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 - Asking for It

It's a Sunday evening and apart from looking out of the window I have no idea what the weather really felt like today. I've spent all day in bed and the hours have passed in a blur, as so often happens during the more ragged times of my illness. It occurred to me that the friends who acknowledge my health, and all that comes with it, enable me to feel less like an invalid and more like 'my old self'. When my poor health is validated then that 'self' no longer needs to hanker for attention and other parts of me can get a look in.

No one really wants to be ill. It's a whole new landscape and takes time to get to know this new terrain with unfamiliar customs and ways of being. One of the most challenging aspects is learning how to ask for help. I always thought I was good at this. I'd lived on and off with depression for years before my physical health went belly up so knew what it meant to navigate my way through professional and personal support in order to get my needs met when I could not meet them myself. But this is different, sometimes those needs cannot be met. Yes I can find ways of soothing and comforting myself when I am feeling my worst (in body and in mind) and I can reach out to others when I'm desperate but some days nothing works. There is no fixing it and that puts an enormous stress on all sorts of relationships.

Small things do make an enormous difference - help with cleaning, a friend coming over and sharing a conversation and a cup of tea, packing my belongings for my upcoming move - all this is vital and I'm eternally grateful. The problem is I have to keep asking. As long as I remain debilitated physically (and emotionally at times as well) there is no end to my list. And that can be an appalling infantalising state to find oneself.

Writing this I realise there is another way. Yesterday a singer came over with chocolate brownies. A kind and generous woman I don't know well but someone, who in her words, 'likes to help people'. I lay on my bed and it's hard to find words to describe the joy I felt as she sang what can only be be described of as a daytime lullaby. When she left she thanked me. I was as touched by her gratitude as I was moved by her singing. It made me realise that giving and receiving really are part of the same package. If there is someone out there who likes to help perhaps this illness can teach me how to surrender to being helped, to get to enjoy it and finally discard the struggle and battering of self-judgement.

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 - Making it Better

Despite all my protestations of self-enquiry I'm not that unusual, I want to feel better rather than worse, to see change happening without having to break my back doing it. Well, I say that but is it true ? If there's one thing this lengthy illness has taught me is that I am not the person I say I am, even to myself.

My old friend Kitty sent me a photo taken decades ago in a photobooth. She remarked how carefree we look. I've scrutinised my gaze seeing if I could find clues of a future me. Nothing, except my hair is much the same and I'm a little anxious, as ever. What stings of course is not how young we look but how carefree. Of course this is the order of things and the luckiest amongst us get to have at least some taste of freedom in their childhood. But I keep asking myself what happened, where has that open-ness gone ?

Chronic illness is a rattlebag of unwanted and much needed lessons. I say unwanted because I would much rather be happy without having to try and this sickness squeezes the juice of gratitude from you. Because, in the end, being thankful is the only way to live. Bitterness is not an option but I am drawn to its magnetic pull frequently.

Over the last 18 months I've played different mind games with myself. Distraction is not the preserve of those who are ill, but it is for those who are suffering. Better not to feel the pain than feel it, it can all get too much at times. And distraction, even for the mostly housebound like myself, can take many tempting forms from watching light-hearted entertainment to being online for hours, from obsessing over personal relationships to close companionship. It is not always a bad thing and sometimes it's a life-saver.

Sometimes the distraction is enough. But it doesn't always work and then I pick up my books and look for An Answer, a Buddhist or meditation practice that whilst allowing me to sit with my emotional and physical discomfort will actually make it go away. I realise that I swing between these two states - an absorbing distraction on one hand, and a frantic desire to find a liberating truth, an acceptance in my suffering on the other. I work so hard just to feel OK. Whichever path I take I always want to make it better, and fast.

Today, after another night of fretful sleep, I woke at 6am. My heart sank when I looked at my phone and calculated how little sleep I'd had. This is not unusual. I then begin to panic, think of how good health seems so illusive and then, often (my first distraction of the day) I go online and see what's happening. My idea of 'letting it be' usually means my lying in the cold and dark until I'm weeping with frustration and fear. This morning I wondered if there was another way.

I've just begun reading 'True Refuge' by Tara Brach. She talks about meditation as a tool to find the refuge we need and that it lives in all of us. A good friend of mine who has lived with long term illness for nearly 20 years says that Balanced View has helped her access this inner calm, and another tells me that CBT has help her question her assumptions and beliefs. And here I am banging my fists against the door of self-love and acceptance and not getting anywhere.

Like this morning when I counted the hours of rest I'd had, this weighing up of how good I feel prevents me from experiencing what is really going on. My preoccupation with 'making it better' means that I hardly ever get to enjoy the ride for what it is. What if there is no making it better, what if it is just what it is. What If I never get well (and the one thing I can count on is that I, along with all those I love, will die) ? This thought, from an unexpected quarter, gave me solace. If there is no better, no life without some sort of suffering to deal with, there is no worse. Of course this beautiful realisation is momentary but there it is, map-tacked to my brain when I feel uncertain again.

I look at the picture of Kitty and myself again and one thought crosses my mind. It's what my aunt said as we were in the hearse going to my father's funeral. Passing all the gravestones on the way to the crematorium she said 'Look at all these people, they all had their turn'. And it's true my younger self had her turn and this is my turn now. Not to suffer without respite but to be here and to be here now.

Living Differently - Terror in the Body

This is a photograph I took a few months ago of my bed. The title, 'Home', will hopefully mean something to the thousands like me who live with chronic illness and spend a lot of time housebound. The idea for this blog has been floating around my head for some time but I was reluctant to put finger to keyboard and write it. So much of my conversations these days seem to begin with the phrase 'since becoming ill...' and if I was bored by this opening gambit I could pretty much be assured that others would be too.

I have a variety of diagnoses - Lyme Disease, Chronic Fatigue/M.E and Ehlers-Danlos Syndrome. On top of that I have lived with depression in varying degrees most of my adult life. Looking at this comely list I immediately sink in to shame. Although I know it's not my fault that this has happened to me I cannot help feeling I have been invaded by positive thinking body snatchers and should just pull myself together. Needless to say I would never judge others this harshly but there it is, the protestant work ethic leaking in to my daily thoughts and the idea that if I just tried harder I could magic myself well.

Thankfully I have learnt a number of techniques to counteract this tsunami of self-blame, one of the most helpful being a beginner's mindfulness. Even if it is for moments only I investigate my feelings thoroughly, where (if anywhere) they are located in my body and try to find words to describe the sensations. At that moment I become both the observer and the observed and it can give me a fleeting sense of freedom. But what really works is having a continuing creative process and, as I have written elsewhere on this blog, photography has been a bigger help than I could have ever imagined when I very first picked up a camera as a teenager.

2012 was a tough year. It is hard to describe the grieving process of becoming ill with no (immediate) hope of getting better. Everything changes. My life before my current state was not an endless fairground ride of jollity and excitement but I was unaware of how much freewill I possessed. Now my stamina and energy are so low I have become the flakey friend I often used to feel intolerant of. Every arrangement, from making my bed, having a friend over for half an hour, on bad days even cooking myself a meal - can be cancelled at the last minute. I live this new life in pencil, not pen.

Once I could earn my own living and as much as I would like to say this did not impact on my self-worth having to depend on benefits can make me feel infantilised. In short my independence, of both thought and action, was something that were so tightly wound to my identity that losing these to the degree I have feels like a living bereavement.

I am homesick for what I now feel is my 'old life'. Even though I know I am romanticising a past which almost certainly did not exist the way I paint it. I came to realise that my experience of depression was a help to me. I had already encountered such feelings of despair, ones I thought I would never flee but somehow miraculously did. I knew this landscape well, how utterly convincing it was that there would be no sunlight again after the dark night fell. Also, and I cannot emphasise this enough, therapy helped. Therapy really helped.

I had a hunch there was a through-line in my life experience. That's where I got the title of this blog. I have always been scared, on some level. Sometimes I have managed to muffle that fear with frantic activity, over-eating, sex, or any number of fleeting distractions and encounters. Now I live with an illness with an unsure prognosis, in a country where benefits for the sick are being eroded and, for good measure, having to move out of my beloved home of 20 years plus, fear is not something I can bury any longer. The foundations really are crumbling.

But this is not new. I never felt at home in myself, or to the degree I wished for, in the world out there. I have always been afraid of something, of a future where the sky falls, of people I love and depend upon dying, of not being able to survive. And although there are many days I hate my illness with an acidic intensity I realise I also have a begrudging gratitude for what it has offered me. I no longer have to wear a mask. It has been torn from me and I can now face the terror. There is no where left to hide. And this, at long last, is where I begin my journey.

Living Differently - Shallow Focus

I have taken a lot of portraits but very little of myself, until now. Of course there is the odd picture taken on my antiquated mobile phone and sent to a friend but nothing of substance. It all felt a little too exposing and required too much technical expertise (or so I thought). There was another reason. I look quite ragged a lot of the time and make-up and haircuts feel superfluous when your most constant companion is a cat. My vanity was preventing me from exploring that time-honoured medium of artistic expression - the self portrait. I'm not one of those photographers who really plans a shoot. I tend to work with available light and the choice of location is much more about the subject feeling comfortable than it is about a creative concept. I'm not a big fan of gloss. I don't use a tripod. In short I like to get close and see the light in someone's eyes, or how the subtle change of facial musculature speaks of a whole different emotion. The face is a language we all understand.

Recently the M.E related insomnia was getting to me as was the disability benefits process. In addition to this, having only been unwell a year (although it can feel a lot longer at times) I was in the thick of grieving my past life. The tears came and did not stop. I was crushed by my own sadness and could not see an end to my crying. It also meant that connecting to people, especially my good and valued friends who also live with chronic illness, became almost impossible.

I was at a loss. Then I remembered the advice of a good friend who had told me, much earlier in the year when I was again feeling overwhelmed, to just go outside and take photographs which resulted in an entire project 'Still Life'. This time as my anguish increased I picked up my camera, kept the focus shallow and aimed the lens at myself. I could not plan or design the shoot. All I had to do was turn up and reveal myself, in all my desperation, to the camera.

Then something happened. I was both totally in the moment and observing it at the same time. I was able to experience the extent of my terror and not be afraid of it. This photographic process had enabled me to enter in to these feelings without being consumed by them. As a result a friend who also lives with chronic illness posted these brave and unflinching images on her blog. We discussed how self-documentation can lead to self-acceptance.

Then something else happened. The oil-slick mood that had taken over the past few months of my life began to disperse. M.E symptoms are constantly in flux, it's an illness marked by mystery and unanswered questions. Having a good day, week or month and thinking that this may signal the return to physical health is as foolhardy as planning a wedding on a first date. Instead I now have a living archive of this changing state - a brand new photographic project called 'Pretty' and a reminder that the creative process, unlit and unknown as it seems at times, can really save our lives.

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.