All posts by j0hooper

When, oh when can I finally speak the truth?

I am tired of hiding who I am and what I experience, of pretending to be ok. I don’t want to be one of those miserable bloggers, but just this might be the place to finally scream – “This is who I am and what I suffer with! This is what I experience and what nobody ever seems to understand because it is not logical or appropriate”. It’s tiring to pretend everything is ok when each week fear takes my breathe away, each week emotional pain gets too much to bare, each week tears convulse my body and I can’t find a way to feel safe. So tired of putting on a brave face, so tired of feeling ashamed of myself, of battling low confidence, of feeling so awkward with new people and even more so with old friends who are wondering why I haven’t moved forward or got a new job or found a partner or any o the other simple things they take for granted. Exhausted with feeling like a waste of space because this beast of a  disorder controls my life, being unable to just have a little fun and adventure because I’m so afraid of unknown situations I have to carefully plan everything and make sure I have all my coping mechanisms to hand.. Unable to let my hair down or stay up late because sleep deprivation means I cannot self-regulate and leave my defences down to trauma which will undoubtedly rear  its ugly head. Sick of being unable to speak the truth to my friends about how awful I feel, because I don’t want to be a burden, or seem weak, and I know that others’ problems are worse than my own, and because I am  disgusted at myself and fed up of always being the weak one in need of support.

And why? I need not. It should not be doused with shame for there is physiological fact behind the matter: My Amygdala dysfunctions: I have PTSD symptoms.

I always say that we need to end mental health stigma as a society; yet I cannot seem to end my own stigma against myself and speak freely and truthfully about who I am right now, or like the person I’ve become.

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Crabs

He said, “Close your eyes and think of the sea,

And the night the crabs visited you & me.

 

The sun had set, as romantic as planned,

When the crabs emerged from small holes in the sand.

You spotted them first and you squeezed my hand.

First there were 10 or 12, then 30, 50 or more,

 

Suddenly, the nocturnal gathering covered the shore!”

She said, with closed eyes, “I remember that night,

How bold they were and how ready to fight,

– When you threw a stone, they attacked it raring to bite.

 

That towel became a safe haven where we would remain,

In the wilderness, trespassing on nature’s domain.

Trapped on our cotton island for hours we stayed,

Huddled close, in awe of this amphibian parade.”

Continue reading Crabs

Beyond a fragile body

These days, I am tired of old friends swiftly following their greetings to me with the concerned question: ” How is your back?”. Obviously, I am actually very appreciative of having such kind friends and would have found myself lying horizontal and immobile and starving and thirsty at some point were it not for them 😉   But the point I am making is that chronic pain sufferers are much more than that! I am sure healthy people get tired of listening to those with long term health conditions go on about the state of their bodies. But deep down, with some thought, they can appreciate that it is easy to become obsessed with our condition, or slave to it, simply because it can control our lives and activities much more that we’d like, and of course this can affect our identify, self-confidence and enjoyment of life.

But, please everyone out there with a long-term condition, remember that we are so much more that our condition! Inside fragile bodies rich identities are to be found, multi-layered people abounding with talented, beautiful souls.

Grateful To(o)

Grief assailed me, unawares,

As much as I was unprepared,

While (much less) people (than imagined) stared.

A fountain outside became a memory,

Becoming another fountain inside of me,

A force so uncontrollable, from a depth so inconsolable,

Unreachable through human touch.

A violently tender expulsion, channelled through trembling shoulder convulsions.

Alien energy rose from my gut to my chest,

And clamped it hard, each breathe short and jarred.

Grateful I was, to the hard wooden bench I sank onto;

Grateful I was, to the anonymity of this urban London square,

where couples immersed in embrace,

dog owners were lost in chase,

and focused fitness regimes followers flurried and hurried past.

Grateful I was, to the squirrel perched on a stone.

Unaware, unaffected: Its preoccupation with survival itself a comfort.

Grateful too, for the incessant sound of the fountain,

Monotonously speaking its constant purpose:

Water forever lost and replaced; uncatchable, in the eternal flux of chase.

3 Simple Pleasures

When you are forced to slow down;

When you cannot do all the things you desire;simple pleasures quote - Wilde

Yearning and pining will only bring a frown…

But beauty and joy still abound, when to simple pleasures I aspire!

Today, what little things brought me a smile?

1). A van covered in a Virgin Media logo stopped to let me cross the road – this was unexpected from a vehicle with such a corporate, loaded name on it. But what a great reminder that there was of course a nice guy inside, doing his job like we all do, and moving slowly enough through his day to be aware of pedestrians around him. Nice.

2). A young woman climbed out of a red Royal Mail post van, wearing the obligatory red T-shirt (her uniform), and also with matching bright red hair! Made me chuckle. So dedicated to her job? A good injection of bright colour into my day.

3). Conversing with my cat (not in the same language), but we managed…Simple-pleasures

I even have a 4th,

Continue reading 3 Simple Pleasures

Not Learning from our Mistakes

Last week, I came out of an evening class just a few minutes too late to catch a bus home, and had to wait a long 40 minutes for the next one. My back ached as I had had an active day; misbehaving nerves were making my glut muscles pulse and twitch unpleasantly, and the chilly autumnal temperature wasn’t helping. Consequently, fatigue entered centre stage, and an accompanying mental gloom which spread into the next morning, as well as negativity and a moan about the public transport frequency to my housemate when I finally got home.

So: This week, I remembered the bus times and asked to leave the class ten minutes early so that I could catch it. I did, and with the extra time and energy which the stress-free, earlier return home blessed me with, here I am writing this post!

It struck me that it’s so easy to learn from a bad experience and make it better the next time around. Because let’s face it, we are always striving to make our lives easier and more comfortable for the most part.  This has been a familiar thought pattern of late, as I continuously endeavour to learn from bad, debilitating episodes of pain and figure out that reoccurring question: What triggered it this time? What did I do wrong?  – Of course with chronic pain, you can keep guessing and experimenting and trying different postures, remedies, treatments and medications; you can try to analyse a relapse all you want and see what happened, but it is impossible to completely guarantee avoiding another relapse or another bad, painful evening/ day/ week.

I feel I am constantly, each week and each day, having to balance my levels of activity, my working hours and my rehab exercise regime. Am I doing too much? Am I too inactive? Must keep mobile… must not overdo it.. must not rush about.. 

I am wondering if these seem like familiar thoughts and questions for other people out there? Maybe you’ll agree that it is mentally tiring, all this balancing and planning and pacing. So I am trying to accept that I won’t always get it right, or make the ‘wise’ choice for my health. These days I don’t bother over-analyzing a painful episode, even though some level of asking “why?” and trying to learn from mistakes is inevitable and in built in me it seems! The analysis can lead to beating myself up about it – – –  *Cue: That was really stupid! Why didn’t you listen to your body?* – – – In fact, worrying about the cause and berating myself for making a mistake (or sometimes enjoying myself too much, to phrase it in another way) is a wasting energy which is better spent on healing, and on doing the right things to ease the pain and bring relief.

With chronic pain, I am learning that it’s a matter of managing it as best I can, and accepting that I can’t necessarily always learn from a relapse (or consult any bus timetable to predict it!), but at least I can become more aware each time of how I react and how this might be making it worse. Reflecting on the bus stop misery last week, I am pleased to say that I didn’t beat myself up for not looking up the bus times in advance! 🙂

Night-time Brain Storm [a poem]

Another set back;
Another shake up;
Another break down… What happened?

The answer lies in the prepositional verbs: ‘Back – Up – Down’
Not steady but hurled around;
On life’s rollercoaster.

My anchors were not firm,
Under waves of emotion they squirmed.
I try to breathe, return from mind to body as I’d learned.
Let the ripples be superficial;
Ground myself, stay steady, don’t cripple;
Try to be solid like the Zen stone;
Impermeable to weather: never roam.
But no:
There’s nowhere to rest, no sense of home.

Now the waves grow taller, the winds turn to gusts;
And my anchor shifts, weakened by rust.
My roots, thin and feeble, had not yet entrenched themselves into the earthy nutritious networks;
Not yet reached that rich layer of resilience and resources.

So the battle’s lost.

All perspective’s gone, whisked into whirlpools of worry;
All rational replaced by recklessly rampaging self-criticism,
And threatening high tides of cynicism.

stormy sea

I abandon my mind to the high seas of self-pity;
To be tossed into turmoil, tugged at by illusions of alone-ness and capsized by catastrophic untruths of my inability.

Until…

Negativity’s had its fill.
And in the morning’s balmy light,
The calm after the storm comes into sight.
With relief, it dawns that the set-back-shake-up-break-down,
Is nothing more than a thorny crown;
Now gently detaching from me,
Becoming,
As day unravels, a blurry night-time memory,
Persisting only in the stiff corners of my body.

Now leaving the bedroom fog;
Leaving the set back to reset;
Leaving the shake up to up-rise,
Boarding the lifeboat of morning with new eyes.

Now making a cup of tea,
Maybe step outside and try to breathe:
Up, down and back in normality.

Back Set Back [A poem]

Oh, there you are again
That old chestnut, that niggle, that pain.
I just thought I’d do some shopping, get my haircut-
Like normal folk do, –
Of course… I forgot – That would remind me:
I’m stuck in a rut.
Even dreams and ambitions now cut…
By you.

Despite precautions, carefully planning how to manage the day;
Pacing myself to keep you at bay,
You’ve sneaked in again, uninvited, literally through the back door,
Which I left unguarded today,
Since painkillers have their flaws, and rest becomes a bore.
Today, all I wanted was to walk home from work.
The sun was shining, birds going berserk.
A gentle half hour’s stroll, not too much to ask…
But after 10 minutes you assailed me.
You sent bees to sting my lower spine;
You pressed your claws into my muscles, already tight and confined.
I defended myself with deep breathes, musical relief on my headphones.
But you struck again! Jarring joints, buckling bones;
Pelvis now misaligned;
And so I resigned,
Myself, as you rugby-tackled me onto my back, and lay on a park bench to rest,
Even though I must have looked like a tramp making a nest,
In her Sunday best.

Enough?

Oh, there you are again!
I guess I should try to makes friends;
Since you persist in hanging around, since we’re so intimate now.
Try to accept you; Not fear you but face you,
Not numb you with ice but try to embrace you.
But your unpredictability doesn’t make it easy.

When you cling to me, even small tasks make me feel frail;
Short distances appear to be of Himalayan scale;
Even the pub is an ordeal – No simple pint of ale;
For I am distracted from the conversation by your incessant WAIL!
You’re like a nagging wife, reminding me not to sit there too long;
Well I’m tired of fighting back with drugs;
I don’t feel so strong.
And then, when you’ve got me vulnerable, you chisel at my confidence;
Make it hard for me to belong.

Ah, it’s you again:
Restricting my body, grey-tainting my brain.
It’s been over 2 years now, that you’ve been haunting my life;
Like a gloomy spectre intent on turning my fun into strife.
If I so much as think of advancing in life;
Of planning new ventures or channelling energy in some fruitful direction…
You slap me hard.
You make my body feel beyond correction,
Unleashing inflammation like an incurable infection,
Immobilising me with your vertebral dissection.

Ouch!

Oh, so you’ve returned… Yet again.
What else can you take from me?
There’s nothing left to drain!

You took my career and prospects, my sources of joy, my groove –
Once-upon-a-time, I could really dance –
My travel bug, my fitness, my chance,
Of romantic bliss; Urges to bear children gone amiss;
Plus my energy, my future plans,
And
My
Freedom.

Pain, oh omnipresent pain!
I know, some people have it worse, I should not complain;
But let me keep my sanity;
I’m begging you for 2 months’ break,
I cradle my dear old brain.

But I’m too young to have a slipped disc? Making sense and being content.

A cluster of lanterns was visible from my window, drifting gently upwards in the night sky with no direction. They must have been propelled by the joyful energy of the people below, the will of their eager launch parties, and the magic of Loy Kratong festival itself, for there was  barely any breeze on this stifling tropical night. Raising myself up delicately to look out of the window, I gazed longingly at the beautiful spectacle of orange constellations ascending gradually like lost, sedated fire flies. I was alone and house-bound, trapped by disability on the first-floor of our town house and unable to join my friends out on the streets.

Launching a lantern from my balcony.
Launching a lantern from my balcony.

Loy Kratong was due to be one of the highlights of my time in Thailand; I had planned to travel with friends to enjoy the festival in one of its best manifestations (at Sukothai) and drink in the wonder of a skies and rivers full of light. But then, at age 28, while absorbed in the fascinating complexities of life on the Thai-Burma border and involved in gaining career-advancing experience, I had found myself in great pain resulting from a prolapsed disc (commonly known as a ‘slipped disc’)  in my lower back. The day I realised something was seriously wrong was not long after a trip to Laos to renew a visa, during which a cycle ride down long gravel paths had caused me to experience severe shooting pains and jolting sensations in my back; As I sat in a meeting at the UN refugee agency listening to discussions on displaced populations, I found myself distracted by the feeling of something being displaced in my own body! I had been ignoring the grating sensations in my right lumbar area for a few weeks, caught up in the bigger issue of the 7,000 Karen refugees living in temporary self-built camps along the border whose rice rations would soon be depleted. But now, even trying to walk or sit felt completely… wrong. Perhaps that’s not a helpful description. But it wasn’t just painful, but simply wrong, out of place, disjointed.

A 'krathong' (made from banana leaves and coconut) soon to be lit and floated on a body of water.
A ‘krathong’ (made from banana leaves and coconut) soon to be lit and floated on a body of water.

I did not receive the best advice from the doctors in that small, frontier town. Instead of keeping mobile, which is the current mantra for back pain sufferers, I was told to take bed rest for 4 – 6 weeks and remain as straight as a plank. This advice generated a cautiousness  in my movement, frightened of making a wrong move which might impede healing. But amidst the obvious frustrations of being house-bound for a whole month, and the uncomfortable dependency on friends and my boyfriend of the time to bring me food and water each day, a niggling question kept arising: WHY and HOW did this happen?

Thoughts:

 – I am only 28! Isn’t it only older people who get degenerative discs?           – Slipped discs are also caused by accidents, but I’ve never had one! A bumpy cycle ride isn’t brutal enough in impact.                                               – What is wrong with my skeleton? My bones must be deficient in something?                                                  – I must have had horrendous posture all my life? (unlikely, I had an athletic, active youth).

Continue reading But I’m too young to have a slipped disc? Making sense and being content.

“There is more wisdom in your body than in your deepest philosophies” — Friedrich Nietzsche

“There is more wisdom in your body than in your deepest philosophies.”

— Friedrich Nietzsche

I really wanted to share this quote from Nietzsche because it sums up the one of the most important ways in which chronic pain has changed my way of thinking; Namely, that instead of relating to my body as a mere vessel which carries me through my daily activities, a tool for getting from A to B, or a vehicle which serves me in my quest to enjoy life, achieve personal or professional goals and seek pleasure and joy, I have started to contemplate it as a source of wisdom and guidance too. Medical professionals will attest that pain is a warning sign (most of the time.. thought not always, as chronic pain sufferers will know!), but I’ve begun to wonder how much more our bodies can tell us when we really learn to listen to them.

This is, of course, no easy skill to master! Even after a year or so of trying to learn to listen to my body, I still get caught up in the excitement of the moment, or the hectic whirl of endless to-do lists and before I know it, I am multitasking before breakfast. I can get far too engaged in making plans for potential fun, without even consulting the very tool which will make them possible, without even checking in to see how it might be doing today… And when awareness is lost, my mind has disconnected from it’s vessel. It’s as if the driver has forgotten about the very vehicle he is maneuvering!

Of course our bodies are wonderful things. Our nervous system is so sophisticated that, once we have learnt how to do a task, we don’t have to think about it. This leaves the mind free to busy itself with other things. While we tie our shoelaces we can be planning our day, while we brush our teeth we can be rehearsing a conversation soon to be had in our minds. It’s quite incredible really! But the mind can get so busy, that it assumes that the body will run on auto-pilot and fulfill all the tasks it demands of it without much guidance. And that’s when accidents can happen and body parts move wrongly. No-one would leave an aeroplane flying on autopilot without checking its parts were working they way they should quite regularly.

 

Motoring on without inner vision
Motoring on without inner vision

Fortunately, and cleverly, pain or tiredness or some other warning signal pops up to alert the mind when something is wrong. But I began to learn what other, more subtle things we can learn from our bodies, from their groans and complaints, from their energy spurts and their deeper channels. As I become more interested in the phrase, the ‘Mind-Body connection’, which I’d heard before and not really understood, superficial exploration revealed that, aside from the obvious practices developing and utilising such a connection, like yoga and meditation, there were many others. Knowledge systems used in acupuncture and shiatsu massage also recognise the wisdom held in the body, in the form of its meridians or energy channels, while the Western movement theories of Alexander Technique link mental states with postural habits.

While I have not yet completely bought into the affirmations of Louise Hay, I have begun to believe that our mental states affect our bodies a lot more than we realise, and to see sense in the thought patterns she diagnoses behind our various  ailments (i.e. the physical manifestations of these thoughts). So over the last year, I have attempted to become more aware of my own life rhythms, energy patterns and mind states, and their effect on my physical well-being, as well as vice-verse. I’ll try to share some of it here, in case others out there are wondering if there is more to their pain than the physical malfunctions and flaws. Despite this, I am definitely not ignoring the musculoskeletal causes of my injury, or advocating that anyone stop doing those core exercises which the physiotherapist instructs!