All the Rage

On my journey with  TMS, one of the most challenging aspects has been watching others suffering and knowing that if they only understood the science of TMS,  it could help them too. Watching people you love suffer and knowing that just a few incredibly simple, scientific facts, could remove their symptoms is torturous. I hope the contents of this blog do a little to change that, open minds and change opinions.

credit: cure-back-pain.org

credit: cure-back-pain.org

I fear that this sounds arrogant and dogmatic; but I’m not talking about belief, or religion, or even possibilities. I am talking about rock solid scientific facts, that people simply do not know exist. To me it seems akin to when people once thought the world was flat. Now, no one disputes that this planet is, in fact round. TMS is the same. Learning about it will change your life.

credit: beautifulurself

credit: beautifulurself

At the moment instead of accepting TMS as fact; people say ‘ah well that alternative-approach helped you, it wont help me’ etc. and whilst I fully appreciate that everyone is of course different, TMS treatment is not ‘an approach’. It is scientific fact. No one would call the penicillin break through an approach. It was a scientific breakthrough seen as a fact which saved lives. The TMS diagnosis is, to my mind, the same. Until the majority of humanity starts to see it as such, we are going to continue wasting time, money and energy on mis-guided attempts to manage pain. And the world will ultimately remain full of people in agony. The Science of TMS will put an end to the epidemic of chronic illness, if we let it.

With that in mind I have been incredibly excited to see a new documentary being made to bring worldwide attention to TMS; ‘All the Rage’ Ten years in the making, All the Rage began as a profile of  Dr. John E. Sarno, the Doctor who is credited with discovering TMS and it has expanded into an exploration of the connection between our emotions and our health. This film has the potential to shift the discussion about healthcare in a profoundly positive way. If you like this blog, would like to learn some simple science and potentially change your life, check out the All the Rage Kickstarter Campaign and help spread the knowledge!

by: Nattycakes

by: Nattycakes

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Back to the sea

Today I went back to Body Psychotherapy, and fell once more into the sea . It was tough, and now, I’ve hardly written a word of my book – my ‘real’ work. My brain is numb and exhausted, my head sick and stuffed full of concrete. I feel like crying or throwing up, maybe both. Maybe nothing. Writing to unlock, to discover, to be who I am. To focus and breath. To show up on the page and exist in this moment. Here.

therapy

 

Today I acknowledged all that I have done and the way I have come. I saw it, and yet at the same time spotted that the summit is still up ahead. I saw it through the mist and fog and thought perhaps I’d reached it, but I know it’s not quite there yet. I see now there’s another rock face to climb, one more stone slab to scale, but the top’s in sight. I’m not sure how to articulate it but at least I see it now. The climb infront of me awes and terrifies me.

When I was growing up I used to surf. Well, I used to try! I wasn’t very determined, I didn’t much enjoy the cold or getting beaten over the head with my board, falling onto rocks in shallows, spun and held down by churning water. I didn’t enjoy the too-cool-for-school older kids who acted like they’d been born on a surf board; bleached-branded-teenagers who treated the waves as if they were their private property, which I was not worthy enough to enter.

enough

Despite that, what I do remember, of those rare minutes, when I caught a wave, stood, felt the ocean beneath me and looked ahead of me, is the feeling of being totally in the moment, of achievement, of pride, of simply being part of the world, in the sea and happy to be alive! A feeling of sheer joy – followed up usually with a slap of freezing-english-sea reality, as I crashed undignified off the wave, face-first demonstrating my superb sand-eating skills! That moment, that feeling of being consumed by the moment, and absorbing all of the world, is, I think, what I’m still seeking. I’m still holding something that’s stopping me getting it. Something I’ve put up walls around and buried so deep I don’t even know what it is. Something hidden deep amongst my chronic pain, epilepsy and PTSD, something that I have yet to name. Yet to eyeball. Something that still burns with fury.

I didn’t continue surfing; blaming time, location but mostly lacking in courage. But I never lost my love of the sea, and still today the beach is where I go to calm my mind when all about me seems to flame and burn. After all these romantic thoughts about ‘chasing-the-moment-maaan’ I thought perhaps I’d like to get back into surfing – well as ‘in’ it as I ever was! So this afternoon I geekily tried out a little surf-warm-up at home……… and now words fail me… what I discovered was; my arms are currently so weak I can hardly push myself up, my legs shake when I jump up (pop). And my body’s breathless and sick after just three attempts! Am I really that unfit?! Potentially. Or is this TMS whispering ‘unfit-loser,unfit-loser,unfit-loser,unfit-loser,’ into my ears? Either way, I know this much, being fit is something I crave. Getting back out in the waves, is my new target. Something realistic, achievable, that I’ve done before and can do again.

paddle quote by Nat Young

…………………………………..

Thoughts on ‘Disability’

You say; You have to take these drugs or else

I say; Or else what? I’ll hurt myself? Others too? Surely it’s my body, my choice? No?

You say; I thought you were ‘better’?

I say; Better than what?

But you don’t look sick.

and you don’t look stupid.

But you’re disabled

No I’m human.

But you’re not normal.

but neither are you.

But you can’t drive a car

I could, of course I could.

Oh yes, my sister’s-lovers-boyfriend’s-dog’s-budgie had that

…a four letter word to you!

You say; Well get better soon.

I say; There is nothing to ‘get better’. I am human, You think I’m broken and fucked up but I am great, I am perfect. I am just like you. I am how I am meant to be. I am wife, sister, daughter, friend. I am writer, cooker, painter and decorator, I have scars inside me that you can’t see. I bet you have some too. Rule-makers have labelled my scars and put them on a list. I’m not sure why, perhaps they’re scared. People are scared of what they can’t see. But you don’t need to worry my scars don’t need labels, they are just there and they help make me, me.

ability

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On Flare-Ups

As crying places go, I think the shower’s pretty high up on my list. In fact I think it might be my number one spot! You’re alone (generally!), you can’t hear your panicked heart over the jet of the water, your tears are washed away as soon as they appear and the heat is pretty damn soothing! So yes, cry in the shower, it’s a good plan.

I haven’t done very well with #30grateful days – I’ve done it but I just haven’t posted it, not sure why. It just seems kind of dull, repetitive, important but not sure I need to put it up here so, I haven’t.

To get back to the shower. I spent so long in there this morning, that my fingers shrivelled up, I think that’s quite a feat! Pruning often happens in a bath, but a shower?! Anyway, it was good. Wasteful on water but  I needed it. Pain roared in my lower back and sciatica burnt down my legs, twisting and pulling, churning shit in my stomach and squeezing panic in my heart. Is it back? Is this it? Am I house-bound once more?

I knew when I got the call that my Grandfather was in intensive care that I needed to take extra care of myself, knew that I needed to focus on me as well as the family. I knew, the consequences if I hid it, or tried too hard for everyone else. I knew. So I journalled and I meditated and a spoke to myself kindly. But I still had to come, wanted to come, to sit by his bedside as he stares blankly into space, unseeing, gasping for oxygen, frail body plumbed with wires, to make sure he wasn’t alone in potentially the final days. And yet when they asked ‘and how are you? How’s your back/pain?‘ I responded ‘Oh fine, totally ‘better‘………………………….and the world stopped and the totally gone pain screamed up my leg and burnt into my spine, making me gasp in shock and panic.

no use

I want to be courageous, I want to be honest. I want to be there for them, for everyone.  I’m not exceptionally sad that my Grandpa’s dying, he’s an ill old man, it’s time. But, for anyone, this would be a stressful event and others I love are hurting. I see that. For me a compounding factor is PTSD from epilepsy; triggers are everywhere in hospitals, but I hold it in. Sometimes, I don’t even realise I’m fucking holding on until it’s too late.

PTSD

My well-trodden neural pathways light up like runway beacons ‘stress, stress, stress’ they bark out across my internal PA system. Oxygen  molecules collide and are stopped by the pain-police ‘Closed-for-maintenence’ reads the sign at the entrance to my back muscles. Oxygen sits by the sign, gets bored and leaves. My muscles scream and pound my spine ‘come back, come back’. But the oxygen’s gone and the stress alarm blares out a bit louder now and I writhe in agony.

image credit: Variér - Panda & Leopard

image credit: Variér – Panda & Leopard

This seems to be the pattern with my TMS / Mind-Body Syndrome / Stress Illness. I get pain, I understand, academically, intellectually WHY, I have pain, but still, I have pain. I take Paracetamol, PARACETAMOL. It’s like trying to stop the Nile with a band-aid.

However I am reminded of what I know and I know that pain is merley a symptom. The root cause is in my mind. If I can reach the source, remove the ‘closed-for-maintenence’ signs, oxygen will return, pain will subside. I can and I will, I can and I will. Today I am going to the hospital later.

First to deal with the matter of keeping myself walking; I journal, I properly let it out, I face the PTSD and I speak kindly to myself. Something I often forget to do, that really bought on the sobs, that was in the shower, being kind to myself. That was good. Then I got some headspace in and Constructive Rest and now I’m blogging. It takes time, focus and determination. But I do feel better, I feel like I can do this, that I will do it. That each time I have a flare-up, I learn more. Eventually I will learn how to avoid pain altogether, I’m still just learning and for that I am grateful. I am grateful that spending days in hospital gives me the opportunity to not only support my family but to learn about myself too. The more I learn, the stronger I will be.

still

If you are reading this and on your own TMS/Mind-body/Stress-illness journey, I’d love to hear from you if you relate to this. #ChronicPainWarrior

be kind

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Down the road with a freedom pass

The path behind me stretches so far I can hardly see where it started, way back up there, somewhere, shielded by the clouds and the grey, I now find myself in the sunshine looking back at the mountain I have been scaling. I never thought I’d be here and yet there’s still so much to say, the end is still not in sight, I’m not at the bottom of the mountain, just a ridge further down. The peak is conquered but sea-level’s a lifetime away yet.

The bus pulls up and I grip the card in my pocket, my hand clamy and warm, I cover it with my palm as the que jostles and shoves past, bags and buggies bump against my legs and I’m caught in the tide, propelled up the step. I pull out the card quickly, sweaty hand over the purple-give-away-cardholder, I look down, don’t-make-eye-contact, I try to swipe-and-walk. It never works. Bleeeeep. The red light flashes.

freedom

Lets see that the driver growls. A woman sighs behind me as the que starts to grow. I feel my ears burn. He peers at the photo of me on the card and then back up at me. It’s an old photo, I don’t have a fringe in it. I can see a spot on his unshaven chin and dark circles under his arms spreading across the bus company shirt. My stomach churns.

hmmm any other ID, drivers licence? Silently I pull out a library card.

OK he grunts and I hurry to the back of the bus. Holding in scalding tears, my heart racing, blood boiling, RAGING. The ‘Freedom Pass’ they call it. Some ‘freedom’ this is. I’d like to see them try this freedom on for size. The anger bursts out of me as Chronic Pain and the TMS strikes with a vengeance.

The scene changes. Another day, I’m sitting around a table, lunch has been eaten and the table’s heavy with empty satisfaction and stuffed faces smile all around, friends and family catching up. A good space. A safe space. Someone is discussing the cost of living;

well, that would be OK if it wasn’t for the price of the bus nowadays. A chorus of agreement. Wanting to join in, be included and give my two cents I say well at least that’s not an issue for me, I’ve got a freedom pass. I grin. To make light of it. Silence falls so loud I can hear my heart thud.

All heads swivle in my direction, all eyes bulge. What?! Why? You LUCKY LUCKY THING! FREE you mean FREE you get to go on the bus for FREE?! That’s SO unfair! INCREDIBLE! In this room I am loved. I know I am and yet even here I see that equality, equal-opportunities and reasonable adjustments are phrases not really understood. My heart sinks and tears pour out of my soul. But I don’t let them see. I don’t want them to know how much this hurts. How this conversation took place over two years ago and it’s still etched into my skin. I don’t want them to know how I walked out of that room and sobbed in the lane outside that house and again TMS stalks me.

…………………………………………

I have shared these stories as for me they get to the heart of what it is to live with an invisible condition like epilepsy. I look OK I look FINE, so when people are reminded that perhaps I do not conform to their idea of ‘fine’ they are shocked, surprised, uncertain and mistrustful. I want so much to spread awareness and understanding. I know that bus drivers aren’t horrible people, I know they have a job to do, I know I am loved by my friends. I know that they just do not realise what it is like to have epilepsy. My therapist told me that this description I once gave her helped her to understand the psychology of epilepsy better than anything else so I thought I’d share it here with the hope that it helps other people to understand better too.

Dear Mr. Bus Driver,

Yes I look young and pretty (if I say so myself!) yes, today I am on my own, yes I have all my limbs, I am walking, talking and carrying a bag. Yes, I have a freedom pass. It’s not fake and this is why. I have epilepsy. But epilepsy does not have me. This is one of the many ways it affects my life:

Every day I walk down the street, I’m sure you do too, lane, road whatever you want to call it. I walk. The surface is uneven, there are loose paving stones and crumbled tarmac, there might be a pebble or a clump of grass. I’m normally busy and on my way to somewhere. I hurry. Sometimes I might trip on that loose stone, pebble or lump of grass or even just over my own two feet. I’m sure you trip sometimes too. It doesn’t have to be a big fall, just a tiny stumble. A milliseconds trip.  Everyone trip’s up right? I know they do.

credit photo by Jack Hood on flicker

credit photo by Jack Hood on flicker

The difference for me, when I trip in the street is that I have been told I have epilepsy. (I say I’ve been told as I don’t remember so I have to trust others -but that’s another story) I have been told this and so when I trip I immediately think; did I just trip, like anyone would or was that an absence seizure? Was that ‘normal’ or was that ‘abnormal’ was that epilepsy? I DO NOT KNOW. This question is repeated a billion times a day for me: Did I drop that normally? Or was it epilepsy? Have I just forgotten something as everyone does? Or is that epilepsy? If it is epilepsy WHAT SHALL I DO? Lie down, tell someone? Call someone? Take some drugs? And then even worse- perhaps it’s not epilepsy at all. Perhaps its ‘normal’ and I’m just the biggest fake of all. Perhaps nothing is epilepsy, perhaps the Doctors lied and I’m just a hypochondriac?! I can’t know. To me these are terrifying questions. If I happen to be for example on a station platform, on a road, in a pool, my life and others can depend on my answer. Take a moment and imagine that.

This the reality of the psychological impact of epilepsy. This is why I have a freedom pass. Why I would not wish this ‘freedom’ on anyone else. I don’t write this for sympathy I write it because it is true and because I hope it might help others to better understand what invisible health conditions might be like.

Things That people with Chronic Health Conditions DO want to hear

Things That people with Chronic Health Conditions DO want to hear

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