Messages in Bottles

Stephen Sutton, the teenager who has made such an incredible difference to the Teenage Cancer Trust with his social media fundraising campaign, has died. There is a picture of him on Facebook with a quote that says ‘I don’t see the point in measuring life in terms of time anymore, I’d rather measure life in terms of making a difference’. In his last weeks he most certainly made a difference, by dropping little messages in bottles and letting them set sail on the web. I had been looking for a way to write about time as it always seems more pertinent at this time of year and to hear those words from a young man, who was struggling to pack as much life as possible into as little time as possible feels very poignant and I was moved. In the same way that there are earth timelines which show how long the earth has been here and how relatively short our tenure has been so far, there is a strange thing that happens to time when it becomes precious. My husband Jez and I were only together for 7 years and this year it will be 7 years since he died. I have now been without him as long as I was with him, but if there was a timeline of my life showing nothing but how long we were together it would not tell the full story. Our relationship may have taken up a relatively small amount of my life, but its influence and endurance are immeasurable.

Grief has a strange way of messing with time and as I am, yet again, coming up to the anniversary of this great loss, I feel sometimes as if it happened yesterday and others times as if it happened to another girl a very long time ago. Grief is a concertina – it is sometimes squeezed so hard the loss feels as bad as if it just happened, whereas other times it is stretched out so far away I can barely feel him anymore. One moment I can be recounting a funny story about him and it’s far enough away to laugh and enjoy the moment even if it is bittersweet. Yet tomorrow I could have a bad day and the loss seems too much to bear. I am left floating again, without my anchor.

In the aftermath of my more recent marriage one of the hardest things to bear was this feeling that I had let Jez down. It seemed to me if I should move on at all with another relationship it should be a great success. When I met my ex-husband, just over a year after Jez died, I thought I was okay. I had spent a year working through my grief, I’d had counselling and I was getting on with my life. One of the last things Jez had said to me was ‘don’t get stuck’ and I knew he meant to move on with life and not mourn him forever. I thought I was doing that. After the split I just felt like I’d let everyone down. I’d had this big wedding and within a year I could see it had all been a sham. My ex’s eventual admittance that he didn’t love me made me feel humiliated. After Jez died my family and friends rallied round and looked after me, and then they’d had to get used to a new person in my life. It was hard for them to accept and it took a lot of work for friends and family to be happy for me in my new relationship. My ex had wanted a huge wedding and I didn’t; he felt that after everything that had happened to me I should want to celebrate, but I felt it should be low key. Eventually he talked me round by telling me I deserved to have a fuss made of me because I’d had a really hard time – he later admitted that really he wanted to show off his new, young wife to his friends and family. He was the one who liked being centre of attention.

So, once the split happened, I had to admit to people that the marriage was not what it had seemed and it was one of the hardest things I had ever done. These people had seen me through Jez’s death, helped me get back on my feet again, to see me get married and have it all blow up in my face only 3 years later. I was embarrassed to get on the phone and tell my friends, never mind his friends and his family who were so gracious about the whole thing. I had to face these hard conversations because I had to take responsibility for my part in the mess. Yes, my ex had ended the relationship and in a horrible way, but I had to take responsibility for not giving myself enough time to grieve, for not thinking clearly about the way I wanted my life to be, for not appreciating the comfortable position Jez had left me in and finally for becoming involved with someone else when I was still too vulnerable to make good choices. I had made a bad choice. Looking back there were warning signs, but I did not act on them; it is this that tells me I was in a vulnerable place because normally I would have stood up for myself. I was left with feelings of rejection, humiliation, shame, sadness and the lowest confidence I think I have ever had. I felt rejected for my illness and the sadness of having a life limiting condition took centre stage and hit me all over again. On top of all these feelings, the grief for Jez came back in a huge tsunami size wave. Just when I needed to hear Jez’s voice the most the fact that he was not here became overwhelming and I missed him with a deep physical ache that nothing soothed. I kept mulling over the thought that if I’d not lost Jez I would never have ended up in an abusive relationship. I was angry that someone, who professed to love me, would see that vulnerability and exploit it so cruelly. There is a line in the Paul Simon song ‘Graceland’ that goes ‘losing love is like a window in your heart/everybody sees you’re blown apart’ and that’s how it felt. I was broken and exposed.

Yet, I found people were so generous. They were more forgiving of me then I ever will be of myself. People mostly accepted my vulnerability and helped me get back on my feet again. In the last eighteen months I have been concentrating on healing myself physically and mentally, and the house move has helped enormously. This May, as it becomes seven years since I lost Jez I finally feel as if I am living out the life he wanted for me. I have the roof over my head that no one can take away, but is also ‘future proof’ just in case the MS does deteriorate. I know I can live here for life. I have listened more to my creative side and have the quiet and inspiration enough where I live to write every day. I have also taken one of my many ideas and decided to run with it and start my own business; it doesn’t matter if it becomes a big success, just that I have regained enough confidence in my own ideas to try. Confidence is something that is slowly coming back and I know that I do have worth, no matter that I don’t look perfect or my body doesn’t always behave. I am not fully healed yet, but I am getting there.

In a strange way, Jez saved me from a lifetime in a bad marriage. Even though my confidence and self-esteem were dropping through the floor and I was being told I was selfish, crazy, lazy and ugly, there was always some part of me that was able to resist. In my marriage to Jez I felt respected, secure, confident, desired and loved. So, when my ex-husband was telling me ‘all marriages are like this’ as an excuse for his behaviour I was able to say ‘no, they’re not’. It was this knowledge of a loving, equal and successful partnership that finally made me go to someone and say ‘this is happening in my marriage and I don’t think it’s normal’. Without that knowledge I may have stayed there for years becoming ever more broken. With this realisation in mind this year I am going to do something to mark the anniversary of Jez’s death with my family around me. On the evening before we are going to a place he loved most and light a candle, then after we’ve sat and thought a while we are going to leave the candle burning so that the light will burn through the night and then fade out in the early hours of the morning just like Jez did. Then I will carry on moving forwards, like the incredible Stephen Sutton, measuring my life not in time, but in the difference I can make.

‘the love between a writer and a reader is never celebrated. It can never be proved to exist. But he was the man I loved most. He was the reader for whom I wrote. That’s what my writing was. Messages in bottles’.

Patricia Duncker ‘Hallucinating Foucault’.

On Feeling like Elizabeth Gilbert

Pureland Japanese Garden and Meditation Centre

As soon as I read Liz Gilbert’s famous book ‘Eat, Pray, Love’ I identified with her in some way. We read it for book club and watched the film. In our discussion some readers chafed badly against her angst because when compared to their lives, she seemed to live a charmed one. There was a very angry reaction in some quarters; ‘I’d like to live her ‘crappy’ life where she got paid to travel round the world and write about it’. I may be gullible but that thought had never entered my head.  I did understand their reaction, especially with the depressing state of the economy and people feeling overworked, over stretched and under paid. Compared to a minimum wage job, a mortgage to pay and in some of our reader’s cases having a life limiting disease, Gilbert did seem to have a charmed life. I don’t think the sugary film helped her case any because a beautiful, sari wearing, Julia Roberts wafting all over the place and feeling unloved seemed a bit of a stretch. I did envy her love affair with Javier Bardem, but I didn't envy her quest to fill this void she had discovered at her core.

Inspired by the book the book club went to a meditation concert held at our local Japanese Meditation garden and experienced an afternoon of singing, poetry and a talk on how the world is an illusion and a lot of the struggles based within it mean nothing in the spiritual sense. Buddha Maitreya did not speak from any organised religion but advocated finding oneness; a sense of existing as a unique individual yet connected to the universe and nature. He told us to stop searching for the thing to complete us, because we are complete in ourselves. We joked at the time about him becoming my spiritual guru in the same way Gilbert had Kehtut in Bali. Yet now, more than three years later that does not seem to be such a stretch.

Every time I go and help next door I am given a little gift. These gifts are meaningful and beautiful to me. I was given a CD of his songs, then a new relaxation CD, then a lovely book that’s about using writing to relax (we’d been talking about using Haiku as a mindfulness technique) and often his latest poetry in little plastic wallets. Last week he gave me a series of poems and one was particularly unusual because it was a series of verses rather than the Haiku form he usually uses. I wouldn't be as arrogant as to suggest that the poem was specifically for me, but he did seem deeply affected by a talk we’d had concerning my health. ‘Not very good health’ as he calls it, is a new experience for him. He is somewhere around his late seventies and swears he has never had a day of ill health in his life. This is so far outside of my experience that we are coming from completely opposite ends of the scale; we are almost like alien species to each other. Even the normal British greeting of ‘hello, how are you?’ is funny to him because he sees no need for it. ‘I am always well, always well’, he says shaking his head and giggling.

One of the parts of Gilbert’s book that really resonated with me was when she was struggling in the ashram with the discipline of early Morning Prayer and leaving her emotional baggage behind her. She wants to be there because she wants the experience to change her in some way and preferably for the better. She wants to be spiritual, calm and to find this stuff easy but it is a huge challenge, reducing her to tears of frustration and making her feel inadequate. After a while, she does fit into the ashram and decides she is ready to take a vow of silence. On her way to get her badge that shows everyone she does not speak she is called to the office. There, she is asked to be a host for the ashram – welcoming new visitors in and showing them where everything is. At first she refuses because she is ready to be the silent, pious, spiritual person she imagines God expects her to be. The director seems to think God has other plans and she has chosen Gilbert precisely for those characteristics she is trying to eradicate. Whereas Gilbert does not value her qualities as a ‘Chatty Cathy’, the director of the ashram has seen a way to use these qualities for God’s purpose. God loves you as you are and will use you as you are she is told; God made her a ‘Chatty Cathy’ and why would he do that if he did not value those qualities?

Maitreya obviously felt something similar about me – he says I have a smiley, approachable face that makes people want to talk to me and this is clearly valuable to him and the people who come into the garden. The poem follows this thinking, but declares we should be honest about who we are as we meet people in life:

‘if you are a not healthy person,

As a not healthy person’.

He is saying ‘be who you are’ and don’t use a mask or pretend to be something you’re not. The harder part of it, for me, is that he says people then see me as a non-healthy person and that’s the part I don’t think I like. I have to be honest for people to understand me and how I feel, but then I don’t want the part I can’t control – their reaction to my ‘non-healthy’ status. Some people may show pity, or not know what to say, but if I am going to be in the world I might as well be honest. He had asked me to help him in his kitchen and I thought I might find it tough, but then thought I’d just get on with it. I worked as I used to work in a tea room and took the orders, then waited on tables. He took me to one side and told me to make them wait and carry the tray themselves, then ask them to bring the tray back when they’re finished. ‘They don’t mind’, he said. He was telling me to acknowledge my illness instead of ignoring it. It is nice to be valued for my good qualities, but also have my problems acknowledged and accepted. Not everyone will react in the same way; for some people my drawbacks will be enough to hide my better qualities but those people don’t matter. I had become used to masking for my ex-husband who used to get embarrassed if we parked in disabled bays, hid my tablets where people couldn't see them and finally wrote to me and said that even the fact that I was ‘pretty, intelligent and younger’ couldn't disguise my disability.

The people who can accept all of you, even the faults and drawbacks, are the people who stay with you. I think my new neighbour wants to be one of those people and I am happy to have found this ‘guru’. My very unique friend.

My Garden Is Your Garden

It is very rare in life that you are given a gift that leaves you speechless. A gift that is so meaningful it is able to change your life.


Most people now know that I have moved house and have become the lucky next-door neighbour of Maitreya, who has a Japanese Garden and Meditation Centre. During my divorce proceedings I was trying to get a financial settlement that allowed me to buy myself a little place outright. My work is only during my permitted hours limited by my disability benefits and although I had a large deposit from my widow's pay out prior to the marriage, I knew I would never secure a mortgage. So, finding a place was a tricky business. I knew I was working within a limited budget and that was if I succeeded in securing all of my money back or whether the judge ruled a different way. It was a case of tentatively looking, then as soon as I got the ruling, diving in quickly. So, there were time constraints as well as financial ones; it had to be the right house, at the right time, for the right price. I was sure it was out there despite being told I might be better renting for a while till the right thing came along. I'd looked at houses in town, houses in villages and houses in the city itself. There were a few things that caught my eye but they were usually too expensive and constantly trying to explain to estate agents why I didn't want a mortgage and couldn't insure myself cheaply was a bit of a struggle. I almost thought renting was an option, but then I widened my search area just slightly and my village came up,
Intriguingly, it was a village where my husband Jez went a lot before he died, purely to sit in the peace of the Japanese Garden. Of course there was quite a lot he wouldn't have been able to access but I think it was the atmosphere, more than anything, that he craved. To think now that he would have wheeled from the car park right passed my house is comforting in some way. I didn't go because I was either working, or would be catching up on my sleep from caring the night before. For a while after he died I avoided it and then eventually I went and it has a transformative effect on anyone who goes there.
I had forgotten, because it seemed so near by, that the village was just across the border from us, in a different county so it didn't come into my normal Rightmove search area, but my house had just been reduced and therefore, dropped right into my price range. There it was, just at the bottom of the search, what appeared to be a tiny little cow shed or pig sty that had been turned into a little bungalow. I got straight on the phone and asked to view and I have to admit that 50% of me wanting it was because of where it is. My village is small and tucked away as a dead end on the way to the river. If you are not going there, you would not stumble across it accidentally. It has no shop, no pub and an old read telephone box that the village bought for a £1. It seemed quirky and there was an air of calm when we went to view - not from us, my friend and I were nuts for the place straight away.
So, gradually, it became mine. I have unusual but friendly neighbours who will always take in a parcel for you, or put the bin out when I can't manage. They seem to be people used to doing random acts of kindness for each other; they cut each other's lawns, they offer to take you to village events and one horrible night in winter when I came home late at night and it was pouring with rain my neighbour, who was walking his dog, came over and opened my gate for me to back in and then closed it after me so I wouldn't have to stand around getting soaking wet. The same neighbour's children baked me a cake when I first arrived and one of my neighbours who stopped to admire my dog suggested that maybe the garden has an effect on all of us. It has rubbed off on me too - I find myself taking in people's parcels because I am often at home, and have made gifts of cake or jams in return for other little kindnesses.
My father and brother stepped in quickly and designed my own garden. It is a very small, odd shaped front garden that was only cement and a turf lawn that was dying off by the second. It needed privacy and plants - cottage plants and climbing and tumbling plants to hide behind and to soften the edges of all that concrete. They built me a pergola for climbing plants, a pagoda to sit under, and raised beds to fill with flowers. It will be finished and useable for this summer and I am often surprised to see people pause as they walk next door to take a look at my garden.
After a few months and a couple of visits to the garden I starting striking up conversation with my neighbour. Maitreya is a quiet man, sometimes lost in thought, but often very jokey and giggly. I had often joked that I needed my own guru like Liz Gilbert had in Eat,Pray, Love but now it seemed to be coming true. Once or twice he had waived the charge to go into the garden, even for my parents, once saying ' you do not pay because you are the mother of my friend'. I was taken aback that he would consider me his friend because I had not done anything to deserve the honour. Eventually he asked if I was the sort of lady who could help him on the weekends, if I had time, on the Sunday afternoons when it gets busy. I said of course I would and he seemed very happy.
By the time I started volunteering I had started to understand the effect that the garden can have if you are open to it. It is a healing place: a place to sit and be, a place that constantly gives something different every time you go and a place to restore a busy, scrambled soul. On Sundays we serve the visitors tea together and we talk. He allowed me to use the garden as the location for my business photos for the Lotus Flower Book Club and he let me borrow the publisher's copy of his beautiful book of photographs, haiku and autobiographical observations. I felt very privileged.
On Mother's Day, we had a very busy day and not much time to talk together beyond asking which tea was where and had we run out of fish food. As we washed up the final set of dishes he prepared mum and I a Japanese rice salad which was a seemingly bizarre combination of warm rice, raw carrot, banana and a special dressing. I wasn't sure but it was delicious and mum and I ate it sat out in the garden recovering from the busy day. Then Maitreya brought out a tray with some jam and cream scones and his special 'Pureland' tea which is a blend of fruit tea with fresh lemon balm and mint from the garden. He laid the tray on the table and served us, which felt like an honour and we talked a lot about my links to the garden and what it meant to me.


After we'd eaten and got up to leave he stopped me and said 'my garden is your garden' and I felt a warmth in my chest at the enormity of the gift. He had spent over forty years crafting this beautiful outdoor sacred place and he was willing to share that with me at no cost and just because he knew it could heal me. I have been having a stressful few months with trying to balance the new business, other volunteering, my health and having my brother and niece live with me unexpectedly. I was finding it tough that just when I had become used to and enjoyed living alone that my house was suddenly overrun. It felt like a cosmic joke. Yet now, when I can, I go and sit for half an hour in the morning and just be. There I can empty my mind of thoughts, they try and creep back in, but I feel able to push them away. It is often surprising to me that I hear the church bell ring and more than half an hour has passed without me noticing. This quiet time stays with me through the day and allows me to be more measured and grounded. I don't stress quite so quickly and I manage my pain better. How do you repay someone for such an incredible gift? I bake a cake here, and lend a book there. I go round and talk and come back with so much inspiration and so many ideas. It is, quite simply, the most generous gift I have ever had.

Understanding Withdrawal

In my work with people in recovery I have come across many different forms of addiction and yet it is only recently that I have come to understand I am an addict myself. Withdrawing from Nabilone over the past few weeks has taught me that not only was I addicted to this drug; I have been and am addicted to many of the others that keep me going. My withdrawal from Nabilone has been tough, but I never once wavered because I knew it was the right thing for me to do with this particular drug. I can handle feeling a bit sleepy or dopey, but this drug really did split me down the middle.
After a week of not taking it the pain seemed to tail off slightly. I did a visualisation exercise to deal with it and it seemed to help. I would lie there and really think about the pain I was feeling; was it constant, or did it change? I thought about whether or not it felt like cold, or heat; whether it stabbed or throbbed; whether it stayed in one place, or whether it wavered? I then asked myself to stay with it for one minute, then another minute, and if I could get through those minutes could I get through a few minutes more. I felt it so I could work out what other things I could try to relieve it. For the pain in my back that runs like freezing cold water down my leg and into my foot I tried moving around, and not moving around so much. I tried cold bags of peas, then hot water bottles, and massaging it. I learned that moving around was necessary once in a while, but there is definitely a limit to how far I should walk! I found out the thing most likely to aggravate it was standing still for long periods, in queues or ironing for example. Cold made things much, much worse whereas heat seemed to mellow it out. Also taking bog standard paracetamol between morphine doses helped because it just kept the pain at a level I could cope with, but didn't make me drowsy.
The pain in my neck and shoulders has been more difficult to deal with. I found that it started with a feeling of pressure in nape of my neck and up under my base of my skull. This was brought on by things like typing, sewing, getting cold on the back of my neck, and the shoulder was made worse by anything that needed a rotating movement or a reaching movement. Repetitive movements were worst and made the pain radiate down my arms and lodge behind my elbows like misplaced toothache. I found that heat worked really well on all areas of pain in my body and on some days during withdrawal I had three or four hot water bottles on various parts of my body, but I also found out that as soon as I put one on the back of my neck I was guaranteed to fall asleep.
The only pain that has seems untameable is behind and around my knee joints. I have some wear and tear to both knee caps but nothing that would explain the swelling that makes my knees feel like they're going to explode when I suddenly bend them and kneeling down is a no no. My steroid injections have lasted 6 weeks and that just doesn't seem long enough. So, they're still in the discovery stage at the moment. They are the main reason I find it hard to walk my dog and that really pisses me off.
Other than the pain coming back and having to learn how to deal with it I didn't suffer too many difficult withdrawal symptoms. Although the changes in my mood and cognitive ability took a while to disappear and made me more aware of problems with the other drugs in my life.
I have often laughed about the fact that if I'd ever had to buy codeine (because a script was late) they warned me it might become addictive after three days, and the look on their faces when I said I'd been on it ten years was priceless. I never really thought that through, just accepted it because what was the other option? Of course once the morphine came along I couldn't take codeine anymore and I had a few weeks of sickness, loss of sleep and headaches as it came out of my system. I was swapping one addiction for another. Then there are the other, nerve blocking drugs and occasional steroids that have their own side effects; my three - four stone weight gain is beside the point on some days but is all I can think about on others. I have one idea of how I look and then I catch sight of myself in a mirror and wonder who the plump middle aged woman is? If I miss an amitriptyline I don't sleep at night, at all. If I miss a pre-gablin it only takes around three-four hours for a feeling of doom to come over me. I wonder what is wrong, and can go through everything in my life to rationally work out why I'm worrying. A few hours later and I could put my head in the oven! I missed both of these drugs in the aftermath of withdrawing and really wished I could get my head together. Important bills went unpaid, dogs went hungry till they made their feelings clear, and on one occasion went to the doctors for an appointment to find that I wasn't supposed to be there. It took me days to realise I should have been next door at the dentist's and now owed them £35.
As things started to calm down I watched a few episodes of Nurse Jackie to catch up on the series. In the final episode she had been sober for a whole year and had a patient with end stage cancer and HIV who was also a recovering addict. I was moved and shamed by his integrity in wanting to meet his death without pain relief in his system. He was an addict and addicts don't take drugs whatever the circumstances. I wondered at the bravery of someone facing death who still wanted to stick to his pledge that he would never go back to the man he was before. It made me think about my own drug taking habits; if a drug is prescribed does it make me any less of an addict. I know I am an addict because without those drugs I would go crazy - not just because of the pain but because I am addicted to the substance and any length of time off it makes me sweaty, depressed, paranoid and anxious. Yet, how do I come off it now?
I guess the line to draw is that you don't take the drug when your illness and circumstances don't warrant it anymore. When you've stopped taking it for the original problem and are now taking it for the side effects of being high. I have diazepam in the house, it is on repeat prescription but I only take it when my symptoms dictate; usually when my neck is completely rigid and, like Dale Winton, I am having to move my whole upper body just to shake my head or turn my neck. I also have oramorph in the house for emergencies, but I haven't taken it for the past few weeks and have been relying on paracetamol instead. Many people have said they would just give in already. They would sit in the house, watch TV and read, take all the drugs prescribed and feel totally pain free. To an extent my pain consultant agrees; 'we do not give you these drugs so you can go away and climb Everest' he says 'we give you them so you are comfy in everyday life'. I know what he is saying and for me it would be the easier route, but I can't do it. I have to be out in the world and developing myself, learning more, creating more and being more. So, for now at least, I will continue to try and walk that fine line with a clear head, and get to the right appointments and on time.

Warning!! Contains Offensive Words!!

This is a word I have been thinking about for a very long time and I think we need to use it more. We use many other words to avoid saying this one, but I have come to the conclusion that they are all cowardly. I started to read Chimimanda Ngozie Adichie’s new book ‘Americanah’ yesterday and in the first few pages she had articulated, much better than I ever will, the same issue and the same avoidance of this word. The word is ‘FAT’ and today I would like to come out, officially as a fat person.

I am not doing this because I want a string of comments flattering me that I am not. Similarly I don’t want to hear the following words that people use as platitudes to avoid saying what is blatantly obvious: curvy, voluptuous, big-boned, and womanly. Yes, I do have curves, yes I am voluptuous but my bones are no bigger than other people’s (I’ve seen them on x-ray) and I know I am a woman, but for me being a ‘real’ woman has nothing to do with fatness. At the GP, they use the word obese and I am statistically in that bracket; I will never be morbidly obese because I’m a very cheery person! Obese is one of the red flags on the top of the screen when the GP pulls up my medical records (my other red flag was for lack of contraception but as I pointed out to her, as I was already obese I was my own contraception). I am reclaiming the word fat because I think for too long we’ve become hung up on it. It is seen as an offensive and insulting word, when those are simply meanings we have attached to it as a society. When I say I am fat I do not see it as an insult anymore, because it is just a word, a word that describes the state of being overweight. I am not being offensive or self-effacing when I use the word about myself I am simply stating a fact. I am fat. See, Susie Orbach was right, if you say it enough it loses its power. In her book ‘How to be a Woman’ Caitlin Moran suggests standing on a chair in the middle of a room and shouting it at the top of your voice until it loses all meaning. If I wasn’t so fat I would climb on a chair, but I’ll just say it from where I’m sitting. I am fat.

Several years ago I went to a medical review with a practice nurse. It was one of the conditions of moving to a new GP surgery and she went through my lengthy repeat prescription list, and then took my blood pressure. She then weighed me, checked my height, and calculated my BMI. She looked at me, in her sympathetic, head on one side way, and in her quietist voice whispered ‘you do know you are significantly overweight?’ She frowned in a worried way as if she imagined she was imparting information I’d never had. ‘Yes’ I replied ‘I do own a mirror’. She seemed surprised, firstly because I was not whispering (apparently if you say it loudly the fat might leap out and get you) and secondly because I refused to be horrified or ashamed.

When I was diagnosed with multiple sclerosis almost twenty years ago now, I was a slim size 10-12. Not the perfect size that seems to be the expectation now but well within height and weight range. That first year I had intravenous steroids three times in hospital and by the end of the year I was a 14-16. Steroids give you a strange metallic taste in your mouth and a terrible feeling of emptiness low down in your stomach. I cannot vouch for other people on steroids, they may have stayed the same, but for me I was always ravenous, I was also immobile in hospital, pissed off and depressed to find that I had a life limiting disease at 21, and constantly receiving gifts of chocolates to cheer me up. Then the strange added symptoms of joint swelling began and my knees turned into red hot and angry footballs overnight so painful and tight that I could not put normal jeans on and had to go up another size to get the leg room. I couldn’t walk far, did long distances in a wheelchair and sat around a lot. My husband and I were young and inexperienced in life, he struggled with my illness and inertia, and we went through three miscarriages before an added mixed connective disease was diagnosed along with Hughes Syndrome (a blood thickening disease that creates a problem moving blood supply through the narrow link from mother to baby). In the aftermath of the miscarriages, and the money struggles caused by only one of us being able to work, we often treated ourselves with cheap takeaway food and more chocolate. By the time the marriage broke down I was a size 20.

Since then the degree of my fatness has fluctuated, but according to the NHS guidelines I am now at least 5 stone overweight. In the remission periods of my illness I eat as well as I can, and walk the dog more and move more in general. When that happens I can drop a stone, but then relapse happens and again I eat more and become sedentary. It is a pattern I have never managed to master or overcome; I don’t need to eat more so it is clearly an emotional response to my losses and illness. The stress during my second husband’s terminal stages of MS and pneumonia was so great I did lose some weight, and then after his death even more came off. Then during my third marriage the fat got worse, because at this point it became a stick to beat me with, and eating cake or chocolate became a form of defiance and rebellion. He would make comments about me laying off the biscuits, or comment on something I was wearing ‘doing me no favours’ or finally resorting to saying I ‘looked like a pig’ and that my weight and illness made me unattractive and undesirable. His emotional abuse dented my confidence and I am still repairing myself and will hopefully achieve healing from this experience as time goes on.

Despite all of these experiences and the emotional baggage I clearly carry with me I don’t mind saying I am fat. To say it is almost a relief, but other people seem horrified by the word. I don’t say it to insult myself, and just as I often reclaim the word ‘cripple’ to describe my disability, I am taking away the word’s power to hurt me. Fat is a fact. Yet when I say fat I don’t mean any of the following things: lazy, ugly, unattractive, undesirable, useless, idle, and unlovable. I am far from lazy when my illness permits me energy, I am not completely unattractive because despite my last marriage I have had good, healthy relationships where I never felt ugly or unwanted, I know I am lovable because I have had those relationships, but also enjoy the love of my family and a large circle of friends who don’t give a damn that I am fat.

There are things I feel I can’t do of course. A lot of this hinges on the limitations of my disability, but other limitations are directly because I am fat. I suffer horribly in the heat and can’t wear flimsy clothing. I can’t get a bikini out and go on a beach holiday because there I would feel more conscious of my weight; it is hard to be completely free and flout society’s expectations and narrow concept of feminine beauty. Yes, I see women in magazines that look bloody gorgeous and I do wish I had the legs of a supermodel sometimes or could wear whatever clothes I like. However, I have developed my own style and I like it and I would much rather visit a museum or art gallery on holiday than lie all day on the beach. I am slowly accepting that my life and my appearance are different from the rigid norms displayed in women’s magazines. I also stopped buying the sorts of magazines that are obsessed with weight issues, and even other women’s magazines that like to put on a show of appreciating a wider concept of womanhood and then print four pages of extreme diet advice.

I am also aware of the health implications of my weight; extra weight does put extra pressure on my joints and make it harder to mobilise, but the extra weight did not cause the disease in the first place. I do not mind being told to lose a few pounds by a doctor who acknowledges the effect of my illness and the drug treatments prescribed to alleviate the symptoms. I had been on pre-gablin six months before my doctor told me that in the first year one of the side effects is a weight gain of around one and a half stone. It’s hard to fight against these drugs and the illness, as well the effects such an unpredictable disease makes on your mental health. I have seen people crack under the strain and develop drinking problems, agoraphobia, clinical depression, drug addiction or even commit suicide. Thankfully I am still here, but I am still fat.

Maybe there will come a change in society where human beings, particularly women, will not be judged on their weight and appearance before anything else. I hate to see people constantly striving and waiting to do things when they’ve ‘lost a few pounds’ as if happiness will magically become theirs once they are a size 10. It won’t, because happiness comes from within. In Adichie’s book, her character Ifemelu sees a school teacher who is wearing a mini skirt, despite being significantly overweight and she recognises a ‘rightness’ within the woman, a sense of confidence that says ‘I am aware I am fat, but fat is not the only thing about me’. It is about saying I’m here, I’m fat, get used to it and then getting on with life without giving it too much thought or letting it take over. For me it is reminding myself that fat is just one of my characteristics like my green eyes, my blond hair, and my dimples. It is about getting on with everything I can in life while knowing and accepting that I will always be a little bit fat.