Sudden Realisation

I was chatting with my son in the car this morning about the tragic case of Jacintha Saldanha, the nurse who apparently took her own life after receiving a hoax call from an Australian radio show at the King Edward VII hospital regarding the condition of the Duchess of Cambridge.  In trying to explain to him how falling for a hoax like that could have been the final straw that tipped her over the edge, a sudden realisation came to me.  Curiously, I realised that my ex husband had, in a roundabout kind of way, done me a favour.  By being the man he is and, in my opinion, not capable of effectively parenting our children, he was in the end the reason why I could not take the step that Jacintha Saldanha did.  If I were not here there was no one that could care for my children, most especially my youngest son who has complex needs due to his autism and challenging behaviour.

Don't get me wrong, my ex is not a bad man and he loves our children just as much as I do, I have no doubt of that whatsoever.  However, loving children is not enough to meet their needs, no matter what the saccharin clichés say.  To be a parent, particularly of a child with special needs, you have to do the unpopular things, the difficult things, the messy things and the uncomfortable things.  Yes, of course, taking the children out for fabulous walks on the beach, taking them to see their doting and much-loved grandmother, letting them stay up late and generally having a great holiday with them is fantastic for them and has its place in their lives, but discipline and teaching them how to become responsible adults has to be in there too and unfortunately it is at those things that their father is not so strong.

In all the years we were together and the difficult years when I was raising them alone before I met my new partner, I had always resented my ex for leaving me to be the sole parent while he got to be the good guy and the fun guy.  Now I can see that, frustrating as that was, and still is a lot of the time, it could be the single thing that saved my life.  Had he been a fantastic parent as well as a loving father, and had I felt secure that our children would be well cared for and appropriately parented by him, I might not have had that last thread to keep me tied to life.  I know I am far from a perfect mother and I'm sure there are many parents that would have been better for my children had circumstances been different, but for my children, of the two parents they have, I know they are better off with me.

Depression may rule my life a lot of the time but I try my best to ensure that my children are protected from the worst of it and, whilst I feel a failure a lot of the time, they are proof positive that I can do at least some things right enough of the time for them to be the wonderful people they are.

Broken

So distressed that nothing anyone can say can make me feel better.  When they try I push them away, making me seem angry, controlling and unreasonable.  I hate myself but I can't stop it because I can't explain why everything is so bad.  Can't seem to do anything right, get shouted at or corrected for everything I do. Sometimes real, sometimes in my head.  Want to run away ....

So shut down I can't even pretend to feel better to make others feel better. I hurt inside so much and I don't know how to fix it.  Trying not to cry, something else I'm failing at.  Just want everything to stop. 

Depression and a Child with Autism

If I had a pound for every time I've read or heard that "only special parents are given special children" I'd be rich, and if anyone were ever crazy enough to say it to my face I don't think I'd be responsible for my actions.  "Special" children are not given to "special" parents.  I am not somehow miraculously transformed into a saintly earth mother just because my son has atypical autism.  Having a child that screams obscenities at me and anyone else, lashes out at his siblings (and me on occasion) and throws a temper tantrum every time anyone says "no" to him or his game isn't going his way does not make me a better person.  What it does make me is exhausted, depressed, worn down and defeated.  It makes me feel like a dreadful parent and a worthless human being.  It makes me short-tempered and some days I shout at my poor, miserable son who is making my life a misery along with his own.

Don't get me wrong I'm not blaming my son for his effect on my mental health.  His condition is no more his fault than my depression is my fault; if anything, he is less to blame than me as he was born with a lifelong condition, whereas mine has developed gradually over time and I could perhaps have changed things had I understood what was happening earlier.  I love my son dearly and it breaks my heart that he is so unhappy and there doesn't seem to be anything I can do to change that right now, no matter how hard I try.  He sees every reprimand, no matter how tactfully or gently worded, as a personal attack and cannot understand why everyone is "always getting on at him".  His particular form of autism is probably a condition called pathological demand avoidance syndrome, which has only been recognised and described relatively recently.  As its name suggests, people with this condition find it very difficult to cope with demands made on them and suffer extreme anxiety when they are not in control of a situation.

My son is thirteen now, an age at which most boys find life a bit difficult to cope with.  He will be having hormonal surges and at the same time he is trying to find out where he fits in the world and how far he can push against authority.  Add to these normal changes the difficulties in social understanding and panic when confronted by everyday demands brought by PDA and it's no wonder he is unhappy.  He cannot understand that his older brother and sister have more freedom, not just because they are older, but also because they do not have his lack of social understanding or lack of awareness of danger.

I would literally tear off my right arm if it meant my son would not find life so very hard.  I would give my life for him to be happy and to be able to live life like other people do.  Everyone has difficulties in their life; there is no such thing as an easy ride, whatever it may look like from the outside; but his difficulties mean that he doesn't even understand what it is he doesn't understand.  He is confused when his behaviour is challenged, he cannot understand that if he hits someone it's not their fault, they didn't make him do it and he could choose to react differently to whatever it was that upset him.

Parenting a child like my son is like walking through a minefield.  There is no map, no special sixth sense to work out where the mines are.  All I can do is try my best, every minute of every day; all the while knowing that my best is not good enough, I cannot protect him, I cannot teach him how to behave more in line with social norms and I cannot stop him being confused, panicked and angry every time I try to stop him shouting at the top of his voice, throwing things or lashing out at those around him.  Strategies to help children like my son include trying to avoid making direct demands and instead trying to use more indirect and negotiative approaches to try to manage their behaviour.  This is all very well when trying to get him to put his shoes on or come and eat his tea but when I'm trying to get him to stop hitting someone or otherwise endangering himself or others there is not time for an indirect approach.  In such situations all I can do is try to limit the fallout and then try to cope with his overloaded emotions.

My son's behaviour is not his fault and is a direct result of a condition he was born with and that he cannot control so I cannot react in the way I would were he a neuro-typical child.  Getting angry with him or shouting at him only exacerbates his panic and anxiety and his behaviour will further deteriorate accordingly.  I am no saint, nor am I a perfect mother so sometimes I do both get angry and shout, other times I manage to suppress my own feelings and deal with him calmly.  Either way, I am left with emotions and feelings I am unable to process in a healthy way.  I am either struggling with suppressed anger, sadness, shock and pain or I'm struggling with guilt, anger, sadness, shock and pain.  No amount of understanding of his condition can make the shock and pain less every time he swears at me, hits me or calls me an idiot, a fool, a stupid woman with contempt dripping from his tone.  Nothing can take away my pain at his mental pain when he is hitting himself in the head, saying he's stupid and wants to die.

Suppression of my feelings is a guaranteed trigger for my depression and after one of my son's outbursts it can take anything from an hour or so to several days for me to recover, although a feature of his condition means he can switch mood in an instant.  I hate myself for being unable to make life better for him and for his brother and sister, who suffer greatly as a result of his behaviour, even though I know intellectually that it's not my fault.  I hate myself for letting myself become depressed as a result of his behaviour when I know he can't help how he is.  I hate his condition, which seems to be taking more and more of my loving, funny, smart boy away from me every day.  I love my son and I wish I could help him instead of being so useless and worthless.  My son may be a "special" child but I am just an ordinary mother trying my best, when my best can never be good enough.

For more information on Pathological Demand Avoidance Syndrome, please see the relevant National Autistic Society website pages.

Control

One thing I have learnt over the years that I have suffered with depression is that my illness is closely linked to how in control of my life I feel.  The less in control I feel over what is happening in my life, the more depressed and anxious I become.  This correlation has been proven time and again as my life has rollercoastered along.  Making the decision to end my marriage was massive and the hardest thing I have ever had to do but it meant I had taken control of an aspect of my life that was making me more depressed by the day.  The upswing I experienced as a result of making that decision and my ex-husband eventually moving out (an immensely traumatic time for all concerned though this was) led me to believe that my depression had gone forever.  I had a period of several months when I felt in control of my life, happy and free of all symptoms of depression.

Unfortunately this didn't last and the lead up to my father's death saw my symptoms return.  This control issue explains why I find my son's behaviour has such an impact on my mood.  He has an autistic spectrum disorder, possibly pathological demand avoidance syndrome, which means his behaviour is extremely challenging.  He does not understand the different ways people relate to others; for example he would speak to an adult the same way he would speak to a peer, including any and all swear words, terms of derision or contempt and lack of respect.  If you are under any illusion about how difficult this is to live with, just imagine all of your ideas and norms about how a child should treat his mother have been completely disregarded and you're part way there.  I have always thought of myself as a relaxed, laid-back kind of parent but every time he says "f___ you, bitch" it hurts just as much as the first time.  His condition makes me feel that I have little or no control over our home life as his mood dictates the emotional temperature of the household, no matter what strategies I implement.  Thus my depression is being constantly reinforced by this feeling of lack of control.  Another parent of a child similar to mine summed it up perfectly, "walking on eggshells all the time is preferable to a punch in the face".

Whilst certainly preferable to a punch in the face, always tiptoeing around trying to avoid someone else's temper tantrums is not good for one's mental health.  The harder I try not to upset him and to phrase my interactions with him in as gentle and non-provoking way as possible, sometimes just a simple comment can result in a meltdown - which in his case generally means at best a verbal assault or anything up to and including physical assault and destruction of property.  This ongoing reinforcement of my depression is something that leaves professionals at a loss when it comes to supporting me.  My experience has been that they can see that much of what I go through on a day-to-day basis is intolerable and that the therapies they can offer me won't change that.  Advice tends to be to try and "distance" myself from his behaviour so that it doesn't feel so personal; something that I have so far been spectacularly incapable of doing.

My inability to parent my son effectively makes me feel a complete failure, despite the fact that my other two children are responsible teenagers that I am very proud of.  I feel I have let my other two children down by not protecting them from their brother's behaviour, which I know causes them a lot of distress too. 

Control is a major problem in my life at the moment.  My fiance and his son are moving in with us as soon as their house sale completes.  There has been hold up after hold up and with each passing day I can feel myself sliding further downhill.  The lack of certainty is, quite literally, driving me mad.  We cannot afford for them to move in until the house sale is complete and we haven't even got a date yet so my nerves are frayed to bits.  Added to that we now have no transport as both of our cars reached the end of their economic lives within a few months of each other.  We are trying to pick up a cheap car to tide us over until the house is sold but even that seems to be far more complicated than it should be and after a wasted day spent travelling around the county looking at cars that were potential money pits, I am just about ready to crack completely.  The two youngest boys need driven to school on Monday morning so something needs to be sorted out by then!

Alone in a Crowd

Yesterday I took a walk into town, partly to take a photograph for my 365 day project; partly to get some exercise for my foot, which is causing me a lot of pain at the moment; and partly to get away from Star Wars on the television!  I took my book and planned to stop for lunch in town before walking home again.  From the time I left the house I felt as if I was being watched.  This is never a good thing; it seems to be a kind of anxiety-based paranoia that means I constantly feel that people are looking at me and judging me.  I feel desperately unattractive and that other people will be offended by my presence.  At times like this I would love to just be invisible.

I managed to get some nice photographs and even managed to ignore some funny looks as I took this one in town where it was quite busy.  I am trying to use my love of photography to overcome my paranoia and anxiety, with mixed success.  By the time I made it to Costa I was definitely ready to sit down!  I ordered and made my way to a table, being somewhat upset on the way by a man deciding he was going to sit at the table I was heading for and all but pushing me out of the way.  I struggled to concentrate on my book as I was feeling very anxious and conspicuous.  Eating in public is something I have a problem with, even on a good day, so eating when I was feeling so fragile was worse.  I felt guilty for eating and as if everyone was looking at me and thinking "no wonder she's so fat".

Some days I can relax in a busy environment, finding some anonymity in the crowd, but other days, like this one, I feel so devastatingly alone that it is as if there is a big neon sign above my head declaring my pathetic lack of company.  Every where I looked there were couples; families; groups of friends; but no one I knew.  There is a lot of truth in the saying that you can be loneliest in a crowd and that is exactly how I felt.

The feeling was crushingly oppressive, as if the world were closing in on me.  Walking home was difficult as the wish to be invisible was overwhelming.  In town where it was busy was bad enough but once I got closer to home and there were fewer people around it was even worse.  Being lonely in a crowd is horrible but it is preferable to the agonising feeling of walking past the only other person around.  When the road is quiet I feel the most threatened by the few people that are there and, even worse, the people that might be there that I can't see.  I know that my fears are irrational and I know that I am not in the least bit interesting enough for anyone to want to look at me but that doesn't change the feelings of panic and fear that assail me when I am out.  I wish I could just curl up in a corner somewhere and let the world pass me by.

The Road to Depression

I was delighted to be asked to write a guest blog for Storying Sheffield, a project based at the University of Sheffield about accessible and universal ideas such as narrative, storytelling, history, and the environment.  The story I wrote about my depression can be found here.

Depression and Celebrity

Much has been said today about celebrities and their 'misery lit' autobiographies courtesy of India Knight's column in yesterday's Sunday Times.  I have not read Ms Knight's piece as it languishes behind The Times' prohibitive paywall; I even contemplated paying to read it but it would appear that this is not possible without taking out a year's subscription to the website.  I am almost certain that the last time I purchased a paper copy of The Times I did not have to commit to doing so every day for a year but there you go.

That being the case, I clearly cannot comment on the specifics of Ms Knight's article, although I will, in passing, comment on the unfortunate twitter storm that occurred as a result.  Whoever tweets on behalf of the mental health charity Mind clearly had a bad case of Monday morning-itis and did not really think through what they were tweeting when they appeared to call for followers to attack Ms Knight.  I am certain that the intention was merely to open up the debate but the choice of words was ill-advised at best.  Twitter's 140 character limit is notorious for leading to ambiguity and unfortunately Mind fell into that trap today, I'm sure that this will be a lesson well learnt.

To return to the subject in question, I do not find it at all surprising that many celebrities have suffered with mental illness.  After all, if 1 in 4 people have or have had a mental illness then it stands to reason that mental illness amongst celebrities would be in a similar proportion.  I get the point that these celebrities are writing their books, cleverly released just in time for the Christmas market, purely to make money.  I get the point that having a mental illness could be seen as being the 'in thing' at the moment.  I even get why some people may be getting bored with hearing about the 'struggles' of celebrities who have way more material success than the vast majority of us could ever dream of.

However, I cannot see how someone who has suffered a mental illness could write an honest autobiography and not mention it.  Surely it's a good thing that people who have suffered mental illness no longer feel the need to be dishonest and hide it?  I know that if I were to write a story of my life it would be impossible not to include the depression that has been such a huge presence for the last nine years.

Why should celebrities who have suffered mental ill health feel reluctant to mention it for fear of being accused of 'jumping on the bandwagon'?  Is it because they are perceived not to have any reason to be depressed?  If this is indeed the case then I despair of the stigma around mental ill health ever coming to an end.  Let's get one thing absolutely straight here: depression is an illness; it is not feeling low, having a bad day or even feeling sad for a while.  Depression can take over your life, the symptoms are far more than just feeling sad and no one, not even celebrities, need a reason to be ill.  Can you seriously imagine anyone complaining about celebrities mentioning in their autobiographies that they have survived cancer?  Why then should they feel compelled to remain silent about their depression or other mental illness?

I welcome the freedom with which celebrities talk of their mental illness, even if they then use their experience to make money by writing an autobiography.  If I thought anyone would read it, I would write a book about my own experience - I wouldn't say no to making a bit of money out of my own misery!  The point is, anyone saying they have or have had a mental illness should raise no more eyebrows than someone saying they have cancer, heart disease or diabetes.  Illness is illness, whether mental or physical should not matter.  So if you are one of those who have sighed when yet another celebrity has 'gone on' about their mental illness and maybe passed comment asking "what have they got to be depressed about", please, think again and end the stigma.

Dear GPs

When someone with a history of depression comes to see you, please take the time to actually ask them how they are.  It is not easy to say you are feeling very low, it's not easy to relax your public mask and admit you are struggling.  How much more difficult do you think you make it by a brisk "What can I do for you?"  Clearly you are busy, clearly it is much more convenient for you to just write another prescription and move on to the next patient.  What does it matter that the person you've just hurried out of the door now feels even more worthless than she did when she walked in?  Do you care that she had to hide in the ladies until she had stopped crying enough to go home?  Do you care that she now thinks she is not important enough to be taken seriously?

It is difficult in these days of large surgeries for GPs to get to know their patients as they did when medical practices tended to be smaller.  Surely then it is even more important to ask questions and try and draw out from the patient the true extent of their illness than it was when the patient's demeanour could let you know they were not themselves?  Appearing "fine" is an art perfected by most people suffering mental illness; appearances alone will not tell even the most experienced of GPs how someone is coping underneath the surface.

Of course it would be easy to lay blame with the patient; why did she not just say how bad things are?  After all, the GP is not psychic and cannot be expected to know what is going on in someone's head.  What is the point of going to see a doctor and not telling them how you are?  This point of view totally discounts the difficulty many, if not most, of us feel when admitting we are not coping.  Simply making an appointment to see a doctor about a mental illness is a massive hurdle.  As the appointment gets closer it looms larger and larger in the mind and apprehension means that, by the time the appointment arrives, the patient can be paralysed by their internal turmoil; and yet appear outwardly "normal".

All it would have taken was the right question: "How are you coping?".  Giving an opening is all that is needed.  Let the patient know that they are in a safe place and you want to know how they are really feeling.  Less convenient perhaps, but surely convenience should not be the main focus of a GP's appointment?  Appointment time is limited and GPs often run late so the pressure is always on to keep consultation time to a minimum.  Having someone cry and talk about themselves is messy and time-consuming but if it makes the difference between the patient feeling cared for and valued instead of unimportant, useless and inconvenient is that not worth it?

Looking "fine" does not equate to feeling fine and taking the time to know the difference could not just make a difference to a patient's state of mind; it could, potentially save a life.  Depression may be the most common mental illness but that should not be taken to mean that it is an everyday malady and is not that serious.  Depression can be a severely debilitating and even life-threatening condition and, as such, should always be taken seriously.

So please, GPs, when you have someone sitting in front of you, take the time to ask them how they are.  If you don't ask they may not feel able to tell you and may just leave you feeling worse rather than better.

Bad Days

How do you cope with bad days when you have depression?  Everyone has bad days now and then but when you have depression a bad day can be anything from a general low mood; to hiding away from the world and hoping it goes away; to self-harming or self-endangering behaviour.  Bad days can also last far more than a day.  I don't normally blog when I'm in the midst of a bad episode but I thought this time I would try and convey what it actually feels like.

I have been suffering with a cold for a few days and this has depleted my already low resources, which isn't helping my mood at all.  Sleep has also been difficult for a few nights in a row now and lack of sleep always makes my symptoms worse.  So far this episode has not been too severe but my mood is low, I feel on the edge of tears most of the time, I'm tired, I have little motivation and I'm struggling to cope with my day to day responsibilities.  I feel worthless, useless and hopeless.  Parenting is very difficult when you are feeling this low and it gets difficult to hide how I'm feeling from the children.  The voice in my head tells me I'm a terrible parent and the children would be far better off without me.

How do I cope with bad days?  The simple answer is I don't, I just try to survive them until things improve.  Sometimes that means staying at home, seeing no one and doing little but if that's what it takes, that's what I'll do.  I'm tired, I just want everything to stop, for a while at least, to let me just be.  Life is relentless, wearing and difficult and there is no magic wand to make it better.  Bad days come out of nowhere, with no warning and take no prisoners.  I can't think straight or focus on a task for any length of time.  I can't cope with dealing with strangers or people in authority so leaving the house or even dealing with household business by telephone has to be put on hold until I feel more able to cope.

The rambling nature of this post is an indication of my inability to plan and execute tasks as well as usual.  Thinking is difficult and trying not to just whine and sound self-pitying is virtually impossible.  I have had a lot of bad days over the past few months and somehow I need to convey that to the GP at my appointment tomorrow.  Talking about how I'm feeling is very hard and, as I wrote recently, I'm very bad at telling the doctor how bad things really are.  Maybe tomorrow I'll manage.

Happiness and Depression

This is a post I wrote as a Guest Post for the excellent Black Dog Tribe, the original post, and comments, can be viewed here.

Happiness may appear to be an odd choice of topic when talking about depression.  However, it is the happy times that can throw depressive feelings into the sharpest focus.  It’s ‘easy’ to be depressed on a grey day, when you’ve nowhere to go and no-one to see.  You can wallow in feeling low and distract yourself with your ‘white noise’ activity of choice, be that reading, watching television, dozing or, like me, surfing the net.  How much more difficult it is to be depressed on a lovely, sunny day when you are included in activity with family or friends.  Depression does not pick and choose the days to embrace you and, whilst that grey day may indeed invite depression in, it is just as likely to come knocking at a friend’s birthday party, at your parents’ anniversary dinner or even when you’re pushing your laughing child on a swing.

Never underestimate how difficult it is to feign happiness when your brain is a fog of despair and your heart is as heavy as lead.  Being amongst people who love you should feel safe and warm but it can feel lonely and stressful when your internal monologue endlessly reminds you that you are worthless and don’t fit in.  Smiling and making small talk can cause real emotional pain when every fibre of your being wants to run, run far away from these ‘normal’ people who must be able to see how fake you are, how false, how stupid.  Even those who think they understand and who treat you with care cannot see who you really are – or your own broken image of who you are.

Keeping up the facade of being happy when you are feeling dragged down by depression is not simply difficult, it is bone-crushingly exhausting and, in fact, depressing!  I have found it a good idea when surrounded by family or friends to try and take some ‘time out’ to rest from keeping up the appearance of ‘normality’.  Even if it’s just a few minutes in the bathroom to relax your facade or even shed a tear or two, it can help you cope for a while longer.

When others around you are happy they often feel the need to ‘cheer you up’ and this is particularly true of those closest to you who find your distress hardest to bear.  Explaining why their jokes, kindness and consideration don’t actually make you feel any better, no matter how much you appreciate them trying, gets embarrassing and exhausting so I often ‘pretend’ that yes, I feel better and thank them.  The dishonesty weighs heavily on my heart but I can’t see a better way out of the situation and so I’m back to painting on the facade once again and using all of my mental resources to maintain it.

A final, and perhaps the strangest, aspect of the dysfunctional relationship between happiness and my depression is the feelings I experience when I’m actually happy.  Even during my most severe depressive episodes I can have short periods of being happy or of enjoying myself and this brings on a complex mix of emotions.  I feel a fraud, for my depression can’t be all that bad after all; I feel afraid that if people see me smiling they will not believe I’m ill; I feel uneasy because the feelings of happiness do not sit easily amongst my more entrenched feelings of dislocation and hopelessness; and, above all, I feel sad because I remember a time when happiness was a norm for me and I yearn to have that uncomplicated relationship with happiness again, where I don’t feel the need to analyse or justify the feeling and can just let it happen.

Update 16th October 2012: I can recommend this blog post by The Depressed Moose on a similar topic

Where is My Voice?

Mental illness is the poor relation of the health service.  I doubt that I could find a single person involved, whether service user (I hate that phrase!) or mental health professional, that would disagree with that.  A thought occurred to me recently that, glaringly obvious though it is, is probably not often thought about in this regard.  People using mental health services have, or have had, by definition, a mental illness.  Most mental illnesses are aggravated by stress.  How then, are people with mental illnesses supposed to get their voices heard?  How are we to campaign for better, more widely-available services?

For some considerable time last year I tried to join in campaigning against the planned cuts to disability benefits.  I wrote to my MP, I blogged, tweeted and generally tried to shake the general public into the realisation that these cuts would have a significant, detrimental effect on sick and disabled people.  I read article upon article, blog upon blog, trying to educate myself and to find ways of raising the profile of the campaign.  However, unlike many of my fellow campaigners, my mental health just wasn't up to it and my depression started to be exacerbated by the struggle to get people to listen and to take seriously the very real impact the planned benefit cuts would have on some of the most vulnerable people in our society.  I had to back away from the fight, reduce my area of focus and retreat into my own small, self-centred bubble of lonely safety.

My crisis has faded a bit now, although I am still fragile and have good and bad days, so again I have started to blog.  This time however, I have been blogging not about campaigning for better services or cuts to benefits, but about my actual illness; what it's like, for me, to live with depression.  One of the hardest things about depression is trying to decide where, in the spectrum of illness and disability, you actually fit.  I have no physical disability and I look 'fine' so no one coming into contact with me would guess at my illness unless I tell them.  I make no secret of my depression, but neither do I wear a placard announcing it to the world.  It's difficult to demand treatment when you feel that you're 'not ill enough' to deserve it. I know there are many far worse off than me, so how can I justify wanting to utilise a scarce resource (therapy) that others need more?  My own, internal, self-critical voice silences my militant, political, campaigning, demanding, public voice.  My voice is not only silenced by the ignorance and lack of interest of others, stigma and discrimination; my voice is silenced by my own illness and lack of self-worth.

I attend my GP appointments every few weeks like a good girl and just manage to stop myself from the stock "fine" answer to her usual "how are you?".  But do I actually tell her how I am?  No, in my usual not-wanting-to-make-a-fuss fashion, the best I can manage is a self-deprecating "not that brilliant actually".  Why?  Why don't I tell her that most days I have at least one episode of internal screaming and fear it will never stop?  Why don't I tell her that I suppress my feelings so much for the sake of others that I feel I will literally explode?  Why don't I tell her that at least once a day I feel so tired of the struggle to keep going that I just want to give up and stop living?  Why don't I tell her that I spend so much of my time trying to be what everyone else wants or needs me to be that I've completely lost sight of who I actually am?  Why don't I tell her that I cannot look to the future at all, never mind do so with any hope?  My voice is silenced by my own need to 'act appropriately', to 'not make a show of myself', to 'be in control'; my voice is silenced by my own self doubt that my illness is 'deserving' enough to demand better treatment.

I am just one person whose voice is unheard.  How many more people are there, people like me, whose voices are lost?  People who struggle from minute to minute; hour to hour; day to day.  People who have not got the energy, strength or platform to make their voices heard?  Who speaks for those that cannot speak for themselves?  Of course there are charities like Mind, SANE, The Samaritans, The Black Dog Tribe and Rethink Mental Illness that all do excellent, valuable work and try to give us a voice; but we need to be heard as individuals and as people deserving of adequate treatment.  If people suffering cancer, heart disease, diabetes or any other widespread physical condition were routinely turned down for the one treatment that could mitigate their symptoms or even cure them there would be a national outcry.  This happens to people with mental illness every single day and no one knows; no one shouts; no one cares.  Having an invisible illness does not just mean that your symptoms are not visible; it means that you are invisible; it means that your voice is not heard.

Online Support

I have suffered with depression for, I think, about 9 years.  I can’t pinpoint exactly when it started as you don’t just wake up one day with depression; it creeps up on you unawares.  What I can do is pinpoint the exact moment I realised I needed help.  One day I went into the local village shop after dropping the children off at school.  The lady serving that day was a friend and she greeted me, as she always did, with a warm smile and a welcoming hello.  Her easy cheer stopped me in my tracks and I was in tears before I had even made it out of the shop.  I cried all the way home and it was all of a sudden glaringly obvious to me that my reaction to someone else’s happy, relaxed nature was completely abnormal.  I was way more than unhappy; I was so desperately low that someone else being normally, every-day, happy threw my own feelings into such sharp relief that I could no longer ignore them.  I called the doctor as soon as I got home.

I was severely depressed by the time I sought help.  I had been sinking lower and lower each day for months and months and by the time I realised I was virtually catatonic.  My condition was made worse by the fact that I also had extremely low iron levels in my bloodstream, which rendered me physically exhausted in addition to the mental maelstrom I was experiencing.  Each day I got up and got the children fed, dressed and ready for school.  As soon as I’d taken them to school I’d go home and often either go back to bed or sleep on the sofa until it was time to collect them.  After the day I was woken by a phone call from the school fifteen minutes after I should have collected my youngest, I always made sure I set an alarm, even if it was 9.30 in the morning when I went to sleep.  I’d collect the children and then play ‘Mummy’ until after tea, when I’d crash again and my husband would take over for a while.  During this time I tried very hard to ensure the children were cared for.  I always kept the washing up to date and made sure there was food in the house, although going to the supermarket was, and still is sometimes, extremely traumatic for me.  I am conscious though that they did suffer during this, my darkest period as I was not able to interact with them as I should have and I regret that deeply.

The medication the GP prescribed me, antidepressants and iron supplements, gradually dragged me out of the worst of the dense fog but I reached a plateau in my recovery after about six months and I felt I needed more than just medication to help me.  I was fortunate that I was able to (not quite) afford the private psychologist that my GP referred me to.   He was great and really helped me to address some of the issues that were contributing to my illness.  Sadly, part of this process led to the end of my 18 year marriage, which was incredibly painful for all concerned.

I have never returned to that absolute depth of long-lasting, non-functioning depression but nor have I succeeded in achieving the recovery that my GP assured me was possible all those years ago.  I have had periods, some as long as several months, of being relatively symptom free but by and large my depression has stayed with me, colouring all aspects of my life.  I have good days and bad days and have pretty much resigned myself to living with depression for the rest of my life.  I am no longer in a position to be able to pay for therapy and, as therapy on the NHS is virtually non-existent, having online support has really helped me to cope with my condition on a day to day basis.  There is, of course, no joy in knowing that other people also suffer with an illness that drains the pleasure and energy out of them most days, but to know that others understand exactly what you mean when you describe how you are feeling can take some of the pressure off.  Having my feelings validated, affirmed and understood makes me feel more able to keep pushing for the help and support I know I need. 

My illness can often make interacting with people face to face extremely difficult, or even impossible, for me so access to support online has proven invaluable.  I read a lot of mental health blogs and follow many people on twitter that also have various mental illnesses and all of them have helped me at one time or another to feel more ‘normal’ and less isolated.  Online forums, organisations like Mind and SANE and projects like SANE’s Virtual Black Dog all comprise an online community for raising awareness, sharing experiences and providing support.  Certainly for me, support from people who have, or have had, similar experiences to mine means so much as I know it comes from a place of acceptance and understanding.  I am blessed to have a wonderful, close family who try very hard to understand and support me but, as I have written before, sharing too much with those closest to you is not only difficult, it can cause other, knock-on problems that affect your relationships and the dynamics within them.

Blogging is a good way of exploring my own feelings and experiences and to try and make sense of them.  Very often I have started to write a piece thinking it will go in one direction only to discover, as I write, that it veers off at a completely unexpected tangent.  This has occasionally resulted in me revealing perhaps more of my personal experience than I had originally intended, but it almost always helps me have a new insight into how events have impacted on my illness and emotions.  In a way, it’s like the more positive experiences I have had with therapy, in that the process itself can help me to see solutions for myself, rather than having them suggested for me.  I blog mostly for myself, exploring events in writing is a well-known way of coping with difficult situations and emotions, but also for others.  I have had so many positives from reading other people’s stories and from interacting with people online and I hope that reading my blog will make someone else feel that maybe, just maybe, they are not as alone as they thought.

Bullying

What do you think of when someone mentions bullying?  Physical punches, kicks, beatings?  Or threats of physical violence unless favours are given?  Stealing of trainers, school bags, dinner money?

What about name calling?  Isn't that just normal childhood behaviour?  Is it really bullying?  Surely it can't actually hurt anyone?  Well, yes, it can, and does, hurt people, far more than you might think.  I was bullied relentlessly throughout my years at primary school.  I couldn't tell you when it started, I don't really remember it ever not happening.  I was never physically assaulted, unless you count filling my wellies with snow or a bit of jostling, but the verbal abuse was constant and it wasn't just one or two people, it was nearly everyone in the class, and some that weren't.  What marked me out as a victim?  I doubt I'll ever know really, but once the pattern was established there was no going back.

Every single day of my school life, every break, every lunchtime, walking to and from school and any time I was seen by my classmates, or other children I didn't even know on several occasions, I would have to negotiate name calling, taunts and teasing.  Why?  I wasn't a nasty child, I didn't smell, I didn't wear glasses (then), I was just a little girl that for some reason, everyone decided didn't fit in.

You may be asking what the school did about this consistent bullying?  Well, the answer would be nothing.  Not because they were incompetent, nor did they not believe me.  The reason they did nothing was that they didn't know.  I told no-one.  Occasionally there were instances when I did tell, once, whilst I was still in the infants, my mother noticed I complained of a sore stomach one Friday each month and had to stay home, though by mid morning I was fine and would happily go back to school after lunch.  She spoke with the Head Master and found out that once a month there was a longer playtime to enable staff meetings.  I was scared of the children playing some kind of chasing game apparently, although I have no recollection of this.  Action was taken to ensure extra supervision during these breaks and my Friday morning stomach aches disappeared.  Another time was when I was seven and had broken my arm falling on ice in the playground.  Being slowed up by a plaster cast meant I was bullied during break times even more and I must have told on that occasion as I was allowed to stay in school for breaks until the cast was removed.

Never though did I tell anyone just how persistent the bullying was.  Looking back I think there were several reasons for this.  Firstly, what could I actually say?  Oh, so-and-so called me this or that name?  They wouldn't let me play their games?  They don't like me?  Even at such a tender age, I knew that anything I could say would sound lame and hardly like 'proper' bullying behaviour.  Secondly, I was happy at home, I had a family that loved me and siblings that I fought and played with as all children do.  Nothing about my home life was like the loneliness and isolation I had elsewhere.  Why, then, would I want to bring those feelings home to my safe place?  Possibly too, there was the chance that I may have thought I wouldn't be believed or taken seriously, or that there was nothing that could be done to stop it.  In truth I think telling anyone just didn't cross my mind.  While the bullying wasn't actually happening I shut it out, not wanting to think about it, let alone talk about it.

Moving on to secondary school things did improve, there were fewer comments shouted at me across the street and the name calling pretty much stopped.  However, I had been irrevocably affected by the bullying and I found making friends difficult to say the least.  I felt that no one would want to be my friend and that I was basically unlikeable.  I was awkward with people I didn't know and assumed people would forget who I was if I didn't see them for a while.  In second year I made friends with a girl in the year above me, someone who hadn't known me from primary school and knew nothing about me being 'the one that no one likes'.  I met her through the school choir and, through her, joined an amateur dramatic society outside school.  She probably saved me from ending up far worse than I have, and she is still one of my best friends, although she lives overseas now.

You might think that knowing the root of a lot of my self esteem problems would mean that I could leave them behind and move on.  Sadly, that has not been the case.  The bullying throughout much of my formative years has left me believing still that I am intrinsically unlikeable, unloveable and unattractive.  Even when face to face with evidence to the contrary in the form of people who take the time to be with me, and even someone who is the love of my life who actually wants to marry me, I cannot believe that the opinions of all those children all those years ago were wrong.

This is the legacy that bullying leaves.  It changes you.  It breaks you.  Never think that name calling or verbal taunting are not 'proper' bullying.  The scars they leave are deeper and more long lasting than any punch or kick.  If your child tells you someone is calling them names and being mean to them, please, don't tell them that old lie about 'sticks and stones'.  Words can hurt you.  Words do hurt you, and they can keep on hurting you long, long after the bruises from sticks and stones have healed.

How ill is ill enough?

I read this excellent blog on the Time to Change website about where depression fits into the spectrum of disability, if at all.  The blog made me think a lot about my own illness and my own feelings about the 'legitimacy' of my claim to ill-health.  I know I'm not well, I know the limitations my illness puts on me and my ability to function productively but still I feel embarrassed by claiming to be ill when, physically, I am relatively healthy.

The everyday experience that is my depression impacts on every aspect of my life.  My relationships, my children and even who I am are all coloured by the black cloud of depression.  When I laugh I feel guilty; when I'm down I feel pathetic and, yes, guilty again; when I'm out walking, especially if the street is quiet, I feel self-conscious, unattractive and cripplingly conspicuous; I hate to eat in front of anyone, unless they are also eating and even then I am on edge and make sure I don't eat more than others; I cannot handle confrontation without crying and feeling totally inadequate; if my children are less than acceptably behaved I blame myself and feel like a useless parent; and then of course there is the ever-present, all-pervading, brain-numbing exhaustion.

All of these symptoms and more can leave me unable to function effectively at all some days, others they just make me slower than I ought to be, less able to 'put myself out there'.  I don't work as I am a registered carer for my son, who has an autistic spectrum disorder.  In reality, I hide behind my son's disability.  It's true that it would be very difficult for me to find work as he needs supervision at all times and has to be taken to and collected from his special school daily as we live too close to qualify for transport.  That said, the main reason I don't work is due to my illness, I just don't need to admit that publicly too often as I have the ideal smokescreen of my son's disability behind which to hide my own.

Whenever I try and explain my illness to anyone I feel as if I'm over-dramatising and yet at the same time under-selling my symptoms.  I shy away from discussion of suicidal ideation, even though it's an ever-present demon lurking in my mind, as I don't feel I have the right to admit to feelings I have no intention of acting on.  There are few days that pass without the thought of ending my life, or at least my life coming to an end, crossing my mind at some level.  How legitimately can I tell anyone that when I know it's an avenue that is simply not open to me?  I have very limited experience of suicide but what I have experienced has taught me that it is not something that can ever be confined to the person committing the act.  The ripples of suicide are far-reaching and long-lasting and those left behind suffer far too much for me to ever feel able to take that route.  I have seen the effect that the death of my baby son had on my family.  I have flashbacks to the horrific telephone call I had to make to my parents to tell them and to the heart wrenching, devastating, unbearable, unprecedented sound of my father crying at my son's funeral.  Inflicting pain like that once in my lifetime is enough, I cannot, no matter what happens, willingly do it again.  I know also that children of suicides very often feel guilt for their parent's actions; how could I possibly do that to my children?  My children are approaching adulthood having had a fairly rough time over the years and I am so proud of the people they are turning out to be.  No way can I forestall their personal growth in such a traumatic way.

The removal of the ultimate conclusion of my illness as an option is, in itself, a factor in exacerbating some of my symptoms.  The fact that I cannot have a 'way out' means that I am trapped in this life and that way, as the saying goes, madness lies.  On bad days, when I want to escape but cannot, I can 'see' myself inside my head; running from door to door, searching for a way out where there is none to be found.  Those times are when I feel insanity taking hold of me and the fear and desperation can be unbearable.  The vision I have is literally of my inner self trapped inside a room that is my mind; there are many doors but none lead anywhere safe.  I can feel the panic taking over me as my heart rate quickens and my breathing speeds up.  Left to myself, without someone to hold me and calm me down, I hit myself to stop the pain.  I've never told anyone that, no one knows unless they are reading this now.

When all of my symptoms, difficulties and experiences are written down I can almost believe that I do deserve help and that I am really ill but at the same time I know there are so many people more deserving and more in need than I am and I struggle to feel justified in asking yet again for help.  I managed to secure some short-term counselling earlier this year, despite the assessor telling me that the service I had been referred to was really for those with more "serious and enduring" mental health issues.  I think the reason I was allowed to access the service was twofold; first of all, my reaction to the "serious and enduring" comment was distress and despair and begging that I'd been ill for more than eight years, how much more enduring did it have to be before anyone would help?; secondly, I told the assessor, truthfully I may add, that the last time I had tried to access psychological therapy was a couple of years previously.  On that occasion I had been referred to a psychiatrist who saw me every so often and increased my medication each time because I wasn't getting better.  When I asked to be referred to a psychologist he claimed I was too ill to benefit from therapy.  I struggled to control myself over the course of a few sessions and eventually I was given an appointment with the consultant psychiatrist ... who told me I was too well to be referred as  I would never reach the head of the prioritised waiting list.  The assessor was clearly shocked by this, which I have to admit pleased me as I had always thought my treatment had been unacceptable, and I think this was a major contributory factor in her deciding to allow me to access some counselling.

The counselling helped while it lasted but it could not, or did not, help me with my underlying issues.  It was great to be able to 'off load' to my therapist on a regular basis and to talk through situations I'd found difficult and have my feelings validated but I don't know what, if anything, would help me rediscover my ability to function more effectively.  I often feel like I'm a lost cause and that I'll never recover.  I don't look far into the future and can't picture myself in ten or even five years' time; I just cope with each day as it comes and hope that one day things will get better.  I suppose I feel like I am ill enough to not be well but not ill enough to be judged deserving of any help other than the pharmaceutical variety.  I hope one day that will change, sadly I don't much mind whether that means getting better or worse.

What Doesn't Kill You Makes You Stronger

When people are in pain others have a natural impulse to try to make them feel better.  Ultimately, there are no words to do this for some pain so we resort to platitudes and clichés for want of something better to say.  'What doesn't kill you makes you stronger' is one such platitude that I came across today on twitter.  The words were slightly different but the underlying message was the same.  The person who posted seemed hurt and defensive when I said I was glad that that was the case for her but that it doesn't always work that way for everyone.  Rather than have a long discussion with her I let the subject lie, as I'm sure her intention was to be motivational rather than to be a trigger for a depressive.

Platitudes and clichés exist generally because there is some truth in them.  It is the very fact that they are oft repeated that make them clichés in the first place.  Indeed some people do find that their struggles in life have made them stronger people, better able to cope with future travails.  The crucial concept here though is that some people find this to be the case, not all.

My own struggles have had the opposite effect on me.  Many years ago I was someone who had fairly low self esteem but other than that I was a fairly together person.  I held down a responsible and stressful job, I had a good circle of friends and I generally felt that if something bad came along it would sort itself out in the end if I just kept on plugging my way through.  For the most part this approach to life worked well for me and as life threw me hurdles I cleared them or knocked them down but kept on running, never doubting that in the end everything would be alright.

Twenty years ago my husband and I made the decision to start a family, having been married for several years.  Nothing happened at first and, though upset, I assumed that eventually I would fall pregnant.  Nearly two years later I was delighted to find out I was expecting our first child.  I was overjoyed and scared and amazed and a multitude of other emotions I cannot even begin to describe.  I had a nagging fear throughout my pregnancy that something would go wrong; but, despite having symptoms of pre-eclampsia and needing an emergency caesarean section, my beautiful baby boy was born strong and healthy.  That moment when I first saw him was one of pure, unadulterated joy.  Nothing prepared me for the love I felt for him.  I thought I loved him from the moment I knew he was inside me, but that instant when I saw his face, his eyes so wide open in wonder that his wee forehead was wrinkled, I felt the most overwhelming rush of love and joy that I thought I would actually burst.

Just seven short weeks later my son died of meningicoccal septicaemia.  My world fell apart. Nothing could make this better.  There were no words of comfort that anyone could say that would make the world start turning again.  In a single day my safe, comfortable certainty that things will always work out in the end was shattered for ever.  Now I knew.  Some things are so bad that nothing can ever make everything work out alright.  There is no positive spin anyone can put on the death of a much wanted, totally adored child.  It didn't kill me but it didn't make me stronger.

I, of course, had to keep on living and no, that other much used cliché that 'time heals' isn't true either.  Time will never heal the wound that losing my son has left on my soul*, all it has done is give me time to learn how to make a place for my loss in my mind, learn how to live with it and not let it overwhelm me.

The death of my son is not the cause of my depression but it did set the scene in a way by removing that cornerstone to my life that things will always work out in the end.  As the years passed I have had many other major events, both good and bad.  I went on to have three more children, my marriage crumbled, my father died after surviving a triple bypass and several interventions to try and stem the cancer that finally claimed him, my youngest son was diagnosed with autistic spectrum disorder and his challenging behaviour has been a constant in our family life for the past ten years, and through much of this I struggled to complete an Open University degree, something I'm very proud of but cost me a lot mentally.  None of this killed me but it didn't make me stronger.

The person I am today is one who knows that life doesn't always work out alright in the end.  I am someone who knows that, no matter how hard you work or how hard you try, you can't always achieve your dreams.  I cannot cope with conflict and try to avoid it at all costs, I struggle to deal with tradespeople and I have a phobia about using the telephone for all but the simplest of calls.  I am very hard on myself and I find myself wanting in many areas, I feel worthless, useless, unattractive and intrinsically unlovable, despite the evidence to the contrary that those closest to me do, indeed love me.  The pain in my life has not killed me but it has killed what little self-belief I had and taken away the stability on which my previous life was built.

So platitudes and clichés apart, what can you say to someone who is experiencing traumatic pain?  I wouldn't claim to have all the answers and certainly would not wish to speak for anyone other than myself but, for me, acknowledging that there is nothing to say to make it better is far better than trying to find the right words when there are none.  Being there for the person suffering says far more than words and showing you care by your actions beats well-meaning platitudes any day.

* I am irreligious but could not think of a more descriptive word for the part of me that religion calls the soul.

Links you may find useful

Mind 
Sane 
Black Dog Tribe 
Sands - Stillbirth and neonatal death charity 
Cruse Bereavement Care 
Meningitis Research Foundation - Know the symptoms, be aware

Breakdown

Last night I fell apart, went to pieces, had a breakdown; call it what you will, my bottled up feelings came to a head and I couldn't keep them in any longer.  Fortunately (for me if not for him), my fiancé was with me so my breakdown consisted of being unable to speak at all for about an hour, followed by another hour of uncontrollable crying, followed by him 'talking me down' and managing to get me to a state where I was able to function again.

You would think I would have learnt the pattern by now.  Life sucks, I can't cope with it but I have to, so .... I pretend.  I paper over the cracks and pretend like everything is, well not okay, but perhaps not completely out of control.  This strategy works well for me, strangers and friends and family alike accept the face value version that I'm coping; that things are in control.  Until, of course, the tipping point is reached and I can't keep up the pretence any longer and all at once everything becomes too much to bear.

I know I should address my overwhelming feelings before I reach the point of no return but the closer I get to overload, the less able I am to deal with it - until the inevitable happens.  Today I have still been feeling very anxious and quite low.  I've got a doctor's appointment on Thursday so I'll try to hold it together until then.  Just keep your fingers crossed that nothing (else) major appears on the horizon until then!

Sadness

It's impossible to think of depression and not associate it with feelings of sadness.  In fact, many people use the terms almost interchangeably, saying they're feeling "depressed" when they are experiencing feelings of sadness or low mood.  Feeling sad or down from time to time is perfectly normal and it would be totally unrealistic to expect to feel happy or content at all times in your life.  Depression as an illness however is something far removed from feeling sad or low, although those feelings are certainly part of it. 

When I am in a depressive episode I can wake up in the morning feeling very low, without any apparent cause for my mood.  The darkest days cannot simply be described by the word sadness, that would be like describing Mount Everest as a molehill.  Depressive feelings encompass sadness but also despair; hopelessness, that is a real lack of hope of anything being alright, ever; isolation; confusion; reckless disregard for personal safety; dislocation from the world in general; and, my case at least, anxiety.

Despite my depression, I do not confuse sadness with being depressed; I am only too aware of the difference.  It is quite possible for someone in remission from their depression to feel sad without fearing they are depressed but equally, when I have depressive feelings, it can be hurtful to have them dismissed as "everyone has bad days, it doesn't mean you're depressed", no matter how well intentioned it may be.  I have suffered with depression on and off for nine years, I think by now I can tell the difference!

One of the saddest things about having depression is the fear that I will never know what my 'normal' is again.  Before I was ill I never had to think about what 'normal' for me was; I just was.  Since losing myself to depression I don't really know who I am any more.  I have made decisions whilst thinking I was 'fine' that, looking back, I can see were so far removed from how I would have behaved had I been truly well that I can't really bear to admit to having made them at all.  I over-analyse everything now, trying to find my true feelings and my true self, and typically of depressives everywhere, I find myself to be something I don't want to find.

Don't Take My Photograph ...

Why "Don't take my photograph"?  The title of my blog is take from the Newton Faulkner song, Uncomfortably Slow, which has as its chorus the lyrics:

So don't take my photograph
Cause I don't wanna know
How it looks to feel like this

These lines sum up perfectly my feelings about photographs of myself.  I absolutely hate having my photograph taken, for whatever purpose, at any time.  Just the thought of someone taking my photograph brings on feelings of anxiety and if my picture is taken unawares the result makes me feel physically ill.  I hate how I look and try to avoid mirrors as much as possible so why on earth would I want permanent reminders of how being me looks?

My feelings about my looks are partly rational; I'm not particularly good-looking, I'm overweight and I was bullied for years as a child so feelings of low self esteem and self worth are not unsurprising; and partly irrational; I'm not disfigured nor seriously ugly and I don't scare the horses or small children.  Sometimes, on a good day, I can look in the mirror and think I don't look too bad but on other days just a glance at my reflection can make my heart sink and my mood fall through the floor.

As long as I don't actually see what I look like, I can keep up some pretence of being a 'normal' person and can interact with others on an almost normal level, as long as the conversation stays away from anything that touches on self image.  It doesn't take much to tip me into feelings of despair and self-loathing though, if anyone mentions how they look, their weight, buying new clothes or any other topic that may remind me of how gross I feel I am.

Choosing new clothes is a nightmare, it's difficult to find clothes that fit and I have to look in the mirror, under un-flattering lights, in the fitting room.  Clothes shopping is definitely not something to even attempt on a bad day!  Choosing a new hairstyle or glasses brings different challenges.  Obviously I don't need to worry about whether glasses or a hairstyle will fit but I find it virtually impossible to know what would suit me as I hate how I look so how can I gauge if this style or that will make me look less unattractive?

This post reads like an attention-seeking self-pity fest but believe me, this is not my intention.  Usually I try to keep all these negative feelings private because I know just how pathetic they make me sound.  However, if I am to try to convey the complexities, depth and nuances of depression as an illness, I cannot hide even the most pathetically self indulgent aspects thereof.  Paradoxically, I can simultaneously believe and not believe all of these feelings about my outer self at the same time.  I can think that I don't look too bad at the same time as thinking I look awful.  I can cringe at how hideous I look whilst knowing on some level that I'm not that bad.  Trying to manage and balance these conflicting and contradictory thoughts takes a lot of effort, which can lead to withdrawal and yes, my ever-present friend, exhaustion.

Exhaustion

I've been trying to get around to writing this post since yesterday but ironically I've been too tired!  One of the most pervasive symptoms of depression is the constant tiredness.  Way more than just feeling sleepy, this tiredness is all-consuming, getting in the way of all aspects of daily life.  When you are always tired, finding the motivation to do anything is difficult and finding the motivation to do those things that we all have to do, but hate to do, is almost impossible.  So many things get left until the last minute, or until too late; missing birthdays seems to be my speciality this year.

Sometimes the tiredness takes over at a time when it's impossible to give in to it and those days are passed in a fog of disconnectedness.  I walk along the street without being able to focus on where I'm going and the very business of putting one foot in front of the other is a struggle.  I regularly stumble and walking in a straight line is not really an option.  Walking is difficult enough but real life doesn't just stop on the difficult days, so often I also have to drive in this state.  Clearly driving without paying attention just can't happen so I have to work extremely hard to keep focused, resulting in a major (mental) crash later, and I try to keep such trips to a minimum on the worst days.

Conventional wisdom says that exercise is good for relieving the symptoms of mild to moderate depression.  Certainly on better days walking with a purpose can lift my mood but unfortunately it doesn't seem to have a corresponding effect on my exhaustion levels and so I find exercise very problematic.  Exercise for exercise sake is particularly difficult when even the everyday necessities like getting showered and dressed leave me feeling exhausted.  I need to conserve my energy for the things that simply cannot be allowed to give, such as caring for my children's needs and making sure my youngest gets to and from school safely and on time.

One of the mose pernicious effects of the exhaustion is that, on the days when it's at its worst, other symptoms of my depression are amplified.  I am at my most paranoid when I'm at my most exhausted and on days like these I find going out almost cripplingly impossible.  I cannot stand people looking at me and the thought that anyone might speak to me is intolerable.  After managing to secure some short-term therapy (now finished even though I'm not actually better ... ), I am managing to control the paranoia a bit better, even when I'm most exhausted, but it does keep threatening to come back.

You'd think that being so exhausted would mean that I could sleep at night but, no, depression won't let you away with that!  Sleep disturbance is both a symptom and a cause of depressive episodes and the associated exhaustion.  My ex-therapist was very keen for me to try out a theory she was interested in, which was to get up when I am unable to sleep and do something extremely boring and non-productive until I felt able to sleep and then return to bed.  The theory being that the brain then gets no "reward" for not sleeping and so, over time, is trained to give up and go to sleep!  Actually, I can see the logic in the theory but in the middle of the night, feeling exhausted beyond belief but unable to sleep, and with the usual self-critical monologue circling in my brain, the last thing I ever feel like is doing something I wouldn't feel like doing during the day!  Maybe someone reading this blog will feel strong enough to try her theory and let me know if it works for them.  As for me, I'll stick to my own theory that if I'm lying down at least my body is resting a bit and stay in bed until sleep claims me, unless it becomes intolerable to do so.  And if I do get up?  Well, I'm afraid it's a warm drink and/or something quiet and non-gripping on the television for me every time.

The Elephant in the Room

I have lived with depression for so long now, even I don't know what is "normal" for me any more.  How much more difficult then must it be for those who love me to gauge my mood, to know whether this time the decisions I'm making are based on what I really want or if I'm just recklessly letting others direct my actions without realising it?  The elephant in the room is my illness and they don't want to mention it but are always watching me, judging my behaviour against a scale I can't see; to try and protect me, care for me, stop me spiralling downwards.  As a result I'm defensive, secretive and see slights where none were meant.  Sadly this means I avoid my family a lot of the time.  They live far away (or to be more accurate, I do) so I can't physically see them very often but I even avoid calling so that I don't hear the worry (am I ill? am I well? am I finding things too difficult to cope?) or the judgement (is my partner treating me well enough? have I made yet another bad choice? why don't I call more often, does it mean I'm ill or that I don't care for them enough?) in their voices that is either really there or is there only in my imagination.

I love my family and I know they love me and that their concern is because they love me, not because they are trying to pick fault in my life.  When they suggest things it's because they are trying to make my life easier or better, not because they think I'm doing everything wrong.  Knowing all this why can I not feel it?  Why do I retreat into a defensive, hurt shell and feel that I was right all along and I'm useless at everything - for why else would they need to criticise?  (I'm sure they're not really criticising, it's my own mindset that makes me feel that they are).

When they ask "And how are you?", I want to die.  I feel so guilty for making them worry about me, I feel so pathetic for not showing them that obviously I'm fine; just like everyone else; life? Hell yeah, I can do that! ... only I can't, not really, and they know that just as well as I do.  The elephant is always there, sometimes in the midst of us all making it impossible not to see, even if no-one actually mentions it, other times it wanders off into a corner of the room, not so visible but still there; always there.