Category Archives: Health

Don’t Quit the Day Job: Paul Bassett Davies

Lots of people don’t realise that although you may see work by a certain author on the bookshelves in your favourite shop, many writers still hold down a day job in addition to penning their next novel. In this series, we talk to writers about how their current – or previous – day jobs have inspired and informed their writing.

Today the writer we have with us is Paul Bassett Davies, author of ‘Utter Folly‘ and ‘Dead Writers in Rehab‘. His post is slightly different to the other writers we’ve had on the blog so far but it’s certainly one I can empathise with. I hope that Paul’s post brings comfort and hope to those of you in a similar position. 

Vic x

The job that had the greatest influence on my writing was Hospital Patient. If that seems like an unusual job description, let me explain.

Nearly twenty years ago I was diagnosed with a chronic illness. During the next ten years I underwent a series of surgical operations, and I spent a lot of time in hospital. Eventually it began to seem like a job to me. After all, I was spending about half my life in the role, it was hard work, I didn’t like it, and sometimes I thought it would kill me. So, just like a regular job.

But I flung myself  into my work, determined to be proactive. And, being a writer, I used everything that happened to me as potential material. In the process, I became a novelist.

You get a lot of time to think when you’re a hospital patient, and even more time in the long, slow weeks and months when you’re recuperating, or getting sick again. It’s not exactly free time, because it’s not free from pain, or fatigue or stress. That was why I started to write my first book – to escape all that. I came to writing novels late. I’d done a lot of writing before then, in the way of stage work, short stories, radio plays, movies, corporate films, music videos, short films, and a mountain of comedy for radio and television. But writing a book was something else, and in many ways I’m fortunate that I did it while I was unwell. It made me focus on why I was doing it. Which was, of course, to cheer myself up.

Writing my first novel was like telling myself a long, funny story. During the hours I spent telling it – the hours of writing – I was able to escape the dreary world of my illness, and enter the other world I was creating: a world in which I could, among other things, make other people suffer instead of me, and have a bloody good laugh about it. If that sounds callous or sadistic it probably is, and it’s just one of the many functions of telling stories.

But above all I wrote to give pleasure, firstly to myself and then, hopefully, to readers (although I continue to withhold it from my poor characters). Through all this I began to realise I wasn’t really interested in writing or reading things that didn’t take me out of myself, and change me in some way. I like to think I’m clever, but I’m not concerned with mere cleverness. I’m looking for something else, and the best word for it is delight. I want to delight, and to be delighted.

The work of other people which most often delights me also tends to be completely distinctive. That’s why I’ll always try to see anything the writer and director Robert Lepage does, because it’s not like anything else. The same goes for the music of Patti Smith, Tom Waits or Laurie Anderson. And I’ll always read a book by Magnus Mills or Nell Zink, or watch a Wes Anderson film.

All these people have a unique voice, and I like to think I’m developing mine. My first novel, Utter Folly, was long and sprawling, but my second, Dead Writers in Rehab, published last year, is more contained. And among the good reviews it’s received, those that please me most are the ones that say it’s unclassifiable: that it can’t be categorised, and that it occupies a niche of its own.

My job as a hospital patient allowed me to discover what it is I really want to do with my time, and it changed my ideas about sickness and health. I began to focus less on recovery, and more on discovery. The road to recovery is long and arduous, and its goal is ultimately unattainable: in the end none of us recover from life. But the road to discovery can be enjoyed for itself. It’s all about the journey, and finding delight in every step of the way.

 

Sjogren’s Syndrome: a misunderstood condition.

This is not a post about books or writing. Bear with me, normal service will resume soon (I hope).

It’s been a while since I wrote about Sjogren’s Sydrome (pronounced show-grins although there is nothing funny about it). Over the past several weeks, I have experienced what medics and people with autoimmune diseases call ‘a flare’.

Many autoimmune conditions – like Lupus, Rheumatoid Arthritis, Sjogren’s to name a few – can be compared to waves on a beach. They crest and fall, making the condition totally unpredictable. It’s a constant guessing game. Will I sleep tonight? Will I be in too much pain? Will I walk with a limp tomorrow? Will I walk at all? 

During good times, you can almost forget you have it. Almost. Autoimmune conditions can go into remission but they’re always lurking. In all honesty, most of the people I know who live with autoimmune disease still suffer every day but when things are good, the pain is manageable and they can function. Whether good or bad, I take a lot of medication every day. Even during the good times, I have to pace myself and not over-commit. I find this one of the most frustrating things about Sjogren’s.

Actually, I find hundreds of things annoying about the condition.

Although Sjogren’s is becoming more widely recognised, thanks in no small part to Venus Williams for being so honest about her experiences, Sjogren’s is often represented as a condition where patients have ‘dry eyes and a dry mouth’. I’ve had doctors say to me “Oh, so do you get a dry mouth with that and gritty eyes?” Yes, I do and I wish they were the only symptoms. They’re not pleasant – the dry mouth makes eating certain things difficult and sometimes I get food lodged at the back of my throat – but I would far rather contend with them than what I do actually live with.

In addition to the dryness in my mouth (caused by the fact that Sjogren’s has destroyed many of my salivary glands) and the dry eyes (I produce barely any tears so even when I cry, my eyes are pretty much tear-free), I suffer daily pain all over my body, issues with my lungs and kidneys, brain fog and fatigue. I was told in 2013 by the lung specialist that I may need chemotherapy to dampen down the immune response. Thankfully, that hasn’t been required.

In 2012, when I was going through my last major flare, I was told by a Rheumatologist that I should prepare myself for the fact that I would (not if, would) “end up in a wheelchair”. Every time I wake up with more pain than usual, I panic and wonder if this will be it. I’ve spent time this year working towards acceptance of this. That’s not to say I’m going to hang up my shoes and give up, I will keep walking for as long as I can, however acceptance means I can concentrate on recuperating instead of putting my immune system under further pressure by worrying.

When I saw the emergency Rheumatologist a couple of weeks ago after begging my GP for a steroid injection (which has helped me pick up previously), she commented on how hypermobile I was. People have mentioned this to me before but I never realised that what I could do with my joints was unusual until a nurse went a bit funny during an assessment. The other week, the Rheumatologist warned me to be mindful of dislocation which is common in people with hypermobility but thankfully something I’ve avoided thus far (apart from that one time…). She also congratulated me on not having a steroid injection since 2012, as thought it was something I had achieved which, I suppose, it was in a way.

Over the past few weeks, I have wildly vacillated between sleeping sixteen hours a day and constantly tossing and turning, trying to minimise the pain. It’s the fatigue that has always got me down the most. The feeling that, no matter how long or how well you have slept, you are still exhausted in the most indescribable way when you wake up.

I know I am improving because walking around my house no longer feels like wading through treacle however going to the supermarket is still guaranteed to require a rest before and after.

For those of you who know me, you’ll know I am a motivated person. I hate that this condition makes me appear what some may term as ‘lazy’. I hate that it limits me in more ways than most people can imagine. I feel held to ransom by my own body every day (“if you do x then y, I am going to punish you. So choose one”).

Although I am more accepting of my body and the condition than I ever have been before, I still struggle. I struggle because I want to do more, be more. I don’t want to have to choose to do one thing or another – I want to do both and not suffer for it.

I guess I have a way to go yet. But, you know what? I’m tenacious. I’ll keep on at it. You might see me struggle but you’ll never see me quit.

Vic x

PS – I wrote a poem about Sjogren’s a few years ago, you can read it here.

Another proud day

For my birthday this year, one of my best friends bought me a scrapbook and told me to fill it with fabulous things that happened. At the time, a house purchase had just fallen through (costing us rather a lot of money) and I’d recently been made redundant. I knew my friend’s gift came from a wonderful, encouraging place but I did wonder at the time what the I’d put in this bloody scrapbook, now I’m worried I’m going to run out of pages!

No doubt you’ll read about all of my happy moments in my review of 2016 (it’ll be here before we know it) but I just had to blog about one thing in particular while it’s fresh in the memory. Last year, I wrote about how proud I was at being nominated for Woman of the Year in my Slimming World group. Well, last night, I won it.

Woman of the year

It’s funny how things turn out.

Vic x

A proud day

In the past, I’ve blogged about the sense of achievement I felt when qualifying as a teacher in July last year. I was to finally be a qualified teacher but I was not happy when I saw my graduation photos. The woman in the photos looked about six months pregnant, sweaty and uncomfortable. The dress she was wearing was tight in all the wrong places. That woman was me, aged 30.

I was utterly disgusted. I had managed to avoid cameras for so long that I’d been able to live in blissful ignorance, unaware to some extent of how bad my weight problem really was. OK, so at medical appointments, doctors expressed their concern at my BMI but seeing the photo below really brought home to me how far I was from the idea I had of myself. Basically, I think I had body dysmorphia in reverse.

July 2014

Another thing I’d avoided was clothes shops. I had taken to ordering things online if I was really desperate but, with a new job on the horizon, I had to go shopping for new work clothes. In August last year, I was in a size 20 in Primark clothes – and they were snug.

I think my mum had also got an unpleasant surprise when looking at the graduation photos and so, because we had a family holiday planned for November, we agreed to give Slimming World a go. We initially went with the intention of joining and going for a few weeks to learn the plan then going it alone.

On attending my first session, I sat at the back of the meeting and cried. I cried because I was intimidated by my consultant – not because of anything he did but because I was so introverted that I couldn’t believe anyone would be so confident and outgoing. I cried because of how fat I’d let myself get. I cried because I thought Slimming World was going to be another fad that wouldn’t work. And I cried because I felt sorry for myself, after all, I’d been really poorly and pumped full of various drugs which hadn’t helped my weight.

When I joined Slimming World on Tuesday, 9th September, 2014, I weighed 16 stone 2lbs. My BMI was 32 and I was clinically obese.

Yesterday, I stood at the front of my Slimming World group as a nominee for their Woman of the Year. I also obtained my 2 and a half stone award yesterday, bringing my BMI to 27 and me only 9lbs away from my target weight. I wore size 14 pants from Primark to yesterday’s meeting.

Now and then

When giving a short speech to the group last night, I admitted that I never realised how out of control my eating was. I could blame my medical condition and the drugs used to combat it but I know that my weight gain was mainly down to my lack of self-control. And that’s why I will continue to go to Slimming World even when I do hit my target. I am able to admit now that I could not maintain a healthy weight without the support of the group members and my wonderful consultant, Adam.

Me and Adam, my wonderful consultant

When Adam called me a fortnight ago to tell me I’d been nominated as Woman of the Year, I laughed down the phone. Who thought I was anywhere near worthy of Woman of the Year? I suspected it was my mother and maybe one of the friend’s I’ve made over the course of the last 49 weeks.

When I first started SW, I sat on the back row with my mum and avoided eye contact with everyone. I was anti-social and negative. I refused to tell anyone other than The Boy Wonder that I was a member. I was ashamed. Now, I will happily tell anyone that I’m a member of Slimming World and how it has changed my life. In my weekly group meetings, I’m one of the most vocal people there – can you believe that?! I can’t. Nor can I believe that I cooked Slimming World yorkshire puddings to take to share at the group – I do more cooking than I ever considered I was capable of.

I’m not going to lie and say that I have found Slimming World easy all of the time. I would struggle to keep up with the plan without the help of my mum – she cooks several meals a week for me and that is a huge help. I have had several unexplained large gains – on two separate weeks I gained 8lbs in one week and still have no idea why – but I have never truly believed that I would quit. What would I achieve from quitting? I’d end up back where I started – or worse. The feeling of gaining a lot of weight without a reason is truly devastating if you’ve been trying hard to stick to the diet but if I did quit, I’d certainly be no better off.

Lovely gifts

Adam treated his nominees like stars last night and I felt so special. Although I didn’t win, last night was one of the proudest nights of my life. I may have let myself get to a very bad point but I am well on the way to putting it right with the help of some amazingly supportive people.

If you need a way to lose weight, I cannot recommend Slimming World enough.

Vic x

A poem about Sjogren’s Syndrome (by me).

I think I’ve tried everything
Reading and gymming,
Meditating, swimming.
Pep talks and dressing-downs,
Smiles despite deep-down frowns.
Chocolate then diet,
Don’t want to die yet.
Doctors and pills,
Physios with pins.
Positive mental attitude,
For what I have, gratitude.
Lying in bed,
Shopping ‘til I’m in the red.
Nothing’s worked yet,
But my job’s under threat.
What can I do?
It’s making me blue.
Fingertips and toes,
Nothing that shows.
Look ‘normal’ on the outside,
From people I’ve shied.
I’m scared of their germs,
Their “When will you learn?”s.
Eyes flicking,
Tongues clicking.
Not even thirty,
No longer flirty.
Fat, limpy,
Pathetic, wimpy.
They don’t know how it feels,
The shit life deals.
The never knowing,
When pain will come flowing.
“It’s just dry eyes”,
Said one.
Tell my lungs and kidneys that,
You Pratt.
But I won’t give up,
I’ll pee in those cups.
I’ll give pints of blood,
Let them hear my heart thud.
Sjogren’s,
No grins,
I’ll do anything.

Vic x

Sharon Jones reviews her 2013.

Today, the super strong Sharon Jones is here to review her 2013. This year has been very significant for Sharon in many ways. You can read her blog at http://shazkira.wordpress.com/
Vic x
Sharon Jones
Do you have a favourite memory professionally?
March 2013 saw the end of my 15 year career with HMV. A bittersweet memory of having to tell my staff they no longer had jobs and how they all managed to keep smiling and working hard through the tears till the last minute of the last day. An honour to work with such strong individuals.
And how about a favourite moment from 2013 generally?
So many amazing memories. But the favourite has to be the 29th June 2013 when I married the man I love. We had a festival themed day which we named ‘Wedstock’. The old cliche is that it’s the happiest day of your life, well, it  totally was. I wish I could relive it over and over again.
Wedstock
Favourite book in 2013?
It was originally released in 1982 but I managed to find a copy this year and had a marvellous trip down memory lane.
Favourite film of 2013?
A latecomer to the party but I recently saw ‘Thor 2: The Dark World’ and it was fantastic. Almost as good as ‘Avengers Assemble’ but not quite. Still an awesome film and deserves many pats on backs.
Favourite song of the year?
Whilst thinking of a new 80’s set list for when I DJ at Envy in Romford next, I stumbled upon this absolute tune and then proceeded to listen to it on repeat for weeks. I originally heard a very sped up version in the 80’s classic ‘Girls just want to have fun’.
Any downsides for you in 2013?
Simultaneously losing my job and being diagnosed with cervical cancer was the lowest point in my life so far. It was a very challenging time as it felt like everything was falling apart. I am so very lucky that they caught it early enough to remove it successfully and just in time for me to be able to walk around and dance at my wedding. 
Article
Are you making resolutions for 2014?
No resolutions. I think we should all make changes when they are needed, not purely when a new year rings in.
What are you hoping for from 2014?
Health and happiness. I’d wish for money but I need to earn that. I think I’m due some of the former though.
If Santa was to bring you any one thing you wanted on Xmas morning, what would it be?
To wake up in my old bedroom and to have Christmas Day at my mum and dad’s just like when I was younger.

Sjogren’s surprise (and not a nice one).

It’s with genuine disappointment that I write this blog post. As most of you will know, I was diagnosed with Sjogren’s Syndrome earlier this year after 21 years of recurrent peaks and troughs in my health.

I had been poorly since Feb 2011 “this time” but felt that, following a regular gym routine, I was slowly improving and coming out of this flare. 2013 has been a year of massive improvements for me and I have been really proud of myself. Recently, I have been congratulating myself on maintaining a decent standard of living which incorporated work, a social life and education.

However, today I was diagnosed with a sinus infection and pleurisy following a bout of flu last week. I can’t describe to you the misery I have felt over the last five days since falling ill. I am trying to remain positive and see this as a minor setback but there is a nagging worry at the back of my mind that whispers “This could go on for months”. I’ve been prescribed antibiotics and I’m aware that antibiotics sometimes knock me down. I’m trying to remain positive whilst still resting and allowing my body to repair itself.

That’s the miserable thing about Sjogren’s – and other autoimmune diseases – you can go into remission for years and feel that you’ve “beaten it” but the fact remains that it can rear its ugly head again. I don’t know about any other patients but I know that over the last few days I have been petrified. I do not want to go back to those miserable days where I can’t even get out of bed, never mind get dressed and go to work.

I will continue to try to strike the balance between rest and positivity. I refuse to give in.

Vic x