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

Living with Sjogren’s Syndrome.

What if I told you that Venus Williams, Olympic medal winner and former world number 1, had a debilitating auto-immune disease? She may have won seven grand slams but Venus has experienced times in her life when she couldn’t lift a tennis racquet up. What is this devastating illness? It’s called Sjogren’s Syndrome (pronounced “show-grins”).

I, too, have recently been diagnosed as suffering from Sjogren’s but, up until December 2012, I had never heard of it. You probably haven’t either.

Sjogren’s is not as rare as you might expect, approximately 3-4% of adults in the UK have it but it is one of the most under diagnosed conditions despite being the second most common. The reason for this is Sjogren’s symptoms are so similar to many of the other, more well-known, auto-immune diseases like Rheumatoid Arthritis and Lupus. Like with other auto-immune conditions, Sjogren’s patients’ immune systems react abnormally, attacking healthy tissue and cells instead of viruses and bacteria that enter the body.

Symptoms can range from joint pain to dry eyes. Possibly the worst symptom, though, is the extreme fatigue. This fatigue is not something that can be cured with a long lie-in or a few naps; it is the kind of exhaustion that made me want to cry every time I woke up, no matter how long I had been asleep for. Like many other conditions, there are few outward signs and therefore people presume you’re healthy.

You could go for years, decades even, without a “flare” where the disease rears its head and makes you feel like you’re dying. I went ten years between flares but, as I have gotten older, the time between the flares has reduced and the time it takes to recover has increased. Sjogren’s can appear to go into remission but, unfortunately, it will always be lurking in the background. The problem with that is, sufferers can get into a vicious circle of worrying about the illness reappearing but stress increases the likelihood of a flare. When you’re living through a flare, it’s easy to become depressed and feel like it will never end.

Some sufferers will be “lucky” enough to only have dry eyes and/or a dry mouth to contend with but even these symptoms make everyday life difficult. It may mean that you encounter tooth decay because you are not creating enough saliva. You may also find you can’t wear contact lenses because there is simply not enough moisture in your eyes to rehydrate the lenses when you blink.

However, some other patients can see major organ involvement. Because Sjogren’s attacks the soft tissue in the body, your brain, kidneys and lungs can all be at risk. There is no cure for Sjogren’s but it can be managed with topical treatments, anti-malarial drugs and, in severe cases, immunosuppressants. There are also other services available to help you come to terms with the diagnosis and possible implications. For example, you may be sent to a Health Psychologist to discuss your feelings about the diagnosis. Perhaps you’ll see a Physiotherapist to help with mobility issues.

Venus confessed in an interview that she had been to see doctors several years before she was diagnosed and was told that they were baffled as to what could be causing her joint pain and fatigue. I was told for twenty years – since the age of nine – that I had either Chronic Fatigue or ME. I was turned away by GPs and other specialists, and some even suggested I was a hypochondriac. I was officially diagnosed in May, 2013. Since diagnosis, I have researched the condition and I am now able to connect the dots and identify that all of the previously unexplained health-related “episodes” can be attributed to Sjogren’s.

The thing with Sjogren’s is it’s so under-recognised that you have to be lucky enough to deal with someone who recognises the signs. The blood tests run by GPs won’t show anything up as the tests GPs run are very general. If you get as far as a Rheumatologist or Immunologist, you may still get turned away. You must stand your ground. My specialist told me that the only definite way to be diagnosed is to have a lip biopsy – which has to be ordered by a doctor. Having said that, I’ve spoken to lots of people who have been diagnosed without having to have the invasive surgery.

Sjogren’s common symptoms.

  • Dryness of eyes, mouth, etc.
  • Tooth decay.
  • Dry cough.
  • Difficulty, swallowing, chewing, etc.
  • Hoarse voice.
  • Difficulty speaking.
  • Sensitivity to light.
  • Exhaustion.
  • Itchy / burning / stinging eyes.
  • Mucus in eyes.
  • Dry skin.
  • Exhaustion / fatigue.
  • Joint / muscle pain.
  • Vasculitis.
  • Brain fog.
  • Depression.
  • IBS.

Sounds fun, no? But, don’t worry, I will be writing more articles on this topic, and suggesting other blogs and books that may be helpful. If anyone would like more information or would like to run a feature on this subject, please email me at victoria.watson@elementaryvwatson.com

Victoria x

Beware scammers

Image

For months, I’ve been considering buying this book. As it’s not clear whether or not I have Lupus, I have been reading up on various auto-immune diseases as I like to be armed with as much knowledge as I possibly can.

Knowledge reassures me. If I’m blindsided by something I didn’t know, I become anxious and feel like I’ve lost control. It is an illusion – I’m not really in control of any of this – but knowledge helps me maintain some semblance of calm in the face of some pretty grim circumstances.

Because I’ve been feeling so poorly this week, I decided to part with my very hard-earned cash and pay £3.06 for ‘The Embarrassing Truth about SLE and How to Manage it’ by Joseph Newburg. Because the same author had several books about health issues, I mistakenly thought this guy might be able to provide me with some new information or coping techniques. How wrong I was.

Most of this book contains information which has been copied and pasted from Wikipedia. Although the author acknowledges his source, I have to say it doesn’t inspire confidence. I can read Wikipedia for free. Likewise, anyone can update it and therefore not all of the information on there is completely accurate. There are so many more reputable sources that this author could have cited.

Newburg talks about Lupus as though it is a death sentence. It can be but many sufferers now live life in remission. It’s very difficult to generalise with this condition but what Newburg did write was fear mongering and based on very little but his own agenda. Further into the book, Newburg tells sufferers what they need is faith and goes on to quote much of the Book of Job.

I have no objection to any religion in the world. Obviously I resent all fundamentalism and the troubles it causes all over the world. However, if anyone finds comfort in religion, I have no issues with that. Each to their own. I would love to find something that gave me such courage and belief. I’ve yet to find it. What I do object to is someone ramming their religion down my throat and calling it relief.

This book was an absolute swizz. In illness, as with most negative life events, people often look for help out of desperation. I put my faith in knowledge which is why I feel so cheated by this book. But scammers come in all disguises: religious nuts, “authors” and insurance agents among others. There are plenty of people in the world looking to make a quick buck off people’s misery and suffering. Beware.

Vic x

A Rude Awakening

Yesterday I met one of my best friends. I’ve known her for seven years but sadly we live three hours away from one another. Up until yesterday, I hadn’t seen her in three years.

My friend is a mother to two beautiful children and has a wonderfully supportive husband. She has been a great friend to me and although we haven’t seen each other in a long time, we text each other pretty much every day and she has been an amazing friend to me in times of need.

The last time we were together, we had a lovely weekend out and about in Newcastle: shopping, eating and drinking. We danced til we couldn’t move and boozed until we were slaughtered.

When I met my friend today, she looked incredulously at me and asked why I was limping.

“This is how I walk now,” came my reply.

“Why are your hands shaking like that?” She asked.

“Oh, they do that all the time now.”

“Do you want a drink?”

“I can’t cos I’m not allowed to drink with the medication I’m on.”

Looking at my friend’s face, I realised how much life had changed for me. Where was the party girl who’d stay out all night, wearing 6″ heels, drinking shots and dancing until the club shut?

Where’s the girl who can shop all day and party all night?

Where was the girl my friend met at a wedding 7 years ago who got steaming drunk off her face and had to be carried to the waiting car?

She’s gone, maybe forever.

I went to another friend’s hen night tonight and managed two and a half hours before leaving. It was lovely to see my friend and have a meal but, once we went into a bar, with the thumping music and crowds of people, I just couldn’t handle it. My head was banging, my bones were throbbing, I felt sick. All I wanted was a chair and some quiet. Now this may just sound like the ramblings of an old lady but, trust me, I don’t want to be like this.

I miss going out with my friends and dancing all night, getting drunk and being silly. I miss being able to go out and have fun and still get up for work the next day. I appreciated that, with age, I may suffer with hangovers more than I used to but in no way did I expect to be on a cocktail of prescription drugs, going through all sorts of therapies and living the life of an 80-year-old.

I realised earlier this week that I haven’t been as honest with my friends as I should have been. I’ve played down my illness for the past 15 months because I didn’t want to bum everyone out and sound negative and whingey. One of my friends has just had a baby, one is getting married and another is so rushed off her feet that she doesn’t have time for herself. I didn’t want to burden everyone with my crappy problems. I realised that when they asked me how I was, I replied with “OK.” They know I work part-time now but I don’t think they understood the implications the condition has had on my life. I haven’t withheld this information out of spite or bravery, I just didn’t want to burden anyone.

I need to start being more honest, with myself and others.

Vic x