Panic!

Trigger warning: discussion of self harm.

It’s mental health awareness week and I have deliberated about writing this. I am not ok. But I am also not really ok with people knowing that. However, given the point of this week to increase awareness and understanding of mental illness, I am putting this out there. It is scary. It feels like I am turning my brain inside out and hanging it out for everyone to see. But it is my hope that it helps someone and creates empathy for people with mental illness.

This week I added more diagnoses to my very long list, generalized anxiety disorder & panic disorder. I have struggled with anxiety in the past, particularly from social anxiety, but in the last couple of months the anxiety has become extreme and I have been suffering from panic attacks. These come on suddenly and the feelings of dread quickly become overwhelming . My heart speeds up (my apple watch tells me my heart rate gets up to around 110-115 beats per minute) and I can feel it pounding in my chest. I feel faint and dizzy and like I can’t breathe. The first few times it happened I thought I was having a heart attack. Now that I know what it is I can recognize that I have had a few in the past, but not as consistently as I am getting them at the moment. They are very scary and I feel a constant sense of unease.

I visited my psychiatrist with my nurse case manager on Wednesday to discuss my medication. I am already on medication for my anxiety that is supposed to help with the panic attacks, but the increase in my mood stabilizers a few months back have caused me to gain 12 kg in about 3 months. I wanted to see what other options there were as the weight gain is very uncomfortable and makes it hard to do the exercise I need to do to stay well as the heavier I am the worse my back pain is. This is a real shame as the current mood stabilizer I’m on (Epilim) has made a huge difference to my mood once the dosage was tweaked. For the first time in years I had felt neutral or good about 80% of the time, and even when the downs hit there was an underlying buoyancy to my mood which meant they were not as persistent as they had been in the past. It was so nice to be able to depend on my mood being ok, and I finally lost the suicidal ideation that has dogged me for at least 7 years.

However, adjusting the medication is what had to be done for physical health reasons. Unfortunately, this meant dropping the Epilim dose by 2/5ths and slowly titrating on to a new med. With this drop my mood has disintegrated. Last night was not a good night for me. I think words do not accurately convey the desperation I felt. It’s hard to explain to people without lived experience of mental illness what it is like to go to the supermarket and be triggered by the alcohol on display because feel such strong desire to drown yourself in alcohol but know that if you do you are loosening your inhibitions and you might harm yourself in that state. To walk past the personal care aisle and see the razors and not be able to resist standing in front of them, wanting blades to harm yourself. To stand in front of the bandages and wonder if you should buy some because you are probably going to fail to hold yourself together in this psychological storm, but wonder if by buying the bandages you are somehow giving yourself permission to self harm.

I didn’t buy razor blades or bandages. But it took superhuman strength on my part not to.  I came home. I did my mindfulness exercises. I rocked in my rocking chair with my weighted blanket, headphones on, listening to my favourite music, for an hour and a half. And the storm raged on. The drive to self harm was so strong I could clearly picture the blade against my skin and the droplets of blood as they slid down my arm. And what that pain feels like and sensation of afterwards when the endorphins kick in. Even the shame that always accompanies the cutting.

This isn’t pretty and it probably horrifies most people. I continue to write and put my experience out there even though it is raw and hard to look at because this is the reality of my mental illnesses. It’s not nice, it’s not pretty, and it’s not easily understandable unless you have come through it yourself. Anyone can struggle with illnesses like mine at some stage in their life. And you more than likely have no idea what they are going through. Yesterday I smiled and said I was ok, when I had all this going on in my brain. It’s not polite to answer the “how are you” question with a real answer, especially if you are in public. But that doesn’t mean the person who is saying they are ok actually is. Look beyond the words on the surface. Life is complicated but a little understanding and kindness can go a long way and doesn’t take much.

Yes, I am disabled

I got a formal ASD diagnosis last year, several years after my second informal diagnosis. I had thought that getting that piece of paper would be validation of how I have experienced the world throughout my life. I’d begun the process of reframing my earlier experiences through the lens of neurodiversity and letting go of some of the shame I have been carrying about who I am. What I hadn’t expected was how big of an adjustment it’s been to wrap my head around the fact that I have a disability.

A disability is an impairment which reduces a person’s ability to do certain activities and interact with the world around them. No matter how hard I try (and believe me it’s a lot) I will never experience the world the way a neurotypical person does. Some of my autism related impairments can be worked around, but these work arounds have costs for me. Some of my impairments would be less of a problem if the world was set up in a way that worked better for me – for example accessible design in public spaces would reduce sensory impact on me – and society had more understanding of autism and acceptance of difference.

Recent MRI imaging studies have found that the brains of people with ASD have differences in anatomical structure, local neuronal circuitry and the function of brain regions. I couldn’t work out for quite some time why this upset me when I knew that autism was a difference in brain wiring. Tonight I was mulling this over again and I realised that while I thought I was “at peace” with being different, I had internalised the idea of neuroplasticity. Neuroplasticity is the brain’s ability to reorganise itself by forming new neural connections. It has been fundamental to the treatment of my depression and borderline personality disorder, as the psychological treatments I have worked my way through have been about creating new responses to trigger thoughts and events.

However, with autism, no amount of work on developing new neural pathways is going to make it go away. I am stuck with a brain which has developed differently and will continue to look and function differently to the majority of people.

In one way this releases me from the burden of searching for the right therapy to solve all my autism related problems. On the other hand, I’ve realised these differences will be with me forever and it is not something I just need to work harder to solve. I am disabled. No matter how hard I work

  • My senses will always be more finely tuned than yours
  • My hearing will work differently to yours
  • I will always have to work harder to process speech than you do
  • I will always struggle to stay organised and manage my day to day life
  • Transitions and change will always be a challenge
  • I will be prone to overstimulation, meltdown and shutdown
  • My ability to follow conversation is not going to improve
  • I will still spend much of my social interactions smiling and noding while hoping that isn’t an inappropriate response because I have no idea what is going on
  • Face blindness will continue to be a problem for me
  • Social rules will always be a mystery to me
  • I’ll always have to be prepared in case I become overloaded and non verbal
  • Almost nothing about the way neurotypical society works will ever be natural to me

I think I had always assumed that diagnosis meant being able to be “fixed”. This is the medical model of disability, where you figure out the problem, you “fix” the problem and the outcome is a normalised functioning member of existing society. Despite knowing that autism could not be fixed and would not go away, I had held the belief that somehow I would remain autistic and yet be fixed and function like a neurotypical person in a neurotypical society. I can see now how that doesn’t make any sense but I’ve been living my life with the knowledge of my diagnosis thinking that I just need to fix myself and all will be fine.

However, knowing that my brain is fundamentally different and accepting I am disabled means also acknowledging that I am not going to be “fixed”. This is who I am and because I can not fix myself, I need to ask society to remove the barriers that keep me from being part of it. It is ok to acknowledge who I am, to ask for understanding and acceptance, and to request the accommodations I need.

It is my hope this will also alleviate some of my depression. If I am prepared to acknowledge that many of my struggles are due to the ways in which I have coped with a society which expected me to adapt to it, then I can start letting go of the guilt and shame I have for failing in this. I was set up to fail, and that failure has taken a terrible toll on me. My mental illnesses are a product of this.

Ka Kite

Day 4 of lockdown

I had this idea that I would try to write daily or at least every second day during lockdown so I could document what it was like, plus help with my mental health during this period. However, I forgot that I’m me and consistency is not really my thing so here I am at 11pm on day 4…

In my defense though I’ve worked an extra 14 hours this week despite watching the press conference on Monday, the mad rush of preparing for lockdown, having to take Miss G with me to work on Tuesday (schools were closed but I was trying to get stuff done at work while I still can) and then home schooling Wednesday – Friday. It’s coming up to 31 March which is end of financial year so work is always crazy at this time of the year anyway. I hate March and I dread it every single year. We are always way behind our deadlines no matter where I’ve worked and end up doing lots of extra hours trying to get things done.

For those who aren’t accountants – 31 March is end of financial year and normally you would have to file your tax return by 7 July the same year. But if you have a tax agent, which as an accountant is what I am, the IRD give you an extension of time so you have till 31 March the following year to file your tax return. The catch is though that everyone still has till 7 April to pay their tax for the year, so whether you file by 7 July and have 10 months to save for your tax, or file by 31 March and have only 7 days, you still have the same payment date. If you don’t file on time you get a penalty and IRD charge interest if you don’t pay the tax on time, plus another penalty for not paying the tax.

So every year we have people who wait for nearly a whole year to bring their information in, then want their tax returns done ASAP. And that doesn’t include the people whose jobs we did start earlier but sent questions to them and they didn’t respond for weeks, or those whose jobs came in January/February and were put on the back burner as they weren’t as urgent as some of the others.

Every accounting practice works differently in terms of managing workflow but pretty much March is always crazy. You always have people who wait until the absolute last minute to bring their stuff in, plus you still have to fit in all the people who want advice and other work done.

So with Corona virus craziness, and then lockdown happening this week and all the extra hours I haven’t been feeling the greatest. Things are not terrible as I have a lot of work to get through so that’s taking my mind of some of the other stuff. But every so often I slip into panic mode and have a little meltdown. Today’s was about the house being messy and dirty. Because we are now here 24/7 we make more mess, there’s more dishes, and there’s more cleaning that needs to be done. But I worked 7am – 6pm today (Sunday) and the same on Friday and I am sooooo tired. So today I have worked madly, then melted down because the kitchen was messy and dishes needed doing (I can see them from my desk in the lounge), then worked madly, then panic again because there is still sooo much work to do.

In the midst of all this I was trying hard to use my strategies. I know I’m not getting enough sleep but I did go for a walk for about 20 minutes in the middle of the day. It is so eerie out there. The roads are quiet and there was a lot less people out exercising than there has been in the last couple of days. The people I did see kept the required 2m away from me, which in itself feels a bit like you are infectious even if you aren’t as when you are walking towards each other you both end up swinging out wide to avoid being too close.

I’m starting to reach news overload. I care but I’ve had enough of hearing about the virus and the lockdown and the effects on the economy. I’ve had enough of the worry. And definitely enough of the comments on facebook about people flouting lockdown rules. I’ve had enough of not knowing what will happen next. And I’m trying not to think about this being only the beginning as how “our whole way of life” will change as people keep saying. These last two days I have limited the news and facebook as I don’t think they are helping my mental stability, but limiting facebook is a double edged sword as it also limits some of my social contact.

In my household there is Miss G (age 11) and myself, so no other adult to talk to in person. We are also in a bubble with her Dad, step-mother and her son (age 23) so Miss G can continue to see her Dad during all of this. That means both households can not see anyone else (not that we should anyway) as we are counted as one bubble. However, while she gets to leave to go to a different house and talk to others, I don’t. I am pretty good at being by myself but it still gets lonely. This morning (Sunday) she left at 9am and won’t be back till 5pm on Tuesday. Three days of being by myself at home 24/7. Good thing I practiced for this when I broke my back December 2018!

I was thinking today that both breaking my back and doing contracting work from home in 2018 have prepared me well for this journey with Covid-19. I am used to isolation from spending 4 straight weeks in bed with my back, then several months of very slow recovery at home by myself. And contracting from home meant I already knew what that looked like for me, I had the technology and had developed routines that worked. While both of those were very trying times I am thankful that I learnt from those experiences so I can put what I learnt into practice now.

I am missing my standing desk from work though. ACC had paid for me to have a fancy standing desk where I just had to push a button to make it go up and down, and I had programmed various height settings into it for various tasks. Now, I’m at home with my one height desk and my back has been killing me. I didn’t realise how much I relied on using my ergonomic equipment until I didn’t have access to it anymore. 9 plus hours of sitting at my desk with no standing breaks and not even any getting up to go to the printer is really hurting my back.

Anyway, I need to go and get some sleep so I can get up and do it all again tomorrow. Stay stay everyone.

Ka Kite

Day One of lockdown

So today, here in little ol’ New Zealand, was the first day of the four week lockdown. Things have been anxious and up in the air for a couple of weeks, and gradually getting worse, so to have certainty on Monday that the country was locking down in 48 hours was kind of a relief. And today felt like business as usual, interspersed with some strange moments.

I’ve worked from home before (6 months in 2018) so I know what it’s like to try and work remotely, be self-motivated and try and stay on task. But I had not tried to parent/home school while simultaneously try to work my normal 8 hour day five days a week so I was pretty nervous about how that was going to go. We had a practice run at it yesterday which went ok, but today was both more challenging in terms of trying to get Miss G (age 11) to do some school work, and less challenging in that my anxiety was lower and I was more prepared today.

The last month has been a real rollercoaster for me. I broke my wrist in January and when I got my cast off after 6 weeks they found it hadn’t healed properly and there was some talk about possible surgery. Thankfully after splinting it for several weeks, hand therapy, exercises and a visit to the orthopedic specialist, surgery is now off the table, but I was pretty concerned there for a while. I still have limited range in my wrist and damage to several ligaments, plus various sprains that haven’t healed yet but the bone chip they were concerned about is not the problem they thought it was going to be.

My mental health has been it’s usual – very up and down. I’ve had some really bad days where I’ve struggled with suicidal ideation and thoughts of self harm. I have a strong urge to drink all the alcohol I can get my hands on, which is bad as I am a very depressed drunk and likely to self harm (cut) when I drink. One of my previous nurses termed this “functioning alcoholism”. I am not the usual stereotypical alcoholic. I don’t drink regularly, and I hold down a job and am (hopefully) a reasonably functioning, productive member of society. But when I drink, I binge. I drink a lot, drink alone, and I black out. It makes me depressed and lowers my resistance. Like everyone, I am much more prone to doing incredibly stupid things when I drink, and because I have underlying mental health issues those stupid things include various ways of hurting myself.

So all of this has been going on in the face of the serious crisis COVID-19 has become around the world. I’m an anxious person in general, and had started planning back in February when it looked like things were going bad. However, I am also a person with executive function issues so planning and thinking were as far as I got until about two weeks ago when Italy’s deaths started increasing rapidly and our government started taking more actions. My anxiety was through the roof by this stage, as was a lot of people’s I think. The crazy supermarket stockpiling madness was going on, people I work with were very on edge, and the news was full of scary stories.

Thankfully I had a feeling on Friday that we might end up in lockdown this week so I got us sorted. Over the weekend I ran around and got new computer equipment (modem, router and tablet I had been going to buy for ages and had been putting off), winter clothes as it’s going into winter here and getting cold, refilling my prescription meds, buying groceries (not stockpiling, just refilling) and getting chores and errands done that I’d put on the back burner. For once my anxiety had helped me by preparing me for the worst and envisaging what we might need in various scenarios.

By Monday I was knackered and on high alert. It was obvious to me the country was going to have to lockdown but the question was when and how much notice would we get. After the PM made the announcement on Monday many people (including me) were stunned and struggling. I couldn’t concentrate, and my speech kept getting stuck. I ventured out of work about an hour after the press conference and it was chaos, traffic everywhere, lines out the pharmacy door, panic buying at the supermarket.

Today’s been a stark contrast. It’s quiet as there is very little traffic on the road. I have my desk set up and a vague routine in place. I managed both PE time (kicking a soccer ball) with Miss G and a walk, plus did a full day’s worth of work. It’s an odd feeling after so much stress and worry. Of course it hasn’t all gone away. No one knows how many people will get sick, how long we will be in lockdown, whether we will have jobs to go back to etc. But we still have plenty of food in the fridge and are not too bored (yet!). It’s going to be a very odd four weeks at home.

I’ll leave you with this. It’s not particularly fitting for this situation but I found it today and I love the rhythm in these words and the phrase “Light bends around us”. This piece is an excerpt of from “In Transit (for Arthur Eddington)” by Neil Gaiman:

Light bends around us. So we run,
as gravity reclassifies
the stars we saw behind the sun.

To see the world beyond the skies,
to know the mind behind the eyes,
To find the many in the one
he showed us stars behind the sun.

The full poem and a piece on who Arthur Eddington was can be found here .

Ka Kite and stay safe out there everyone.

Depression

The last month or so I have written post after post in my head. Unfortunately I broke my wrist in two places in mid/late January so writing in my head is about how far they’ve got. I am finding it hard to do much typing with one hand, and I’m sore and tired a lot during the week after having been at work during the day.

This month has had it’s ups and downs. The new kitten is a perfect little ball of sweetness and has brought much joy to my life. He’s very cuddly and loving which is just what I’ve needed. The broken wrist has been quite a down and I’ve found it really difficult to cope with doing ordinary things like laundry, cooking and dishes. Thankfully Miss G (age 11) has done a lot of cooking but she’s not here 2 to 3 nights a week so I’ve been relying on takeaways, which has not been good for my bank account or my waist line.

I had been much more on track with my eating towards the end of last year. I managed to get in the right frame of mind and lose 21kg on optifast in 12 weeks September – December. Things slippped over Christmas and school holidays but I was getting back on track, and then i broke my wrist. My eating has completely fallen apart again, I’m bingeing on junk food like I used to and things feel out of control. That has a lot to do with my state of mind at the moment as much of the time I can recognise that I don’t even like or am not getting enjoyment out of what I’m eating but I’m doing it anyway.

In the past I’ve used being fat like a shield so I always have an excuse to not put myself out there or try. I also don’t like myself so it’s like a punishment as well, feeding myself stuff that I know makes me feel physically yuck, lets me blame myself for doing the “wrong thing” and has the effect of making me fat so I can push people away and have an excuse if they don’t like me.

At the moment I’m struggling with depressive thoughts and the eating is part of the hatred I feel for myself. I am having a lot of suicidal thoughts and these always come up to offer me a way out when things are feeling particularly bleak. I walked up some hills at our local regional park today and when I got to the top, instead of admiring the view I was contemplating throwing myself off the edge. Not that it would have been much of a drop, not enough to die at any rate, though more than enough to probably break both my ankles and sustain quite a lot of brusing.

It’s not the sort of thought normal people have, and it’s really hard to explain as I know I scare people when I start talking about these things. I have been hallucinating bodies again in the last few days (this is another one of my warning signs) and people really look at you strangely if you bring that up! How can you tell someone that when you feel like I do every time you get in your car you think about what it’s like to die of carbon monoxide poisioning? And that I know I can’t have alcohol at the moment because it lowers my defenses against doing something stupid and that only makes me want it more.

I am taking my normal preventive measures, not that I want to. I feel an odd lethargy about doing anything but once I get past the procrastination I do enjoy some things (skating, art, exercise). But as soon as I stop I feel terrible again. Its almost always worse afterwards even though in the moment I felt better. I’m not sure why that is. I kind of picture it like the dark cloud lifting momentarily and then descending again, once it does things feel darker than before.

I try not to think of the long term. Living with persistent treatment resistant depression means it comes back regularly and some bouts are worse than others. Sometimes its a flat patch for a few weeks, sometimes I’m in a hole for a few months. My breakdown 6 years ago brought me to my knees for a very long time. If I thought about it too much I might not want to go on trying, knowing the next bout is never far away. I don’t truly want to die, I just hate feeling like this.

Till next time.

Ka Kite

Crisis

Lately I’ve been feeling like my load is pretty heavy and I’m having trouble with every day functioning. It’s not one thing but a range of things, the latest being that Miss G was diagnosed with hEDS (hypermobile type Ehlers-Danlos Syndrome) and has had to have a complete change in diet. She’s also been in a lot of pain recently due to her hEDS leading to inflamation in the growth plates in her knee and ankles causing Osgood-Slatter’s disease and Sievers disease. I already felt like between the two of us our multiple diagnoses were a lot to manage, now there is one more complete with a new dietary regime and more involved pain management.

So I’m already feeling overloaded and overwhelmed. My own mental health has been unstable for the last month or so. I can’t pin point why but I’d say the levels of stress from everything going on in my home life are probably having a cumulative effect on me. I hit crisis point two weeks ago where I left work mid morning and visited the doctor, and ended up with an increase in meds and a week off to try and get back on track. The meds made me dozy and unable to function and unfortunately the rest didn’t really help.

Over the weekend I had an argument with B (Miss G’s Dad) which wasn’t that bad as arguments between the two of us go, but I broke down in tears afterwards and couldn’t think of what to do so I turned up at my parent’s place and cried on my Dad’s shoulder for a good half an hour. And when I say cried I mean bawled my eyes out, to his bewilderment.

This week has been hard. I’ve been interrupted a lot at work, answering queries from a new staff member and another lady. Flexibility and focus are not my strong suits. There’s a lot of external noise around the office (weed eaters, birds, builders…) and my sensory issues have been really triggered. I’ve had client meetings which require me to utilise my limited range of social skills, and because so much effort goes in to masking during these meetings I find them really draining. Miss G has had Education outside the Classroom (EOTC) and this has required special planning and management on my part, plus pain management for her various joint/muscle/tendon problems. Not to mention finding the planning and organising for EOTC fortnight difficult due to my executive function problems. I also had a meeting with Support Net where the liaison person was lovely but basically pointed out what I knew – I’m not entitled to household management help as I earn “too much” (I’m not that far above the cut off) but I have significant areas of challenge, so they are not really sure how to help me. My psychologist has also resigned which is causing me anxiety, and I feel like there are no solutions left for me. That my therapy has reached the end of the road where no one knows how to help me, and I don’t know how to help me, so life is hopeless and pointless.

So I already had all this weighing on my mind today. I knew I wasn’t feeling very stable this morning as I was quite tearful driving to work for no reason that I could work out. My morning was full of meetings and interruptions and the unexpected, which was overwhelming to my already overtaxed system. Just before lunch I was ready to tell one of my bosses that I was struggling and going to take some time out and walk for a bit when I got interrupted again. At lunch I did manage a walk which made me feel a bit better, but then I came back to the office and that’s when things took a turn for the worse.

I had an argument with my older male boss about something I strongly believed was wrong. I also interpreted what he was saying as him implying I had done the work wrong, which I knew I hadn’t but I always find very triggering. He wanted to double check my work to see if there was a way to pay a client’s employee less for holiday pay, and I believed that not only had I got the correct entitlement per the law, but that it was wrong to pander to the client who wanted to pay his staff less wages because he hadn’t budgeted his income correctly.

The argument got quite heated and my boss made some comments I interpreted as derogatory. I knew I couldn’t stay at my desk once he had walked away – I was about to burst into tears and I knew I wasn’t going to be able to stop. I work in an open plan office and there is no where to go when that happens. I felt a strong impulse to run, to get away. So I grabbed my stuff, slammed out of the office, got in the car, and headed for the nearest open road.

I often feel better driving at open road speed with the music up loud enough I can feel it in my bones and pounding in my chest. The car I have now hasn’t really got decent speakers which is a bit frustrating but as I tend towards music with a strong bass line I can still usually feel the bass in my chest.

Tears were pouring down my face and I probably wasn’t overly safe on the road and I didn’t have any destination in mind. All I could think about was that I wanted that sensation of speed and the feeling of the music to calm me. A good half an hour drive and I was still crying so I came home thinking to try some other strategies. But once I walked in the door I went into total meltdown. I was crying so hard I was wailing, and I was sitting rocking as that was the only thing that felt vaguely comforting.

I tried so hard to think of what strategy to use and I knew I wasn’t breathing enough but I couldn’t seem to calm down enough to breathe deeply. Cold water on my face didn’t help, ice didn’t help. The tears and wailing kept coming and there was so much sorrow pouring out of me that I couldn’t think coherently. I tried to work out who would be around during work hours to answer their phone (all my close family work and don’t normally have phones on them during work hours) but then realised that I was so distressed I’d lost the ability to speak so I couldn’t ask for help. I couldn’t calm down, I couldn’t ask for help, and I was going to be alone till my daughter got home at 7pm (it was 2.30pm) and I was concerned that I would self harm or worse as I felt hopeless and impulsive.

So I got in my car and did the only thing I could think of, drove to CMH (Community Mental Health) with the intention of seeing the Crisis team. When I got to CMH reception I’d only just managed to stop crying, but the minute the receptionist spoke to me I broke down sobbing again and couldn’t stop. I couldn’t communicate what I needed but she was really good. I see her every week when I go in for my appointment and she knows I’m not normally like that so she gave me a hug (also an indication of how desperate I was, as I normally hate touching other people except Miss G) and called the Crisis Team for me, then sat with me till they came.

However…as soon as I started talking to them I wanted to run away again. The words wouldn’t come out and I couldn’t organise the thoughts and remember the right ways to describe things. I couldn’t answer any of their questions, partly because physically I couldn’t speak, and partly because they ask open ended questions like “what do you want us to do for you?”, “what were you expecting when you came in here today”? and I never know how to interpret them. I was so overwhelmed by someone talking at me, especially asking questions when I physically can’t process or answer them, that it was actually painful. All I wanted to do was get up and leave.

I tried hard to communicate with them, and eventually I managed to get enough out that the man could interpret what I had said and relay it back to me. Then the lady (who was persisting in asking me things I couldn’t answer) left to get me a coffee and he asked me some work related things, which gradually brought me back to reality. I think because I feel safe and comfortable in my accounting and business knowledge that it grounded me a little and gradually my speech returned. I was still having trouble stopping crying but at least I’d managed to calm down, breathe and start speaking a bit.

I didn’t really find what they’d said very helpful as they clearly didn’t have much knowledge of my background, circumstances or diagnoses but I could see they were trying to help and so I tried hard not to be annoyed. And it’s not like I was in a position to explain much as I was still not really able to think clearly or fast enough to be involved in conversation. I just wanted to run fast in the opposite direction and get out of there as soon as I could.

I was still crying hard as I drove home but my processing was slightly better so I decided my next step was a swim in my parent’s pool. That was a good way of cooling me off and calming my sensory system and I managed to stop crying after that. Then it was home to cuddle with my ratty and sit in the garden and try and reflect on what exactly had happened and why.

I’m mainly documenting all this for myself but I also think there is a lack of understanding in our community about why people with depression or mental health problems don’t ask for help. Today is not the first time I’ve gone into shut down when overwhelmed with emotion and been unable to explain myself. My communication issues might be more extreme than other peoples but in general it is very hard to explain how you feel when you are really down, and need to ask for help. People tend to be very well meaning but the questions that come up all the time are “why?” or “what happened?”. Sometimes there is a reason but the person may not understand or be able to communicate it, particularly in the moment, or be able to pin point the trigger. Sometimes there are down days and bad days and shit just happens. It is more important to stand beside someone and hand them tissues and be there for them than it is to interrogate them over why they feel that way. I know it’s hard to sit with a person in distress and not try to solve it for them but this is often what they need. This is what I need. This was what the receptionist at CMH did for me today, which was more valuable than anything the crisis team said to me.

Take care out there people. Ka Kite.

Self-harm can be more than cutting

Trigger warning – this post contains discussion of suicidal ideation and self harm.

I have BPD (borderline personality disorder) and have struggled with self-harm for a number of years. This is no secret, I have scars all over my arms which I make no effort to hide, and to a lesser extent on my legs and torso. I’ve also written posts about it before. What I haven’t posted about before is recovery, mainly because I felt like it was so tenuous that I might jinx myself if I said it out loud. Trying to recover from self harm is what I imagine recovering from any addiction is like, there are so many backslides and the urges are overwhelming to start with. Even when you feel like you’ve been better for a while and the urges are decreasing, something can come along and upset things and you are back at square one again.

In the last year or so I’ve done a lot of thinking about self harm. I had cut myself a bit as a teenager but not regularly or deeply. I had one particularly memorable occasion when I had a huge fight with my sisters and afterwards I was so overwhelmed by emotion that I took a box cutter and cut my arms to ribbons. But mostly as a teenager I was deep in my depression and consumed by suicidal thought and/or running around doing all the things so I didn’t have to feel anything.

I had been pondering why I had started self harming by cutting as a teen and then been able to stop, without really experiencing any of the major addiction type issues that have plagued me in the last few years. And I realised that “busyness” was the key to it all. It was a way to keep myself moving so that the bad stuff couldn’t touch me, but also a way to punish myself. The more tired I got the more I did. I was a chronic over-committer. If I was busy I would sign myself up to another thing, and then be angry at myself but do all the things anyway.

Over the years I have also used food as a way to punish myself. I have had brief flirtations with bulimia, but my main obession for a while was to eat as little food as possible. I did this for about 3 years and while I was never seriously anorexic, I was obsessed with every last calorie, writing down every last thing that went in my mouth and exercising twice or more a day to make sure I worked it all off.

I’ve always had a problem with sleep. One of my memories age 7 or 8 is of reading in the light of the hallway and hurredly putting the book down if one of my parents came to check on me. They knew I was doing it but I don’t remember getting in trouble for it. It would have been rare for me to go to sleep much before 10pm and usually was more like 11pm. Later this became a bad pattern where I would forcibly keep myself awake or not go to bed even when I was really tired. I knew I would feel awful the next day, often I felt awful at the time. But I don’t like myself very much so taking care of myself has never been high on my priority list.

Then I went from training for half marathons, to training for triathlons, to half ironman, and into training for a full ironman. Only just over a year after I did my first half ironman I did a full Ironman, despite working full time and studying for my professional exams at the same time. I had a full work load and I was grumpy all the time and I just kept forcing myself out there. It wasn’t unusual for me to get up on Sunday morning and cycle 6am – 10.30am, shower and change and study from 11am till 6pm, after a 2-3 hour run on Saturday and a 40+ hour work week, and 1-2 training sessions per day (3 squad swims, 3 runs and 2-3 cycles per week on top of my long run & ride at the weekend). Plus I often had other study or work comittments during the week. Mentally and physically it was tough but while I was out there punishing my body I could fool myself into thinking I was being healthy. In reality I was in my deep dark hole of depression and using the exercise to make myself hurt, and the busyness to ensure I didn’t have time to stop and think.

5 years later, as a full time working solo parent of a autistic 4 year old I decided it was a great idea to run a marathon. I had a flat mate who would get up to go to the gym at 6am, so my deal with her is that she would stay home until 6 and listen out in case Miss G woke up. The longer I wanted to run the earlier I had to get up as she was uncompromising about leaving for the gym at 6am. As it got closer to the marathon I would get up around 4am finish my longer runs in before 6am, though there were a few times I needed to do 30km or so and got up around 3am. I was getting no where near enough sleep and often working evenings from home as well.

I know this sounds crazy now but at the time all this made perfect sense to me. I got mad anytime anyone dared to suggest I might be doing too much because to me, I had a goal and I was just doing what I needed to do to reach it. The fact that I was harming myself in the process by exhausting myself and stretching beyond any reasonable limit didn’t even enter my head. In my mind I didn’t deserve any care or love so I was unable to show any to myself. I was unable to process how or why I would practice self care, though I knew it was a thing that other people claimed to do.

To me now, I can see the mix of autism, sensory issues, depression, BPD and deep self loathing that led to this pattern of behavior. I had a goal and a plan on how to achieve that goal and I was not able to be flexible enough to deviate from that plan or the routine I’d put in place. I’m also often single minded and can be focused on something (ie my ‘special interest’) to the extent that I can ignore almost everything else going on around me. Large volumes of physical exercise enabled me to punish myself for not being good enough, or understanding what was going on in my social life or workplace, or being able to cope with my sensory issues in the office. It also allowed me to fool myself that I was doing something to help my depression (because everyone knows regular exercise helps with depression, right?…) and simultaneously punish myself because if it wasn’t making the depression go away I wasn’t trying hard enough, pushing hard enough, going long enough.

When I had a breakdown in late 2013 my body stopped being able to run anymore, for no physical reason. I think my body was sick of my mind telling it to just keep going even though things were really bad, so it decided to stop me. My legs felt like lead and my head swam and I couldn’t breathe – and this is after years of half to full marathon distance training. I tried to stop running but I was addicted. It took a long time to break the habit of dreaming of the next run, the next race. I signed up for a number of races and then pulled out before the start when I realised that physically my body was refusing to train any more. I believe my mind was so burnt out that it shut everything down so it could recover.

Not long after finally breaking the running addiction the self harm started in earnest. Suddenly I had these feelings and I didn’t know what to do with them. I had used running as my way of burning energy and making these feelings go away, and punishing myself physically for things I felt I had done wrong. And now my go-to coping strategy was gone and I still didn’t want to feel the feelings.

I don’t actually remember the day I picked up the knife and cut myself. I do remember all three suicide attempts, and the first one which was right around that time also happens to be the most vivid in my mind. But I have no recollection of picking up the knife or why, or even which month that was.

I would like to think, 6 years later, that I have learnt enough to recognise when I’m in danger of harming myself and put my crisis strategies in place early enough. However, I’m still learning and at this stage I have not been able to go longer than 6 months without a self harm episode. I am aiming to start running again soon but with a mindful awareness of my tendency to take it to far, to push myself and punish myself. I want to use it to add to my life in a healthy way rather than as an unhealthy coping skill.

Take care out there.

Ka Kite

Executive dysfunction: Part 1

Part of my ASD diagnosis is problems with executive function. Executive function is kind of hard to define but basically it’s the cognitive processes that help us regulate, control and manage our thoughts and actions. It includes planning, working memory, attention, problem solving, verbal reasoning, inhibition, cognitive flexibility, initiation of actions and monitoring of actions. People with executive function problems often have some areas which are worse than others, and the level of competency can vary from day to day depending on sensory and cognitive load from other things.

Executive function encompasses nearly every area of our lives. Work, managing a household, socialising, parenting, self care. So having executive function problems translates into problems with the tasks of daily living.

For me executive function looks like: I know the dishes need to be done. I want to do them. I want the kitchen to be clean and I don’t mind doing the task but I have trouble with task initiation. When I manage to stop what ever else I am doing and walk into the kitchen I notice the bench has a whole lot of things that don’t belong in the kitchen and some things need to be put away. I pick up Miss G’s hair ties and bobby pins from the bench and walk to the bathroom. I remember I haven’t brushed my teeth so I do that. I look out the window and think about what we are doing today and realise I need to put sunscreen on. I open the cupboard and it’s messy. I sort a few things and can’t find the sunscreen. I go off to ask G where it is and she doesn’t know either. The two of us look for the sunscreen and she finds wet togs. I take them to the laundry and decide to put washing on. While I’m there I notice there’s cardboard that needs to go in the recycling. I take that outside and notice the grass needs mowing. I open the shed to check on the petrol for the mower and there’s some seeds we were going to put in pots. I take out the seed packets and go inside to talk to G about planting the seeds….

Several hours can go past like this and not only have I not done the dishes but I didn’t find the sunscreen (usually that means I’ll have forgotten about it and we’ll go out, only for me to remember I was looking for it and never found it and neither of us have any on), or actually get anything achieved. The bench is still messy, the bathroom cupboard is still messy, the lawns aren’t done, I didn’t check on the petrol etc etc

This is incredibly frustrating for me. I have to put so much effort into focusing on one task at a time and holding that one task upper most in my mind. Not only do I have to ignore all the other things I come across that need doing, but I either need to write them down which often creates a massive overwhelming list, or be content with them not being done. Because the minute I walk away the chances of me forgetting the next thing to do are about 85%. And putting all the things on a list makes me so overwhelmed that I have trouble planning which task to do first and I feel overloaded by how much needs to be done and how much effort that takes.

Executive dysfunction for me can also look like:
– lack of awareness of one’s surroundings (it can get cold/dark and I will not notice if I am focused on doing something)
– easily distracted
– easily bored
– starting a lot of projects but never finishing them
– difficulty stopping one task and starting another
– difficulty changing routine
– forgetting verbal instructions
– losing objects frequently
– needing things repeated frequently
– interrupting others
– impulsive behaviour
– difficulty controling emotions
– easily frustrated and overwhelmed
– difficulty with planning and problem solving
– disorganisation
– poor time management
– procrastination
(credit to Lilo the Austistic Queer for a series of tweets this list is based on)

Miss G (who also has an ASD diagnosis) has executive dysfunction as well. We have slightly different areas where we are better or worse but both of us are terrible with organisation and planning. With school stuff this might look like her leaving notices at school, or her forgetting to give me school notices, me forgetting to ask or check her bag, me receiving them and then losing them, or forgetting to fill them out, pay and or send them back with her, her forgetting to take the notice back, or give me any reminders. And that’s only school notices!

Even this morning’s post is a perfect example of my poor executive function skills. I got up early to put washing on and do housework before being picked up by a friend. I put the washing on and got in the shower. In the shower I started thinking about executive dysfunction and when I got out I looked for two facebook posts I’d seen previously about it. I sat down and started writing. The washing finished but I haven’t got up to hang it out and put the next lot in. Nor have I stopped to eat breakfast (and it’s now 2 hours since I got up). I have been hyper focusing on executive function and writing for over an hour. My friend will be here soon and I’m not ready, nor have I done any of the housework I planned to do. This is what happens to me on a regular basis.

My life is chaotic. Partly because I am a solo parent who works full time, who happens to have both a developmental diagnosis and two mental illnesses, with a child who has multiple diagnoses. Partly because I struggle with executive function as part of my ASD diagnosis which means I am often forgetful, disorganised, and struggle with daily tasks. And partly because I am one of those people who if something can go wrong it will happen to me. I just don’t seem to be able to keep a handle on everything that’s happening in my life. This makes the tasks of daily living a real challenge for me, and I live in a near constant state of overwhelm, meaning the next little thing that happens can push me into full ASD/BPD meltdown.

I have more to say on this topic but I’ve run out of coherent thought so until next time.

Ka Kite

Autism and context blindness

I was listening to a speaker session today as part of the Autism Explained Summit where Dr Peter Vermeulen and Paul Micallef discuss Autism and context blindness, and suddenly I had a lightbulb moment. Context is often what is missing for me, and causes so many misunderstandings in my life. And because I can’t read between the lines and pick up context I have a tendency to go too far back and give too much history when I’m trying to explain something. I’ve had people tell me they don’t want the entire history of what happened, just the bits that are relevant (more than once) and thought “but it’s all relevant!”.

Dr Vermeulen theorises that autism is a form of blindness – context blindness. That autistic brains either have reduced ability to use context spontaneously to give meaning to ambiguous and abstract stimuli, and/or that autistic brains see context but for some reason don’t or can’t use it.

Context is important as it helps us find the right meaning of a stimuli. In the speaker session he uses the example of a red traffic light which is usually thought of as an absolute. And normally red would mean stop. But what about when the green crossing man light turns red as you are crossing the road? In that context red means hurry up and finish crossing the road. Or what if you are with someone who starts crying? Without context you would be unable to tell if that person is crying from laughter, is sad, is having an allergic reaction to something or has been cutting onions.

One of the other things that was discussed was context blindness in relation to late diagnosed adults. Dr Vermeulen talked about how some autistic people study neurotypicals and human behaviour on an intellectual level and make scripts for and then apply that script. Until he said this I didn’t realise that was a neurodiverse thing I do all the time. I read widely on all sorts of subjects and one thing I am fascinated by is psychology and human behaviour. I listen to a lot of podcasts about people’s real life experiences and I watch all sorts of documentaries that focus on people – be that historical figures or people with disabilities or who have done extraordinary things or who are in all sorts of situations. If I know I’m going to face a situation I’m not familiar with I’ll research and read all about other people’s experiences. If I have to make a phone call for something I haven’t done before I will actually write a physical script. For work phone calls I have a standard introduction piece I say before whatever I’ve scripted for the call. I actually have what I need to say when I pick up the phone at work on a post-it note next to the phone, despite having been there for more than a year. I’ve also studied how to make small talk and network with people, and earlier in my career I wrote down lines I could say in the lift and the lunchroom to people I worked with.

But where this strategy comes apart is when I’m not in control. If something happens and I have to be flexible and do something or go somewhere and I haven’t had a chance to research and think and script then I tend to panic and be tongue tied and I often misunderstand what is being said or what is expected of me.

One of the other things that has puzzled me this year is my result on the facial expression recognition test which I took as part of my autism diagnostic testing. I have studied faces and emotions – like I said above I have done lots of reading and tried to teach myself social skills, body language and what different expressions mean. I knew I was awkward in conversation and I wanted to improve that and be able to fit in. I’m also an artist who almost exclusively draws and paints the human face because I feel drawn to it so strongly. But my almost perfect result on that test still took me by surprise. This test is considered an important marker for autism. And all of my other tests were pointing very definitely to an autism diagnosis, except this one. I also couldn’t work out how I can recognise expression in photos but still struggle so much with working out what someone is feeling in real life.

What I’ve realised since I listened to this talk is that what I can do is sit with photos in front of me and apply my intellect and learning to figure out what the expression is or what it means. What I have trouble with is applying that learning to the context and combining that with body language and the words/conversation and then deducing meaning. I also find it uncomfortable to make eye contact and though I’ve trained myself to get better at it that takes a lot of mental effort as I must remind myself to look at the person, then look away at appropriate intervals (I’ve learnt staring is just as bad as no eye contact!). In person I often make a conscious effort to try and read body language and deduce it’s meaning and in client meetings I will sometimes deliberately mirror the other person to try and create rapport as I know verbally I can be awkward. There is a lot of mental effort going on when I am meeting with and talking to someone else so no wonder it’s easy to miss or misunderstand facial expressions and what they might mean in that specific situation. Another example of how testing is an imperfect science.

One of the things that is mentioned a lot for autistic children is the important of learning social skills. I have attended training and had support services help me develop my child’s social skills. And I have learnt a lot from all this training as well as hopefully passing a lot on to Miss G. But if you asked me what an appropriate gift is if you stay at someone’s house, or how long you should stay if you are invited for coffee or who provides the food if you are invited to someone’s house for lunch then I’d have no idea. Because almost none of what I have learnt includes context and I’m unable to deduce it for myself. I would normally google these questions but if I was caught off guard or forgot that I didn’t know the appropriate behavior until I was in the situation then I would more than likely be headed for overload or meltdown.

Imagine a world where many times a day you don’t understand what people are saying to you (as you can’t pick up context) and you often end up in situations where you are unsure of what is expected of you. You script basic conversations but anything you haven’t anticipated leaves you scrambling to follow the conversation and adapt to make yourself understood. Where at best people think you are aloof or strange (lack of eye contact and small talk, odd out of context behavior) and at worst you annoy and upset people and are interpreted as rude. Add in sensory processing disorder and auditory processing issues as further barriers to following, understanding, interpreting and communicating. This is my reality as a “high-functioning” autistic and it can be exhausting.

It feels like I still have a lot to explore on this topic. I haven’t even covered how context blindness creates anxiety, or what I was going to write about today on ASD and dealing with uncertainty. I also wonder how much sensory processing issues and sensory overload contribute to context blindness and maybe block the subconscious from interpreting stimuli. But enough for tonight.

ngā mihi

How I cope

People who know me and my diagnoses sometimes comment on how well I seem to cope. Or compare me to some other person who is struggling and say how good I must be or how bad the other person is because I look like I am doing so well. If I have chosen to disclose one or all of my diagnoses to people who know me less well I often hear how you’d never be able to tell how much I struggle or how hard I find life or that I have even one mental illness never mind two and autism. That you’d never know that I’m on meds to stabilise my mood and for my depression and I see a psychologist once a week and have done for years.

I work full time. I am a solo parent to my autistic daughter who also has several other diagnoses. I create and exercise a bit and socialise a wee bit. I volunteer where I can at the school and take my daughter to activities. I generally mostly keep up with my life, pay the bills and do the housework and spend time with loved ones. This is what people see. What they don’t see is what it takes to keep things going.

One thing people might be surprised by is that almost every day after work, I pick up my daughter, go home and put on my cosiest most comfortable clothes and get into bed. I usually stay there for anywhere between half an hour and several hours before I can continue with the evening.

Having both a neurological difference like ASD and a severe mental illness like BPD means that getting through each day can be exhausting for me. All day I have coped with sensory input that is often well beyond my comfort zone. I’ve had to be flexible to changes in plans and fit in with the way neurotypicals like to do things. I’ve tried to watch other people’s body language and work out what they are saying while not saying it. I’ve remembered social rules and made the effort to keep my “normal mask” well in place. Often I’ve needed to call upon some or all of my strategies to cope with my emotions. But the effort of doing these things and the toll they take on me is significant. When you add on a high needs child and the fact that I’m a solo parent it’s understandable why I feel the amount of overwhelm I do on a daily basis.

So I do what I need to do to restore myself after the work day. In the winter that means wrapping up in my coral fleece blankets and laying on my bed. Sometimes in silence just looking out the window, sometimes listening to music or a podcast. Usually I have a fidget or a piece of fleece that I rub on my face.In summer I’m usually face down on my bed (extra pressure on the front of my body – mimics the feeling of being wrapped) with the fan blowing on me. The sensory soothing helps me cope with each day.

I worry that my daughter is missing out, on time with me and time being supervised by me (she doesn’t get a lot of homework done). I worry that we don’t eat healthily enough because I am in bed instead of cooking healthy dinners. I worry about whether this is a sustainable way of coping with life, and whether this indicates I should be trying to live a life that doesn’t take such a heavy toll on me.

I am trying to take life one day at a time and just do what gets me through. But the old fear that I am not trying hard enough, doing well enough, is still nibbling at the edges. I feel like things are so finely balanced it only takes one extra thing to tip me into overwhelm. This is where depression can sometimes get a foothold too. If it’s been a bad week and I’ve needed a lot of recovery time depression tells me how hopeless I am. How this coping strategy is really laziness and letting my daughter down. Depression tells me I am not trying hard enough and that I should be able to get through the day without retreating for downtime. I need to keep reminding myself that depression is not my friend and it tells me lies. It has its own agenda. Sometimes life is minute by minute what gets us through and that is good enough.

Stay safe and warm friends. Ka Kite