In 2004 fear took over my life. This is when the first symptoms of MS began, and I had no idea what was happening to me. I went from a fit, active person to someone who could only walk a short distance, had difficulty driving, could no longer type with both hands and so many other things. Almost overnight.
The fear was intense, I suffered panic attacks, I cried a lot, lashed out at my husband and he at me. This was completely alien to me, we had been married for a long time and for the most part happily. Neither of us could understand why I kept falling over and had to rest for half an hour after my morning shower before I could get dressed!
I went to my GP. It took six months to get an appointment with a spinal surgeon, who sent me to a Neurologist. He told me I’d had a stroke!
After a hospital stay and every test known to man, waiting another four months to see the Neurologist again, I was then a ‘puzzle’.
Another stay in hospital, a visit to Queens Hospital in London, where some random doctor bashed me on the head several times with what looked like a tennis racket, still no answers!
After another four months waiting to see the neuro again, by which time he’d forgotten who I was. We told him we were going to live in France (see https://bellesdays.com/20/11/2019). He more or less said ‘have a nice life’ or words to that effect!
Whilst in France, I had two further MRI scans and, finally, after six years I was told that I had Primary Progressive MS. It came as a huge relief that I now knew what I was dealing with, and huge sadness because I knew that I would always have it.
I was in a wheelchair by this time anyway and I was getting used to the fact that I could no longer stand up.
Despite everything that has happened in the last 10 years since my diagnosis, here I am. I’m not saying that I’m not anxious, I am a lot of the time. You never come to terms with having everything taken away, but you learn to live with it, and to enjoy the new life you find yourself living.
I maintain my interests, reading, politics, food, I have taken online courses and learned (am still learning) to blog. Having MS in whatever form does not mean not having a meaningful life, just a different one.
We came home from France in 2016. It was quite a difficult decision but the right one. Life is too short to miss being around family and friends and watching your grandchildren grow up.
This is my story. It’s taken me 16 years to reach this point. Life is never simple. Everybody’s MS is different. I won’t say the fear has completely gone, I don’t think it ever will. People ask me why I’m always smiling. I say that I have two choices – I either do or I don’t. For me it’s not a difficult choice to make.
I have been thinking a lot about accessible travel (again) over the last week. In April I want to travel to France for a family wedding. I’m a full time wheelchair user, and I fly only once a year now. That’s because it is a horrible experience. And that’s if it runs smoothly.
If it goes wrong it can quickly become an absolutely horrific situation. I have had so many of these that I’m wondering whether to bother any more. It is so stressful.
Then I think how unfair it is that a whole section of society can potentially be excluded from travel, when, with some , it could be straightforward (as much as anything is straightforward when you’re disabled!). Why should it be so difficult?
I also think that the more we travel the more we make the point that the right exists for us as much as it does for other people.
It was so good to hear that the government plans to give £30 million to Heathrow Airport to improve accessibility for disabled people. But, I need to know exactly what it means and where the money is going to go.
And, from what I see, it’s not only flying, the problem exists across the whole spectrum of travel, trains, buses, taxis, boats, you name it, it’s a nightmare.
There is so much evidence out there of people’s experiences, none of it good. Yesterday I watched a video of a disabled man being taken off a train forward down a ramp. He was tipped out and landed on his head. It actually made me cry out. The feeling of being tipped forward in your wheelchair is really frightening.
People who are there to provide assistance must first have proper training, but also, must learn to speak, yes speak, to the disabled person to ask which way is the best way to go down a ramp, or a slope, or a step. That person will know best which is best for the particular situation. And if they do actually ask, to listen to the answer. I was once asked if I could stand. I said no. They stood me up anyway. I fell down! it was very painful.
I’ve been too scared in ten years of being in a wheelchair to travel by train. Watching that video did nothing to make me feel better! I use disabled taxis, sometimes the drivers are brilliant, kind and go out of their way to make sure I’m comfortable, others not so much!
I’ve found a solution to travelling to London now, I have two wonderful drivers who charge less than the train fare, take me from door to door, and make sure I’m ok. Then, when it’s time to travel home there they are. They also do the Heathrow trip. The insurance for them to drive our adapted car was worth every penny.
I feel as if I’m repeating myself. I’ve written before about my travel experiences and about the need for travel providers to take disabled people seriously and to try to do better.
The thing is, that accessibility issues don’t just refer to travel, but to other problems like non-accessible toilets, restaurants and other public places with no ramped access, even my doctors’ surgery is not nearly as accessible as I think it should be.
But until there is real change I think it bears repetition. Perhaps someone will finally take notice.
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.
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.
What even is a freedom lifestyle? I’m going to try and find the answer.
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)
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.
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).
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.
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?
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 Lifestyle’ possible?
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!