In recent weeks, I….

Hi everyone, here I go with my latest attempt to kickstart my blog after some months of absence. Finally, finally, I feel ready to start writing regularl
y again. Hopefully, I’ll manage to post three times a week. For now, lets revisit the last few weeks in my world! In the past few weeks, I:

Have been concentrating on all the basics.

For me, this has meant more than just getting to the end of each day in one piece. Just getting from one hour to the next has often been a challenge, either because of a much disrupted sleep the previous night from insomnia, pain, (be it joint, stomach, or back) or due to my my highly functioning stoma, meaning I am up to empty it several times a night, despite using an appliance with one of the largest available.

If I settle down for a nap the following morning after a bad night, one hour, even two is never enough. And yet, keeping going is not an option either, as I am extra uncoordinated, clumsier, and even less able to think straight than usual. The problem is, after such a long nap, I have no inclination to write.
Additionally, i’ve had never-ending lists of admin, be it phone calls, emails to write, forms to fill… Unfortunately, these things have not been the only difficulties.

Have been confined to one room, for the most part.

After all that busyness, I am exhausted. This has been exacerbated, at least for the last six weeks, because of the unreliability of my electric wheelchair, meaning that even sitting still is hard work, as I need the support which I have from the pressure cushions on my chair, to enable me to sit up comfortably with less effort, less pain, improved balance and posture, and without putting undue stress on my back, which is already incredibly sore most days. Even when my wheelchair has been returned after being away for repair, I’ve been lucky to get the use of it for a full 24 hours without it stalling. As it is, it has stopped altogether, and is awaiting collection for the the fourth time in six weeks. How do I manage without such vital machinery? The truth is, I don’t! For the vast majority of this time, I’ve been confined to one room, usually my bedroom, as I have a profiling bed. This means I can press some buttons to adjust the mattress (in this case, a high-pressure one) to more effectively support my posture, and change my position when I am uncomfortable or in pain, without actually having to move my body. I am incredibly grateful to have access to such equipment, as without this I would be in constant unrelenting agony.
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Fortunately for me, I have occasionally been able to leave the house in my (ill-fitting, too small and unsupportive) manual wheelchair if a carer, family member or friend has time to help me. This has mainly been for hospital appointments or the food shop. I’ve been unable to attend church in this time, as spending long periods of time in this manual wheelchair has done, and would do much more harm than good. While I am awaiting a permanent fix or replacement for my electric wheelchair, the confinement continues.

Have begun a tailor-made eating plan!

What am I doing with my time now I’m even more restricted than usual? In part, I’ve used the
time to plan food shopping, cooking and eating meticulously. In partnership with my dietician, I am eating much more lean protein to help fill me up without added bulk (or calories) in smaller, more regular meals and snacks. Due to my unique circumstances we’ve had to devise inventive ways of including all necessary vitamins and minerals in my diet, without me having to prepare, cook, eat and attempt to digest lots of fruit and vegetables, for me to struggle to absorb the nutrition anyway due to the shortness of the piece of gut I have left, and reduce the risk of blockages in the stoma, or over-filling of my ostomy bag. What a challenge! (Apologies if you were eating while reading this!) With help from care staff, also I’ve been using a reasonably comprehensive soluble vitamin and mineral tablet on a daily basis, to boost anything I am managing to absorb. As recently as the last few days, on advice from a GI consultant, I’ve recommenced a fluid restriction in combination with a litre of dioralyte daily (rehydration salts and electrolytes). All of this, though effortful is giving me more energy, helping me lose weight by reducing the temptation to snack or comfort eat, and generally feel better about myself. The results are also evident in regular blood tests. A long hard slog rather than a quick fix, but will all hopefully eventually be worth it.

4. The once gaping wound in my abdomen is no more!

Said wound has finally healed, though it needed loads of TLC and took an arduous five months to heal, some 3 months less than my fantastic surgical team expected. My surgeon himself, had some doubt that the wound would ever heal completely, but at a joint medical/surgical appointment last week, it was lovely to be able to tell in person that it had. The doctor said I made the surgeons day. I’ll bet they were glad to have good news for a change, especially given my prognosis and the miracle that I am here at all. As a Christian, I believe that ultimately God has orchestrated this healing, though other factors have undoubtedly helped including keeping the wound free other than the pre-existing infection on the outside of the wound, keeping it clean, and mostly dry, even while washing my hair, no mean feat in itself!

What else have I missed?

I have spent time doing the things I love again: cooking, baking, reading everything from ebooks on my kindle app on my smartphone, blog posts, news articles, catching up with friends family over occasional coffee or meals at home, or even more occasional meals or coffees out when accompanied. I’ve participated in church services online through skype and facebook, and even led my first one last Sunday. A separate blog post on that is to come. In the meantime, contact Dave Roberts to find out how to get involved in VOWchurch if you would live to, or even if you would just like to find out more.
Also on Facebook, I’ve joined a campaign called “Get Your Belly Out”, begun by four amazing yet ordinary girls seeking to raise awareness of Inflammatory Bowel Disease (IBD), raising money for a cure, and building up a loyal, friendly, support community in the process.
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Lastly, I’ve participated in a webinar (a seminar on the web) or how to write memoir, tips and tricks to use, and what to avoid! This was organised by Writer’s Digest, and run by an agent in America on a weekday lunchtime, broadcast all around the world to aspiring writers in various time zones, 6 pm in the evening, in my case! I managed to stay awake (hurrah!) content rating for virtually the full 90 minute seminar, having learned lotads. I’m now working on the 1500 words to email to the agent, due in a mere 9 days (eeek). On that note, I must scarper!

Writer in the making….

This is Part 2 of the Weekly Writing challenge from 24 March. The prompt went like this:

Every superhero has an ‘origin’ story of how they came into being. If applied to myself, How did I begin to be a reader, and eventually a writer? 


 

An embarrassing start

I th­­ink I was about seven or eight years old when I attempted to write my first story. It was simple and I tried my hardest to write something good. It was definitely a love story. I remember being quite pleased I’d written something from scratch, all by myself. I must have shown my Mum that I’d written it. My family was there one tea time or something, I think my Grandparents were there too. I remember Mum telling me to go and get my story, and how desperately I wanted to say no, because it was not good enough for people to hear. However, I reluctantly brought it.

I remember my mum saying, “this is the kind of stories she writes… and she proceeded to read it out loud. I distinctly remember wishing I could disappear, acutely embarrassed at what was happening, but worse was to come. Mum finished reading it, and everyone laughed, lots. I remember wishing I had hidden it away and not shown anyone.

I wish I had been able to forget it, work on my vocabulary and practice my writing more. The incident when I was 8 really sucked the confidence out of me. I’ve always allowed myself to dwell on embarrassments. I don’t remember writing stories after that. I did write occasionally when 10 or 11 in a diary with a gold padlock and a polar bear on the front. I only wrote stories in school though not always successfully, the rubbish I wrote when asked to write about a chocolate factory being one example! I did have more success with creative writing at secondary School and University, though I never wrote in my free time.

Nowadays, memoir is usually my favourite style of writing, as I love telling stories of memories I have, people I have met, and events I have been to, as well as a spiritual record of the ways God has used the difficult things, as well as the good things to mould me into the person he wants me to become

Lots of my experiences and everyday life in general differs from the norm because of my ‘being unable to work’, through being both ‘sick and disabled’. A fellow Chrons sufferer started writing and campaigning because she was desperate to have this description recognised. When I read that in a tweet I remember thinking — ‘I am so glad someone’s managed to lobby for that and been successful, as well as relief that I wasn’t alone.

Equally when I write posts and publish the material in my blog, if other people comment that I am I not alone in whatever I write about whether it be discrimination of some kind, difficulties coming to terms with health problems or whatever and share their own experiences, it reassure me I am writing about the right things, and I feel privileged others are sharing their experiences with me.

I’ve also written about news items, popular topics, or a longer comment on things I’ve read on other writers’ blogs. I didn’t think I would enjoy writing about current affairs as much as I do. I had a complex that I wasn’t knowledgeable enough, or enough of a campaigner to write on disability issues. However, some people have seemed to get a lot out of what I have written on the welfare state, especially people who previously did not know a lot about it. There are times I manage to engage others, and get a proper discussion going such as a post I wrote in response to a GP’s comments that the majority of disabled people could work if Stephen Hawking can! This went viral, receiving almost 400 views in one day and causing a lot of debate on social media, both in support, and in criticism of my arguments. (I have always loved debate, but was never confident enough to join the debating society at school, despite my Mum’s encouragement at the time).

My dreams slowly grew as I continued writing. At first, I was happy writing solely for the ‘Big Bible’ website. Then I started my Blog because a discriminatory experience buying glasses in Specsavers got me so fired up I had to write about it! As I wrote, I wanted to write more. Others liked my writing and began to read regularly, ‘liked’ my posts, and my confidence in my writing and in myself increased. This continued for at least a year, however, I found that I became unable to write consistently especially since my health has deteriorated. This has really hurt my confidence, because I very much wanted to write and I would often find that I couldn’t. Obviously the numbers who read have fallen dramatically.

For more than ten years, friends and family members have urged me to write my biography. Blogging has given me confidence to think about doing this because so many read and ‘followed my blog at one point. I started off writing a diary of hospital experiences because I wanted my story to from the ab differundance of other biographies out there. I still haven’t decided what to do because I feel totally torn. Is my story ‘different enough’ to write about on its own, and if so where would I start? And what about the thousands of words I have written so far? Writers, do you have any advice / Suggestions?! As for publishing, who knows, there is much too long a way to go before I need to think about that, surely?

I write for the same reasons I Blog. I wrote something this time last year called ‘Drum Roll Please’. I wrote the following about having a way to express myself. “[T]o have found an outlet which I enjoy, uses my gifts, engages my brain, and connects me with people who have similar interests is a joy.” Slightly clumsy phraseology, I admit, but does largely capture how I feel about writing.

God is using me, and my writing. Writing helps me to explain how my faith makes a difference to the difficult times in my life, of which there are plenty. I hope and pray this will be a witness to those who read it. I decided early on that as much as possible I would keep my blog ‘real’, by writing honestly, including the good, the bad, and the ugly, without dramatising things but also without glossing over the tough stuff.

I am mostly confined to my house, but reaching others from my living room! About a year ago, I wrote the following:

I aim to inform as many people as [I] can about the complexities of life with significant needs, and deep Christian faith and to live as full as life as I can. I am aware of other disabled people I know who live fuller lives than I, even with a more significant physical impairment. Though I would sometimes wish my life was more varied, in general blogging is my way of being ‘out and about’; reaching people I would not otherwise meet and finding a creative outlet, while having a lot of fun at the same time!

By searching and reading I am constantly learning, keeping up to date with some of the changes to policy, practice, disability laws, news, and current affairs. I have to discard the scare stories and keep only the useful information if that makes sense. I keep writing because I want to continue to reach out to others, especially those who live with constant health challenges, as I and many others do, and to encourage people, impaired or not, to learn to keep going when life gets extra hard, because giving up is not worth it in the long-term. I continue to need a way of using my God-given gifts, and of continuing to learn new things in a fast-paced world.

I heartily wish that when I was young, I had persevered, and learned the true discipline of getting up early, pouring a drink, and having time ‘quiet time’ to read my bible and pray, before writing for a few minutes, even. I’d like to write daily, and sometimes manage it for a few days at a time, but don’t keep it up as I then sleep through my alarm, or I can’t keep it up as my health gets in the way.

My favourite time to write is early in the morning, say beginning between five and five-thirty am if I can physically manage to wake up when the alarm goes off, and slide into my wheelchair. I sometimes use prompts such as this one from WordPress, 365 Days to Build a Better Blog (Rowse, 2011) or for girls and women Robin Norgren’s books, including Writer Girl (Norgren, 2013) . I had the privilege of chatting with the lovely Robin for a Skype jam session or two a while back. The ‘days’ aren’t meant to put the pressure on for you to write every day, but simply when you have the time, energy and head-space.

Please do let me know if reading my story of my own clumsy beginnings as a writer have encouraged you to have a go for yourself, be it with scrap paper and pencil, fountain pen and fancy paper, spoken memories on Dictaphone, iPod, or mp3 player to write later, or laptop / iPad and word processor.


To have a go at this challenge for yourself, click on the blue text (or tab to the word “challenge at the bottom of this post and press space if you have a screen reader).

Bibliography

Norgren, R., 2013. Writer Girl: 42 Days of Exercises to Deepen your Faith in Your Ability and Your Purpose for Writing. 1st ed. s.l.:s.n.

Rowse, D., 2011. 365 Days to Build a Better Blog. 2nd ed. s.l.:http://www.problogger.net.

 

Five minute Friday: Write

Writing
Writing (Photo credit: Wikipedia)

 

There are many times where I am too poorly to write, or so tired that I either cannot get my words out or I cannot sit up straight enough in my wheelchair to write without falling asleep. However, there are other times when the words pour out of me. If you are a regular reader to my blog you will know I am quite an emotional person at times. Today I am in pain. Physical pain from yesterday’s first hydrotherapy session, and heart pain, as the bloke formerly known as ‘special someone’ and I have had issues this week. Oh how messy can life get? However, their loss!
I am planning a weekend of writing to take my mind off him, and off the hurt; Three different posts for this coming week, a reflection on the Holy Spirit for the minister of a church I used to attend for the beginning of their series on the same, a guest post for Wendy Van Eyeck’s blog ‘ilovedevotionals.com‘, and yet I feel I am missing something. Pain provides great motivation for writing though – Is this one of the greatest paradoxes ever?

 

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To have a go at Five-Minute Friday, just click the link! Write for 5 minutes, non stop on the given subject, and you may just surprise yourself.

 

Today is brought to you by the letter ‘W’!

English: Waves breaking at Acapulco.
English: Waves breaking at Acapulco. (Photo credit: Wikipedia)

Today’s daily prompt couldn’t be simpler. At least it sounds that way! The reality may be different. Let’s see shall we? (Why not have a go yourself?)

Pick a letter, any letter. Now, write a story, poem, or post in which every line starts with that letter.

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Worry. Wearying, and wearisome.

Whispering in my ear, ‘what about this, what about that’

‘Why did they say this, why did they say that?’

When will I learn, to listen?

Waves roll, faster and faster as the storm within intensifies.

‘Where are you, Lord?’ I cry.

‘Where I always am, holding your hand’, I hear you say,

Whispering, Be still my child, be still and Know, I AM.

baking, writing, and banana loaf!!

The daily prompt from the 17/08/10:

Scribble down the first ten words that come to mind.

baking, hoovering, cleaning, ironing. shopping, money, benefits, banana loaf, writing.

Pick three of them as your blog title. Now write!!

My ‘ten words’ are my rather hotch-potch to-do list for Friday, just gone. Not being very together in recent days due to a medication increase, I have to be kind to myself and take things one day at a time, while sleeping lots and trying to handle whatever the day throws at me. It’s fitting that there was a ‘daily prompt’ to match my mood.

I love baking. It is a hobby that lifts my mood, however I am feeling, and there is something delicious to eat at the end of it. It also makes me feel ‘normal’, connects me to the side of the family who bakes, and uses leftovers! What’s not to love?!

On Friday, I made banana loaf, which I have made many times before. It is one of the foods on my ‘snack list’ from my dietician. I adapt it to have half wholemeal, half white flour in and use buttermilk to give it a unique taste. I do follow a recipe to make it though. Today I made soda bread and rock cakes with cranberries instead of raisins, and half a teaspoon of jam in the middle.

I was supposed to do lots of writing to do this weekend, as I think I explained in my previous post. Firstly this blog post, a competition entry for Tearfund’s magazine, a testimony piece, and a blog post for ‘Big Bible’.  Instead, I did lots of sleeping. I wish I could say I felt better for it, but this morning, it took me  a long time to wake up and every part of my body ached. Over the course of the day, it has eased a little, meaning I can get on with the writing, but I may just eat a couple of jammy buns to ease the rest of the aches and pains, and keep me on task!

One of my many skills…

Only writing three times a week now means I have my pick of the ‘daily prompts’. This one is from the 18th, and it goes like this:

What have you been putting off doing? Why?

English: an animated clock
English: an animated clock (Photo credit: Wikipedia)

There are all sorts of things I put off doing, and all sorts of reasons for it. On my ‘good’ days I get a few things done, and I have resolved to also do a couple of things on those days which I may have put off. On bad days however, my “shoulda, woulda, coulda” list just gets longer. Things that I think I can put off I do. The trouble is, not being an organised person there is no logical reason things end up on that list, even things that should only take a short time to do. Even on the good days, I never know when I will need a nap. At the moment this is a ‘good’ day, or at least a good morning. I will be exhausted by the afternoon. If I only prioritised things that really needed doing I might be more organised, but I would never get anything done that was just for me. Other days, like yesterday, I fully intended having a writing day, as horse-riding was cancelled. However, I craved company, and sat watching day-time television for several long hours.

This morning, I finally attempted a short story, which I had put off doing, as I genuinely didn’t think my efforts would be any good. The last one I wrote was more than ten years ago in my first year at university. I have other writing projects to attempt. The magazine Tear Times is running a writing competition, and their editor Peter Shaw tweeted me to let me know, and ask if I had seen it, and if I would think about entering. I was very daunted to even begin, and I at this point I have only written a very rough first draft, having forced myself to write something very late one night, having taken several days to think about the brief. I am worrying my entry will not be up to the standard of the others! This is something that plagues me and one of the reasons I put off starting a blog for so long. However, some lovely people have said some lovely things about my writing, so I am beginning to have a little more confidence with it.

I also have a 500-word testimony to write for Christian disability charity Through the Roof which I have put off as the deadline is after the one for ‘Tear Times’. I have a head start on it as I previously wrote a testimony of the same length for Christian Radio Station UCB, which was read out by Mike Rimmer as part of a section called ‘My Story’.

The big project I have really been putting off doing, however is this: For several years, various friends have suggested I write a book. The very idea terrified me. Who would want to read it? Now I have written a blog on and off for a year, and a had a not very subtle push from specific friends, I am beginning to think about it. However, old habits die-hard. I am still tempted to shrink into the background again. Even short blog posts are such an effort most days. However, others who have recently submitted first drafts, or who are currently writing them, have inspired me too. I have yet to decide what style of book it will be. This I do know; that I will write about what I know… and my faith in Jesus will also play a part. Without measures of healing throughout my life, I would not be here. I am on roughly my 7th or 8th chance at life.

While at university, particularly the first time round, my ability to procrastinate was well-known. I was the Queen of Procrastination. To my shame, I admit I submitted some essays late which horrifies me now.A friend once bought me a ‘little book of procrastination!  Were I to start over, I would want to do things completely differently. I would always start each year, or even each semester with that intention, and every semester I would fail spectacularly. Ill health had a part to play in this, as this was round the time hospital admissions began. I was also starting to struggle with my mobility and be in more pain, and it was three years before I sought help from a learning assistant for things like typing, accessing the library and so on. I didn’t think my disability was ‘bad enough’. I did not want to admit to myself how much I was struggling. However, I began to have panic attacks. Eventually I gave in and accepted some help, however, it did not really help with my lack of organisation. Even during my Masters degree I had all the same struggles, despite best intentions to the contrary. Ill health also had a part to play as I got poisoning which put me in isolation in hospital, and exhausted me for months.

However, none of this ever sat easily with me. I read a bible study about procrastination very recently which said Christians have no excuse for putting things off. Even though I know this, it still has a hold over me. Whenever I do manage to complete a ‘To-Do list, or even the majority of one, I do feel a sense of achievement. Failures from the past still haunt me. I think “I managed so and so, but I didn’t manage this, that or the other…”. I have started to use the ‘schedule’ feature on WordPress, so I can write posts one day, but they are not available to you until a couple of days after that.

I hope one day, to  conquer this bad habit of mine, with Jesus help. Until then, however, i will still have my “shoulda woulda, coulda” list. As for when you can expect the book, your guess is as good as mine. You do have my word I will start on the book soon, though just remembered a monthly writing commitment…! Will I ever beat procrastination?!

Mirror, Mirror (2)

Mirror, or vintage iPad (thanks obni)
Mirror (Photo credit: christing-O-)

A comment left underneath the post I wrote about Standing Out Sitting Down said how insightful the post was, which has given me some confidence to attempt this prompt from the 14th August:

Think of your blog as a mirror: what does it reveal? Consider your blog name, theme choice, design, bio, posts… what does every element tell you about yourself?

The title, ‘sat n all that’ was actually thought of by someone else. One of the carers, actually who I don’t see now but they used to have loads of shifts with me. The blog started as a project to take my mind off things round the time I was struggling to adjust to changes in my circumstances, and to give me another purpose to my day. I find it a little easier to think of titles now, but found it impossible in the beginning. The title started off as ‘I may be sat, but I’m all that’, but I felt it wasn’t snappy enough, and wanted to write about more than just being sat in a chair, or only about disability issues. After all, my life is more than these things. My life is not nearly as varied as I would like; ‘special someone’ is no longer on the scene, I am unable to work, and I’ve even had to cut down on the blogging, to keep up with it. However, I have amazing friends, a great church family, and have more interests now, so do still have variety of people of things important to me to write about.

The design started as something else, though I can’t think what it was now. When choosing a theme, I wasn’t really bothered about the aesthetics. I wanted something clear and easy to read, so as wide a range of people could get access to it as possible. As ‘barrier-free’ as it could be without designing a site myself from scratch, as a few friends use screen reading software, and I wanted anyone who read it to be able to get access to it on whatever device they use to  surf the web. That says a lot about me, really. I’m an open, friendly person, and I find a lot of purpose in reaching out to others, in whatever small way. Plus, a lot of disability access is  an afterthought, and not from the outset, and I wanted to think about it from the beginning.

The theme is trickier. I like the idea of being a ‘niche’ blogger, and I guess I am in some ways as I write about disability, or faith, or more often, disability AND faith, together. Both are integral to my life, and intertwined in many ways. My faith in Jesus is central to helping me cope with my challenges, and my challenges deepen my faith. I didn’t want to write narrowly on just one theme, as I lacked the confidence to think I could come up with posts easily enough on just one theme… plus, as I say, I couldn’t really separate the two, so I am much happier with a ‘hybrid’ blog. I think, now the blog is a year old, and though there have been stretches of about a month at a time where I have written little, I am more comfortable with the themes I write about these days.

If you look at the ‘tag cloud’ to the right of a post, the topics I write about most are in bigger letter than subjects I write about less often. At this time, the topic in the largest lettering of all is ‘disability’. I am not entirely comfortable with that, as there are so many bloggers out there with a disability, people who have campaigned for years, advocated for others, been active in politics, and really know their stuff. I feel so intimidated by that because I worry so much that their writing on disability issues is so much more informed than mine, and what right have I to write about it so often when any of them can do a better job?

This is partly a complete lack of confidence, and a desire that if I bother to write at all I want to write informed, quality content; otherwise, what is the point? I guess it is partly about perspective too. It sounds idiotic to point this out, but obviously no two people who live with a disability will have the same views even, on their disability, so it stands to reason both will be able to offer different perspectives. I find it absolutely unbelievable that my most popular posts have been disability related.

The first post to which substantially more people read, and the first shared more widely, was one I wrote at the end of last year, about David Cameron’s speech at 2012’s Party Conference. Specifically, focussing on two little words he used: ‘Compassionate Conservatism. Now, a complete oxymoron…!! This particular post was also (he claims!) read by my MP, – WOW! My most popular post ever, I wrote very recently, about not being able to work, and trying to address the popular thought that if some severely disabled people can work, then why can’t every disabled person do likewise. To my amazement, this post was shared around upwards of 100 times, and has been viewed 400-500 times, at least! I’d never have thought my most popular post would be about these things, rather than something completely personal or something faith-related that I feel I know more about. I suppose I just am ‘myself’ when i write, as much as anyone can be, of course.

Another post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt about it too. The reaction to it really surprised me, as some people got a lot out of it. Those kind of posts seem to be the ones that really strike a chord with people; again, something that surprised me. It was reasonably natural, though tough, and painful, to write about, as I am very much a ‘heart-on-my-sleeve’ person. In some ways, the people who read this blog have shaped what I write about.

I used to answer more of the ‘daily prompts’ provided by WordPress, as i lacked the confidence, and often the inspiration, to come up with my own topics. This has got easier as time has gone on. Also, given the squeeze on welfare claimants that is about to get so much worse, the stereotypes peddled by the Government, and some sections of the media, and the ‘hot potato’ that is the Welfare State, the topics offer themselves at the moment, and it is also topics that are a big part of my life, whether I want them or not. No benefits, no money, therefore no independent life. As my Mum says, they didn’t bring me up to sit on the sofa for the rest of my life… so I really value the semblance of a life that I do have, and it gives me much more to write about than if I sat on the sofa the majority of the time!!