Living Differently - Holding the Gaze

Back in 2013 I did an online photography course with Vivienne McMaster. Vivienne's work encourages her participants to "discover tools that will help you to cultivate a relationship of self-compassion both through the camera and in your every day life" (her words from the website), the premise being that self portraiture can help us look at ourselves with love and lessen the hold of self-criticism. It can be a radical act to show up in front of the lens and direct that gaze, that multi-facted honest gaze towards our most bullying critic - us. We can feel the earth shift when we direct a look of love towards ourselves instead.

A year before this I began using photography as a way to deal with living with chronic illness. After feeling trapped in my body I felt an enormous sense of relief capturing what was happening to me on camera. I was both the photographer and the subject and that allowed me to explore my feelings in depth without having them overwhelm me. The camera was a tool for both investigation and validating my experience. I began my self-portrait journey wanting to record the truth and the last thing I wanted was to 'play nice' for the camera. As I continued my work with Vivienne I learnt how to enjoy being in front of the lens. I found out that I was a worthy a subject as anyone I had turned my camera towards.

A few years have gone by and I'm still adapting to a life I did not choose, still looking for  my own story in the midst of change. The past 6 months have been very tough and I've got puffy and swollen in my face. This shouldn't matter, but it does. In an attempt to self-validate I forgot one thing - the constant passing of time. When I look at the photos above, all taken and processed on my phone, posing, pouting and beaming - I can also see someone trying hard to pretty herself for the lens. Looking at these pictures something is missing. Where is my body ? It's no coincidence that I live with an invisible illness.  I've managed to hide myself from myself.

Looking  again I can see that even the most processed of them are a part of my story. Some days I let my vulnerability show, others I shine with joy and then there are the times when I feel the only choice I have is to 'say cheese', hold my gaze and face the world.

Living Differently - Nothing is Beautiful

A week ago my solid, kind and adored therapist finally retired. I'm still numb from the ending of what has become one of my most important relationships to date. Every therapeutic relationship is different and ours evolved in to something far away from text books and theories and in to something imaginative, philosophical, supportive and ultimately saved my life more than once.  A few weeks before our final session we were talking about photography. I mentioned the work of Khalik Allah, whom I had only just discovered. I broke down in tears recalling the images of these New Yorkers - tough, broken and on the edge of survival. What struck me most is their vibrance. Yes, there's suffering here, addiction and poverty but there's also tenacity. That the photographs are in colour, deep saturated flourishing colour, spoke to me about the vitality of the human spirit. And that's why I wept. 'All photography captures life' I said 'Even if it's no longer there, it's the evidence that it has been. From the sky at night to a lamp on a table, to the people in the photographs, it's all about life. And because it's all about life it means that it's about beauty.' I thought about the photographic projects I've assigned myself since becoming ill - from taking pictures of the small and mundane, snapping the shutter at the same subject matter over days or weeks to my most recent project 'The View From Here'  (taken entirely from my bed during this recent crash). 'Even nothing is beautiful' I said.

My therapist smiled and repeated 'Nothing is beautiful' and in that moment we acknowledged both meanings inherent in this statement. The way I had originally meant it - even nothing is beautiful - and also remembering the despair I had taken to many session where I would arrive joyless and sad believing that there was no beauty in myself, or the world that I had access to. Nothing is beautiful, not this moment or any moment to come. But now my wish is that by stumbling on these words I can find moments, however short, where both the hope and hopelessness can live side by side. And that there will always be colour even in the most brutal of times.

Living Differently - Heartpoint (for Catherine)

I'm still getting over my most recent energy crash. It takes a lot of self-discipline to care for myself this much. And I don't mean the physical side of taking enough rest or eating properly but the emotional component. That one I find pretty tough. For every step I take towards self-compassion a voice rears up in my head reminding me, with great authority, how indulgent I'm being to take it this easy and that I should be doing more.  It's an hourly battle not to be crushed by this inner dictatorial voice and I find myself losing the ability to see what I need with any clarity at all. To feel so in the wilderness with nothing but my own punishing thoughts for company can be a pretty lonely place and I begin to wonder if I'll ever find my way back home. Now I've written this down I can see it does sound rather melodramatic. It's also the truth.

Chronic illnesses have wavering symptoms, ranging from just about nearly OK to absolutely bloody awful and if the ghastly period is unrelenting the fear can hold you pretty tightly in its grip. The whole process of going through a crash, relapse, or flare is extremely traumatising. After the metaphorical storm has passed I find myself wincing at even the tiniest drop of rain. I know I'm not alone in this and that the unpredictable nature of long term sickness can be very anxiety producing. This is perhaps why so many of us turn to meditation, buddhism, a spiritual practice or a creative outlet to aid our navigation through these rough seas.

So, it will be no surprise to hear that recently I had given up on magic altogether, even in its most human form. That was until my friend Dina invited me over to her studio for a prolonged session of recuperative yoga. It's not the first time she's done this and I'm always grateful. The session lasted over two hours and Dina put me in a series of prolonged resting postures on mountains of bolsters and blocks, covering me with cosy blankets until I drifted in to that safe and hypnotic space between waking and sleeping. She is an expert at arranging the equipment and I often felt like I was floating in space, momentarily free of the burden of gravity.

One thing that struck me was Dina's attention to detail. Even my skinny wrists were supported by rolled up blankets. We often think of holding on as something we do with our hands but our wrists can also carry a great deal of tension, the support I had enabled me to let go at last, to take flight. I decided to find out what mysteries our often neglected wrists held and discovered the location of Heart Point 7  described as an acupressure point to quell anxiety. It also served as a reminder to me that when we are feeling our most fragile the seemingly smallest things make the greatest difference and hold the key to our emotional sanctuary. I've called this heartpoint to highlight that even in our most difficult times there are clues everywhere, tiny doorways to love and tenderness and it's in the silence and stillness that they are revealed to us.

NB: This post is dedicated to my friend Catherine who is in the middle of a storm right now.

Living Differently - The Nowhere

It's six in the morning and I have had one of those broken nights where only the promise that nothing lasts forever keeps me going, not even this sleepless night. Upstairs the neighbours are partying, their laughter coming in waves. Then silence. And then the music, dancing and more laughter. It seems fitting that I am beneath all the celebration and joy overhead. Much like watching a loud plane break a clear sky with its flight and wondering where the passengers are going. A means of escape feels very distant to me right now. Being sick for a long time can feel like living underground, a life in the shadows where one is painfully aware of what is happening on the surface in the world above. Two weeks ago a miracle happened - I felt well enough to go out in the evening for two nights in a row. I met friends, some of whom I had not seen since before getting ill, and I looked and felt like a healthy person. It was the taste of freedom and the echo from my previous life that I crave constantly. However I was not out of the woods yet. A week ago I developed more new painful symptoms and a mysterious infection which medication just won't budge and have been bedbound ever since. I have been chomping painkillers like chocolates but they don't touch the sides. I am very afraid.

The constant trauma of being ill long-term means that each new symptom, each new facet of illness brings with it terrifying waves of anxiety. The questions swirl around my head will I get worse ? why is it happening ? when will this pain leave me ? what can I do to make it end ? As the panic escalates the answers are torturous - It will get worse, you will die a painful and lengthy death and there is nothing you can do.

The truth is I do not know what will happen. But even not knowing the outcome of my current state and that anything could happen, good as well as bad, gives me no comfort. I want to know. I want to know now that it will all be OK. Being present to feeling in the wilderness just heightens my fear.

Fear is a gateway to truth, if only we can listen to it. I am indebted to one writer who has helped me on my journey - this blog post by the esteemed Tara Brach sheds light on what we can do in such trying times. We can soften, we can let the grief and the terror have its place and we can feel the love and tenderness that is available to us. We can love ourselves.

It would be an exaggeration to say that I am experiencing the peace Tara talks about. However I do have a map and at least I know I am not alone. How many people at this hour feel the pain of not knowing the outcome or live with the prospect of a cruel future ? Millions to be sure. How many of us, when faced with the truth of our own mortality buckle ? To collapse when confronted with the harsh reality of our short time here, the fragility of flesh and bone, is an understandable response.

There's more. Now I know my feeling scared is human I can look further. One thing that illness has not taken from me is my inquisitive nature. I always want to know what the next question is, what else there is to learn. If I allow my starting point to be my legitimised fear and if I can be tender to myself in these moments I can then look behind the fear and see what it's preventing me from seeing.

At first it's grief. Oceans of tears for so much loss - beginning with all that I have lost since my illness began and then bleeding out like an inkblot to all losses, past, present and future. That hurts so much I can hardly continue my exploration. The fear rises again but something tells me to continue on my path.

Fear has stripped away every line of defence I thought I had. I am exhausted, sad and defeated. But wait - even as I write this, sick and tired as I am - I see myself as totally lost , stranded in a vast nowhere and very alone. This is it. The party people are listening to Stevie Wonder, how could I resent them their good taste ? I am alone in the wilderness listening to "You Are The Sunshine Of My Life" through the floorboards and a slight smile crosses my face. Another thought - what happens if, just for a moment, I loosen my grip and stand back and just observe.

Locating that I do and have always felt lost, estranged even in my own body, gives me some calm at last. I can say with certainty that I have never felt at home in the world. This truth brings tears of relief and quietens the fearsome chatter in my head.

This is where I am. I am nowhere. I do not know why this shocking revelation gives me comfort but it does. For a brief moment I touch my own nothingness. And I feel almost OK. If I keep touching the truth of the nowhere and the nothingness then the fear eases.

I can hear more talking upstairs. Someone has a lot to say, and loudly. And me ? I am in the cradle of this vast unknown space. I am held by the stars.

Living Differently - Giving Up Normal

I've been struggling with getting down to writing and taking photographs (the latter always being my refuge when the going gets tough) for a while. Shame has been like a gargoyle with its nails permanently in my back whispering cruel nothings in my ear and nothing has felt right or good. My experience of living with chronic illness continues to be both terrifying as well as a total and utter bore. It still amazes me that on my worst days, the ones where I find it hard to get out of bed or leave the flat, I can still find a surprising amount of energy for determined self-loathing. A lot of it evolves around what I think I should be doing, what I used to do and what a miserable and useless person I am for not being able to live life the way I used to. The 'Should Monster' comes to haunt me on my most fragile days telling me that even ill I should be jolly, invincible, tirelessly creative and above all not ever make a fuss. As a good friend said to me recently 'Sometimes being positive is just not the appropriate response.' I know she's right of course but daily I want to live 'normally', whatever the heck that actually means.

It's Saturday night and I'm in my pyjamas and a fleece dressing gown that feels like wearing a top to toe hug from a teddy bear. I'm listening to some Latin Jazz and have finally got down to letting my fingers dance over the keyboard. So, what happened to finally get me here ? This afternoon I spent a few hours in some gentle and generous company at TheWhatWorks residency, a creative adventure utilising the Open Space model. Put simply, in a creative context, this allows for flow and participants are encouraged to move from activity to activity if they want to, (or stay in one place if that works for them). Nothing is wrong. Anything can happen. That in itself is liberating and goes against a lot of the hierarchical teachings we have had bestowed on us since childhood. Because my energy is low I could only stay for a few hours but it was well worth it. I learnt about rhizomatic theory which, in a few short moments, was like coming up for air after living for years underground.

I cannot pretend I know anything about the complexities of this theory however the image of a plant's roots spreading horizontally just under the top of layer of soil struck a chord and reminded me that not everything has to be about the giddy ascent Capitalism preaches. That, and my 'go to' healing spice as Autumn approaches, is the much-loved rhizome Ginger, had me thinking that perhaps giving up 'normal' was the way to get the monster off my back at last.

As I have said I've been feeling pretty appalling recently. Health and housing issues have destabilised me. At least these current roadblocks have allowed me to observe something about myself - when I am at my most vulnerable I am most inclined to punish myself with ideas of conforming to a fictional ideal. Here's my list of what living with long-term illness continues to teach me, even as I resist it. And why giving up 'normal' can be a great thing to do if you feel like a hair-raising skydive in to the unchartered parts of yourself.

In fact that's the first - I can't shy away from myself. Illness strips me to the core. I am beginning to find out who I am, at last. - And that has had a massive impact on all my relationships. Some have withered whilst other relationships have grown and become more intimate. All of them have changed. - I am learning that sometimes the only response is to do nothing, that I have to 'let it' whatever that is. Even the agony is more tolerable if I stop looking for ways to fix it. - The outcome is always uncertain, we all live in the 'I don't know what the future holds' however much we try to run from this. - That whenever I trust my inner voice things are so much easier to deal with. In fear I often lose contact with this voice and everything goes haywire. - And what does my intuition tell me - pretty much always the same thing, to be kind and gentle and forgiving of myself, even those parts I feel I cannot forgive. It says love myself and to remain present.

I cannot state this enough. Be kind and gentle to yourself and remain present, always.

Living Differently - Naturally Stable, by guest blogger Jocake

I have been meaning to write a post for months now for the 'Living Differently' series, a project where I explore life with chronic illness. My head is a bit of a tangle and I'm very much in that part of the process where all that glorious chaos just has to be how it is for now. Since becoming ill I've met a number of pretty exceptional people. One of them is my dear friend Jocake. Jocake is funny, wise and has the rare ability of true kindness and understanding. Below is a note she posted on Facebook. I found it so moving and so necessary that I asked if I could repost it here on my blog.

"I was thinking yesterday about strength, and how it is seen in our society, and how we are trained to see it, and ourselves. We are, as we all know, shown images all day of what strength, achievement and beauty looks like: an unachievable for most, if not all, 'perfect life' where financial security, family, house, career and looks are all in place and providing us with happiness. Having just turned 40 myself i have recently experienced a deluge of emotional and mental tyrants in my head, telling me what about me isn't beautiful, isn't strong, hasn't achieved, just because I'm 40 and in the life circumstances i am in. It lead me to think about how illness is portrayed in modern culture, and how the people with illness are seen, and my actual experience in meeting these people and being close to them.

It's clear to me that people with illnesses are seen as weak, or glorified as fighters. Much as I have huge respect for those who are disabled and in the Olympics, advertising still encourages that model of strength where you have to over come something and achieve something great to be seen as strong, strength is not seen in being physically or emotionally vulnerable.

Now amongst my close friends I know at least 8 people or more who have been dealing with a long-term boring annoying debilitating illness, and of course i too have been ill for 17 years. It fluctuates, irritates, bores, exasperates and debilitates us. But what I have not seen, in any of these people, is weakness.

In my experience, being ill for 17 years is fascinating. There is a quality I see in myself, and in others in this position, that is tangible. I think people with illnesses like M.E can be seen as draining, victims, sad,'brought it upon themselves, weak. But when I'm with these people I see a whole different story. They are all funny, good company, incredibly compassionate, bright, have a huge care for the world at large, creative, insightful, bloody good fun, positive, and they have this quality that I can't put my finger on. I think what it is a connection with the true strength in all human beings that they have had to find due to their circumstances.

When you are stripped for years from the very things you are told will provide you with happiness where do you turn? When you can't have children, work to create financial stability, use your strengths gifts and talents and build a career, then where do you go to feel ok? This is what I see in all the people I know who are dealing with long-term health issues, a humility, a deep strength that is bendable and allows for all states, what shines through them is this: the essence of life itself.

This essence of life is what i see shining through all humans. It's in every one of us, life. Life is naturally stable, beautiful, and has already achieved life therefore is stable and happy as it is. This is what we are all made of, but we are not encouraged to look to it and seek its natural validity. Illness pushes you to this, and this is what i see shining through all my friends who are faced with everything you cant avoid.

It is a redefining of strength for me. Strength, beauty, achievement is in the gentle strong shining of life through each human being. You cannot avoid your strength, your beauty, your natural ability, your gifts strengths and talents, your stability. It is you, as you, always."

Living Differently - Learning Kindness

Nearly everyone has a default, a go-to place where they think they can hold off the tide of inevitability. Sometimes it is an addiction to being intensely busy, for others it's running as fast and as far away from any uncomfortable feelings it's possible to go. Mine is wanting to know, hoping that if I ask the right questions I'll get the right answers and then find a way to dig myself out of whatever mess I'm in. Even if that means I'm using a teaspoon not a shovel. Many have called me over-analytical and there is some truth in that. I know that my constant state of enquiry has allowed me the illusion of control. But what an illusion. It's also meant that when things have been really tough, like now, I can tell myself I am learning something - I may be suffering but I am not stupid !

Long term illness has got me a questioning many things. Why am I ill ? How can I can better ? Will I ever get well and, perhaps the most enduring, How can I live this way ? My experience of illness so far is one of dealing with one loss after another. Loss of health (obviously), loss of independence, loss of a working life, loss of friends and a social life, loss of travel. The list is long. And as much as the grief hurts it is something I find easier to live with than the grating anger and resentment for feeling so left out in the cold. Needing to know why, or what to do with the 'why' doesn't help me one bit.

A friend suggested I listen to Kristin Neff who calls herself a 'self-compassion evangelist'. What I find most interesting about her work is that she encourages self-compassion even with one's self-critic and the most self-destructive things we tell ourselves. Hearing this for the first time was like living with air-conditioning your whole life and suddenly have someone open the window and breathing in real air at last.

Before this any self-compassion exercises had been limited to a wholesome meal, a bath with essential oils, candles and the Bach Cello Suites. I may have managed to squeeze in a cursory acknowledgement that I was not the only one in pain on the entire planet, but with no real sense of connectedness. I lit more candles, cried more tears hoping the gentle music would save me from my most uncomfortable feelings. But I still felt bitter, still felt eaten up with such a roaring anger it is a wonder its fires hadn't burnt London for the second time.

It is only in the last few days, when I've been feeling angry, hurt and ashamed that I decided to share my feelings with a few friends online who also live with chronic illness. My friend Toni Bernard reminded me that 'there is no end to how much self-compassion we can give ourselves' and that even what I considered the most distasteful parts of myself deserved my love and attention. It seems all so clear written down but I am only just learning kindness.

The essential oils, the cut flowers, the warm bed are much needed accoutrements however this is only start. For years, far pre-dating my current state of health, I've fought against what I considered the most ugly parts of who I am. I wanted to eradicate those feelings. Years later I am still the hyper-sensitive, volatile person I always was. And perhaps, just perhaps, this illness has led me to a place where I can begin to accept and love who I am, every part of me, even the part who carries a big stick and dreams of torching everything.

Living Differently - Intimacy

Living with long term health issues affects everything we do. And this includes the most intimate aspects of our day to day living. I talked to some close friends about how illness had impacted on their sex lives. People were very generous in their responses. I've changed the names of the interviewees due to the sensitivity of the subject matter.

Sam is in a long term relationship.

"Our relationship started before I became ill and we have been together many years, the majority of which I have been unwell. It has changed so much in terms of what we can do as a couple and what we can enjoy together. It is hard to be spontanous or find anything new or different to do and we really just spend time quietly together at home, with the occasional trip out for a couple of hours. I think generally we are a strong unit and have adapted quite well to this way of life, but it does cause extra pressure and responsibilty on my partner and I don't like seeing the effects of that stress. My partner was very understanding and supportive from day one, despite our relationship being relatively new at the time there was no hesitation in taking me and the illness on, though neither of us had any idea it would be such a permanent feature in our future lives.

I live with my partner. This has huge benefits for me in terms of having company when I need it and being cared for. It can be hard seeing how much their life has to change and be limited to accomodate my needs. I find it helps to be cared for and loved by a partner, rather than living with a parent. I feel less childlike in my needs and more equal and appreciated for what I bring and offer to the relationship.

It has changed our sexual relationship a lot, as before I got ill and early on when I was less severely affected, we had a great sex life. This got harder and harder to fit around my illness and we started to plan it so that I could rest in the days before and after, but it took a lot out of me and caused me a lot of muscular pain and exhaustion. Over the years it has become less and less frequent until maybe a year or two ago each time we tried it, the act itself became too painful for me to continue past a certain point.

My partner is not happy to participate at all on the basis that we both do not both get the same amount of pleasure from it. I still experience myself as a sexual person and I am still grieving the loss of my ability to properly orgasm, which was something I enjoyed very regularly before. We are still physically close and are intimate, but I miss that intensity and giving my partner such pleasure very much. What closeness we do have is very comforting and loving and helps me so much in coping with my symptoms and daily reality. We laugh a lot together and that is so important to me.

I have heard disability campaigners try to challenge the idea that disabled people are not sexual and cannot have sex. They state that WE DO with much enthusiasm. I understand why (and I am a sexual being) but this still makes me feel excluded, as someone with a chronic and largely invisible illness who cannot have sex, from wider disability movement. My experience does not always fit with that of other disabled people or their aims/assertions, though I completely identify as disabled as my illness and fairly severe impairments seem permanent. Our experiences are so diverse and I hope that one day a more subtle and complex "disabled voice" that can emcompass all that will emerge."

Marie is single and has been living with chronic illness most of her adult life.

"I very much want to be a part of a family, to have somebody who's affectionate to me and loves me, somebody who wants to come home and tell me how their day has been and see what I've been doing, all those small things. On the other hand I'm basically asexual at the moment - I have no sex drive and my physical issues mean that having any type of sex would be a huge issue anyway so I'm really not motivated to do anything about the sex drive issue.

I was in a relationship for several years and there was some sexual activity but it wasn't frequent and we were very constrained in what we could do (and when) because of my low energy levels, my pain, etc. At the time my partner had a relatively low libido and was a very affectionate person so it wasn't a huge hardship for him from a sexual point of view. In the end the relationship didn't continue and my being sick was certainly a huge part of that, but I don't think the sexual stuff specifically was really much of a factor in the relationship ending.

I've been sick for basically all my adult life. When I got sick I was still a virgin, and although I have had periods of time where I've been sexual I think my illness has HUGELY affected my experiences of sexuality and how I see myself. I don't have any experiences of sex that don't include pain and fatigue and dealing afterwards with flare-ups of symptoms. I'm really quite happy now being asexual. I do masturbate occasionally but not very often, probably once a month at most. Most of the time I'm so sick that I really have no sex drive, no urge to masturbate or have sex.

I want physical affection, casual touches like when you're both in the kitchen and you put a hand on somebody's back as you brush past, hugs, curling up on the sofa with somebody's head on my shoulder or my head on their shoulder. I like other sensual pleasures too - gentle massage, cuddling my kitty, listening to glorious inspiring music, luckily I can access most of those without being in a relationship."

Lola is married and talks about the impact her illness has had on her relationship.

"We have been married almost 9 years. I am lucky that I have a supportive husband but I see the look in his eyes that sometimes he thinks I'm just lazy he has never said that but that is how I feel. We are still close and take the time together and cherish it.

It has affected our sex life greatly. Not that we used to have sex every single day but now it can be weeks. In my first marriage, my first husband died in a car accident, I never had to be the aggressive one but since my diagnosis I have to be and I'm not used to that. I don't feel sexy at all. I have lost about 10 pounds but I still feel awful about myself.

I would just like to add that even with supportive partners there are needs that we need met and maybe we need to start saying what those are. Since my diagnosis I feel the need to keep apologizing for everything including sex."

Living Differently - Platinum Heaven

In an episode of Frasier - brothers Niles and Frasier get an invite to an exclusive health spa. They are contented and smug until they find they have not been let in to the gold members zone. Finally they find a way in only to see that there is a platinum door - forcing this open they end up on the roof with the rubbish. The message here is about being where you are and finding contentment with that. And, of course, that our search for a 'better' sort of happiness is illusive. Since last autumn I have been living with M.E/CFS. This has meant I have had to draw on inner reserves that I did not know I had. I've also had to ditch fantasies of a gold or platinum member's zone. And for me that means a busy creative working life, much social activity and a freedom I took for granted. It's also meant I am learning to anchor myself to the moment, however challenging that is and a lot of howling at the moon when all else fails. Acceptance is a tricky one, either one fights the truth of one's circumstances or one reluctantly surrenders to life as it is.

But this experience has taught me a great deal. I would be lying if I said I was grateful, I'm still very much in the angry grief stage of this process. What I do know is how important humour is. It is the salve to heal all ills, even ridiculous ideas of a platinum heaven.

[youtube http://www.youtube.com/watch?v=3CNmrUMS5FQ&w=420&h=315]

Living Differently - The Mirror

I still get somewhat embarrassed mentioning the fact that I am sick. Shame can creep in pretty quickly and I feel I should apologise for not being fit or energetic enough to take part in a more active life. But thankfully that's only part of the story. Perhaps this is an indication that my thinking is more about social conditioning than it is about my personality. It's easy, for us all, to get the two confused. Luckily I have a stubborn streak – when something needs to be said I will not shut up, especially when the gauze of silence hides the truth. And it's this that prompted ‘Living Differently’ - a series of articles and interviews focussing on those affected by chronic and long-term health conditions. I'll start by something that we all have in common and that's sex. Or more precisely intimacy, because even if we are not involved in a physical relationship it's a rare person that can live without closeness and contact for too long.

I had a conversation with a friend about intimacy and chronic illness. He has written an intelligent and refreshingly open article about chronic pain and sex. I read it and everything changed. One of the things he talked about was about feeling less like an adult and more like a child when he has a flare up. I know that well. Although I often spend days on my bed in a state of undress (or more precisely pre-dress) I don't feel like the temptress. I feel I am living outside my 'old life', one where I felt I had more choice and more freedom with what to do with my body and when. It's hard to feel sexy when you are exhausted and anxious, when the body you once knew does not behave in the same way.

I've stopped wearing make-up, stopped dressing up and my main concern is how cosy I feel. This body has medical appointments, it has treatments, it does (thankfully) get hugs. It doesn't go dancing or swimming or cycling anymore, it does not run for buses. I realise I have to find a whole new way of being sexual, one that involves persistant and gentle affection, one thats emphasis is on sensuality rather than hitting the high notes at all hours. And sometimes, I hate to admit, I just don't feel pretty enough in myself to get laid. Perhaps I have to find a whole new pretty too.

Vulnerability, freedom and exposure are all part of sexual interaction. The language of sex, at its best, is one of communion. But for now the orgasmic release feels too extreme at times. As much as the rush of endorphins are healing the intensity feels frightening, like a freefall parachute jump, when I already feel like I am falling in to the unknown unaided. Now I have, to some extent, lost the sort of control I used to have over my body 'abandon' feels more scary. I feel physically vulnerable a lot more of the time and so that also plays a different part in my (sex) life now.

This morning I woke early and thought of Steve McQueen's recent film Shame. In it Michael Fassbender plays Brandon, a sex addict. His life is ruled by one alienating sexual encounter after another. When he finally meets Marianne (played by Nicole Beharie), a woman whose company he clearly enjoys, he takes her to a lavish hotel. The same hotel he walked past previously where he glimpsed a couple having sex against one of the building's large glass windows. In the hotel room he cannot perform sexually with Marianne and she leaves. Brandon is then seen having sex with a prostitute, against the window, re-enacting the scene he had witnessed earlier. The glass is all about the surface, about looking and not being seen. It's also about hiding behind something that's transparent. I think that's what spectacle does, especially sexual spectacle - porn - it offers a public place to hide out.

As much as being mostly housebound with illness is about invisibility, it is also about grief. I wanted to write about sex but I have ended up here, trying to work out what this new world has given me. And what is has taken away. If I look closely at my life before I got ill, I know how visible I have wanted to be. Sex was my way of being seen and being validated. And when I think of my more extreme encounters it was my way of hiding out. I don't have that option any more. It is both a blessing and a trial.

What's left is the constant longing for closeness. Friends who also live with chronic illness say the same. Their bodies may not always be robust enough for physical activity but the need for tenderness remains. It's no coincidence that so many of us have close relationships with cats, those small-pawed creatures who demand to be stroked and held, whose needs so clearly mirror our own.

I had hoped to write something about loss, how being ill has robbed me of the sexual dynamism and the relaxed intimacy I was used to. Instead I have unearthed a different truth, one I would not have faced so clearly had I not become sick. There is not one story, there are many and each are different. This one is mine.