I’m in a dream- like state today. Last night I was still awake at 3 am, pleading with my mind to quiet itself and let me doze off. The night before I was begging my migraine to respond to the ibuprofen and paracetamol I had given it. The hours passed by so very slowly, and I grew tired of the music that played over and over in my head while my fingers played the tune on my imaginary keyboard. “Stop. Okay, imagine a beautiful field with yellow and mauve flowers covering it...you’re lying there, feel the sun on your body and let your muscles release”......Part way through this relaxation exercise, there it was again: that piece of music I had listened to over a hundred times already since hopping into bed. Please! I’m just asking for a vacant mind, why is this not possible? My fingers are busy playing the tune again without me realising, and I feel myself become frustrated. I stop them, and enjoy a second’s peace. Barely a thought hangs in my mind, and then in the blurry background I hear the strains of the music....and a conversation I’m weary of re-visiting. I’m infuriated. How many hours do I have to play this game of stopping the ceaseless noise inside me, to have it automatically restart seconds later? I wish I had some kind of control over my mind so that I could stop losing this battle. Sprinkled among these thoughts are fears for the following day – how will I manage on so little sleep? I tell myself that rest is good for me and yet I barely believe the words I have just pronounced.
I could go some help right now...
This mental battle is one of the reasons I decided to go on anti-depressants...alongside panic attacks, depression and generally feeling overwhelmed. It was only in the past 6 months that I started to open myself up to the possibility of going on medication. Before, I thought I could manage the mental side of life with counseling alone, learning strategies to deal with myself – my post illness self. I feel that I was fresh and optimistic about how much I could improve without needing drugs. I didn’t want drugs. I didn’t want to be dependent on a medication to alter the chemicals in my brain for me to be OK. I saw that as a cop out.
Something changed, gradually. I became wearied by my mind and the toll it was having on me. I desire relief, even just a small reprieve from the fears and obsessive thoughts. Some peace, to simplify my life, to give me a chance at coping. Before I thought that learning a deep breathing technique for when I started hyperventilating was help enough, but now I am dreaming of not hyperventilating in the first place...not crying so often....even having a still mind from time to time. I know the meds won’t eliminate these things, but just a reduction in intensity would be good enough for me, especially as I work out the core issues with my psych.
I have started a new drug because the last one had side effects I wasn’t so keen on. The following warning was on the information sheet:
Persons taking this medication may be more likely to think about killing themselves or actually trying to do so, especially when first started or the dose is changed.
Admittedly it was not what I expected to see on an anti-depressant. Surely it was supposed to do the opposite?! But fear not, I haven’t experienced any such thoughts. I’m just listening to Bach’s Brandenburg Concerto’s and drinking English breakfast tea – and I find it hard to believe I could feel suicidal while so pleasantly occupied. The fact that even that warning and all the possible side effects didn’t put me off show me that I really am quite desperate for some help. And so now I must just wait and pray that this one is a good match for me. I hope we’ll do very well together!
I used to say that, whenever such topics arose in conversation. We had a pool in the backyard for the scorching days, we were free to do as we liked for weeks on end, my birthday and Christmas fell during this period, water melon was regularly served, dresses and shorts could be worn....and I could live a goose-bump, chilblain free life. Nice.
Now I shudder when I hear people say how much they love the hot weather. I look at them blankly. Usually I am capable of making at least some small talk, and surely ‘the weather’ is the most elementary of topics - but their statement fills me with strong emotions. I told the lady in the shop yesterday that I didn’t like hot weather, and she gave me an odd look because she can’t think of anything better. Another lady asked me if I was going to beach. Not the beach, but feet in a bucket at home, if that counts. I went on Facebook, and saw that an acquaintance had written, “37 degrees today, bring it on summer.” And that status update had been liked by numerous personages. But all I can think is, what is to love about lying in a dark room beneath a fan?
I used to practice my 3 hour quota on a 38 degree day, taking dips in the pool between sessions...before CFS moved in. Today, I picked up my flute, determined to play. My flute felt a lot heaver than pure silver – I blew one wispy low G, felt my head sway and leaned back on the couch. I put it away in its case, marked with my sweaty finger prints. Still light headed, I get up thinking that I should just clear some things away in the kitchen. I wonder what my feet have been filled with. They are bulging, veins exploding – in shades of alien green, purple, and cherry red. I walk slowly towards the kitchen (a very short stroll in a one bedroom flat), as though I am 3x my weight and feel sorry for the contestants on Biggest Loser. Once there, I feel like I need to rest – my body is lethargic, swaying and weak. I want to lie on the cold tiles and cry. Sob, because I am feeling so ill, and there is no relief. There is no air conditioner. We can’t drive anywhere because the car is always 10 degrees hotter than the house. There is no ice cream – sugar gives me an enflamed throat. There is nothing to fill the hours with, because I’m too sick to stick at anything for more than a few minutes. I watch some Anne of Green Gables, but have to stop because my headache is blurring up my vision. I check the weather, for the 11th time today. The cool change has not been brought forward, and tomorrow is forecast to be 37 degrees. It will be precisely 6 hours until the sun sets and there comes some minor relief in temperature. I could fit in the fridge if we took the shelves out. I could have a cold bath if I could be bothered running it. But I’ve lost my motivation, and I’m too tired to search for it.
I wish I’d kept my eye on the weather forecast this week. I had no idea we were headed for a hot spell. I had planned to go to an MSO concert with Ben, practice my flute and clean the house. It’s so odd that the weather can cause me to go from reasonably well, to reasonably ill within a few hours – and completely curtail my plans. I think it shakes me up because it comes down to the core issue I struggle with:
I’m not in control.
I don’t get to decide the weather for Melbourne. I don’t even get to vote for when the hot days fall. It’s totally out of my hands.
So it’s really the perfect opportunity for me to practice letting go of my plans and making the most of what has actually happened. Three years of illness...you would imagine that I would have learnt to let go of my agenda, and embrace the life I do have. But I seem to need a regular crash course. I forget so quickly. So here we go for the hundredth time: today has not gone to plan, but it’s a day so I’m going to value it.
We like ‘before and afters’. We like it when the after is better than the before. Like when that pimply, unruly maned girl is transformed into a sleek haired, white teethed, glossy lipped wonder. “That’s better”, we sigh as we gladly rest our eyes on the appealing yet unnatural sigh before us. Uniqueness has been whisked away, and exchanged for a tantalising package of ‘perfect’. Ahhh.
Here are ten commandments I held to, before.
1. Thou shalt be perfect or at least try to be.
2. Thou shalt try to be all things to all people.
3. Thou shalt not leave things undone that ought to be done.
4. Thou shalt do as much as possible.
5. Thou shalt always say "YES".
6. Thou shalt not schedule time for thyself as this is lazy.
7. Thou shalt always strive to work harder at school and flute.
8. Thou shalt be vivacious, tidy, elegant and attractive at all times.
9. Thou shalt feel guilty if standards are lowered
10. Thou shalt not be weak in anyway
I realise now that I tried to follow these commandments to the letter for a few too many years. I am quite attracted to them. They seem to promise wonderful things. I see elegant people, I see helpful people, I see hard workers and want to be all those things, all the time, no exceptions. Perfectionism. Workaholism. I slip into these commands with ease, and ignore their folly and impracticality. But I have had to snip them up and chuck them in the bin because they are no match for me physically or emotionally. It’s not a healthy relationship, and I’ve cut ties...but the attraction remains, and I have to fight it every single day.
I found the following on a chronic fatigue syndrome site and it was love at first sight. I suggest printing off the following rules and blu-tacking them up in the toilet so that you read them a few times each day:
Ten Commandments For Reducing Stress
1. Thou shalt not be perfect or try to be.
2. Thou shalt not try to be all things to all people.
3. Thou shalt leave things undone that ought to be done.
4. Thou shalt not spread thyself too thin.
5. Thou shalt learn to say "NO".
6. Thou shalt schedule time for thyself, and for thy supporting network.
7. Thou shalt switch off and do nothing regularly.
8. Thou shalt be boring, untidy, inelegant and unattractive at times.
9. Thou shalt not even feel guilty.
10. Thou shalt not be thine own worst enemy, but thine own best friend.
This doesn’t rule out working hard, being dependable, striving towards something....it just enforces a rational, realistic and healthy approach to life.
I have not got these commandments sussed. Yet. I still think that having a piece of chocolate by myself is un- self-controlled, I still say ‘yes’ to all kinds of things which stress me out, I still agonise over leaving the house with bad hair or outfit, I still apologise for being blah to people because I’m tired, and I still feel guilty for relaxing some days....But I struggle and fight, and consciously decide to do what I know to be right. And I imagine that if you ask me in a decade how I am going with these new life rules, I will still be struggling against my natural desires – but hopefully, I will be much more relaxed and dare I say it... healthy.
I have to turn back the clock by 14 years to begin the story of my missing hair. I’m seven, and in most ways I am exactly like every other 7 year old girl. I play the piano (poorly), I take ballet lessons, I hate maths and mushrooms and prefer dolls and story writing. The only odd thing about me is that I like to sit on the brick wall outside our house, picking at the moss. And I don’t know this is odd, or what it will lead to. I could stay there for an hour, just pulling out those hair-like growths and letting my thoughts wander over the day, over life.
I am terribly embarrassed and distressed when my family says to me at meal times, “Your eye brows are looking moth eaten Dee...have you been pulling them out?” I furiously deny the accusation. Someone suggests that I am using tweezers, copying my mum. Which isn’t at all true. I’ve never touched tweezers, and I’m not sure why I’m missing so many eyebrows... it’s not a conscious decision to remove them, certainly not an attempt to thin the crop.
One morning on camp, my little friend comes up to me. “Oh Danielle! You’re missing eye lashes! How did that happen?!” I freeze inside. I feign surprise. I say that I didn’t know I was missing them, and that they must have fallen out in my sleep. I had been lying in bed the night before, pulling out lash after lash for no reason other than that I felt like doing it.
I only knew two things about my missing hair at this stage:
I do something which other people don’t do.
This thing shocks people, so I must cover it up.
The only thing which concerned me, was how appalled people were when they observed missing hair. Their reactions seemed to accuse me of doing something naughty which puzzled me. To me it felt like sucking my thumb, twirling my hair – something mindless and comforting. And mostly I was unaware, lost in thoughts, considering things over a thousand times.
By the time I had reached my early teens, my little oddity was developing into a big ogre. It seems that I was just growing into my habit rather than out, and it was poised to wreck havoc with my life. With my age had come a hearty dose of self awareness. No longer was I blissfully unaware of my odd habits and my patchy appearance. I was painfully conscious of my problem. I was conscious that I was the only person in my acquaintance with such an issue, and therefore the only person in the whole world.
I had the very thinnest line of eyebrows. Just a scattering remained. There were a few lashes growing out of my eye lids – only a few. But the worst thing was the right side of my head. I had recently run out of hair other places and taken to selecting the thickest, darkest strands of my long hair to remove. It wasn’t the hair that I wanted, it was the root. I would stick my prize possession, a juicy root, in a place to save it - a book, a table...and then keep pulling, always hoping to find a better one, never giving up.
I had never questioned my sanity until this point. But one day, I heard something which terrified me to my core. My mum had a friend over, and they were discussing the friend’s young child. My memory has stripped me of all the details but the gist of what they said was that the child was losing hair, by twirling it and pulling it out. I heard them say something about ‘psychological problem’.
As a 13 year old, I was naive and uneducated about that word - Psychological. To me it meant insane, mad, not-quite-right. This little child was losing hair, and it could be a psychological disorder.
I pull out my hair by the handful, therefore I am insane.
This tiny discovery about the nature of my issue plunged a weight into my heart. A weak sickness seemed to spread right through me. I was crazy! If I had wanted to Google-search my condition, this was the end of that notion. I didn’t want to know the details of my problem, I just needed to stop right now and let the hair grow back and become ‘normal’.
Unlike other habits I’d managed to stop, this one was resistant. It was cruel to me in its fiery refusal to be gone. I tried wearing hats, making promises, praying hard...but each day there would come a point where the only thing I wanted to do was pull out my hair, and the urge was so overpowering that I gave in.
“Just one hair”, I would promise myself. But that one hair wasn’t good enough. It didn’t have a big enough root. It hadn’t fulfilled the cravings inside me. One handful of hair later, I would drop my loot in the rubbish bin, looking at it with repulsion.
Life had become increasingly anxiety provoking. My balding appearance was now impossible to hide, despite my earnest attempts with hairstyles and hair spray. I avoided swimming at all costs, as wet hair showed the baldness far more than dry. This was very challenging considering we had a pool in the back yard, excuses and more excuses. I steered conversations with all my social ability away from topics relating to hair, terrified that someone would mention it and shame me to my very core. I lied to hair dressers outright about the reason for my missing hair (on the very rare occasion that I actually went). I cried night after night about the ballet concert which was coming up, where we had to have our hair in braids: mine wouldn’t go into braids, and then the secret would be out...and I would ruin the whole concert by not being able to have matching hair. I lay awake inventing convincing stories:
“I’m taking a medication which makes it fall out.”
“My hair is just falling out and I don’t know why.”
“My friend cut my hair which is why it’s so patchy.”
In bed I would realise how miserable life had become, how much I wanted to stop. I was so young that it never occurred to me that there could be help out there, that problems can be solved. To me, it was my burden which I had to bear, and ‘trying harder’ was the only solution.
By the age of sixteen I had a little more control than I’d had earlier on – and for a couple of years I went almost free from my addiction. Because I never pulled in public, my being away from home from 6.30 am – 5.30 pm proved to be very helpful. I simply didn’t get the chance to pull it out. The problem waxed and waned over the next few years. It still caused me terror whenever someone wanted to talk about or touch my hair, but it wasn’t half so hard to conceal.
My first year of university arrived, and I was sitting in an aural class watching a girl take a pair of tweezers from her bag to pluck an eyebrow. Her eyebrows looked very sparse. She seemed rather intent on removing the hair that she had decided on, and pulled until it was gone. I couldn’t tear my eyes from her. I knew I had just met the first person in my entire life that compulsively pulled out their hair. Gradually we became better acquainted, and one day in a painfully drab lecture on Music Theory, we sat at the back of the theatre sharing stories about our bizarre compulsive addiction. Our laughter was uncontrollable; I was weak with joy and relief at finding someone just like me. She had seen a doctor and knew that our psychological disorder was called Trichotillomania. She wasn’t insane - she was lovely, funny, and quirky.
I went home and researched it, finding that 4% of people suffer from it. It’s more common in females. Sufferers often suffer from depression or anxiety as well. Finally my condition was out in the open and I began to deal with the years of terror it had given me. I went to a psychologist to learn strategies, and then an Alexander Technique teacher. It went from being my naughty addiction, to a real problem for which there was help and support. I am now the happy owner of a full head of hair, and while I will probably never be urge free, I am armed with strategies to control it. I have finally learnt that ‘psychological disorder’ doesn’t mean ‘mad’, and as my psychiatrist recently assured me, if I don’t have any mad cousins or great aunts it’s rather unlikely that I will ever lose my marbles. Thank goodness!
I am going to write to you, as you’re an inanimate object and I can’t possibly burden you with negativity. I am so blah that my world has turned into shades of gray with splotches of black. Monotony, painful and eternal, is all that I can see for the future. I wake up, but everything I see fills me with a dread which eventually strangles me and kidnaps me of my ability to do a thing. The pot plant needs watering, the pets cages need attention, the kitchen is filthy, there’s a mound of clothes for washing, an email to write, a flute incessantly demanding I play it...or else, and a doctor’s stern order to exercise every day. I moan because paralysis is kicking in. I am incapacitated in just a few seconds. Sitting in a dark room crying seems the only option, everything else requires something which I don’t have. I have lost my drive, my personality...every time I walk past something I’ve left undone, it glares at me with condemnation: YOU LAZY WOMAN, YOU HAVEN’T DONE ANYTHING TODAY. I cry because the words are so stern, so cutting, so truthful. I go back to my couch, and sit there numbing the pain with the soothing process of pulling out my hair...even the consequences of bladness don’t equate when compared to the temporary joy of repetitively, obsessively extracting each root.
Ben arrives home from work; surely this will cheer me up. It turns out to be my cue for some more tears.
“Think about the things you do enjoy doing...”
“I don’t enjoy anything. It’s all awful, it’s so gray.”
“No Dee, think about what you used to enjoy.”
“I don’t know....”
“Drinking tea, and shopping and reading and walking – lots of things”
“Mmmm. I guess so. But I don’t feel like doing any of those things.”
“Come on, let’s go for a walk.”
“Nooo, I can’t. I don’t want to.” I am neurotic to the enth degree. I feel I will have a tantrum, simply burst because of what-ever it is trying to get out.
Eventually I am convinced to sit on the couch with my blanket, with some Mozart playing, and Ben close by me. It helps. Sometime later I crack my first weak smile. Some hope is returning to my little world, the glimmer that not every day is going to be today. It’s like a tiny candle being lit deep down in me, and though it wavers, I know I’m alive and my personality is just on holiday. It will return.
I’ve started seeing a Psychiatrist and despite that stigma-oozing word alarming me to some degree, I feel ready for this. He wasn't in a white cloak, and we didn't sit in a barred room. I long to learn to manage my personality – to learn to relax, to be less obsessive, less perfectionist, less stressed....and in so doing, pacify my anxiety. It would save me vast amounts of energy. I told him that I used to think I was insane, when I was a little girl and pulled out my hair. But he doesn’t think I’m crazy, which is a comfort. Neither does Ben. So maybe I'm not.
Anyway, enough rambling. I'll write next time I see gray.
This is a story about my faith. It starts back when I didn’t believe...
My dad, he was the pastor at our church in Auckland, New Zealand when I was a little girl, when I still wore piggy tails and jelly shoes. I was a pastor’s kid, and some people thought I would robotically believe, that faith was genetic, and my little soul was a carbon copy of my parent’s. Religious jargon can be learnt and spouted forth with precocious conviction, but that’s not faith – and you can’t fool God. I grew up attending Sunday School, and hearing the stories of the bible read to me every day. Since I was a weeny baby it had been part of my world, I knew no other. I knew the hymns, the stories, and how to look like I was a good little Christian girl. My main reason for liking church was that I got to play with my best friends afterwards.... I would often be sitting in the pew longing for that last painful hymn to end, so that I could grab some cookies and run around giggling with my little friends in our 90’s dresses and hats. Sometimes the older folks would give me a peppermint, that was good too.
I knew it all in my head, just like I knew that proper nouns needed capital letters, and legs in ballet must be turned out at all times. But I decided that when I was a grown up, I wouldn’t attend church, and I wouldn’t make my children either. It just didn’t seem really important; not life-changingly-so. I was cold, and religiosity without faith is hollow.
In our church there was a sweet old couple, not really old, but in their 60’s. I knew them a bit. One day, the wife was on the phone to her twin sister when she had a heart attack and fell to the ground. Her twin sister heard sudden silence and knew that something awful had happened. Telepathically confirmed. Next the husband came home to find his wife lying on the floor - he then had a heart attack and so they were both there and then both gone. We were all shocked. It felt stark, gaping, appalling. How can life be snuffed out in an instant? It was my first real brush with death. It hit me for the first time:
I’m going to die one day.
I did not like that thought at all. I went to the funeral – I saw the coffin... and imagined the dead couple and I decided I did not like death. I despised it for its cruelty. And yet, the other mourners were joyful through their wet eyes; they kept saying that they would see them again one day, that they were in a place where tears were outlawed and pain forbidden. That night was not a good one for me. Insomnia paid me a visit. I just couldn’t get to sleep because I was so fearful that I would die during the night. It was a possibility; that couple just dropped dead in one day! What if I died in the night....what then?
If there really was a God who had made this whole beautiful world...if he really did make me to be friends with him and live the way he designed me to...then no wonder he didn’t like the fact that I was ignoring him completely, and pretending I was god. It seemed right then that I shouldn’t get to live forever with him in a perfect earth after this life, if I’d ignored him like that when he had made me. But here was my problem: I had ignored God, and he had every right to be sad and angry at my rejection. How could I come to be reconciled to him?
I was just terrified that I’d die before I’d sorted these things out. My caring mum sat beside me on the bed every single night that summer, helping me to be calm, to go to sleep. Oh the relief when I woke up each morning. Still alive! One more day. But all too soon it was night time again, and these anxious thoughts returned. Whenever the sun started to set, I felt their haunting presence in my mind. I wasn’t ready to die. I didn’t want to die. I knew I had ignored God. The way I behaved and treated other people he’d created was witness to it. I had stuffed Him in a cupboard because I thought I could navigate my way through life a lot better alone. I also knew that hard as I tried, I could not possibly be perfect – it was in my nature to do the wrong thing.
If God really was concerned about the problem that I had ignored him, and he really did want there to be a way for me to come back into a relationship with him...this was of great interest to me. His Son lived on earth and never did a wrong thing. He was murdered as an innocent man, and then suffered all God’s anger for all of my And when I die, I’d be able to live with him in a new earth, so really it was no death at all.
Grace – I had done nothing to deserve this. Not a thing.
One night, after countless evenings of terror, I finally felt peace. I had told Him that I knew I was all messed up, and that he was the one in control...that I was sorry. And I knew that because of the solution he had designed, because my punishment had already been taken, I was free! And so, I went to sleep knowing that if I died in the night, I would wake to meet God, and if I stayed alive, I would wake in my bed and have another chance at living in relationship with him, and surrendering the control of my life to one who could guide me so much better.
Free.
It was such a relief. I felt light. Free. Happy. Like a helium balloon sailing along. Life is still befuddling and hurtful – but my freedom is joy. I know that everything is happening for a reason, and I know it’s to change me for the better. I am not afraid to die. I’m looking forward to a world where I can meet the creator who made me and forgave me, where I am full of energy, where I never make mistakes, and never shed another tear. Bring on that day!
