Sunday, 5 February 2017

Anything different is good…

I didn’t know it was National Time to Talk Day until the closing moments of my assessment in Warwick Hospital’s Clinical Health Psychology department – but it seemed such a neat coincidence that my appointment (last Thursday) should have taken place on such a significant date that any doubts I had rapidly faded. By the way, it was Groundhog Day, also. However, I’m still struggling to find an apposite correlation with that….

I like to see a man of advancing years throwing caution to the wind. It’s inspiring in a way.

My hesitancy had concerned the publication of what follows. But, if we’re going “to get talking and break the silence around mental health problems”, as I had previously done, eleven months ago – and without any real qualms – then this is what it’s going to take. Not just wearing “my heart upon my sleeve For daws to peck at”. But allowing those who care to have a wee peek inside: and see that “I am not what I am”.

Originally – although I’m not really sure what this post really is; or represents… – when I started putting it together, it was simply a random collection of bullet-points, odd sentences and paragraphs (a brain dump); together with a couple of (what I thought were) relevant quotations – and it was for my own use; my reflection. But, over the last few weeks, as I have tried to shape it so that it better expresses what it is, currently, to be me; how my life is affected by physical and mental illness (and with the growing possibility of it being made available to an external audience); it has “grow’d like Topsy”.

I suppose what I was really trying to achieve was some sort of self-analysis – trying to put my head, my thoughts, into some sort of approximate order – so that the fifty minutes of my consultation would be used efficiently. [As it turned out, my disability – and, perhaps more importantly, how I got to this point – is so blummin’ complex, that, after an hour or so, we (me and my patient psychologist) weren’t more than halfway through. (Softly, softly, etc..)] Most of the subsequent writing effort, therefore, feels like it has been spent imposing some sort of structure on my original jottings… – although I am not convinced that I have triumphed in this regard.

Incidentally, I don’t think such an enterprise can ever be truly complete; but I hope that what you now see at least achieves its (now finalized) aim in taking “the stigma out of something that affects us all”. My mind and body are both worn out from over twenty years of (several different forms of continual, fluctuating but) insistent pain (and its comorbidities – which you will probably have already found scattered throughout these pages… – the neurological and physical damage which generates that pain; and the additional symptoms that this provokes). That my mental problems stem from the cumulative clout of these is fairly obvious; but, whatever their causes – for obvious reasons – here, I can only touch lightly upon the surface of their effects and implications: writing lines that you may be able to trace a finger between… – but that is all.

A year’s age on me
Twelve months ago, after my GP had given me that formal diagnosis of clinical depression (and a hug), I wrote that post, referenced above – trying to capture, to clarify, what such a verdict meant to me:

This time, though, it feels different. It is different. I am plummetting, Alice-like, down an infinite rabbit hole; and with very little to grab onto. And I know I have been falling for months – stupidly (and not because I was ashamed, or I would not be writing this…) because I thought that, yet again, no matter how deep and dark things got, I could still yet pull myself out of it, as I have so many times before – or at least work my way, on my own, to the other end of whatever it was I was going through.

But, although, a year on, I am still “falling”, I now feel as if the body which contains (whatever I now define as) “me” no longer belongs to (that) me; that it is actively working against me; that I’m constantly at war with it… – and am losing most of the battles. [In essence, that this shell of mine has enough chronic health conditions – innate, or purely medical (e.g. asthma; hearing loss); as well as those caused by being on the wrong end of a sequence of road traffic collisions (RTCs) – to defeat several ‘me’s. (A few days after writing this I realize that a more apposite metaphor may be that my body is holding me captive… – and torturing me – see below.)]

I’ll go walking in circles
While doubting the very ground beneath me
Trying to show unquestioning faith in everything

– David Sylvian: Forbidden Colours

I’m certainly not in control of my body (and its health); or, more importantly, of my life – which feels like it has very little meaning (by my normal, high standards): and my self‑actualization is therefore teetering on the edge of a cliff. (In fact, sat in the waiting room, I realized I was verging on becoming some sort of automaton: following the instructions laid down in my diary; my to-do list; my medication reminders, etc. – if necessary, putting on some sort of act, or front, when these were carried out in public – then resorting back to the blank-faced zombie mushroom I feel is the norm. Too many years of learning to hide all the physical distress has led to me becoming a natural at hiding the mental stuff, too….)

Headaches, neuropathic pain, vertigo, insomnia, etc. – and the resulting lethargy and mental fuzziness – seem to have the upper hand; and, after over twenty years of declining health (when I was in control, amazingly, for much of the time; and pushing back, for most of it – in fact, I used to be bloody good at this thing I can now only occasionally catch fleetingly in my peripheral vision…), I’m now struggling even to think about fighting. To be honest – to be blunt… – I’m not really sure who or what I am any more; what my relationship is to/with the world; and many of my certainties are therefore circling the drain. Basically, I’m sick and tired of being sick and tired…

  • of the constant pain weighing me down;
  • of the persistent cervicogenic headaches pinning me to my bed;
  • of the lack of physical and creative ‘oomph’; and
  • of the inability to live a life well-lived.

All in my head
The condition which has most impact – in that nothing currently controls/prevents it; nor can I be in any way productive during an attack – is migraine (convenient shorthand for what should formally be labelled ‘cervicogenic headache’: as this originates in the mess of neurological and structural damage in my neck – although the symptoms frequently include, or superimpose, elements of ‘traditional’ vestibular and hemiplegic migraines) – which is why it is the one condition my GP and I are focusing on (and have been for some time: especially as the buggas insist on continually increasing in frequency and intensity – linked as they are to the ongoing physical decline of my neck; especially its ‘wiring’):

  • I had only three or four days completely free from a ‘migraine’ attack in each of the last three months – in other words, this isn’t just “chronic migraine”, but near-enough permanent.
  • I had a ‘migraine’, effectively, for forty minutes of every hour: i.e. two-thirds of each month (whether asleep, or, more likely, awake) spent trying to exist in a world of intensely-painful fug, and seriously-reduced physical capacity.
  • The average duration of the thirty migraines I experienced in that time was around two days – although one lasted just short of six. [This is not (i) unusual; (ii) a life.]

And, yes, I suppose, this is one way of warning of/apologizing for my increasing lack of instant responses to demands placed on me; or replies to emails sent to me, etc.. But please don’t stop making or sending them! Although things are rather hit and miss, at the moment, I need to keep busy… – in the same way that I need to keep breathing. Just forgive me when I let you down… – but then feel free to nag me. Please…!

Lear’s shadow
It is only through doing such things that I’m (just about) managing to hold on… to something (whatever it is) – but, at the moment, only by the tips of my greased fingertips… – and aided through the love of my family, and the care of my friends (although I don’t like the obvious concern that I precipitate); as well as the fulfilment I gain from my writing (when I have the energy and momentum). This goes some small way to compensating for the (Marxian) loss of identity that resulted from me leaving work, thirteen years ago (which felt like retiring from a job I loved twenty-odd years too early); and obviously provides a small amount of ‘structure’. These are external things, however (things that are imposed). What I need is internal stuff (conviction, confidence, assuredness…).

To be psychologically well while physically sick involves the belief that your personal worth transcends physical limitations; you need positive self-esteem for true adaptation. This belief in your self-worth rarely emerges until what you have lost and grieved for stands second in importance to precious moments of inner peace and joy.
– JoAnn LeMaistre: Coping with Chronic Illness

Walker’s block
Whilst I believe I’ve been depressed (to varying degrees) for many years, it is only in the last two or three that such a state has become obvious to those closest to me. Before then – albeit with occasional setbacks (physical and psychological) – I had pretty much retained the upper hand: understanding my limitations; and working reasonably happily within them. (Although, of course, the grief for one‘s former able self never totally dissipates.)

But now, it’s reached the stage where (as my regular reader will have noted) I’m not able to relieve the resultant mental pain at all with my habitual long walks (which are great for my soul, even if somewhat ruinous for my body – although both only in the short term). Even my writing has become more graft, oft-times, than a labour of love: as I repeatedly wrestle for the right word, or lose sight of the end of a sentence before I even begin it. In fact, recently, it has almost become a burden, rather than the delightful, thrilling, rewarding pastime (and catharsis) it always used to be. But, so far, I have managed – just about – to keep going (although my productivity has also plummeted).

The two enemies
I know there isn’t a law which proclaims that all lives must be useful (or happy). But, because of all the above, I do currently see mine (as I do my self) as pretty much worthless – overwhelmed by pain, fatigue, and powerful medication – even in the face of generous approbation from those who comment on my blog (or other stuff): not to mention the unquestioning (but anxious) love of those closest to me. [Schopenhauer would probably say that it serves me right for trying too hard to find meaning and fulfilment… – but I know no other (Nietzschean) way.]

You’re always haunted by the idea you’re wasting your life.
– Chuck Palahniuk

Coupled with this, I know my priorities are all over the place, in striving to render it otherwise. However – and this is probably another key component of the “something” I cling on to… – I know that, somewhere, deep inside me, is a tiny, hidden (to me) bundle of resilience. For instance, with the astonishingly wonderful and patient assistance of IAPT, last year I managed to come out of the other side of PTSD. This horrific affliction stemmed mainly from the three road traffic collisions (RTCs) that are at the root of my accelerated physical degeneration; but also had its origins in the hate crime I experienced.

Coping is not ignoring. In fact, it is the opposite… [learning] to live with… pain in a realistic context… the beginning of a series of steps that give a sense of understanding and a type of control.
– Patrick Wall: Pain – the science of suffering

I have certainly become much less social, recently, and more anxious about socializing; as well as more withdrawn, generally (although some of this stems from me not wanting to impose my ‘miserableness’ on others; or to be seen in this state). Because of the hate crime attack – as well as worries about my health failing instantly and disastrously – leaving the house feels much physically riskier than it did. And yet I dread becoming a couch potato (which is where I feel I am currently heading… – and rapidly): because I am not the kind of person who is content to sit in front of the television all day. I have always been active, physically and intellectually (despite my increasing impairments); and this is where my satisfaction with life originates, as well as my enjoyment and identity.

In a nutshell, I am aesthetically motivated – whether that be by a long walk in the countryside (with or without my camera); an afternoon in an art gallery; an evening at the theatre, or in a concert hall; or writing about all these things (which can be therapeutic in their own right) – but I no longer have the energy or motivation to enjoy them as much as I did. And, even when I try and plan to – for instance, booking a ticket for the RSC (often many months in advance) – too frequently, my health will prevent me from attending. (A double whammy, if you will.)

Saṃsāra – “a cycle of aimless drifting, wandering or mundane existence”.

Now I come to think of it: this lack of foresight – of knowing what I will be capable of on any given day, even at any hour – is what makes my life so difficult; so difficult to manage. It is bad enough being disabled; but having a condition that varies (and rapidly) from the just-about-coping to basically-not-being-able-to-do-anything – a force ten vestibular and/or hemiplegic migraine rendering me incapable even of reading in bed (intelligibly, anyway) – is the most limiting factor of all. It is not only the number of ‘treats’ (wants) that get cancelled at the last moment, but necessities (needs), too: such as medical appointments. Just imagine going to bed, each night (if you actually get that far), not only not knowing how much (if any) sleep you are likely to get – anywhere between zero and fourteen hours; and on successive nights… – but what your physical and mental capabilities will be, when you awaken (having already ‘accepted’ that your life can never be as productive, pain-free, or as pleasurable, as it once was). Going back to what I said earlier: it’s like being locked in a cell whose dimensions constantly vary; and whose facilities (comforts) can be withdrawn at any moment – even for good behaviour.

Tunnel vision
Overall – although I know there are others much worse off than me… – I just feel overwhelmed…

  • because there are too many things wrong with me for me to be able to cope (although the decline has been reasonably gradual);
  • because these “things” now impact my life too much for me to make it meaningful, and give it the value I crave.

Finally, I feel as if I have failed: not being able to deal with this situation any more using my own inner resources; not even being able to see how to break it all down into manageable ‘chunks’, or what are reasonable risks to be taken (although I’m not quite sure where the tipping-point for the onset of this inability actually was…). [Of course, it doesn’t help that the world outside my window – everything I believe in, politically and morally – is going to populist hell in a ‘post-truth’, ‘alternative-fact’, handcart.]

I think the biggest problem is that I can only see things continuing to get worse (as they have done, generally, physically, ever since the first RTC, in 1996); and I don’t want to live the rest of my life like this (in a combination of immobile purgatory and fatalistic limbo…). The decline in my physical health has certainly accelerated in the last two to three years… – MRI scans confirming this; but not proffering easy solutions – although getting any answers, getting help, from the (physiological side of the) medical profession (apart from my GP) seems near impossible.

To learning much inclined
I go on about “the blind men and the elephant” a lot: meaning that the complexity of my problems requires a multidisciplinary approach – and yet so many (not all…) of the specialists I encounter treat me as a commodity, and narrowly within the confines of their own specialism: which is pointless. (What is wrong with the model of deductive ‘generalization’ as applied by a diagnostician such as Dr Gregory House?!) It doesn’t help that many consultants are quite (proudly) arrogant; cannot communicate (which was my highly-paid speciality, before ‘retiring’); and will never accept that a patient can be extremely knowledgeable about their own condition (even though, recently, this has meant that major decisions about my treatment have had to be made by me and/or my GP – which, although reinforcing our mutual trust, has brought both of us added pressure). Nor that they only want to treat you if they can cure you, and therefore log you as a success… – which, in my case, is not possible (and, therefore, immediately puts my wants and needs, and the consultant’s wants and needs, in conflict).

And then they have the temerity to blame the lack of a magical improvement in your health not on their blinkered inactions – but, once they’ve gotten wind of it, on your depression – twisting the knife yet deeper into your guts with their deliberate self-abnegating ignorance. (How many times will these people put the cart before the nag…?)

Traditionally, the experience of serious illness has been approached in two ways: (1) a gloomy perspective of resignation, self-denial, and helplessness, or (2) a Pollyanna approach that denies altogether that there has been a real trauma. Both of these perspectives distort and disguise the reality of chronic illness.
     The first perspective views the chronically ill person as a failure. This is the patient who does not respond to the “miracle” of modern medicine, and somehow the lack of recovery is often perceived as the patient’s fault. This attitude of blame accounts for some of the worst psychological abuses of patients by health practitioners…, an attitude typified by the too-frequently heard statement, “Stop complaining. You simply must adjust.” Unfortunately, the sick person may also adopt this punishing attitude toward himself or herself. Sadly, the word “adjust” too often means “resign,” “settle for less than a desirable existence,” and “surrender.” At its worst, “adjust” is just another way of saying “You are now a nonperson without the right to experience strong passions, desires, or fierce and unyielding hope.” All the anger and blame inherent in this attitude is misdirected: the patient rather than the disease becomes the target.

– JoAnn LeMaistre: Coping with Chronic Illness

What this is (probably) really all about is that A Decision Must Be Made. And Soon. But it comes with many risks: whichever way the coin falls. My depression, therefore, is probably – when all is said and done – a symptom, or representation, of my prevarication.

I know I need perspective – which I currently lack: my nose pressed hard against the framed glass of the bigger picture… – to make that decision. I also know that my ability to cope with my ‘condition’ is coupled with the gaining of that perspective. (I also know that I need to be in much better shape, physically and mentally, before making such monumental decisions – ones which come bundled with humungous amounts of jeopardy. And, although it may seem a little counter-intuitive, at first, if I’m contemplating a surgical intervention, say, that could put me in a wheelchair, it’s probably best that I’m already sat in it: i.e. that it truly is a last resort.)

So, I shall keep on sitting in the psychologist’s chair until I find the route-maps or tools that will get me there (probably helped by an encouraging boot to my backside) – presumably (as I’ve never done this before) improving my psychological wellbeing, so that I can go back to managing (what’s left of) my physical wellbeing; rather than reneging on my responsibilities, and relying on others doing it for me. If I can regain some of my former physical and mental activity, and approach both with joy (rather than fear), then I will be a very grateful, and happy, bunny. I reckon it could take a while, though….



As ever, your words resonate so much with me. I too have a Black Dawg and a swarm of Wasps of Anxiety that have destroyed my inner peace for the last 37 years. I wore a mask to hide it from the world, but the effort became too much.. Stigma and ignorance about mental health is still alive and well in 2017.

A broken leg means that I no longer have the solace of exercise albeit for a relevatively short time. The impact on my mood has been truly devastating.

Wishing you stamina and strength with your fight. Above, please keep writing. You speak for a lot of us.

Thankyou for your bravery and courage in sharing your story.

Snigel 1962 said...

I'll try again Steven. (Couldn't remember Google password when I posted before...)
I'm not sure that we've met other than via Twitter/OOTS but I'm proud to have someone with your courage and tenacity as a friend and yes, inspiration, as much of my own situation is a shadow of yours. Thank you for your superb writing and ability to articulate that bastard black dog.