The silence of my life…

Life makes a noise in many ways. Physical noise as you do things; from getting up and showering, to walking down the street, you’re making noise. Audibly of course; noise as you talk and yawn, laugh and cry. And there is the mental noise your brain feeds back to you; an endless voice at your ear, whispering, talking, reasoning, thinking, feeling, trying to sort the experiences you have into sense. And the noise of your dreams as you sleep…not always heard, but when you do catch some of that secret reel, it can leave a mark on your consciousness for a fair while.

Lying here the other day I was struck by how quiet it was. Really quiet. Not just calm, but still, like when you first walk into a room that’s been empty for a while, and there is a stillness you can feel. It’s what makes you whisper in a cave or an empty church.

Maybe the impact you have in life is that noise, heard by others. And I realized that I am making so little now. I have a presence online as I chat and comment, and a voice at home to my family…but otherwise the noise I used to make has gone quiet, and the space I occupied in the noise of the world has shrunk as my life has shrunk to this sofa. I am become a whisper, a thread of a voice like the first Voyager spacecraft, trailing off into space but still sending back that single constant voice, reporting just the most basic line of contact…still here…still going…here I am… Further and further out into the darkness.

I try to make noise. I have some work doing back room stuff for our business, and I try to be a good mum, but it’s not much, and it’s not enough, for them or me. Other things make noise around me, other people drop into my silence with their own noise, and then leave again, taking it with them and emphasising the muted void in which I exist. My pain is a constant noise in my head, sometimes a scream that blocks out any other contact, mostly a chattering discord. But no one around me, including my doctors, can hear it. For them, it doesn’t exist.

If the world is an orchestra, playing a concerto of humanity, then I am now in the wings of the stage, looking forlornly at my broken cello, holding it to my chest both for comfort and in grief, silenced and alone. I hear the sounds of others, but can take little part. I grieve for my voice, for the music I used to make in my life…

Aye, there’s the rub. Nell ๐Ÿ™‚
If you’ve read this, thank you. Please leave a comment.

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This is a post for those in the dark, who live without the hope that others take so much for granted; who know that their today and tomorrow will be so utterly like yesterday that they try not to think about it. We distract ourselves with the shadows of others’ lives through tv, films, documentaries, music… We watch things happening to others, because our own selves hold little interest now.

I may have mentioned how my past friends from that other life have continued their journey and left me broken by the roadside. I may have briefly talked of my loneliness, my fear and frustration and anger at all that I have lost. I might have shared some tears and offloaded just a little… But what I haven’t talked about is the new friends you make, the people in the night who support each other without meeting, without judging, without showing their faces. And those who might, and then will, step out of the dark for a moment, and trust in a stranger.

We are the nightswimmers.

Without them I could not exist, not without their unspoken words, text on screen, hand outstretched in that darkness, leading you forward to something better than the moment you were in before. Strangers on forums: words with red flags if ever there were. And yet these are the only people whom you stand a chance of being understood, of your pain and loss being recognized, and of finding real empathy. So we join a group online and we reach out, we strike out in the waters, depth unknown, for another shore…and we hope.

This little blog post is my tribute to one such fellow swimmer in the dark. He has become a flickering candlelight in my own long night, and I will never be able to express how much that has meant. He’s the only person I’ve ever known in this whole five year nightmare that has known how it feels to be shut in this little world of rooms and walls, and bed without fun. And he, like me and all the others, is a real person with a life and dreams and hopes, and personality and character and a voice that should be heard. 

So thank you, fellow nightswimmer.

If you’ve read this, thanks, Nell ๐Ÿ™‚

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I want to climb a hill…

Sometimes I don’t think I can bear never climbing a hill again, never standing and looking at a lovely view with the fresh air and sunshine on my face… I spent many years studying the earth, and I want to climb that hill, look at the rocks and feel the earth and the stone in my hand. I want to feel the sun and the wind, hear the sounds of nature, and feel every breath deep in my lungs… I want to feel like I’m living. I wish I’d done more of it when I could.

Being chronically ill sucks. Being housebound sucks even more. Being in massive debt on top of that because I haven’t been able to work properly for five years…is soul-crushing. We can’t afford anything that will help me, can’t afford nice things for my family can’t go on holidays. Pain and guilt and loss, and fear of the future. I’m not good at this, there’s too much I wanted to do still. I can’t let go of the me I was, the me with dreams for the future. Because the Nell left here can do so little.

I got rid of a large chunk of Facebook so-called โ€˜friendsโ€™ recently, because basically I didn’t see why I should have to watch all their updates and outings, holiday snaps, meals out, night of drinks and fun and parties and hilarity when not one of them called me when I was having a shit day and actually dared to post it there. I was very polite. I am, you see. But what I really wanted to write was the following: โ€˜If you think I moan too much, then firstly screw you and secondly, don’t worry, I’m changing my FB use soon, and you won’t see my climate change posts, petitions to help improve the lives of animals and people, and little picture sayings that feel apt that day… I’ll still be here, but invisible. A bit like now, only my choice. I’m sorry, but I can’t bear to see all your lives, doing things, seeing things, having fun, taking your kids on holiday, eating out, carrying out plans…when no one rings, no one writes, no one comes any more. Am I bitter? right now, you bet I am. I am a bitter crippled old woman in my mid forties. I wish I wasn’t, but being angry at stuff is a distraction from pain, and maybe it’s almost all I’ve got left… Don’t judge me until you have walked a mile in my shoes – and good luck with that, because I fucking can’t. And when you can’t even sit to use a wheelchair, you can’t wheel a mile either. So goodbye and thanks for nothing.โ€™

I didn’t send that. But I wanted to. So why the reticence? What’s the point in me being polite in such a situation? I’ve got no personal reason not to tell them how I feelโ€ฆbut it’s just not me. I can’t be rude, it’s habit. Always too scared of not being liked, of offending, of being cut out. What’s odd is that I’ve always felt that while so busy being the polite, careful, considerate one, other people have felt free to treat me like shit at times. And even then I’ve never let loose and been brutally honest, said how they’ve made me feel. But if I’ve screwed up โ€“ and I have, occasionally โ€“ people have laid into me and been brutal, and I’ve been apologetic and contrite and have felt awful. And they have been pissed off and resentful. Yet the converse has not been true. I’ve not borne grudges, by and large, and forgiven people their small crimesโ€ฆyet if I’ve made errors I’ve been well and truly punished socially. Why is that? Where is the justice? Why has being nice seemed to get me nowhere? I mean where are my friends now?

Oh hang on โ€“ they’re not here. I have indeed finally been cut out socially. Cut out of life. Because I’ve committed the ultimate social crime: I’m chronically ill and I’m not getting better.

I should have been honest. I should have played the game of life differently, gone toe to toe with people and stood up for myself. Why have friends if they don’t respect you, don’t like who you really are? Why pretend? I wish I’d realized it years ago.
Thanks if you’ve read this. Nell ๐Ÿ™‚

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Despair comes too easily when in bed, in pain…

Well I’m in bed again. My back is a fiery bundle of pain, and I really can’t think straight, let alone actually do something useful. I can’t remember the last time that I actually did something useful. Breaks my heart, all of it, all of the silence and the inactivity and the thinking and the crying and the wishing and hoping. Because nothing happens. The only things that happen are to other people. People carry on with their lives around me, and when they do come to me, it’s as if I make their lives stop for a little while, in the same way that my life has stopped. I can tell that I make them feel bad, so I try to smile and to talk about other things. But the pain pulls at me all the time, like it’s trying to drag me down into some deep dark place that I don’t want to go to. I think that’s what shows on my face. I look in the mirror now, and I don’t see me, I don’t see who I know I am, I see fear and pain and loss and despair.

I feel as though everybody has given up on me. I feel almost as though everyone is waiting, waiting for something to happen the same as I am waiting. I don’t understand it. I don’t understand how the doctors don’t want to do anything for me. I don’t understand how they can just leave me here to rot as though I don’t matter, as though I’m not worth saving.

When I look in the mirror, I am looking for myself, for the me that I know is still in here inside this pain and wreckage. I am still here, I still have hopes and dreams, I still want more than this. I fight every day just to be here, to get up every day and not just give in, which is what it feels like this thing wants me to do. There are so many things that I wanted to do. I’ve got so many things in my head, so much determination, so much drive and energy and desire. But now all those things are just staying in my head, and it is the disease, the CRPS that is stopping everything from getting through to my body, which just screams at me.

It is so loud. You can’t imagine how loud the pain is. Sometimes, when people speak to me I can hardly hear them.

I look out of the window and I see the sun shining on the grass and the trees and the birds, and I see the blue skies and the white clouds, and all I want to do is to fly out of the window and be there, free and clean of the pain that is painting my body blacker and blacker. Oh I wish I could just go there, just walk out and see it, smell it, feel the breeze and the sun warm on my face.

Today I do want to go. Today I can’t see what good this does, I can’t see how this will end well or what good it can do. I feel trapped here because I can’t go, because it would hurt the people that I love the most. I couldn’t do it to them. My mum is here now, downstairs where she is doing some paperwork for me. She is over 70, but she does so much for everyone, and keeps going despite her own problems, and I admire that. I wish I could do that. I’ve tried so hard to keep going, to keep being the person that I was, but every direction I have turned the pain is there like a great wall that I can’t climb over. I am tired of it all.

So here I am, in bed again, hurting and despairing. And now my darling husband is dealing with pain too, the doctor is referring him. I do hope it’s nothing serious, I do so hope he gets better, because he is my life, he and them, they keep me here, fighting. I feel so bad for them, they deserve so much better than I can give them right now. I worry about them. I hope they are happy and that life is kind to them. I’ll always be with them, some small part of me, no matter what happens to this hollow frame.

But, oh my darling man, I couldn’t leave you. What would I do without you? You’re my life, my best friend, my love and my hope. For you I will endure. For a smile, a kiss, a touch of your strong hand. Like a light in my darkness.

Sorry I haven’t written in a while… If you read this, leave me a thought, and thank you. Nell ๐Ÿ™‚

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It’s a funny old thing…

Once upon a time there was a little girl, and her name was Nell. She was a funny little girl, always on the go, always laughing and far too often in trouble. Not pretty, but lively, uncaring of clothes and neatly brushed hair. Sometimes, for a little joke, family members would say she was ‘the black sheep’, but Nell didn’t mind. She would go off again on her bike with her friends, climbing the tall trees in the park, swinging so high that she would get a funny little fright at the top, jumping off into the muddy patch of grass beyond, running, always running. She would take her little dog, and run with him too, up and down, throwing sticks, rolling and chasing and laughing under the blue, blue wealth of sky.

On rainy days, Nell would amuse herself in other ways. Living in an old Victorian three storey house, she would climb the banisters all the way to the top, challenging herself not to put a foot down. There were crocodiles you see, or sharks, or the troll would get you if your foot touched the carpet. Like a monkey, she would swarm over the smooth, curved wood, finding familiar handholds, and squeezing her little feet between the uprights. From the top landing, she could see all the way to the hall far below, and imagine with a shudder the terrible crunch if you were to fall so far down. Other times, she would borrow a sturdy metal tea tray, sometimes called into use as a sledge in winter, and try to ride it down the tight bends, scraping the skirting boards, tumbling and giggling, and getting shouted at when caught. Her energy was boundless, her smile crooked and prompt, her heart as clear and open as the fields.

But she could be quiet too. For Nell loved all sorts of quiet things. Reading was a great passion, and she read voraciously, all the books at school, children’s books in the house by Enid Blyton and many others. Envy for the lucky girls at Malory Towers, tears for the rabbits in Watership Down, thrills at the Swallows and Amazons, highs and lows, love and loss. Then more adult reading; all the great novels she could find, from Wuthering Heights to Little Women, darker subjects and complex emotions, highs and lows, love and loss. She learnt boating from Arthur Ransome, old fashioned values from Enid Blyton, rippling, musical language from Susan Cooper, formality and constraint from Jane Austen. Nell lived and breathed them, determined that she too would write her own story worth telling some day. She would do great things, travel far abroad and climb great mountains, have her own boat and hoist the sails to head into adventure. She would do things.

Not just reading. There were other quiet things, like afternoons with a cup of tea and a good jigsaw. Absorbed and concentrating, Nell would sit for hours building the picture, all of life paused and silent around her. She would play with dolls too, living little homely lives with them, sipping tiny cups of water and dressing them carefully in fiddly knitted cardigans made by her mother, trying not to let their stiff fingers catch in the wool.

Not so quietly, there was music. Music seemed to be in Nell’s soul, perhaps it was her soul. She needed music as much as food and drink, as much as the sun itself. She had picked at the piano since babyhood with her mother, gradually learning the notes and making sense of the jumble of black squiggles before her. Now she could work the confusion out for herself, and her imagination leapt with huge chords, danced with the quick little high notes, and swam dreamily with Debussy and Mahler and their mesmerising melody. Nell breathed it all in, and expanded a little with each new accomplishment. The world was before her, there for the taking. Intelligent, quick and dutiful, she was like a spring morning, full of promise.

Once upon a time, there was a crippled woman in her prime, grey at the temples, her face hollowed with years of pain, her future as barren as a deserted mud flat in November, and her name was Nell.

Posted in Childhood, CRPS, Depression, Illness, life, pain, RSD, Uncategorized | Tagged , , , , , , | Leave a comment

How did this happen?

You know when you have one of those moments where you experience clarity about everything in an instant. You see yourself as if in a little glass box – everything is clear, and you can see the journey you are on. The one that you take care most days not to chart. You leave the map on the floor of the car where it belongs and just stare at the fields as they go by…each one similar to the one before.

Then for whatever reason you can see it as a whole. Something sparks that change – a sign, a memory, a comment from someone – and the light goes on, just for a second. You stop looking at the fields, and you wake to a different consciousness.

I had that today. Talking on the phone to someone, and they made a casual comment about nothing in particular. But for some reason that was my spark, and the room changed around me. I saw my blinkered life, my confined actions, my careful avoidance of risk, my isolation and loneliness, the pointless waiting which is my every day.

What the hell am I waiting for? What is it that I hope for? I know what it is: I hope for a sudden telephone call telling me that a new drug has been discovered that will take my pain away without any side effects. That I can have it tomorrow, start again, get fit, get healthy, go back to my life. Going on my five years of the medical merry-go-round, is that likely? Is it a realistic hope? 

Of course not. I am kidding myself. What lies ahead is not my old life, nor an active new one. There was a famous quote, something like “if you want to see the future, look at the past and extend it…” My future will be a version of my recent past…a slow decline, with me fighting every day, shoving my heels in and trying not to fall down into the dark, dark hole that is my darkest fear: pain – a far worse pain than now, that leaves me incoherent, immobile and distressed beyond sense; where doctors tell me there’s nothing more they can do, but refuse to release me from the torture of life. That’s my darkest fear.

That is what will happen one day, hopefully far in the future. Unless…oh please let there be an alternative. Let something happen to change my future for the better. Maybe a new doctor, a new approach, a new drug, a new treatment. I will keep trying. I will not give up and it cannot make me. Do you hear that, CRPS? You will not win.

Well, you might. Eventually. But I’ll give you a fucking long fight. And when I lose, it’ll be my choice.

If you read this, leave me a thought… Thank you ๐Ÿ™‚

Posted in Back pain, CRPS, Depression, Illness, Meds, pain, RSD, Uncategorized | Tagged , , , , , , , , | 6 Comments

Holistic is not a dirty word

Our NHS is fabulous. Let’s get that straight out there. But…ahh, there’s always a but…it could be so much better! The NHS is great at dealing with acute injuries and illnesses, and with specific well known long term problems like diabetes. What it isn’t so good at is dealing with those of us lucky buggers that have a rare, awkward, long term chronic condition. It might as well be our own fault at times…it can certainly feel like it.

We see our GP for ten minutes or so, and there’s really just time to talk about a specific problem; definitely no time to sit and chat about more general health over a range of issues. Specialists are exactly that – they specialize. If you are referred to an orthopaedic surgeon because your knee is painful, then that’s what they look at. Your knee. Nothing else. If you chopped it off and sent it in a box they’d probably be happier. Surgeons like unconscious patients and sharp knives: it’s what they trained to do. If you do have an obvious problem aside from it (like your other knee) they will tell you that you need to see your GP to ask for a separate referral. How stupid, time-consuming and expensive is that?

Physios will address the issue you’re seeing them about, and similarly will need another referral form filled it for a separate problem. Sigh. I’ve seen a few in my time, but I’m lucky that the physio I have now is great; weird as hell, a bit crazy, but lovely and supportive, and willing to look at me as a complete human being. Well as much as she can in the time. She is the only one.

The NHS looks at us in bits unless we have something straightforward and clear, like diabetes. With CRPS, hardly a single professional medical person has known what to do with me. They put their blinkers on, deal with the issue that’s listed on their computer screen, and want you out of the door ASAP thank you very much.

Yet CRPS is a chronic disease. It affects our whole body and all its systems. It is a disease of the central nervous system, and can spread it’s horribly painful tentacles just about anywhere we have nerves. Research is ongoing, knowledge throughout the NHS is poor, and ideas to treat us vary wildly….our treatment and therefore prognosis are entirely dependent upon whom we see. If we have a crap doctor, we will get poor treatment and be more ill than someone who has a good doctor who is proactive and learns something of the condition he/she is treating. How unfair is that?! The postcode lottery all over again.

So please, Mr NHS, please treat us like the whole person we are. Treat our disease. It’s affecting our whole body, so treat that body, and the mind that is struggling to cope with everything being thrown at it. Pain is such a commonplace word, used for everything from a simple muscle sprain to a nasty graze, banging your shin on the doorstep to a headache. Yet truly bad pain is rarely discussed by doctors, usually because they are scared of it. They can’t treat it. It is a well known yet barely whispered truth within the medical profession. For all their degrees and years of training, and the pharmacalogical box of delights available to them, they cannot treat the worst of pains. Particularly neurological pain, like in CRPS. So we are referred to various departments: pain management, occupational therapy, psychological health. ‘Learn to live with it’ is the mantra. Learn to manage your pain and get on with life. Easily said, of course…

Yet our body is left to its own devices, by and large. When your knee is screaming in agony, swollen like a melon and disobeying everything it was told to do during recovery, you are told to rest, ice and elevate it. That’s okay for the short term, but what if your knee then baffles your doctors by not getting better? What if your pain gets worse and the swelling stays, and your skin becomes mottled blue and then fiery red? What if the ice makes everything a whole lot worse, and you have to stop and shout ‘what now?!’ HELP! Well then you are referred of course, back to your GP first, then to your surgeon. You are diagnosed. Great. An answer at last, although the last one you wanted… CRPS. We think you have a condition called CRPS.

But. The whole thing has taken months. Months and months out of your life. Months spent sitting around, lying around trying to get to a point – any point – where your pain is less. You understand why caged animals pace, or bang their heads repeatedly on the wall, or shit in their water. You wonder whether you’re going mad. It seems highly possible. You feel dreadful, your life has been blown apart by the change in your body – work, home, social life, plans and dreams all shattered. You don’t know for how long. People tell you it’ll get better, but it doesn’t. Doctors and nurses and physios and surgeons tell you it shouldn’t hurt that much… (Excuse me a moment while I laugh hollowly.) You are depressed, ground down by pain and fear and shock and disappointment. You haven’t cried so much since you were fifteen and your boyfriend split up with you and started seeing your friend. Your doctor doesn’t understand, and you feel his suspicion. Family can’t understand what’s going so wrong. Friends can’t deal with it. You feel isolated from life itself, and you doubt yourself and your own body. You don’t understand it either.

And in all that time, your mind and the rest of your body has been ignored. You’ve perhaps been on crutches, in a cast, in a wheelchair even. You’ve been sitting awkwardly, walking crookedly…yet no none has talked to you about that. Now your back is hurting, your other knee is protesting, your neck is creaking. You mention it and are ignored. No one thinks to address that before it gets worse, to look at your posture, your relaxing positions.

Why don’t they check what position you relax in? Why doesnt that matter? It matters hugely! What if you’re putting a strain on you back, your hips or your shoulder and neck? What if you’re not supporting various bits properly? This stuff matters long term. That’s the problem – initially with a condition like CRPS, no one knows that it’s going to be long term, so they’re treating us in a short term way; yet that can cause problems for us further down the line.

So treat us holistically, Mr NHS. Treat all of our poor battered bodies and minds. Because actually, you would save millions later on – as we wouldn’t have to seek help so often for issues created by our initial injury, and then the progression of our chronic illness.

I know they’re not mind readers, and they can’t treat every injury as long term. But they should be aware of the potential for a chronic condition to develop. So that if a simple sprain is not responding as it should, and strange things are going on both at the injury site and in terms of pain, they could rethink then, at the six week mark, and look at us more holistically, before the months and years of not knowing have twisted our hips, bent our necks and backs, and frozen our shoulders. And hurt us emotionally to depths we don’t care to explore.

Just my thoughts today. What ramblings I do think…  ๐Ÿ™‚

If you read this, thank you! Please let me know what you think in the comments below ๐Ÿ™‚

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