The darkness of Chronic Pain: You are not alone

Sometimes the world is dark. Sometimes, I hurt and silver linings are hard to see. Sometimes I just want to write it out. Get it out. Tell the truth and share the pain. If only to shout into the ether, to other’s; ‘You are not alone! We all have pain! You are not alone!”

credit: desmotivaciones.es

credit: desmotivaciones.es

It weighs me down this cold grey ache,

Slips on the edge of agony,

And creeps down the streets,

flowing like stage-fog around swirling crowds.

Silently it pours down the beach,

My safe-haven, my go to place,

Its fingers call me and I try to run,

But the pebbles crumble and stop me,

Untroubled, the grey flows on.

It’s round my ankles now,

But I smile and nod,

Say I’m fine,

So the grey swirls higher…

Shut my eyes. Shut down.

Not here. Not now.

It stalks through the day

so much to do, so much to do

Lonely, unwanted and frightened

Selfish and ashamed

It smiles and creeps nearer.

In desperation I reach out,

put pen to paper.

My back aches, joints burn.

Nearly two years on,

My left side is still different to my right,

Tears have scared paths down my cheeks,

Pins and needles; my familiar companions

A hundred or more hours of learning, and still;

My back aches.

My back aches.

My back aches.

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Redefine Possible.

I’ve found it hard to start writing today. Procrastinating, avoiding… this blog has been such a source of comfort and support and today’s post feels a bit like a goodbye. It’s not, I’ll keep writing, but I’m getting further and further into the light…there is so much to see here that more often this blog is a treat, rather than a necessity for me now…

credit: David Butali on Flickr

credit: David Butali on Flickr

and breath and back up…this blog is basically a journal of my story so far. It does not tell it all, nothing can ever show all of something, but is a record of this time in my life… this post is a summary of where I came from and where I am now.

All my life I have been angry. Inexplicably furious, with my family, friends and most especially with myself. It tore through me, ripped at my heart and gauged out my eyes. Frustration is my best friend and constant companion. The world was confusing and scary. I saw things, I missed things, partial sentences a….the school……the ste….day…..away with the fa….what? WHAT WAS GOING ON?! I became the world’s best ‘Coper’ I hid my confusion, covered it up with lies, false smiles and forced concentration. I became so good at being un-confusable that even I stopped being able to tell it was a lie. I lied till I no longer knew my own truth.I held back as much anger as I could, often it boiled over leaving a trail of smashed plates and butter-dishes, dripping in shame and guilt. I sucked my thumb, I got blinding headaches and night-cramps. I curled up in bed and screamed silently into my pillow. I was fine. I was FURIOUS.

credit Mya

credit Mya

At 15years old, I was diagnosed with epilepsy. Things made sense. I simply had to take my ‘coping strategies’ up a notch and I was fine. I was still furious. But fine. I changed schools several times. When I left school at 18yrs the first pains started. A ‘neck spasm’, back ache, a ‘bad-position’. Slowly these ‘pains’ became more frequent. At 22, I’d had to leave to university places due to epilepsy related events, the pain got worse. About once a month my back would ‘go’. I’d have to take a week out. I started seeing Doctors. A few years later I was involved in an employment discrimination case. My Epilepsy became MUCH worse. Six months after this my back pain became disabling and chronic. That was a year ago now. I couldn’t walk, I couldn’t move. Scribbled on the top of a notebook dated 13/2/13 I wrote Please Please Please let me be able to hug my husband tonight…hugs where too painful… It is good to remember and write about this, it humbles me and reminds me of my strength. I started trawling the Doctors again. Drugs, epidural s and possible surgery where all on the cards. Slipped & herniated discs diagnosed. Endless physiotherapy giving only temporary relief. For months it continued. I was forced to leave a job I loved….days turned to weeks and weeks into months where I barely moved. Half my family live on the other side of the world in Colombia, a Dr told me long-haul flights where out of the question. I honestly thought I would never be able to visit them again.  I lost my trust in Doctors & surgeons. I started my own research….

FN

I found Liz Koch & Dr. Sarno, I learnt about TMS, I found Georgie Oldfield and slowly, very, very, exceptionally slowly I began to get better. It started with walking, just up stairs on my own to begin with. Standing in a shower on my own, doing the washing up, things I’d once taken fore-granted, chores became my daily achievements, my joy, my adrenaline-rushes. I started to learn about Mindfullness and Meditation and as I learnt I healed. I took less medication, for both pain and epilespy, I began to believe I could heal. I began to understand what living-in-gratitude really means. I started a gratitude-practice. I transformed my life, from the bottom up. I moved house, I changed my priorities and focused whole-heartedly on a holistic vision of what it means to be healthy in every aspect of my existence.

Credit: Monique Willemsen

Credit: Monique Willemsen

A year on from finding out about TMS and I have just returned from a trip to Colombia to see my family… This trip  involved, jet-lag, walking, carrying, hiking, immense heat, altitude, sitting down for long-haul flights, 24hour journeys, dubious foods, a language barrier and medicinal differences. It is one of the biggest achievements of my life.

It was not entirely pain free and as I type I have some sciatica, but I am working on it. I believe in my ability to heal now. I never thought I’d be one of those people on TMS forums posting success stories, but here it is! If you are reading this and have chronic pain, I want to say to you even when it seems impossible, even when you are TOLD it is impossible, it is not. I’m the proof. I’m grateful for the opportunity TMS has given me to learn about my body, for the chance I’ve had to change my life and I am confident I will continue with more health and happiness than ever before. Thank you for all your support. One Love.

Happy with my shell and my life!

Happy with my shell and my life!

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Meeting an angel or two!

My words are falling over themselves again today and I don’t know where to start. I’ve been busy over-excitedly-BETTER, I haven’t had time to meditate….I haven’t journaled and I haven’t practised movement/yoga. ……………………………….I’ve been rushing and studying, writing, working, preparing for a big trip.

Unsurprisingly, to anyone following this blog, I am now in pain. It started in town, a nudging ache clawing at my spine, niggling my legs and nudging at my stomach. Ignore, ignore,ignore, went my body cope,cope,cope, went my mind, fear,fear,fear went my heart until at the bottom of the hill which leads to my house a full on panic-agony-crippled-session took hold.

My back seized with every tentative step, my rucksack felt like it was burning into my shoulder blades. Tears began leaking down my face, make-up streaming. I clung to the walls and inched my way along. I looked up and thought I literally cannot do this. I can’t. I thought of people I could call, but everyone’s at work and I would only worry them. Without a choice, a crawled on. Holding in the sobs, trying to breath. People passed by, embarrassed, I leant against the wall. A lorry reversed loudly and I jumped, pain ricocheting through me.

I thought I was going to pass out…..the world spun, tears streamed……….Are you OK? Two voices asked. Wiping my eyes, I saw two girls, complete strangers smiling worriedly at me. Can we help? 

faith

credit: weheartit.com

I gratefully asked them to carry my bag up the hill.  In that moment waves of panic and pain washed away from me. With thier words great swathes of stress just dissapeared. I was not alone. I could make it up this hill! I was OK.  They then accompanied me painfully slowly all the way to the top. Slowly we made it up the hill to my street. All the way they chatted to me and distracted me. Never once making me feel slow or stupid. They restored my faith in humanity but also my faith in myself.

Angels

credit: Jane Lee Logan

It was all such a blur and I’m so exhausted now that I can’t even remember their names properly. I think one was called Jess. If they read this I would like to say. Thank you so much, I hope you know how great you are! You lightened my day in more ways than you knew and reminded me that there is hope and love in the world! Also please come round for a cuppa sometime as I think we must be neighbours and I always like new friends!

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Loneliness

Over the last few days I have been extremly saddened to hear the news about how Loneliness has become an epidemic in the UK. The statistics are grim and heart-wrenching:

  • According to Age UK, 450,000 older people face Christmas alone this year
  • More than half of people over 75 live alone
  • About 5m people consider TV their main form of company, according to The Campaign to End Loneliness
  • Over three quarters of GPs believe up to 1 in 10 of the patients they saw in a day were really attending surgery because they were lonely, a poll of 1,000 found

alone

How has it come to this? I recognise that society has changed, We no longer live in the same streets we were born on, with gran and grandpa next door. I live 96miles away from my Granny…I can’t just pop-in. Nowadays people travel more, generally we no-longer have jobs-for-life, family’s no longer operate like-the-Jones-married-2.4-kids-at-school-their-parents-went-to. That’s all well and good, but these new found freedoms have come at a huge cost;- the wellbeing of those most vulnerable.  The fact is we will ALL be OLD one day. That is life. We cannot avoid it and in my oppinon it is completly shameful that society seeks to hide old-age away.

Patience is not sitting and waiting, it is foreseeing. It is looking at the thorn and seeing the rose, looking at the night and seeing the day. Lovers are patient and know that the moon needs time to become full.

Perhaps the reason I feel so passionatly about this is that this year, I’ve learnt one or two things about loneliness myself. When I first became house-bound with Chronic back-pain we were living in London….it is hard to write about loneliness because…to admit to being lonely, seems very selfish and very needy. Especially when you do have people who love you who try their very best for you and you don’t want to hurt them…….it’s so hard infact a tear has crept down my cheek as I type this………….but I want to type this because…it helps…it’s my truth and maybe it might help others realise the reality of loneliness…

alone in city

During those grim London days, before I began this blog, I would force myself to wake up when my husband went to work, I’d set the day out in 30minute slots…going to the Doctor became an ‘activity’ around which the rest of the day spun. Phonecalls were the highlight of my day. I tried to always have something to tell my husband that I’d ‘done’ when he came in…. it was hard and basically I spent alot of time ‘waiting’….for the post, for the phone, waiting to see the sunshine through the window, waiting to loose my pain.  In a big city, friends can be hours journey away and if you’re not very mobile that might as well be the other side of the world. It was largely down to Loneliness that I started this blog. I was desperate to interact with people,  to have company in ANY FORM. The week I started blogging I remember feeling SO MUCH better in every way. I had something to say again and best of all, through technology I had a way to connect with other people, even if I was house-bound I could at least regain some social life, if only online! Human beings are social animals it is no surprise that when we are socially isolated our health declines, sociability is part of what being human IS.

friends

Taking the positive path (the PP!) I think it’s great that Loneliness is finally being discussed at a National Level and awareness is being raised about the issue. Personally, I think a little kindness goes a long way – if you have an elderly or sick neighbour why not ask if they’d like a cup of tea with you one day? 15minutes of your time is nothing to you but could be a lifeline to them. If you would like to get involved further check out Campaign to End Loneliness. I have just applied to volunteer a couple of hours a week to help older house-bound people to use social media. OH YEAH BABY! Wild times!

be kind

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