How a hard decision could improve my life

Sometimes it just has to be done

I’ve made a big decision. I’m going to do something fairly drastic. I’m hoping it’s going to change a part of myself I am very unhappy with.

I’m going to have a ‘buzz’ cut. I’m going to cut my hair to within an inch of it’s life! What on earth is a buzz cut I hear you ask. Here’s an example. I might end up looking like this, or could go even shorter.

https://www.besthairstyletrends.com on Pinterest

Needless to say that’s not me, it’s a very stylish pin from https://www.besthairstyletrends.com

Now imagine this. I am 65. I have naturally white hair which all my friends say they love it and they wish they had it. Worst of all I have my Father’s face (triple-chinned and jowly!). God bless you Dad.

Add to that the bloated and blotchy effect from the meds I take and there you go. Keep looking at the image above and pretend it’s me!

I hate my hair. Worse than that I hate my scalp. Like many people with neurological disorders, I have a dermatological condition which is difficult to manage.

It causes my scalp to itch constantly. If I scratch it it gets worse and sometimes it will bleed because I’ve scratched it too much in one spot. Don’t think that I’m covered in scabs. I’m not. But I am being driven slowly insane.

So this is why I need to shave as much of my head as I dare. I need to be able to treat it with product that hopefully will help.

My disability means I am unable to shower and washing my hair relies on my husband or my daughters. Sometimes it just isn’t possible. It’s also a bit of a palaver! Either I get soaked or the floor does. So managing my hair generally is not easy. Managing it with a scalp condition is almost impossible.

So I have decided. Tomorrow is the big day!

Photo by Pascal Bernadon on Unsplash
Older woman covering her head in purple!

Can we live a ‘Freedom Lifestyle?

What even is a freedom lifestyle? I’m going to try and find the answer.

Original photo by Marc-Olivier Jodoin on Unsplash

Trawling through the Internet I saw loads of different definitions. I would say that most of them were about starting a business to achieve financial freedom. Some were about living a freedom lifestyle through travel, such as trekking or bike-riding across different countries or continents. But the core definition seemed to go something like this:

A freedom lifestyle means living a life that is self-designed. Saying yes to things you love and no to things you don’t. The freedom to choose what is going to be part of every minute of every day of the rest of your life”. (Marie Hernandez)

https://ohwhatajourney.com/freedom-lifestyle-mindset

The blog ohwhatajourney.com has a post talking about having a ‘freedom lifestyle mindset’. They use the quote above and Set out their ‘Freedom Lifestyle Plan’:

  1. Work only contract jobs – check
  2. Travel as much as possible – check
  3. Start a travel blog, build following
  4. Start an event planning business on line – check
  5. Build client list
  6. Train as a travel agent – check
  7. Get TICO certified – check
  8. Find a travel agency to work with as outside sales rep – Check

Fairly easy then! This is a plan that may take some time. But if you are in a place in your life where it resonates with you go for it.

Of course we all want a life that is self-designed, and most of us have it up to a point. We choose where we live, where we take holidays, what we do in our spare time etc. But most of us have to work to have these choices.

Everybody’s daily routines are different. For most people life is a morning commute to get to work and the same routine in the evening just to get home again. Traffic jams, a crowded bus journey, the school run. All the things that make up people’s everyday. Not much room for doing things you love unless you love doing all this stuff!

Do what you love at weekends and say no to things you don’t love? Hmmmm…. weekends can be just as busy as weekdays particularly if you have kids or even if you don’t. If you work all week then the weekends can be taken up with shopping, cooking, cleaning, laundry and all that.

I sound a bit down on the whole thing. I’m not but I just wonder whether any aspect of the freedom lifestyle is doable in busy lives.

For me, as a disabled person, obviously not. If I was to say ‘no’ to the things I don’t like I’d never get out of bed! I don’t like not being able to look after myself without help (great as that help is), and I don’t like the strict routine I have but I wouldn’t be able to live without it.

I’m not complaining. Other disabled people are in the same position as me, some with many more problems than I have. Able-bodied people have lots of things in their daily lives that they don’t like.

Back in the day my husband loved his weekends, he was a hockey Dad, taking one of our daughters to field hockey every Saturday. That was something he loved. That was his day of freedom. Sunday mornings he would read the papers. That was it for him, Sunday afternoon he would work at home preparing for Monday (he is a retired lawyer).

My freedom at weekends was Sunday afternoon reading, something I love.

Now we are both retired. We should have lots of time. We wanted to travel, for us that was the ultimate freedom lifestyle. But – bang! I developed MS and it was not possible.

We do things that we love. I love writing, he loves doing crosswords. We take a trip to France once a year. He cooks nice things and I eat them!

What exactly is a Freedom Lifestyle?

I’m going to see if I can somehow get to the root of it, and see how practical it is.

One blogger (George Maszaros successharbor.com) suggested ditching the:

  • job you hate
  • boss you dislike
  • commute you hate
  • things you don’t need (de-cluttering)
  • addiction to being busy
  • relationships that are negative In your life

Not an option for most people I would imagine! Most of the research I did on the Internet focused on starting your own business to gain the financial freedom to live however you want, using words like ‘laptop lifestyle’ or ‘digital nomad lifestyle’ or ‘living your dream life’ One blog I read defines a freedom lifestyle as this:

1. an intentional and adventurous way of life. 2. the ability to do what you want, when you want, how you want. 3. a lifelong commitment to crafting and sharing your unique genius (yes, you’re a genius).

http://www.armanassadi.com/introduction-to-freedom-lifestyle

This blogger had just left a job with Google in Silicon Valley, so was clearly in a position to be able to start up his own business. He then goes on to describe how he travels the world because he can take his business with him. A digital nomad!

I even read an article in which the author suggested that perhaps, to gain the financial means to live your freedom lifestyle, you should start a business on the side in addition to your day job! (medium.com/rasheedhooda)

Not practical for most of us. Just keep buying your lottery ticket!

A Freedom Lifestyle for disabled people?

When it came to researching what a freedom lifestyle means for disabled people this focused on independent living. I soon realised that this is a completely different thing.

One disabled person said this:

It is the ability to live independently and productively in the community and to live with the same freedom of choice as a non-disabled person. So it’s not that you are living on your own but that you control where you live and have the same range of choices as a non-disabled person.

Jill Weiss

So, if my idea of freedom living is to sit alone in a cave on a Tibetan mountain meditating then it’s a no-go. Right?

Photo by Yomo Owo on Unsplash

I have to admit that it’s a good definition of how disabled people would want to live. There are many younger people who go travelling with their wheelchair and a carer, living the best freedom lifestyle they can.

So, is a ‘Freedom Lifestylepossible?

I’ve only looked at a tiny bit of what’s out there on the web and in blogs about this idea. To ‘self-design’ our own lives depends on so many things, our circumstances and commitments, money, kids, elderly parents to take care of, whatever.

For most people the ability to have a life of freedom from pressures of time, money, work would be a dream, for some people that dream can become a reality. But it surely, unless you are already financially secure, it takes a leap in the dark with no idea where you’ll land and that is truly scary. Not a risk that anybody would take lightly.

The best that most of us can do is live the best life we can through creating a balanced life of work and leisure and make it count. Self-designing our life in whatever way suits us, and creating choices for ourselves whenever we can.

I refuse to use the term ‘work-life balance’ – it’s been worn out. Maybe a ‘freedom lifestyle’ is better!

Photo by Collins Lasulie on Unsplash

New Year, New Decade

Photo by Jamie Street on Unsplash

So, the Christmas season has passed for another year. Where did that go? We build up for weeks, put our trees up, buy presents, buy and cook food, all for the big day. Then, whoosh, it’s gone. This week we are all trying to get back into our normal routines.

I love Christmas, the build up, family times – everything. I love the time between Christmas and New Year, when normal routines go out of the window, and you feel that you can do whatever you like. Binge watch TV, eat sweets and all the other good things just when you feel like it.

Then comes New Year, a time of hope and optimism for the future. We all and I’m no exception, make resolutions we know we probably won’t stick to!

Somehow, though, 2020, a new decade, feels different. The twenties. Sounds so much better doesn’t it? You probably think I’m crazy but it’s how it seems to me. It has inspired me to reach greater heights and to be able to call myself a ‘writer’. This means writing more (only time is against me), publishing more, here and elsewhere, and using tools to optimise my blog.

I wrote a piece about living my best life as a disabled person. I will carry on trying to live my better life in 2020.

Some further thoughts

I wrote above about how I love Christmas and everything that goes with it. I just want to spare a thought firstly, for all the people who work over Christmas and New Year for me to keep my life running smoothly, my carers who are absolutely amazing. I am extremely lucky, but I should also mention nurses, doctors and others who work selflessly for people in hospital.

Secondly, for all those people who are homeless, living in poverty, or who are home alone, elderly and with no one to make Christmas special for them. We should all spare a thought for them, and I know there are many good people who volunteer in various capacities to offer help.

I, for one, constantly count my blessings and if you are one of the lucky ones, count yours too. You never know what’s around the corner.

Happy New Decade!

Hello again, hello

That’s a line from one of my favourite Neil Diamond songs. Just popped into my head as I was writing hello.

Photo by Jealous Weekends on Unsplash

So, welcome to my newly designed blog. I hope it’s crisp and clean and easy to navigate. If you have any thoughts please leave a comment. It may yet need tweaking.

It’s actually a day late going live. After a lovely family weekend, my plan was to complete it yesterday. Well best laid plans…….

I’d just set everything up, computer in front of me, stylus poised when wham! We had a power cut. We waited…waited…. hoping it would come back on. Then an engineer appeared on the doorstep, saying power was unlikely to be restored until 10.30 pm!

We were aghast. I have a medical bed which is electric, luckily the back rest had been left by my wonderful carers in a reasonable position so I was ok.

The two worst things? No heating and no internet! It had to be the most boring day ever.

It made me realise how dependent we are on our gadgets, our tech and all the appliances that use electricity. We actually had to chat to each other! We were trying to imagine what it would have been like to have lived in the time when electricity didn’t exist.

We lit candles and lit our wood stove, and we were quite cosy. No tv to watch, no underlying hum of electricity, very peaceful, and best of all, no telephone!

The worst of it was being cold. No wonder people went to bed so early. Just goes to show……..!

Photo by Zoran Kokanovic on Unsplash

How to change your life completely

If you are lucky enough to have the chance
Pont de Valentre Cahors by Sue Whiteman on Trover.com

Thirty years ago almost to the day my husband and I bought an old French farmhouse in the South-West of France in the beautiful Lot Valley.

We had to remortgage our home in England to do it but from our point of view it was worth it.

At that point my two youngest children were 10 and 12. We had been taking holidays in France since the youngest was approaching 2, we had five children altogether, three of my husband’s from his previous marriage and our two. All the children lived with us, so we were a large family. This made holidays in the UK expensive when compared to a gîte in France at £50 a week! The children all loved France from the get-go.

At first, we were only able to go down to the house for three weeks in Summer. Leaving to go home was heartbreaking every year. After my husband retired, and I was able to stop working, we would go there for anything up to six months (six months is the limit in terms of UK taxation rules). We just loved it more and more, were able to witness all seasons of the year, we got to know people in our village apart from our immediate neighbours.

And then two catastrophic events changed things. In 2002 my husband’s pension company collapsed and he lost the pension he had diligently paid into for over 40 years, cutting his retirement income by a massive amount. Then, in late 2003, I developed Primary Progressive Multiple Sclerosis, an aggressive and late onset form of the disease, that progresses very quickly so by 2007 I was barely able to walk and was no longer able to do the stairs in our UK home. By this time our middle daughter was living in our French village and begged us to relocate to our house there, which had no stairs. We did.

The house was slightly unsuitable for living in full-time. Our bathroom and separate toilet were outside on the terrace. In the winter it was necessary to dress up in winter layers, socks etc just to take a pee in the night! So we made a few adjustments, taking part of the huge barn adjoining the house (there was more barn than house) to make a sitting room and to build a new bedroom with en-suite and a small terrace for my husband and I. It was lovely.

With daughter and grandchildren living round the corner, life was good. I could still walk with a stick to visit them and their swimming pool!

We really got into the swing of life in a beautiful part of France. Our nearest big town is Cahors, a medieval city with a famous bridge, a beautiful cathedral and many historic monuments. Over the years, coming to the house each year on holiday, we had got used to meandering through its narrow streets to find little restaurants tucked away where locals ate and you could get a fantastic three course meal with wine for about £2-3 a head. People often say to me that France has become more expensive. That’s probably true of the cost of living, certainly since it changed from francs to Euros, but search and you can find, in the most out of the way places sometimes, really good meals with wine for €12 a head.

How does it feel to live as an expat? At first, even though we knew the house and the village, it was a totally different feeling from being there short term. Suddenly, we became aware of different social and cultural references that we had to get used to. Learning to speak the language was essential. I picked it up fairly quickly because I had to speak to doctors and social services about care as my MS progressed.

The social care system in France is of an extremely high standard as are the hospitals and nursing staff. As the disease progressed and I needed more help and under reciprocal arrangements with the UK I had excellent care at no cost.

It’s a pity that as a consequence of leaving the EU those arrangements may come to an end, making it more difficult for expats living with chronic conditions or other illnesses.

Contrary to popular opinion, the French are agreeable, kind and very community- and family-minded. If you have a problem there is always someone willing to help from your neighbours to strangers who see you having trouble with something in the street or a car park.

It’s just a question of getting to know and understand them, not being an overbearing arrogant Brit (believe me I’ve seen plenty of them), and at least trying to speak the language. You will often find that they are as happy to practice their English as we are our French.

Photo by Alexander Pogorelsky on Unsplash

The Body Positive Part II

Victoria (Image: BBC / Love Productions / Richard Ansett)

Continuing with Episode 1 for the moment, Body Positive exponent Victoria decided to challenge the other women in the group to put on their swimsuits or bikinis and to go with her into the nearest town centre, to raise awareness of what The Body Positive movement is about. Passers-by were asked if they wanted to write on the visible naked parts of the body to show their support. Surprisingly, many people did. Babs, who truly dislikes her overweight body, bravely took up the challenge and was overwhelmed with the support they were given.

So to Episode 2. The Body Positive (BP) debate hots up as a discussion about childhood obesity draws gasps from the BP supporters at the thought that children in Primary School should be taught about healthy eating and exercise! Apparently this will cause them to obsess about food and could lead to eating disorders. One housemate, Sarah who is the director of the charity Obese UK, quite rightly worried about the drain on the NHS of obesity health issues.

Also respected geneticist Dr. Brian Yeo, gives the housemates the results of a DNA test showing that some people are genetically predisposed to excessive eating, or crave food. This had a good effect on Jed, who worried about Type 2 diabetes and encouraged him to be tested.

Watching this episode, it became apparent that there was more to Victoria than met the eye. First impressions were that she was an extremist in the BP movement, she was constantly insisting that she was happy as she was, and tried to get others to feel the same way. She was roundly criticised in the media, branded as ‘dangerous ‘, and amongst housemates, some of them found it unbearable.

As the episode went on, it became obvious that she is using BP to deal with her own deep insecurities about her body, it was very much about ‘those who shout the loudest’ . In other words, the more she went on about it the less convincing she became. She may eat, as she claimed in Episode 1, ‘what she wants’ but she was the only one who was eating in just about every shot, crisps, cake, always unhealthy stuff. If she eats like that to prove a point that’s ‘cutting off her nose to spite her face’ territory, it’s unnecessary and unhealthy. But if she is eating like that because it satisfies a deep-seated insecurity or trauma or whatever, then she needs to admit it to herself.

By the end of the episode everybody seemed to have accepted the different views and people’s right to hold them. There was genuine feeling when it came to say goodbye.

Whilst it’s true that we shouldn’t discriminate against people who are overweight or obese, it is important to realise that it’s the impact on health that is most important. When Victoria was asked whether she would prefer to be fat or lose her mobility through diabetes, she refused to answer the question. That indicates that either she hasn’t thought about it (slightly unbelievable!) or she doesn’t want to think about so as not to compromise her views. Either way, the conclusion has to be that her views are subversive and dangerous, and are extremely unhealthy.

Courtney (Photo courtesy of bbc.co.uk)

The opinions expressed in this post are mine