Good company in a journey makes the way seem shorter. — Izaak Walton
Source unknown
I’ve been trying to get this blog going for ages. I keep a journal where I have been trying out all the things I might write about on here. The main thing is that I don’t want this to be a depressing place that people don’t want to visit. I’ve blogged before some years ago but that was very lighthearted stuff, and I deliberately kept my MS out of it, I didn’t want to be defined by it. Things have changed since then. The MS has progressed sure, but many other things have changed too, not only in my life but in the country, in the world. So, I have to write about my life with MS but I also want to write about daily life in other respects as well. There are many things on which I have opinions and would like to share them, hopefully to provoke discussion and debate but also to raise awareness of issues that many people don’t know about.
This all sounds very deep, I don’t mean it to. I just want to give a heads up on what’s coming! Be ready 😄😄
just one more thing, I won’t be writing everyday, sometimes it will be totally beyond me!
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.
So I have decided. Tomorrow is the big day!
Photo by Pascal Bernadon on Unsplash Older woman covering her head in purple!
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)
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’:
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).
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 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!
Plans can be important when you have a disability or chronic illness. If they don’t work out does it make you feel anxious? Believe me, it’s not just you.
Photo by Jon Tyson on Unsplash
As a full time wheelchair user, my life has limitations. In September last year I decided to start a blog. It gave me something to focus on. I love writing and up to then had just kept a journal where I wrote about anything and everything, especially after my MS diagnosis.
I realised over time that plans were an essential part of living with a disability if life was to run smoothly. Any outing has to be an almost military exercise. I have to see the weather forecast the day before so I can plan what to wear, as I suffer badly from the cold.
Time has to be allowed to get me into our adapted vehicle and to get out at the other end, especially if my 5 year old grandson is helping! Going out for a simple lunch is a nightmare if anything goes wrong!
Today, I planned to write…….
I want to write. But suddenly I’m scared. It’s making me anxious and afraid to start. This is because I’ve become obsessed with reading about marketing strategies etc. I have read so much I am confused about what I should be doing, if anything, to grow my blog, when really nothing is going to grow it if I don’t write it!
So this is me trying to overcome the fear I’ve suddenly developed. Still in the back of my mind whilst I’m writing are the thoughts about all the blogging advice I’ve been reading, and how contradictory it all is.
I’ve been sucked in to paying for stuff (not a lot) that doesn’t tell me anything, signing into free courses on every optimising topic imaginable (or not). This has been going on since Christmas. I persuaded myself that 2020 will be the year that I do everything I can to grow my blog.
Not that I haven’t written anything in that time, I have. I just feel that there was a certain amount of trying to incorporate things from the stuff I’ve read.
I can’t really write in a conversational tone, as if I’m having a conversation with someone, it’s just not my style. I can’t write to solve other people’s problems much as I would like to. I don’t write to make money.
When I write on disability I write in the hope that my writing resonates with someone and gives them validation for their thoughts and feelings, or just lets them know they are not alone.
When I write about politics it’s in the hope that readers can gain something from my piece, again perhaps resonating with their thoughts or opinions, or confirming their opposition to it.
I can’t write sitting in a cafe simply because I can’t get out to one. There is no quiet space here at home because our house is small, I cannot go on a retreat (much as I would love to) without taking with me a lot of equipment and two carers! Not exactly a retreat then.
So, I make a plan everyday to set some time aside for writing. If I can’t do this I find myself and more often frustrated than anxious.
So, is making plans a good idea?
The more I’ve thought about this after reading stuff about writing every day or not writing every day, writing a plan or not writing a plan etc etc, the more I’ve realised that for me making plans to write is not the best thing. My life is unpredictable yet routine, my days are short.
My days go like this. My (wonderful) carers arrive at 9.30 a.m. by which time I have had my breakfast. They get me up into my chair in 30 minutes (I did say they are wonderful). So I start my day at 10. But then, two days a week I have nurses so my carers come at 11 and my day starts at 11.30. Every evening they come at 6 p.m. to get me back into bed.
During those hours I can write but then one of my daughters may appear for a coffee, or a friend arrives with a cake. My 5 year old grandson begs his Mummy to bring him round after school to play games with me on my iPad. These are things I love and enjoy and wouldn’t want to change.
This means that trying to plan my day is pointless. And, if I’m honest, I don’t want to do it because the unexpected things are what makes my life more fun, and if I don’t have anything planned, then I don’t get anxious and frustrated.
But. this is my life and the way I’ve chosen to deal with the everyday. This may not be right for everyone, every disability is different. For me, I think that a mix of making plans for some things like outings is necessary, of course it is (although even that doesn’t guarantee smooth running but that’s for a future post!), and not trying to make rigid plans for each day seems to work better. It means much less anxiety and frustration – that has to be better for my mental wellbeing.
If that means I can’t write every day then that’s fine. I always said it would be beyond me!
“Begin at once to live, and count each separate day as a separate life”. –
Seneca – Letters from a Stoic
These are wise words indeed, especially if you are living with a chronic illness or are a disabled person, when everyday can bring different symptoms, different feelings and obstacles. Not so easy though is it?
Photo by Dimitri Schemelev on Unsplash
Yesterday, I gave in. For two days I had been feeling awful, deep down I knew why, but, as usual, I kept going.
For two weeks before Christmas I was busy as we all are. Being in a wheelchair doesn’t mean I get away with not planning and buying presents and food like everybody else. Plus, my mother turned 90 in December and my daughters and I organised a family party for her.
I do find social occasions a bit exhausting even if it’s just family. I had to be in my manual chair because the house has steps up to the front door! This means I usually get put in a convenient corner out of the way of everyone milling, but of course I can’t do any milling of my own!
Because of all the festivities, I didn’t do any writing for two weeks. I took the time to read about improving my writing. That was exhausting because I had to concentrate!
After New Year I managed to get out two or three pieces but then – nothing. I dried up and I could not motivate myself.
I found myself reading articles about optimising my blog, as I had convinced myself that that was my goal for 2020.
I can’t believe some of the things I have read these last few weeks, getting deeper in to marketing strategies that in no way do I want to follow, and am in no way ready for. Don’t get me wrong, the material was very well written by people who know what they are talking about, but the jargon being used was beyond me!
So I stressed about never being able to get people to read my blog or my articles if I didn’t master the jargon. Result: increasing anxiety, till my head hurt and my stomach was churning.
I’m now two weeks into a very unproductive January, and I found myself feeling out of sorts, not being able to eat much with aches and pains. I was suffering extreme anxiety.
What I hadn’t learned
I couldn’t believe that I had fallen for this old MS trick again, when it’s been happening for years. I hadn’t learned that when you live with a chronic illness it’s important to do what you know is right.
All I needed was to take a day in bed to just watch a bit of tv, listen to some music and sleep. So that’s what I did. I was warm comfortable and relaxed.
It’s amazing that just taking one day completely away from e mails, social media etc can make such a difference. What I can’t get my head around is why I didn’t recognise what was happening and allowed myself to get into such a dark place
Today – new person. Like Phoenix rising from the ashes I’m ready to take on the world! Well, not really but I got up this morning desperate to write.
Here are the things I’ve learned from this:
Always listen to what your body is telling you. Whatever type of disability you have your body can always tell you something.
Don’t push yourself beyond your physical and/or mental capabilities.
Learn what your main limitations are, and own them. They are yours and yours alone. That way it’s easier to avoid pushing yourself too far.
If you do beyond the limit take time to recover. Take a walk if you are able to, stay in bed for as long as you need, do what you want.
Don’t think it’s your fault if you have to step away from things for a while. No one knows your condition like you do – do what you have to do.
Self care is the single most important thing you can give yourself when you are a disabled person.
I can’t believe it’s taken me so long to learn this. I think it’s because I felt I was giving in, I wanted to fight my MS, not let it beat me and so on.
If you are, perhaps, newly diagnosed you may feel some or all of these things too. These six tips can help you realise that having a chronic illness isn’t going to stop you doing things, but may help you learn from what your body is telling you to make sure you are living your best life.
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.
