Disability is not the end, just a different way to spend time in your new life

time

People who don’t work have to find different ways to fill their time. But those who are unable to work because they have disabilities, like me, need to find things within their capabilities. Not so easy.

For many, previously enjoyed pastimes are out. Of course, I cannot speak for everyone but some of the ways I used to spend my ‘spare’ time are no longer feasible.

Before this disease developed, my activities included:

    Adult leader of a scout troop

   Leader of mountain walking groups

   Rock climber and abseiler

   Advanced first aider, with St John Ambulance

Since multiple sclerosis took its toll, such active roles no longer feature in my life. These days, excursions into the outdoor world are either in our car, fortunately I can still drive, or my electric-powered wheelchair.

But what to do with those long hours at home? Well, the first thing to say here is that I am determined to carry on as best I can. There is very little “woe is me” about my life. MS and the physical disabilities that accompany it are just irritants, no more than obstacles to overcome.

As I have said before (see CAN do attitude to life), the activities I listed above are firmly in the past, now no more than fond memories. But, I’m so glad I did them when I could.

Filling that new life

So, what do I get up to these days?

Regular readers will know that, nearly 2½ years ago, Lisa and I set up home in southern Spain. We left behind rainy north Wales, in the UK, to embrace the sunny climes of Andalucía. Writing this, in mid-April, the sun is shining, our back door is open, and I am wearing a sleeveless top and shorts.

Writing has been my life (see In the written wor(l)d) and continues to play a big part. Now that I have retired from full-time journalism, this blog provides a place to publish my writings for the world to see. What’s more, I enjoy researching and putting together the articles that I write from my living room armchair or out on the terrace which is enclosed by insect screens.

Something else I enjoy is playing games on my computer. Here I am not talking about solitaire or sudoku, though I like those too. Here, I am referring to my favourite massively multiplayer online role-playing game (known as a MMORPG) called Anarchy Online. This is very involving and makes short work of any surfeit of time that may be on your hands.

Oh, and in case the idea of computers puts you off. I can only use one hand as MS has robbed me of use of my left.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Fury at BPS ‘influence’ and being assessed as ‘fit to work’

News that the government’s disability employment strategy seems heavily influenced by the discredited BPS disability model has prompted a furious reaction. A quite justifiable one, in my view.

In this column, on Wednesday, I wrote about and commented upon what senior civil servant Tabitha Jay revealed. She had been speaking to MPs in the all-party parliamentary group for disability (APPGD).

BPS

My blog of two days ago, that prompted strong reactions.

While doing so, she mentioned the discredited “biopsychosocial” (BPS) model, the Disability News Service (DNS) reported. Further, DNS said Jay appeared to suggest BPS was “running in parallel” to the social model within the strategy.

On Facebook, group administrator Jan Thompson wrote: “Heavily influenced?….that’s a bit of an understatement isn’t it? This why ‘sick note’ was changed to ‘fit note’ …make us believe we are ‘fit’ & not ‘sick’. I’m sick of being used as a guinea pig….when I go to my docs it’s cos I’m unwell…not because I’m fit as a fiddle. Bps psycho babble.”

In the same article, I also wrote about Welfare Weekly‘s report about disability benefit assessments. It said, in just 18 months, upwards of 220,000 people have been awarded zero points when assessed for Personal Independence Payment (PIP).

Here, too, strongly-held and equally justifiable views came in. Here are a few of them:

On my blog itself, steveu wrote: “Several occupations require you to hold a minimum medical category. As MS is a progressive disease you steadily fall down the medical categories until you no longer meet the minimum and then you are no longer employable, sometimes just the diagnosis is sufficient to move you out.”

Nearly unbearable

On Facebook, Kevin Smith wrote: “My consultant told me I’ll never be able to work again but DWP tries to go against it. Won 2 appeals but the stress was nearly unbearable and made me even worse.”

Marie Grant wrote: “Where are all our healthcare professionals in all this? Why are they allowing their diagnosis to be overturned by nurses, physiotherapists and scores of others who have a vested interest in finding the sick and disabled fit for work. I feel totally let down by them all that they have let this happen.”

Jan Thompson, again, wrote: “The savage cuts have nothing to do with saving money so to speak. It’s social experiments to convince people they’re not really ‘sick’…sadly they don’t care that it’s not working. It costs more to implement than what it actually saves.”

Marie Grant, again, wrote: “It’s nothing short of persecution of the most vulnerable people in our society. I consider myself fortunate in the fact I was able to work for so long so I am reasonably financially secure. Having said that, I have never in my life felt so oppressed by my own government. Feel so sorry for all those who have no option but to depend on benefits, the stress and worry they’re put through is inhuman.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

* * * * *

50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Looking forward with an occasional backwards glance

My way of living with multiple sclerosis, and a wheelchair, is to hold firmly to my mantra. And that is always to look forward and concentrate on the things I can do and get as much enjoyment out of that as is humanly possible.

But, just once in a while it can do some good to look back, not to mourn the present but to celebrate the major landmarks in your life. So here goes!

1953       Unbelievably, I have a childhood memory while just a few months old. My mum left me in my pram while she went into a shop. How times have changed.

1957       Aged 4, started in my first school. It was while at this school, aged about 8, I decided on a career in journalism.

1964       Aged 11, started in high school.

1968       Broke my ankle in two places in a cycling accident. In plaster for six weeks.

1969       Took examinations, got most but not all needed to be a reporter.

1970       Got my last necessary qualification and started work as a journalist.

19.82. aged 29. Had MS but didn't know it

1982. aged 29. Had MS but didn’t know it.

1975       Met the young woman who would become my first wife. My football (soccer) team reached the prestigious FA Cup Final but lost.

1977       Married for the first time.

1985       Noticed a problem with my left leg, had various tests but no problem identified

1992       Moved from London to North Wales

1994       Joined the staff of a local newspaper group, becoming both sub-editor and Rural Affairs Editor.

1999       Named as ‘Wales Farming Journalist of the Year’ at the Royal Welsh Show.

2002       Diagnosed with multiple sclerosis but was able to continue working.

2006       November the day after my 54th birthday, my mobility had progressed to the state that I had to give up going out to work.

2007       Despite my disability, I managed to visit Canada and visited the Niagara Falls, and my first (and only) baseball game.

2008       Unhappy in my first marriage, I turned to playing an online game.

2009       While playing the game, I met and fell in love with the woman who would become my second wife.

2010       I met Lisa face to face for the first time. If there had been any doubt, it had now gone. We were hopelessly in love.

2011       What a year.  Lisa and I were both divorced from our partners and we then married on a beach in Florida. Two weeks later I had to fly back to the UK alone as Lisa had to wait for her visa.

2012       Lisa got her visa on her birthday, Valentine’s Day and just five weeks later she arrived at Manchester Airport. A big kiss and “Welcome home” and we sped off.

2013       Our first two cruises together, first to the Norwegian Fjords and Arctic Circle and then around the western Mediterranean.

2014       Cruise bug well and truly caught, we went around Hawaii and stopped off in New York City on the way home.

2015       We booked a transatlantic crossing as soon as we got home. A couple of weeks later we decided that we wanted to leave the grey British skies behind us. So, I suggested that we move to Spain. In the end, we left our rented flat in October, sailed aross the atlkantic for eight days, holidayed in the United States for 9 days, flew back to the UK for two nights in hotels and then flew to Spain. And in between all that I started my own blog.

2016       The blog really took off this year and towards the end of May I was asked to write blogs for multiplesclerosisnewstoday.com, and I agreed.

Not a bad life really, despite having MS.

 

MS gives new opportunity

50shadesheader

It can be a funny old world at times.

Almost all my adult life I have had a chronic disease, namely multiple sclerosis but I never realised that it would one day give me the opportunity to enjoy my passion for writing while unable to go out to work.

But, let’s go back a while. For a very long time I lived without realising what was wrong. While I knew something was not right, many visits to doctors and specialists left me no closer to the truth. Every test I had, including a lumbar puncture, was negative

In fact, it was not until 10 years after I moved from London to North Wales that the truth was discovered. First, Robin, my GP had suspicions and referred me directly to the local hospital and then, after more tests including an MRI scan, the truth was out. It was MS.

By this time, I was 49 and a successful journalist. I worked for another 4½ years, until mobility – or the lack of it – got the better of me.

Having settled into a life of doing, well, not a lot, my wife and I got divorced in 2011, though NOT as a result of MS. I married Lisa just eight weeks later. And no, it was not a case of being on the rebound; we first met in 2009 and our Florida beach wedding was planned many months in advance.

Since then, life has been great, and in August last year I started this blog – using my journalistic skills. It was a relatively quiet start but I still kept it going through a transatlantic cruise, a holiday in the USA and our eventual move to Spain. It was certainly a busy few months.

health & disabilityAs 2016 dawned, however, the blog viewing numbers improved dramatically with January beating the first five months of the blog’s life added together. Then February beat January.

Of course, I took a close look at the most popular blog posts and found that MS, disability and health were the most popular topics. It was an easy decision to choose to aim my blog exclusively at that particular niche.

To prove that was the right decision, the viewing numbers have continued to grow with March, April and May each attracting more than 20,000 views. Those sort of figures had not even featured in my wildest dreams.

Of course, when blogging, it is good to network and two weeks ago I was contacted by a guy asking me to add him as a contact, which I did. Mike, for that was his name, replied immediately that he had been following my blog via LinkedIn and introduced himself as the editor-in-chief of MS News Today. He asked if I’d be prepared to write a column for them too.

Of course, there was no way that I’d refuse, and so I wrote two columns, just to get started. Having seen them, Mike and the publisher Chris said they wanted to get me to do more than the initial idea of one a week. It soon became three then five a week.

Now I am halfway through my second week and loving every minute of it. Here I am, sitting at home in Spain, enjoying the sunshine with Lisa and doing what I have loved to do all my life – write.

I hope you continue to enjoy my writings, seven days a week here on 50shades and Monday to Friday at MS News Today. Please do check out both as the content is different.

Please note: My daily 50shades blogs are posted at or soon after midnight European time (11pm GMT); my column in MS News Today is published at about 2pm European time (1pm GMT).

 

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Ups and Downs of one of ‘those’ days

kate3_edited IMG_0786_edited  UP: Kate who posted the video that went viral. DOWN: My car’s gearbox goes wrong – again.

Have you ever had one of ‘those’ days? Well, yesterday was certainly one of those for me.

It started before Lisa and I went to bed. Just after midnight, I posted a new entry on my blog site and the viewing figures started piling up like nothing I’d ever seen before.

It was no surprise that the post was popular as it was about Kate, a 30-year-old Welsh woman with MS who had videoed herself having an attack so she could show it to her neurologist. Then she published it on her own Facebook page and people started to take notice.

My blog got attention too and the viewers kept coming, both reading the story and watching the video. By the time 24 hours had passed and midnight came around last night, yesterday’s post had proved to be my blog’s best day ever – and by some considerable way. If you missed yesterday’s post that includes Kate’s video, you can find it here: https://50shadesofsun.com/?p=1429

One of ‘those’ days could not be all good however – and so it turned out when our car went wrong again. Regular readers of this blog will know that our car was previously out of action from Christmas Eve when the automatic gearbox gave up the ghost. The car was collected by an automatic gearbox specialist some 300km/190miles away in Malaga.

They sorted it out and delivered it back on Tuesday, four days ago. It stayed in our drive on Wednesday and we used it for the first time on Thursday; we only drove about 20km/13miles and everything was fine.

Yesterday we did the same trip but as we approached the area in which we live, it was obvious that all was not well and so, instead of turning off the main road towards home, I turned into the nearby mechanic’s workshop. He quickly confirmed my thoughts; it is the same thing, the gearbox, he said.

Lisa and I left the car there and he took us home, later delivering my electric wheelchair which had been in our car. So, now we were back to square one – at home but without a car.

No time like the present, I telephoned the gearbox specialist in Malaga. His pleasant “How are you?” was met by me saying “I am fine but the car isn’t”. I explained what had happened and what the local mechanic had said.

Fortunately, the gearbox is under a 12-month guarantee so they are sending a recovery vehicle to collect it on Tuesday and they will be bringing a courtesy car for us to use until our car returns again.

Without a doubt, yesterday was one of ‘those’ days.

Making this blog your blog

IMG_0567_edited_edited  http://www.50shadesofsun.com

What do you, yes YOU dear reader, want to see in this blog? I have spent the last six months making all the decisions but you really deserve to have your say.

The daily figures already show that the most popular topics since 50shadesofsun was launched, last August, have been about fearless volunteer mountain rescuers, different aspects of multiple sclerosis and strangely, perhaps, lifestyle posts – mainly about Lisa and I moving from the UK to Spain and setting up our new home.

So, now it is your turn. What would you like me to write about? To help you, let me give you a little insight into my life.

Me

My name is Ian Franks, I am 63 years old, British and live near Cuevas del Almanzora in Spain’s Almeria province.

Family

I am married to the love of my life, Lisa, who is American – a proud New York city girl, born and bred in the Bronx.

Pets

We have two cats who were also born in the States. Pooka is closing in on 18 while Priscilla (Prissy to her friends) is almost 10.

Health

I have Multiple Sclerosis with all that entails, Epilepsy that has been controlled totally since 1976 and a cardiac condition called Atrial Fibrillation that is an irregular heartbeat. That is being treated with medication and my UK cardiologist was happy that, despite the beat remaining irregular, my heart was improving in health.

Professional

My working life has been spent in newspaper journalism and public relations, which are two sides of the same coin. Writing has been my life and now I devote it to my blog www.50shadesofsun.com. Click on that link to catch up on any stories you may have missed.

50shadesofsun

      Why sun?                         Because, in November 2015, we moved from the gloomy UK weather to the sun of Spain.

     Why 50 shades?               Nothing is ever really definite, life is full of shades.

     50 shades of grey?          Yes, the title influenced my choice. ‘50 shades of’ is a catchy, easy to remember name – and Lisa says I am her Mr Christian Grey but without the troubled childhood.

     Blog description               News, Opinion and Life

My special interests

Multiple Sclerosis and other disabilities, disabled access issues, rural affairs and religion – but not as you might expect.

Your turn

Now, please let me know your views as to the type of posts you would like to read or, possibly, exactly what story my post should cover. Intentionally, there is no survey form as I prefer not to lead you in any particular direction. I am seeking your views. Please do let me have your ideas by using the comment box at the bottom of this page.

Thank you.

Blog review 2015 and New Year’s resolutions

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This, my 50shadesofsun blog, went live on August 1 last year and so December 31 marked the end of its first five months. When starting it, I had absolutely no idea of what to expect, how many views it would achieve and how many visitors it would attract.

I was not sure how many posts should be written nor in how many countries my blog would find its readers. All I really had was my history of working almost all my life as a writer, mainly in journalism and public relations, and a great big dose of enthusiasm.

Choosing a blog hosting site, setting up the blog the way I wanted it to look and even coming up with an original and catchy name were all tasks that had to be accomplished before the blog could go live. It took a few weeks to research and accomplish all of it – and that alongside the preparations that Lisa and I were making for our move to Spain.

So, how has it all gone? I am more than happy with progress so far but my target is to grow the blog as it goes along and hope to be talking about greater numbers in 12 months’ time.

In its first five months, my blog has attracted 3,246 views from 1,747 visitors, and that’s an average of 649.2 views from 349.4 visitors per month. One more established long-time and award-winning blogger has a monthly average three times the size of mine but then 50shades is still a baby in comparison to hers.

I have written 149 posts in 153 days, so my output is quite prolific but then writing has been my life at work and now continues through this blog which, hopefully, informs, amuses, educates and even inspires its readers.

Time for your New Year’s resolutions?

Today, New Year’s Day, is your first chance to succeed, or fail, to keep any resolutions you may have made. Traditionally it is a time to choose to try to better ourselves by giving up smoking, stopping drinking or one of many other such worthy targets. You may be even aiming to carry out one random act of kindness every week or every month; an act that will benefit someone else.

Now, my list of resolutions is blank. Yes, you read that correctly, I don’t have any. Never had, never will. That’s not because I am perfect, far from it, but because my targets are set at various times and they don’t get stored up until New Year’s Day.

So, if you have made resolutions, all the best with your efforts but I’m happy to continue as before.