The costs of being a “Social Butterfly”

Effort-fully flawless

I’ve been talking about my Gran’s 80th Birthday Party for months. Finding a venue wasn’t straightforward given the necessity of wheelchair access, and a properly “accessible” toilet, plus a function room easily navigated by an electric wheelchair, and a buggy, and enough room to seat everyone else. Through the effort of more than one person, this was successfully achieved.

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All dressed up in my pink lace dress, hair curled, make-up done, with somewhere to go.successfully achieved.

Despite knowing this, I knew I wouldn’t sleep much the night before. There is always too much to think about. Eating little the day before, but drinking the full jug of electrolyte fortified water, helped minimize risk of accidents as much as possible. I knew found a dress that would be comfortable enough for sitting in a wheelchair, and shoes that matched the dress but were still easy enough to walk in.

Getting ready still took me and two carers more than an hour but the finished result was worth it. I still had anxieties over the journey, and surviving the day well enough to enjoy it.

Surviving, and thriving

I found the journey very difficult due to delays and roadworks. Circling roundabouts feels very different when travelling in a wheelchair-access van. The chair pulls you one way, and the roundabout another, despite being clamped in and wearing a full seatbelt. I tell you how relieved I was when we finally landed. I found a corner where I could easily see everyone, and finally settled Eschewing the sparkling wine and orange juice for my usual electrolyte water, I enjoyed all the catching up. My Gran loved it all too, despite protesting months earlier that she didn’t want a fuss! 🙂

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My Gran’s gorgeous birthday cake, decorated with purple flowers and lots of twirly icing.

Dinner was lovely, melon and sorbet, followed by roast chicken and all the trimmings, and berry pavlova for sweet. I considered snapping pics of the plates, but decided I rather enjoy it than photograph it all. Drinking decaff coffee all the time means the after dinner coffee energised me. Enough for a ‘walk around the golf course with my mum, grandparents and nephew. Loved the fresh air and wildflowers/weeds. My favourite bit was all the catching up with family I hadn’t seen for months, and being able to whizz round the room in my chair to choose who I wanted to talk to. This was thanks to the room being re-organised by my Auntie the night before. All too soon, it was time to head back to the home. I even had an impromptu leaving party round the van!

 

Post party hangover

I was of course, exhausted when I got back, and continued to feel shattered even after a good night’s sleep. It was 3pm before I was even awake enough to get up. If asked how I felt yesterday, I would have said I was drowning in fatigue, drunk on sleeplessness, despite not touching a drop[ of alcohol. It’s a big effort to participate in family gatherings or other events, and takes a toll on me afterward which I am still feeling today. Staying in bed would have likely made me feel worse, so I got up very reluctantly. Now I’m managing to write, I’m glad I made the effort. I have fabulous memories of the weekend, and photos I can keep forever. I was able to celebrate with my Gran, and the rest of a family I love to pieces. No price can be put on that, even in terms of energy reserves used. The effort required is always worth it, no matter how much ‘recovery’ is required afterwards.

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.

 

2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for sat n’ all that, with some surprising results, which you can read for yourself below:

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 4,800 times in 2013. If it were a NYC subway train, it would take about 4 trips to carry that many people.

Click here to see the complete report.

One day, one post had over 300 views, and many more on other days. One of my highlights of 2013, for sure. Other highs and lows of 2013, as posted on my FB page today include:

two new hair colours, pierced my nose, turned 30, had the most amazing party with wonderful friends and family, (lots of whom made special efforts to be there) fell deeply in love for the first time but had my heart truly broken, learned all over again what it is to trust God with an unknown future, learned how fantastic some of my fabulous friends are, had an exciting Skype conversation with an establish Christian author who thinks my writing is “fantastic”, learned all sorts about myself… faults too, and made constructive goals for 2014… going forward with my hand in the hand of the One who loved me and gave his life for me…

Here’s to the hope of a new year, going forward in faith with joy and peace, showing God’s love to all who cross our path. Glory be to God’s amazing grace, of which I shall write of in this coming year, with many more topics besides! Thank you for sticking with me, and let’s raise a glass to all that’s to come in 2014!

When I was 10…

Dream
Dream (Photo credit: Xtream_i)

I don’t actually remember what I wanted to be when I was growing up. It took me until the age of nine to be walking unaided without any supports on my legs! At that point, I just had arch supports in my shoes, which I hated so much I refused to wear them. They did hurt my feet terribly tho!

If I remember back to playground games with my friends or ‘imaginary play’ indoors, from what I can remember most of it involved pretending to teach. I do remember filling in a long form in my final year at school which was sent of, my answers were analysed, and the careers advice they gave was that my personality and gifts were best suited to teaching. The careers adviser pointed me towards Stirling University, who at that time were the only Higher Education Institution offering the Bachelor of Education certificate alongside an ordinary arts degree. As I have blogged before, I did go on to do this course for three years. Despite giving it my all, I subsequently failed and was chucked off the course. The emotional fallout and impact on my life, and my dreams was devastating. If fact, it’s not too dramatic to say it was actually life-changing, one of five days to be so.

Fast forward about eight years, and my life has totally changed. Any childhood dreams are in tatters, as I am now unable work, and my life revolves around visits from carers, nurses, trips to hospital for appointments, home visits from specialists, and form filling. This blog, my family and friends, and my church family are the bright spots in an otherwise ‘ground hog day’ sort of existence. As  for my dreams, on good days, I still have those, though for the most part they are locked inside my heart. On bad days, I even struggle to blog or fail completely, sometimes for weeks, meaning I have to build up a following all over again. I refuse to let any of this beat me. My Jesus has promised me an ‘abundant life’, which I continue to pursue.

Fall(s)? Leave it to the expert!!

Though I be only young, I consider myself an ‘old pro’ at some things, having experienced them over and over again: hospital appointments, meds, blood tests, ex-rays, scans, blood tests… and falls. My parents worked so hard to help me to walk. Dumping me on the floor as a wee one, and making me crawl to the towel. Plastic splints, special boots, crutches, zimmers, I’ve used them all. I’ve fallen on all kinds of surfaces: concrete. tarmac, orange tarmac, sand, bark… I’ve been picked off the floor by all kinds of people, and I myself am an expert! When I fall, I can do forward rolls, backward rolls, back flips, avoid obstacles by automatically throwing myself in the opposite direction. My brain has taught itself how to fall. Others have been in awe of me, many times. I think I’ve found my gold-medal winning sport…

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This post is part of five minute Friday! Leave me an encouraging comment, and then head over to Lisa-Jo’s site and have a go yourself!

 

Movie of the year?

Yesterday’s daily prompt caused me to look at it twice! I have often be told that my story would make a good book, or that I should write my story down one day. I guess I have done this in partial way as some of this blog includes memoir style material. As I know who I would love to play the lead, I would love my story to be a book and a movie. Carey Mulligan would be perfect to play the lead in the movie version of the book. Great actress who would draw in the punters, and who has played characters in movies belonging to the drama genre before, including but not limited to her role in the likes of An Education.

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This biopic certainly includes plenty of drama. More than one near death experience, disability, illness, life-saving operations, love, romance, faith, and miraculous scenes, including a couple of appearances from royalty…. There are also many supporting roles, with a great support cast. There is also potential for future movies given the relative youth of the protagonist… However, let’s focus on this particular movie for now.

Drawing of a film reel
Drawing of a film reel (Photo credit: Wikipedia)

It begins with my early life, with me being rushed to a special care baby unit, having been born 12 weeks premature at 28 weeks gestation, following an emergency birth. There is a touching scene early on, and the first of the miraculous moments, which shows the story of how I got my name. Some of the crucial scenes in my early life will keep you on the edge of your seat; including visits to resus, and touch-and-go operations where I was the smallest baby the surgeon had ever operated on.

My early childhood was no less dramatic, as my brain was starved of oxygen at some point before, during or after birth, resulting in a diagnosis of Cerebral Palsy. The diagnosis was certainly bleak, as it included intellectual delay as well as physical disability, and the extent of these was unknown at the time. Consequently, from a few months old until I was 3 or 4 I attended a centre for babies and children with special needs. Here i received input from a pediatrician specialising in Cerebral Palsy, physiotherapy, and specialist care. The next miraculous moment shown on film would be that I had progressed enough to be one of the first children with a disability in my region to attend a mainstream nursery. I would later meet 2 of those who had attended this nursery at secondary school!

Some time after this, there was a house move to Dunblane, where I attended nursery, and went to the same school that Andy Murray, tennis player extraordinaire would later attend!! In my first two years at primary school I had a full time assistant with me due to my level of need. When I was six, we moved back to Aberdeen.

In some respects, my primary school life was largely uneventful when compared to the events of my early life, so this would play no part in the review, though would occupy a few scenes in the movie. Miraculously, I caught up intellectually, and when I was 11, had no further need of the assistant who was with me for four years, as I was able to continue primary school on my own. This caused a ruckus at the time. Secondary school too would play no major part in the movie. There was a house move at age 14, where I stayed until I moved to central Scotland to begin my first degree in 2001. It was here I would meet some of the friends I still have today, and where I would meet my current ‘Special Someone’… though a little more of that later!

The move to university was one of 5 days which changed my life forever, and the events of these 5 days, or even periods of my life, would be the focus of the major part of the movie focusing on my adult life. The only exception to this would include a scene with my childhood ‘adult baptism’, in which I explain why Jesus became the central focus of my life, (or certainly should have been!!) from then on. The next part of the movie would include university days, which showed the beginning of adult illness.

Further scenes became more dramatic, including a move across the border, a life-saving operation, the scene in which I was told I would now require an electric wheelchair full time, and the scene in which I was told I had no choice but to have the ‘care’ I had tried to avoid from age 22 when other disabled friends begin to suggest it, Other scenes include a couple of romances, one on/off romance with a childhood best friend, and another with a former Paralympian!

The movie ended with an update to the present day, showing some of the complexities of life as a wheelchair user who needs help with the basics of life, but has a stellar supporting cast, including the events which explain the introduction of ‘Special Someone’, and the reliance on faith to survive, and thrive through every day, eventful or not. The movie therefore fits the ‘Christian biography’ category, but is far less cliched than some representations of the genre!!

To be continued…