Living Differently- Making A Mess For No Reason

I was all ready to write about transformation or some other lofty approach to the fact that I've been pretty much, but not exclusively, housebound for weeks and am entirely pissed off about it.  It won't last for ever, it can't. I'm getting so frustrated that I want to punch holes in the sky, uproot trees, fight all of nature, my hair a mess and me all snarly and unforgivable. All this time and so much living still to be done. I'm sick and tired of lessons, of patience, self-compassion and being kind and tender with myself. I'm bored of the hundred tiny gratitudes that I 'm called upon to feel every day. I want to get my teeth in to something, and hard. This cloying exhaustion and obedience to the needs of my body has me broken and vexed in equal measure. Well - that was until I started writing about it. I know I won't shoo the feelings away just by penning a couple of paragraphs but it's good to know that I still have some fight in me, even now. And it was a simple phrase that set me off in the right direction. Making a mess for no reason is what yoga teacher Frances Lewes advocates for those of us going through the perimenopause. She suggests that we create a personal sanctuary where you can put up a do not disturb sign. Not shared and not entered by anyone unless invited. Space to moan and groan and rest and maybe when the energy comes, to be creative and make a mess for no reason. 

It wasn't by design or choice but that's what I've been given here. A small space all my own to create a riot in. As a close friend suggested the other day when I told her how overcome I was with tiredness and the feelings that came with it, 'let it rage' she said. And although I'd rather be working up a dirty sweat, getting muddy whatever way I can, I'm here in my cave making bite marks in everything. Just know that when you come to find me I may not be smiling and pretty but the remaining debris will be something even Kali would envy.

Thursday

Living Differently - The Nothing

I don't know how many blogs and YouTube clips I've seen now of people, like me, living with chronic illness and telling the world (or the part of the world that will listen) Just How It Is from their bed. I'm about to join the ranks. Today has been pretty awful and for the first time I'm blogging from my phone lying in the dark with the light from this palmed sized screen lighting up my words. I feel far too sick to lift my head from the pillow and even if I could summon the energy to take a walk around the local neighbourhood I'd only scare my fellow residents looking very much like a wan Halloween ghost with a time-keeping problem.

I don't know if I believe in anything beyond the comfort of these four walls right now. Although I do know I've felt steam-rollered by sickness before and regained enough energy to take tentative steps out in to the world again. I'm hoping for a gentle ascent back in to a less than frantic activity soon.

Before I began writing this I had a vision of a cartoon that I don't think actually exists anywhere outside of my fatigue fuddled head. There's a plane and God is there (the wonders of imagination mean that you can insert any version of God you wish to here) ushering a line of parachutists out in to the gaping sky. One is wearing a parachute with the word 'Life' emblazoned upon it in tall confident letters. Just before the jump God pats the parachutist on the back saying "Watch out, it's quick !". And that's pretty much how I feel, Woody Allen sums it up much more succinctly here.

So here I am in the dark almost bent double by the feather filled tower of pillows I am lying on and, if it weren't for my writing this, I'd be doing nothing. But would I really, my thoughts running like a high speed train, my tireless preoccupation with myself even when I barely have the energy to roll from one side of the bed to the other.

And then -

I breathe and in that tiny pause between in-breath and out-breath I glimpse the light from the hall shining through the transom above the door, hear the slow march of my alarm clock ticking and this thought occurs to me - what if I can just let the nothing be as it is, what if I can see these moments when I am too ill to participate in what life offers as quiet moments of clarity, and the nothing that I flee from as an illuminated bridge between life and death. If I can stop fighting (even for a micro moment) won't I be better prepared for when the infinite finally comes to take me away ?

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Living Differently - My life, as it is

In my last post I wrote about what it's like to live with terror. By either some cruel coincidence or an uncanny sixth sense that fear has now been made manifest. After some disquieting and unexplained symptoms I have been fast tracked to see a specialist to ascertain whether I have bladder and/or kidney cancer. I had my first appointment this week and am awaiting more tests. I do not know how my body, already pretty torn apart from Lyme Disease, could survive cancer let alone surgery and chemotherapy. I am, as you can imagine pretty blown apart by the news. A friend, who was also diagnosed with cancer whilst pregnant summed it up perfectly. She said that I was like Schrödinger's cat in that I both have cancer and don't have cancer simultaneously, a perfect analogy. So here I am waiting for the medics to open the box to tell me what the next step is. I wonder if there is a peace to be found in this space of both living and dying at the same time. Although my current experience is particularly acute, this is true for all of us mortal beings - from budgerigars to ancient turtles, from the tick that bit me, sequoia trees and even the disco ball stars shimmering overhead - our time here is limited but we are still alive to it all even though we won't be here for eternity.

That's not all. I have been gripped by such overwhelming panic I can hardly speak, which is pretty unusual for a devoted chatterbox like myself. It feels like that the words themselves will betray me, the box will be opened too soon and confirm that I will die the ugly agonising death that I have always feared. And it certainly could be that way. It could also be that I find that there is another cause entirely and I will retreat back in to my Lyme Life momentarily relieved. One thing has struck me in all of this is that if isn't this current challenge that brings me to the cliff edge of myself something else will. I am a fearful person and until I can soothe that fear in myself there will always be something to drive me here,  clinging by my fingertips in an unforgiving storm.

A lot of people have been loving and supportive. Some of it has been eager but misplaced, encouraging me to be positive about this ordeal. Sincere and well meant as it is, it doesn't help. Any chance of stoicism has fled like a cat from fireworks and I am left feeling like I have let the side down for not being more measured and optimistic in my response. However my usual default of examining all my feelings and giving them expression until they disperse has not worked either.

So what has ? My neighbour gave me a Reiki and crystal healing treatment the other day and it helped enormously. I don't know why but some of the strangulation of impending doom lifted. And, it may be a shock for those who know me well to hear this, I began to to ask for help from a non earthly source. It was my neighbour who said she summoned angels to watch over me and I immediately thought of the film 'Wings of Desire' where angels, unnoticed, watch over everyone especially the hopeless and despairing.  I don't ask specifically to be made well all the time, although of course sometimes I do, instead I mostly ask for peace for myself and those close to me during my current trials. I don't know if it's just by putting my faith in something that I cannot see is what helps, or that there really are angels who are there to love and protect us all. I don't know if it matters really - the thought that my welfare may be of concern to the cosmos is enough to quell those terrible tides of pain and worry.

That this is a life, my life, as it is.

And that I am loved.

Fallen shadows

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.

Cause and effect

Living Differently - Naturally Stable, by guest blogger Jocake

Copyright Naomi Woddis 2013 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

8569599640_2ecc2c56ac_b 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

8520844555_06afed5130_b 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.

Bringing Art Home - an interview with photographer Supriya Sunneva Kolandavelu

I decided it was time to interview some photographers and find out what drives them to take pictures, Supriya Sunneva Kolandavelu, who brings to her work such a fresh and generous eye, talks about her own photographic journey.SONY DSC

What or who got you in to taking photographs and did you ever study it ?

My wonderful friend Craig Thomas, who is himself a self taught photographer, is a big inspiration for me. I borrowed a camera from a friend and later met up with Craig after getting Skype counselling on how to work with a camera. Craig was fast and eager to get me on track. He shared with me his wisdom about photography as well as taking me on several 'at home with Craig and on the road' workshops where he taught me what he could get into my stubborn mind. From there I was able to practice photography on a professional level. I have always had the eye but perhaps lacked the instrument to practice it until the last two years.

What sparks your imagination and inspires you ?

I think influences are all around me. I do believe that not only do I detect happiness through my own happy heart, but also evoke situations around me in which mirror my present mode, being happy. The same goes for sadness. When I feel sad and uncomfortable, I will in the same way provoke situations around me, so that I can have the space to express that feeling. I think that in order to express sadness, and relate in that way to other people's sadness, I have to allow the sadness to take me over. If I want to provoke happiness, I will have to provoke it within myself first.

What are you working on now ? I have a vision for creating projects that are produced by the public. I like co-operation rather then competition.I want to bring art home and encourage everyone to invest their time in healing themselves and their environment. I think sites like kickstarter or indigogo.com provide interesting possibilites in terms of getting a budget for a project, along with other sites where people exchange their skills for supporting their (and others) projects.

What have you learnt with your photography over the last few years ?

Being young and quite new in this area, the last couple of years have shaped me in many ways that are still appearing. Being behind the camera teaches one to remove oneself a little more, and to watch without interacting. That in itself has been a great lesson for me.

What matters most to you, how a photo looks or how it how it makes you feel ?

I get caught up in the moment, forgetting time and everything around me. When I realiced that the most beautiful things I have witnessed have happened when I was fully present I started wondering where these wonderful things came from. Nothing else was occupying my mind, for the moment to be good I have to be in it. I have to forget everything else but this moment, and notice it for what it is. If I can see it, it can be beautiful.

Can photography heal ?

I believe human feelings are connected up like a wire. I believe we have within us the healing power in which we tend to seek elsewhere, as all art comes from within.

How well can photography depict the truth and/or expand our knowledge of a world we do not know and have not seen ?

A great artist requires a great spectator. Wisdom comes from going away from oneself, only to come back to see what was always there but lacked an eye to look through.

Finally, please complete this sentence 'I love taking photographs because... I love taking photographs because it provokes a stillness within me and with an attentive mind, listening to my soul.

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. zen-of-solitude-power

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."