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 items to my very long list of issues, 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 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.

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

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

My marriage & divorce (or how my quest for understanding began)

The father of my daughter is a man I met when I was 17 and married when I was 22. At 26 I had my daughter, by 27 I was separated, by 29 divorced. I’ve had one 9 month relationship since then, and one undefinable disaster (I’m now 36). It’s safe to say relationships are not my forte.

When I met the father of my daughter (B), I was 17 and just coming out of a long illness. I’d had glandular fever which had turned into Chronic Fatigue Syndrome (CFS/ME) and I had been very sick for nearly a year. That’s another story, but safe to say that I wasn’t in the best place physically or mentally. I felt abandoned by many of my friends, whose lives had continued on without me, and misunderstood and shafted by life. I had taken on an afterschool/holiday job but found that I just couldn’t go to school and work, it was too much for me. My “recovery” from CFS was still tentative and, unbeknownst to me at the time, working in a supermarket was probably the worst place I could have chosen due to my multiple sensory processing difficulties.

I had gotten to know of B who worked in the department next to mine, but never really spoken to him. On the day I handed in my notice he asked me for my number and I think we texted each other (it was February 2000 but I did have a cellphone 🙂 ) and organised a date to the movies.

I don’t remember thinking that much of him. He talked a lot about himself and the music he liked and he played his guitar for me and I remember thinking I was bored. But I went on a second date with him and during that date he said he could see himself marrying me. All my alarm bells went off – this was our second date, I was 17 (he was 23), I didn’t even know whether I liked him. But I was fascinated – what could he see in me that I couldn’t see? Why did he like me when no one else seemed to?

Needless to say I kept going out with him. There’s something intoxicating about someone who repeatedly professes their love for you, especially when you don’t feel even particularly liked by anyone else. I also wanted to lose my virginity and get that hurdle out of the way, and I was kinda interested in the whole experience in being someone’s girlfriend. I have clear memories of thinking that having a relationship was a normal teenage experience and that’s what I wanted for myself.

That’s not to say I didn’t fall in love with him. I became almost obsessively in love with him. I wanted to be with him all the time, and I changed what I liked and who I was to suit who he was. He didn’t ask me to, or demand that of me, and I’m not sure that I was consciously doing it. But after a lifetime of masking I was an expert at remaking myself to fit what I thought other people would like. So I made changes to the style of music I listened to, the clothes I wore and the things I was interested in.

I’m not going to go in to the ups and downs of our relationship and subsequent marriage here now, but suffice to say that there were a lot of them. Neither of us were good at communicating, and there were faults on both sides. I didn’t know myself or understand even my own behavior, never mind his. I felt trapped and essentially I married him despite the warning signs because I felt I had no where else to go, and no one to turn to. And I was terrified of losing him, the only person who stuck around, even if he treated me badly.

When we split up I realized that I didn’t know who I was. I didn’t know what type of music I liked or how I would want to dress. I didn’t like much of our furniture and I hated certain pictures, linens and crockery we had. I guess everyone whose been through a divorce will understand what its like when you suddenly end up with half the stuff you used to have, and almost all of it was a compromise with the other person and not to your taste at all. But I didn’t even know what my taste was. Suddenly I was 27, spat out the other end of a 10 year relationship and I had no idea what I liked or who I was.

And so began my quest to understand myself.

Until next time. Ka Kite.

Gender confusion

As I have mentioned on previous posts, I am currently going through the diagnostic process to confirm my ASD diagnosis. This involves a lot of examining who I am, how I respond to certain things, my thinking patterns, my sensory sensitivities and developmental history among other things. One of the questionnaires I have filled out as part of the diagnostic process is the GQ-ASC which is the girls questionnaire for autism spectrum conditions and has two slightly different variations – one for Girls 5-12 years and one for Girls 13-19 years. I completed both, and my parents completed both, and all four were given back to my psychologist.

The GQ-ASC is a new tool and was only published in February 2018. It’s still in pilot stage, but my psychologist wanted to use it in conjunction with the other screening tools to provide further information for my overall assessment. There’s some info about it and a link to the questionnaires here. It was an interesting exercise for me to fill it out, and it really made me think about what I was like as a child and a teenager. I often think I have very little memory of my childhood but what I’ve recently discovered is that I have little snapshots of memory – sometimes just thoughts or feelings, or a flash of a situation. These are often out of context. I may remember how I felt or what I was worried about but not why, or what else was happening (outside of what was in my head) at the time.

There were questions on whether you preferred to play with girls or boy’s toys as a child, and whether you preferred to play with girls or boys. I didn’t like girls toys or clothes, although I did like soft toys (stuffed animals/plush toys) and I had quite a few of them. I much preferred playing with cars, though outside activities were more my thing as far as I can remember – sport, tag, playground equipment, skateboards/rollerblades, swimming, climbing trees and riding bikes. If I was indoors I was often reading a book. But both my best friends were boys and I wasn’t interested in most of the traditional girls things, like dancing and dolls.

I do distinctly remember thinking about wanting to be a boy though, and questioning whether I would fit in better if I was a boy and whether people would like me better. I preferred boys clothes and many of my clothes, especially from mid childhood to mid/late teens) were actually purchased from a menswear shop. I wore sweat pants, jeans or shorts, a t-shirt and a sweat shirt or hoodie. No makeup, no nail polish, no jewelry, except for a watch. I did get my ears pierced at age 11 but the only time I’ve ever changed my earrings is when one fell out and I was forced to buy new ones (the same as the ones I already had!).

I don’t like makeup, as I can often smell it and the smell drives me crazy and I can feel it sitting on my skin. Lipstick is awful as I feel like I am super tuned in to the feeling of it being on my lips. I have the same problem with nail polish, though in the last year I have discovered that I can stand one layer of polish on my fingers for a few days if I have to (I have a 10 year old daughter who loves to do nails).

From about the age of 8 I thought about being a boy. I remember wishing to be a boy but I wasn’t aware of trans people at that stage so I didn’t think it would ever happen. I read about Joan of Arc and people like her, wearing men’s clothes and doing things like leading men into battle, and I wanted to be like her. At other times though I was quite happy to be a girl. I never really developed boobs so that wasn’t an issue for me, and I was mostly allowed to wear the clothes I wanted to wear and play with who I wanted to and do what I wanted to, so it wasn’t a day to day issue. My main problem was having to wear a skirt as school uniform, though I was lucky enough to be able to wear pants in winter for a lot of my school career. I remember feeling fortunate that I had not been born 50 or more years earlier, when my preferences would have been more of an issue.

When I was 11 and in my first year of intermediate I developed my first crush on a girl. I don’t think I was really aware of lesbians at that stage (this being the early 90’s) and I was really confused because I was still sometimes thinking I wanted to be a boy. I felt sick to my stomach whenever I saw her because I was so confused about how I felt, but I still kept seeking her out. She didn’t know I existed though and I don’t think I ever introduced myself. The following year I had moved on to a boy, not that I ever let him know about that either!

Over the years I have had crushes on both girls and boys, but the girl ones tend to make me feel guilty and sick to my stomach. I don’t know why as I wasn’t exposed to prejudices against gay people as I grew up, and one of the boys I was best friends with as a child is gay. I don’t have a problem with it. I think the sick feeling is confusion and uncertainty about who I am rather than feeling like there is something wrong with me.

One of the only times I have ever been certain about my ‘womaness’ is when I became a mother. The experience of being pregnant taught me that I could feel comfortable in being a woman and still keep the parts of me that dress in shorts and t-shirts, that don’t wear makeup or shop or drink wine or want to wear high heels. It’s like being a mother proved to me that I could do the ultimate ‘womanly’ thing and create life, even though I have failed to conform to all the other sterotypes of what a woman is.

In the last few years I have done a lot of reading about gender and sexuality, and how these things seem to exist on a continuum, and especially sexuality seems to be influenced by hormones released by the mother when she is pregnant. I think I have finally got to a place where I am happy to be the ‘tom-boy’ girl, rather than wanting to be an actual boy/man. And I can accept that what I feel about my gender is separate from whatever my sexuality might be. And that I don’t have to label my sexuality or make a decision about it. Its enough to just accept that I don’t know at this stage and that may or may not change during my lifetime. My aim is just to be open to whatever happens rather than trying to analyse it. There’s an article about this here which explains better than I could why sexual fluidity is different to being bisexual and what it means. Some food for thought.

Ka Kite

Some days just suck

Today was not a good day. The prelude to today really started on Friday when I went to pick up my 10 year old (G) from afterschool care. G is prone to accidents as she is hyper-mobile, has low tone and has a problem with proprioception. She had apparently fallen from a tree on to her outstretched wrist, and there was some debate as to whether it was broken. I was supposed to be taking her to her swimming lesson, and after a long week seconded in a different office, I couldn’t handle the change in plans so decided to just take her to swimming and deal with the problem there.

Driving to swimming, about 5 minutes down the road, there was a bang. The lights all flashed up on the dashboard and the power steering went out. I thought I must have run over a piece of plastic or something but checked the rear vision mirror and there was nothing. I managed to steer the car to the side of the road and called the AA roadside service, who ordered a tow truck for me.

Meanwhile G’s wrist looks to be just sprained (again), so that’s something I guess.

Fast forward to this morning, and I wake up with period pain and a sore back and jaw. I’m already not feeling great, then I get a call from my mechanic at 7.30am. He had looked at the car over the weekend for me and it wasn’t great news. Whoever did the cam belt last put a washer back in the wrong place, it had stripped the belt and the belt had snapped, causing massive engine damage. He said the car would need a new motor, water pump, valves, cam belt etc. He said he’d see if he could find a second hand engine and give me a quote.

This put me in a tail spin as I knew it was going to be expensive and I don’t have anything in reserve. Last year was one of those years I’m still recovering from. My other car had needed expensive repairs, then I set up my business and there were quite a few bills for that. Then I had a disaster with one of my contracts and ended up doing about 60 hours of work I didn’t get paid for. I took a massive pay cut when I took the job I started in October – long story, but basically there is potential for growth in the role so I took the cut in the hopes increased role & responsibility would gradually lead to increased salary. Then I had an accident and the costs associated with that, and have been on ACC at 80% of my massively reduced wages. Oh and I spent what savings I had left in topping up the trade in when I brought this current vehicle. So I have no capacity to pay for repairs or buy a new vehicle. And I currently have a leaking caravan as well, which is a whole other story.

I spent the day feeling teary and trying not to cry. My back is still sore and I’m still seconded to another office so I was feeling out of sorts. Then my mechanic rang and said he’d managed to source a second hand engine, though there was only one in the country (mine is a V6 and my car is 16 years old so not as many of them around). However the bad news was that the car was going to cost approximately $4,600 to fix. I had to take lots of deep breaths when he said that. I can’t find that kind of money and my financial situation is such that I already have 2 credit cards (1 is maxed out) and a small personal loan. And nothing to secure any loan against anyway. And I’m still on ACC so have limited earning capacity.

I then spent quite a bit more time at the office trying not to howl with what seems like the unfairness of it all. My brain automatically goes straight for “the universe is against me” and I feel that urge to self harm. When that comes up I try not to push it away. I try to tell myself its understandable I’d feel like hurting myself to get some relief, that the situation looks bad and of course my brain is going to offer it’s old habit to create some solace from that pain. So I can feel the endorphins and not the pain, so I can distract myself from the terrible thoughts going around in my head. Thoughts like “I never make good decisions” and “I deserve this” and “what’s the point, everything turns out shit”.

I am noticing my feelings and how they are effecting me physically, and trying to surf the wave of pain. While simultaneously trying not to cry in an open plan office full of about 20 other people. This is not easy. I felt very alone.

So later I pick G up from afterschool care, and she tells me she has found a bug in her hair. This is not good as she has been complaining of having an itchy head and I have been checking her every second day for nits (head lice). Sure enough, I look and she is crawling with lice. So then I have to come home and strip both beds (she’d been in mine over the weekend), wash all the towels and sheets etc, and then treat us both for head lice. Turns out she’d shared the love with me so I had them too, though mine were only tiny. 3 hours later I’d done 3 loads of washing, two lots of treatment shampoo (me and her), nit combing, blow dried and straightened both our hair. Not a great end to a shit day.

I still want to hurt myself, but tonight reflecting I can recognise the improvement in my self harming urges. Some of them are not as strong, and some are not as ceaseless or long as they once were. I am able to use other things to keep myself from fulfilling the urge. I wouldn’t trust myself to pick up a craft knife tonight (I have them around for sharpening pastel pencils) but I won’t seek one out, and although I am thinking about razor blades I have no motivation to go and find some pliers to pull apart my razor. I am trying to chose to focus on the progress I’ve made, and the difference between where I would be if this happened 2 years ago vs it happening now. It’s not easy and it feels tenuous and fragile in the face of so much turmoil, but it’s so much better than it once was.

When I feel like the urge to self harm is starting to over power me I try to think of my daughter and use the love I feel for her as my anchor. I don’t want to self harm partly because I don’t want my daughter to see that I have cut myself. She is so much more aware now, and she knows that’s where my scars have come from. I want her to feel secure and teach her to deal with her emotions in a much healthier way than I do. Part of teaching her that is to model the behavior for her. I may not be able to muster desire to improve for myself, but I want to try to for her. She is my reason.

Here’s hoping tomorrow is a better day.

Ka Kite