Do you know what it’s like?

Do you know what I see when I cook supper? When I stand at the stove and stir soup. What I see in the bubbles that wash grime off my babe? What I see when we cross roads, climb stairs, sit on a wall, splash in puddles, dip our toes in the sea, lie on the bed, look out of the window, open a door, turn on a tap, switch off a light?

Do you know? I don’t think so. How can you? I’ll give you a clue. It’s not steam and chopped squash, it’s not soapy suds and watery giggles, it’s not cars, or carpets, not bricks and muddy wellies. It’s not salt-spray and cosy blankets, it’s not a way outside or a beautiful view, it’s not running water or the soft glow of an illuminated space. It’s none of that.

And I can hardly bare to type and I’m utterly numb and a wave of guilt for sharing my pain rises up like acid. ‘Self-centered’ and ‘Narcissistic’ float around the keyboard, yet my fingers don’t stop typing as somehow I’ve learnt that I find light though black marks on white paper. I am sorry if you can’t handle it. I don’t want sympathy. I want understanding, I want to feel.

I see my arm jerk out of my control, boiling liquid pour down the oven and burn through the flesh on my babies head, I hear her scream as it melts through her skin like acid, her guts pool round my ankles. I see her limp and lifeless floating in the bath, my own head dripping blood into the tub where I’ve smashed my face against it in a seizure. I see us stopped in the middle of a motorway, confused, I turn just as a car slams us into oblivion. I see rugs wrapped round us so tight that her skins turned purple. I see her alone, face broken as I’ve hit her across the face, my muscles made super-strong by a seizure. That is my reality. That is what I see. That is what I fight. That is what I have to tell myself ‘THIS IS NOT REAL’. This is what I talk to you through. This is why sirens make me jump, loud noises bring tears to my eyes, why I am trying so so hard. This is my everyday.

I am angry and exhausted. So tired of carrying this. So tired of seeing this. So tired of seeing it all on my own. So tired that you don’t see it. So tired of understanding that it restricts oxygen flow to my muscles that makes them scream out in pain and yet still not being able to stop it. So tired of trying to find the light, to stay positive. So tired of carrying this and then daily life on top; of parenting and facing the mortality of loved ones, of everyday responsibility plus this. So tired of learning that not everyone can be my friend, that not everyone can support me. It tips me over an unseen edge and I can’t hold onto it anymore and I can’t cry silently in the shower anymore. And the panic takes hold and I sob at the breakfast table, my daughter wide eyed and confused, her big eyes questioning, asking, imploring; ‘what is it Mama? What is it?’ and I want to tell her and give her some sort of answer but I can’t because I don’t know myself. So I hold her hand and tell her it’s OK even though I don’t believe that it actually is OK. And I try not to wallow and I try just to be and I try to find breath and that elusive Zen I look for so hard.

therapy

And I try to tell myself that every day I fight this Demon adds another star to my crown. That while I stand in the kitchen, see you in person, send a text to you, whastapp, facebook, skype, my face’s smiling, my mouth chatting. I’m still fighting. That through all that everydayness there’s a sword stuck to my hand and I’m locked into this endless battle with a demon that I hope you will never see. The sword’s so heavy its broken my arm, yet I still can’t let it go. It’s burnt into my flesh, welded to the bone and I have to keep fighting or else I’ll be consumed and you might be too. .And somedays, like today the Demon is so close I feel its foul breath and somedays I wish that you could all see. That I am trying so very very hard, that I love so very much. And occasionally if my sword catches you too, then I’m so very sorry I hope you know that I never meant to hurt you. I’m just trying to stay here. With you.

IMG-20140429-00064

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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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30 Grateful Days: Day One

Recently someone close to me asked why I was still writing this blog if I’m ‘better’. Shouldn’t I be focusing on ‘real’ writing, on making my ‘career in writing’? For a moment my blood boiled and then I simply thought; I am so happy for you dearest, that you do not understand and cannot comprehend, that you have nothing in your life that cannot be ‘made better’. So I simply replied ‘because it’s important to me’, and it is.

This blog is my personal corner of the web-ether where I can connect with other people on similar journeys, I can write freely and openly about my life and know that if people are interested they can read it and if they aren’t then they don’t have to. I write because it makes me feel better, I write to learn more about myself, I write to share and to connect. I write to heal. When you have experienced health conditions such as Epilepsy, Mind-Body-Syndrome; Chronic Anxiety and PTSD I do not believe you ‘get better’. You continue to exist, somehow you work your way through it, you work out how to not let these things define you, but they are part of you. However much I or anybody else wishes it were not the case, it is. I still have epilepsy, I still have episodes of mind-body-chronic-pain, I still have PTSD. This does not mean it defines me. Notice that I didn’t write I am epileptic, I am a chronic-pain-sufferer or I am living with PTSD…… I don’t believe any of that anymore. I am Lucy.  What I have is shit to deal with! This blog is simply my way of working shit out. The shit goes on, because whatever’s happened; life still goes on and therefore this blog goes on.

Now I’ve written that and established that this blog’s going to stick around a bit I’d like to shake of the glum-grey-gloom I seem to have started today with and begin a new blog project. Something which I hope will re-engage me in the blog and help me feel a bit more positive in the face of the eternal ‘are you better yet?’

It is called 30 Grateful Days

Via Sandra Lang

Via Sandra Lang

It is very simple. For the next 30 days I’m going to write a short blog everyday on things that I am grateful for. Inspired by the 100 happy days challenge I took on Instagram a while ago, I learnt that stopping and thinking of what we are truly grateful for has incredible healing benefits. For some super-science on the truth of this, from minds more complex than mine check this.  If you feel inclined to do your own 30 Grateful Days, please go ahead. It’ll be awesome I promise! Use #30GratefulDays  if you’d like to share the gratitude!

Day 1: 

Today I woke up just before the alarm went off, it was still dark and I could hear the rain pattering against the window. The bed was warm and dry and my husbands arm hugged me to him. I had slept nearly all night woken only once by a sharp, familiar TMS pain, which with a few calm words of self-talk, disappeared. I felt proud that I removed the pain without drugs and that sleep found me again.

The cupboard is full of tea, it’s so full in-fact I had to move around the boxes like a giant tetris in order to shut the door. The Kettle is red and shiny, just begging me to put it on the gas and the milk-jug’s full to bursting. A message from my mum, my sister, brother and my dad. A friend around the corner and a cosy cafe in the rain. The world at my fingertips, another world in a book by my side, a bucketful of blessings to be grateful for and it’s not even 10am. #30GratefulDays

gratitude

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This too shall pass

It happened again.

It happened again. I bent over to pick my pyjamas of the bed.

and bang pain stabbed me in the back, through my psoas and into my heart,

spun down my leg and flipped up into my chest.

smile

 

Fear jumped up and dug in its talons in,

not again, not again, not again……..

It seems that this is ‘the thing’ with TMS,

with a ‘Chronic’ condition.

Even when you think it’s gone, even when it’s not-really-there, even when perhaps, you’ve somehow forgotten it.

It’s there, just biding it’s time, waiting, lulling you into that false-sense of security, so you start to believe ‘hey! maybe I have this!’

Maybe it’s ‘GONE!’ Maybe, oh maybe, I’ll skip that exercise, I’ll eat that and I won’t do that – that thing, Maybe I’ll stop the therapy, yeah good plan. I’ll stop.

So you stop (I stopped) and then just at that moment when you think ‘YO BITCH I’m BACK!’ (or some other tv-series-cliche) then the pain jumps up, well rested, ready to get you and BREAK-your-BAD all over again.

my life

That is how it was last night and today I am shattered. I dreamt of ripped limbs and stabbed-out eyes, of evil deeds and hate-filled words. I dreamt my body was not mine and of endless rounds of seizures. I dreamt of drug boxes so big I climbed inside and couldn’t get out. I dreamt that it was over and I almost hoped it was.

Today the screen blurs through my sea of medication, my face aches with the sobs that streamed down it. Naked, I cowered at the bedside, trying to dress myself, frozen to the spot. I cried enough to water the sahara and then some more too. Now my head pounds. Seven words penetrate the fug of pain and frustration which settles around me. ‘You are not alone. I love you.’ and slowly, I look up. There  is truth there. I know it and I am grateful.

Lao Tzu

The difference between now and ‘then’ is that now I know that I actually CAN do this. I have done it before. Now I know the reason my pain errupts. Now I understand. I’m learning to predict it, to read my crafty mind, to learns its tricks and find it’s hiding places on the banks-where-the-wild-thyme-grows, to seek it out, face those demons that make me cry and chase them out. Let them go. Stop giving them shelter, feeding them until they’re strong enough to stab me. I’m learning, I know more than I did.

Now, though perhaps more thatn anything I’ve read and seen and heard, I’ve learnt that it really is true. All things do pass. Even pain. Especially pain. Passing does not mean going, but rather moving on, changing and developing. In that somewhere, in this jumble of words spewed onto my blog  today is where I see a bit of light. #chooselove

this too

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