean I’m going to drop dead on my 60th birthday, it means I have to take care of myself.  I don’t smoke.  I need to eat better and exercise more.  But also accept that there are no guarantees in life – I could walk out my door and get hit by a car tomorrow.

Be mindful of your own behaviour.  Acknowledge when your lifestyle changes and be honest with yourself as to why.  So you don’t socialise as much as you used to.  Why is that?  Maybe you’re under a lot of pressure at work right now and having to stay back long hours for a while?  Fine.  Or has your confidence slipped?  Do you not feel as close to your friends as you once did?  And do you find yourself reaching for the bottle more and more now that you’ve got more time sitting on your own in front of the tv?

Changes in weight, sleep, lifestyle should always be examined.  It’s not always going to be a cause for alarm, life is about change after all but change is not always positive and not always necessary.

Take care of yourselves

Mac

Aspergers and Familial Embarrassment

I’ve complained about feeling like a target of disdain from my family but the truth is, I’m not the only one.

I have this uncle on my father’s side who probably has Asperger syndrome but I don’t believe he has ever been officially diagnosed. He has trouble reading social cues and empathising with others so overall his capacity to function in mainstream society is very low. He lives with my grandma and has been unemployed for at least ten years, possibly longer.

And yes, he’s the one that my mother holds over me whenever we’re having conflict. You’re the one with the social dysfunction, and that’s obviously what any conflict we have is based on. You need to apologise and accept that you’re just a shitty person compared to the rest of us. If you don’t, you’ll end up living in the basement like him.

As far as I know, he’s not there because he refused to lie down to his mother’s emotional blackmail. He’s there because he’s tried to live independently in many different contexts – as a bachelor, married, as a Buddhist monk – and it’s all gone to shit because he can’t empathise with others and live under anyone’s rules but his own. Maybe he could have if he got the same kind of support when he was younger as I did.

Not that my grandparents didn’t care; it was a different time where there were no behavioural disorders, there were just bad kids who were socialised into a lifestyle of ostracisation that would be so hard to escape.

He presents as what you would call an oddball but he’s harmless unless you’re the type of person who is distressed by conversations dominated by talking about chewing tobacco and tarot cards. My mother would appear to be one of those people.

He embarrasses her. I came to understand that very early on in life, I didn’t fully understand why until my understanding of adult interaction developed later on. I knew there were tough times. He’d been married twice, to the same woman but both marriages were short lived. He’d attempted suicide a couple of times. His life seemed far removed from my own until I started struggling myself in my early twenties and the similarities became frighteningly clear. Looking at him can be like looking into a possible dismal future of wasted potential and suddenly my mother’s threats developed a powerful hold over me that still keeps me wake at night.

It makes me sad, thinking about how things could have been different but I don’t know if my mother feels that way. She never lets on if she does. She just gets embarrassed. Every time we have a family get together, she can be heard bemoaning his presence afterwards. He makes her uncomfortable, and dislikes the way he dominates conversations.

Last weekend we had a party for my grandma’s 80th at a nice restaurant. I brought my boyfriend with me, this being the first time he’d met my extended family. As soon as we walked in my uncle came up and thrust a packet of tobacco under my nose, joking that it would enhance my sports performance. I had to politely decline a couple of times before he got the message but by now I’m used to his manner; this interaction didn’t bother me at all.

Out of the corner of my eye I could see my mother looking alarmed as she does whenever he talks to one of us children but no drama ensued and we got on with the party. All was forgotten and my strongest memory of the day was the look of pure elation on my grandmother’s face when the waiter placed her birthday cake in front of her.

My mother however was still bothered by the interaction between my uncle and I today when I went to her house to do some work. She stood with me as I typed away and asked me fretfully,

“Did I imagine it or did he try to make *BF* take some chewing tobacco?”

I assured her that he was offering it to me and tried to laugh it off, but she wasn’t done.

She vented at me for a while about how embarrassed she was. She asked me if I could see that the chewing tobacco represented a destructive fixated interest. I shrugged.

I wish I could pinpoint why this makes me so uncomfortable.

Maybe it’s just as a fellow aspergian I feel uncomfortable hearing him described as an embarrassment. My view as an insider is going to be different and my mother has made her feeling over some of my less than genteel behaviours abundantly clear. She doesn’t like me ‘engaging’ him. I talk to him but I’ve become good at keeping our conversations being derailed by fixated interests. I don’t see why I should pretend he doesn’t exist but I feel like the rest of the family are on a different page. Mother got annoyed when she found out that I’d been interacting with him on facebook. By interact I mean that he comments on my status, I reply to him. That’s as far as it goes

Is it just my non-NT status that makes me sad, rather than embarrassed? I can see that his behaviour is often totally inappropriate. It’s not hard to see how his life ended up as it has and while I struggle to accommodate other people in my life, it’s something that I consciously work on because life is impossible without some form of coexistence.

It’s also interesting that he’s my dad’s brother, the closest one to him in age but I don’t recall him ever giving his take on the situation. I feel like I’m going to have to ask him about it at some point just to make sense of it all. Right now though the thought is too upsetting, I have the feeling that at least it would make him uncomfortable.

In the mean time I can’t stop wondering, how long until my family start pretending that I don’t exist?

Mac

Autisitic…or Person With Autism?

Who is insisting on that distinction and why?

PC terminology is a big deal these days.  Many terms can inadvertently cause offence it seems. It’s not necessarily a bad thing – people are finally starting to accept that using certain terms that have previously been acceptable jargon can be triggering to the minority group they are describing. Most people are decent enough to decide that they don’t want to causes unnecessary distress.

Certain people are becoming more insistent that people with a disability are addressed differently that what was previously accepted. For example, those of us on the spectrum are no longer autistic. We are people with autism.

When I say certain people, what I mean are parents of people with autism (yes, I’m prepared to play along.)  I have never head anyone on the spectrum describe themselves this way, and I know quite a few.

I have a lot of gripes with how parents talk about their children on the spectrum. For example, if I hear or read anyone describe aspergers as a “not a disability but a wonderful ability” ONE MORE TIME I’LL…probably write a whole blog post explaining why I find that distasteful.

Ahem.  Where was I?

Oh yeah, PC autism talk.

I won’t be too quick to dismiss this latest jargon trend emerging amongst the mummy bloggers, but I’m still wrestling with whether I’m prepared to hop on the band wagon.

I’m not easily outraged. Sure I don’t understand social cues on an interpersonal level, but I’ve spent a lot of time people watching to try understand them better. I like to think that as a result, I’ve developed a decent understanding of people’s motivations in a broader sense.

Intent is very important to me. I’m not easily outraged by sketchy terminology because that kind of reaction best reserved for those who are being intentionally dismissive or derogatory.  Being overly sensitive about terminology regardless of intention is really quite precious.

Do you really think that those describing people on the spectrum as autistic are intending to be derogatory? Really?

The reason why hate terms are being phased out is because they existed to isolate and discriminate the people they are used against.  The word autism simply doesn’t have those connotations for me.  It’s in a completely different category to other words that have been thrown around to describe the socially challenged.  These are words that have been rightfully stigmatised.

For example.  Do you think that calling someone autistic is on par with calling them a retard?

UGH!  What a horrible word that is.  That’s triggering. That’s a word that caused me serious distress, and causes me to cringe whenever I hear it. No-one who uses that word is interested in being understanding, insightful, tolerant. Thankfully, these days it’s largely recognised as a hate term, and using it is a grave social faux pas.

You might argue that as a person with aspergers as opposed to high functioning autism, I have no more right to assume the thoughts of people with autism on the matter than the family members observing from the outside, but with the elimination of aspergers from the DSM V we’ve all been lumped in together. Now, all of us on the spectrum are people with autism. I think of myself as a person with autism..

Am I offended by being described as autistic? No. I don’t appreciate anyone jumping down my throat for using the term though I am open to being educated. I get that insensitive terminology wouldn’t just be offensive to people with autism, it hurts everyone close to them

Describing someone as autistic can be seen as defining someone with their condition.  And some people on the spectrum are actually in favour of that.  If a person with cancer beats their cancer, or a person with epilepsy stops having seizures, they, they personality and thought processes which define that, are not changed.  Not so with the person with autism.  Remove the aspergers and I’d be looking at the world in an entirely different way.

I still don’t consider myself totally defined by aspergers, but when people find out that I have it, suddenly everything I do is an ‘aspergers thing.’ And it irks me beyond belief.  But I know that the problem is their ignorance, not me.

Maybe, just maybe, the reason that I feel apathy towards that term ‘people with autism’ is that I feel secure in my diversity as a person. I know I’m more than just a diagnosis.  Maybe the reason that others on the spectrum want to be referred to as autistic is because they’ve also come to terms with their autism as just one part, albeit a significant one, of a colourful personality

Maybe, just maybe, the reason that parents of people on the spectrum are bothered by the terminology masks a fear of a life defined by limits rather than potential.  That the diagnosis will end up defining a life time of social panic, struggles to stay in gainful employment and maintain relationships. At the more severe end of the spectrum it defines carers fatigue and an inability to live independently.

Austism parenting can be challenging and heartbreaking at its worst. I realise that word throws your child’s limitations in your face, and focussing on limitations isn’t helping anyone get the most out of life.

While you can refer to me as autistic all you want, I don’t want to be that person who throws your child’s limits in your face. That’s rather rude.

Prejudiced people regrettably tend to be more vocal but I’ve found that most people do want to be supportive and are happy to be educated. So If they accidently cause offense, be patient. Be kind. Chances are, that’s the courtesy they are more than willing to give you.

I’m still not a hard core advocate of the terminology but I don’t want to hurt anyone when they’re just trying to be as positive about life as possible.

I may be blunt, I may be critical, but I implore you all to consider my intent.

My intend is to be your ally. To be your friend.

After all, that’s what people advocating for a change in terminology are trying to be for me and others like me.

Peace, yo.