A day in steps
Updated: Jan 22, 2019
*Trigger Warning* read with caution and care. Mention of suicide, self harm and eating disorder.
I've been thinking recently that many wouldn't necessarily understand what an actual day is like for someone like myself. Someone who has to face and manage illness and overcome challenges related to disability. So I thought it would be interesting to put pen to paper and have a go at representing a day in my life. Of course, it's worth me reminding you that my experience may not represent the experience of everyone with mental illness and/or autism. But I hope that some of you find comfort in reading something in which you also struggle with, and that this in some way enhances your understanding.
I'm awake, I'm tired. My rule however is that I must stay in bed until 6:15am, therefore I'm going to try and rest for the last hour. I have this rule for a perfectly good reason; sleep hygiene.
I have always had sleep trouble, from birth and probably until death. The zombification of sleep deprivation is all too familiar. Hence, sleep hygiene is something I must dedicate time and effort to maintaining. My rules are as follows; 1) Bed time is between 9pm and 10pm, wake up/get up time is between 6:15am and 7:30am, 2) No backlit screens after 9pm, 3) No rich/heavy foods after 9pm, 4) No alcohol, 5) In the event of waking during the night, try 30 minutes of reading, yoga or muted TV before trying to fall back to sleep, 6) No napping in the daytime, 7) In the event of 2 consecutive sleepless nights, take prescription medication.
It sounds a bit military, but if I don't follow these rules I can guarantee I will not sleep, and if I don't sleep I will be barrelling towards a mental health crisis at top speed.
I managed to lightly sleep and dreamt I was drowning - an all to common anxiety dream. I can get up and get coffee, but I can already feel the heavy, numbing sensation of depression wrapping itself around my body. I can feel the dread of having to survive the day pulsating through my mind. I wonder if its normal to feel such despair about the day ahead, it certainly is normal for me.
Never the less, I do as I always do, convince myself to at least get up and get a cup of coffee.
As I prepare the coffee machine my dad starts to unpack the dishwasher. The clinging and clanking of plates and cutlery in a chaotic and unpredictable manner rattles my head and sends my heart rate upwards. I can feel the noise rattling my teeth, sending my mind and body into recoil. The smell of the dishwasher doesn't help matters either. I want to scream but I can't create any kind of outwardly expression of my internal reaction to the dishwasher being unloaded. Finally, its over and I have a coffee in hand.
At that moment, the voices I hear and Anna start to rattle on about breakfast. Anna is a hallucination, I know she's not real. She has followed me around since I was 15 years old, she is a normal part of my life. I wouldn't really know what it's like not to have her follow me around and critique pretty much everything I do. She's a bit of a bitch to be honest. However she doesn't go away, no matter how much I scream at her, or how much medication I take, therefore, I have learnt to live with her.
But this morning she has decided to jump on the 'depression bandwagon' and is muttering about how I don't deserve breakfast. Although I'm used to it, it still hurts a little.
Fighting through the onslaught of eating disorder thoughts, the self-critique triggered by Anna's comments, and complete lack of motivation due to the depression being particularly bad today, I make myself breakfast. I have the meal plan written by my dietitian memorised, and make myself the same breakfast I have every morning. Without realising it I have started to add up the calories in the food, out of habit I suppose. 8 years of counting calories has left me with a particularly good memory of the number of calories in various food items. These things don't just go away over night.
I have reached a point where I can now follow a routine around food. I follow my meal plan, eat at the same times each day, and remind myself that food is medicine. This adherence to a routine helps to calm my anxiety, fear of uncertainty and quell the desire to restrict the amount of food I eat. I am always hypervigilant though, I am very aware how manipulative anorexia can be and how quickly it can take hold.
Every morning I watch telly whilst eating my breakfast. It helps to keep my mind occupied away from calories or nutritional values. I watch the same things over and over again, the main ones being American sitcoms Friends, Scrubs, Brooklyn99, The big bang theory and How I met your mother. I can and do watch them start to finish over and over.
I need to convince myself to take care of my personal hygiene. It's particularly difficult during these times when the depression makes me feel like I'm moving around in a vat of thick black tar. My initial thought being, "what's the point?".
When the depression hasn't got such a firm grip I can of course see and understand the point of showering/brushing my teeth/washing my face, but it's not so simple if your motivation, concentration and memory have seemingly packed up and left.
Never the less, I do as I always do, convince myself to attend to my personal hygiene. I get as far as brushing my teeth and washing my face; having a shower is a step too far.
I need more caffeine. A large cup of tea should suffice. Hopefully, it will assist me in getting some work done. I don't hold up much hope. I keep a running to-do list on my phone to help me remember what needs to be done, without this I wouldn't have a hope in hell of remembering anything at all.
I can get through a couple of simple emails but it takes me a while. I'm having to read and reread each email several times before my brain catches on. It then takes me a while to write my replies, forming eligible sentences which convey my overall message is rather difficult when you can't remember simple words, and have to look up words to check their not your own made up words.
I'm purposefully ignoring the fact that I have about 6 different forms to fill in for various reasons. I can already feel my limited energy and concentration levels depleting. The increasing number of emails which need to be read and replied to is starting to make my head spin. Immediately this triggers a very common train of thought for me;
"How am I ever going to be financially independent if I cant even manage this?!"
"I'm never going to be able to cope with a full-time job, and will never be able to earn enough."
"I'm never going to be able to afford my own home, never be able to be independent, never going to be able to feel fulfilled. I wont ever be able to afford any of my dreams."
"I'm going to be a drain to those around me and society, I don't want that. I don't want a life like that."
And from there it spirals shockingly quickly to suicidal thoughts.
I had to give up on work for now. My executive functioning, already impaired due to being autistic, gets ten times worse when depression and anxiety start playing football with my brain. I had to retreat to my bedroom and get out my DBT (dialectical behaviour therapy) file and crisis kit to get my suicidal thoughts back under control. I switch on the telly and watch the next episode of friends, the current American sitcom I am working my way through for the 20th time. The predictability and familiar script helps me to feel calmer. As I watch I get my colouring book out as an additional distraction.
Without realising, I have skin picked on my face and fingers. This is a normal thing for me to do when I get overwhelmed or bored. Often, I don't even realise I'm doing it. But it means my face is now red, blotchy and covered in small scabs. I splash my face with cold water to try and reduce the redness.
It's time for my mid-morning snack according to my meal plan. I drag myself downstairs a get my usual snack from my food box and make a cup of coffee. Whilst I wait for the coffee machine to finish, I stroke the cat whose weaving around my legs. My animals always seem to manage to calm my mind.
Time feels like its dragging, I feel low and lacking in energy. I know that doing nothing will only lead to increasingly strong suicidal thoughts and ideation, so I keep myself busy doing simple tasks and activities in attempt to draw my attention away from the despairing, emptiness and hopelessness.
Food, again. 6 times a day I go through the same battle in my head. I wonder if it's worth it, but my dietitian's voice rings in my head;
"Food is your medicine!"
And so, I do as a I always do, convince myself to make and eat my lunch. My cat is curled up asleep next to me, somehow it helps.
It's time I try work again. My to do list is too long, and getting longer, I cant afford to not get any work done. I know in the back of my mind that forcing myself to do more work when I'm already fragile is not a good idea, but the anxiety from work pressures feels more urgent.
Within half an hour I can already feel myself spiralling.
Self harm and suicide are in my mind everyday. I don't like admitting it, but its true. Some days are better than others, I'm fairly good at using the skills I've learnt in therapy to avoid acting on these thoughts. But, this takes a lot of time and energy, often I have no time or energy for anything else.
I get my crisis kit out and work through various distractions, including watching a film, doing some yoga, colouring, looking through photo albums and more. Some may think it sounds like a 'nice relaxing day' doing these activities, but for me its about staying alive - there's nothing relaxing about it.
I'm cooking dinner for the family, a helpful source of distraction. A little truth I learned a couple of years ago is keeping me going; singing Disney songs, musical songs or ABBA is surprisingly uplifting.
I plonk myself on the sofa, but depression doesn't let up, Anna doesn't stop her incessant negative comments, anxiety doesn't stop gnawing at my heart walls. I'm utterly exhausted, devoid of energy, and feeling a little sick from the thought that I never got any work done. The last couple of hours of days like these feel like I'm limping to a finish line I can never reach. I know in the back of my mind I will have to wake up tomorrow and fight the same battles again.
Yet, in all of this pain, I cannot create an outwardly expression of it. No one would know from looking at me, or talking to me. I have tried to express to other people but my brain and body don't seem to be able to cooperate. Years of training my self to mask and camouflage my autism also means I inadvertently and involuntarily mask and camouflage my mental illness. I'm trapped in my own head.
Finally I can crawl back into bed, and feel relieved knowing I will hopefully be unconscious for the next few hours at least. My last thoughts being of how grateful I am that at least I didn't have to leave the house today.
For me, some days are like this, and some days I'm okay and don't need to use so much energy and time just trying to survive. To be honest, it can all be fairly mundane which seems counterintuitive when discussing fighting for survival. I wish I could go out and be more 'productive' and basically be able to be a 'proper' adult, but fighting to stay alive is not an easy task. But, its about taking each step, taking each small battle as it comes...even if its the same battle you've had over and over. Ultimately, the only step that matters is the next one. That's how I try to think about it, anyway.