Good company in a journey makes the way seem shorter. — Izaak Walton
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!
“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?
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’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.
Some of the anxiety came from the worry that I was becoming seriously ill again with kidney problems or even sepsis. Ridiculous!
I couldn’t believe that I had fallen for this old MS trick again, when it’s been happening for years. 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.
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.
It’s amazing that just taking one day in bed 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
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 at the moment, or in fact 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.
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 go 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.
I started this Blog with no clear idea of exactly what I was going to write about. The idea was that I didn’t want to be defined by my disability. The thing is, I have since realised that it is so much a part of my life – it IS my life – that I write everything from the perspective of a disabled person.
Only when I write about Politics is my writing not necessarily coloured by that perspective. However, when I read the newspaper to gain ideas and information for my writing I am instantly drawn to disability issues. Inevitable? Probably.
Two news stories caught my eye today. Although they are different, they both relate to how disabled people are commonly regarded.
The first was about a benefits claimant. She was being assessed for her Personal Independence Payment (a monthly benefit awarded to help the disabled with daily living) and she was turned down because it was thought that her mobility was not as compromised as she claimed. She appealed. During the appeal, It emerged that she had been referred to as a ‘lying bitch’ by a Department of Work and Pensions (DWP) official in his report. She sued the DWP and won her case. To read more go to https://www.theguardian.com/society/
The second story comes from a disability rights group, Disability Rights UK (DRUK) In their Newsletter they report that they were part of a high level hustings organised by a consortium of disabled charities during the recent General Election campaign and not one single MP from any party attended. Read this at https://www.disabilityrightsuk.org/news/
Both of these articles highlight in different ways attitudes towards disability in general and disabled people in particular. There are many types of disability, some obvious, some not so and some which are hidden completely. This latter category includes those with mental health issues which can be at least as disabling as physical disability.
It is well known amongst the disabled community that assessment for benefits, particularly Personal Independence Payment (PIP) can be terrifying, stressful and gruelling. There are conditions like MS and other neurological diseases which can manifest themselves in ‘good’ days where mobility may be quite manageable and a claimant can be viewed as being not as disabled as they are really are.
This often leads to an award of PIP at perhaps a lower level than might be expected. There is a right of appeal as in the case of the Claimant above. Many people are put off appealing their claim because it involves further stress. A solicitor from the firm involved in the court case commented:
“Although the facts of the case are unusual, it does highlight a general issue that disabled people are experiencing a hostile environment in the benefits system.”
Unfortunately, this doesn’t apply to just the benefits system. Attitudes are not always hostile, but just as bad – patronising.
What disabled people dislike most is being patronised. The view from a wheelchair is always waist height! This immediately makes people think you need:
Patting on the head
To be spoken to as if you were a child
………..the list goes on.
Wheelchair users are full of anecdotes about being treated this way, some very funny, others extremely irritating. Somebody once suggested that I ‘learn Spanish, it’ll be a challenge’ as if life wasn’t challenging enough! Or ‘I could really do with one of those’ referring to the wheelchair. These things are thoughtless and crass. Sometimes I say something back, mostly I don’t
It’s understandable that people who have had no direct or regular contact with disability find it difficult to comprehend. If you can’t think of something to say that doesn’t sound bad, probably best to say nothing at all.
There is a serious conclusion to be drawn here though, and it goes back to the two news stories above. It’s clear that professional services like the DWP need to provide proper training to their staff who are going to be dealing with disability issues such as PIP and other things, so that they know that being disabled does not turn you into a sub-human, or mean that you only have half a brain cell. Different disabilities need to be treated in different ways, according to their various levels and limitations.
Have you, as a disabled person, experienced any of the problems I’ve talked about, or have any anecdotal stories to tell? If you have please share by leaving a comment below.
I read an article two or three days ago about how Stoicism can help you be the person you want to be. I took quite a lot from it and considered how I could apply it to my own life
Under the heading ‘View from above’ the writer suggests re-evaluating ones life; perhaps in the evening, you review your day and how you feel about things that may have taken place. He writes:
‘How many times have you had a conversation or an interaction with someone and thought afterward “oh man, I should have said that”, or “I wish I hadn’t done that”?‘
(Toby Carr on Medium.com)
That has happened to me so many times. Indeed I used to spend hours after a conversation reviewing it in my mind and feeling cringingly embarrassed at the way I had conducted myself in the interaction.
Weird?! Not so, but the result of a complete lack of self confidence and extreme self-consciousness.
I began reading the Letters of Seneca, another great Stoic. In three brief letters on the shortness of life he said:
We are not given a short life but we make it short, and we are not ill-supplied but wasteful of it.”
(Seneca: The Shortness of Life)
I realised over time, reading Marcus Aurelius as well, that life was too short to worry about things I had said and was not able to take back, things I had worried about unnecessarily, situations I had handled badly. All the things that makes us human and fallible.
But I was soon to learn about the shortness of life in a dramatic fashion, which forced me to re-evaluate every single aspect of my life. My active life was cut short through illness and disability at the age of 48.
Although it has taken me 15 years to learn to live with my rapidly progressing paralysis, eventually I found a way to practice the teachings of the Stoics, just as I had always tried to do, to get over the self consciousness issues of my younger self, and all the things I wished had had different or better outcomes. Believe me, there is nothing that makes you more self conscious than suddenly having to live your life in a wheelchair!!
‘Exercise helps with mental clarity as well as general physical health’ and ‘Physical exercise should be a staple in everyone’s life’.
Obviously, for me, physical exercise was out of the question. Gone was the opportunity to take long walks to clear my head and do my thinking. Even now it’s difficult for me to find a private space to think.
I’ve always loved classical music, so with a pair of headphones I am able to get some thinking space listening to music that inspires me. That’s the nearest thing to a walk!
In addition, I can listen to the Letters and the Meditations on audiobooks.
So, despite my limitations, I still try to live and be the best I can be. I always try to think of something that makes me smile before I go to sleep. I don’t dwell on negative thoughts, or things I have said during the day or things that worry me, but to be in a positive frame of mind as I drift off.
None of it is easy – every slight movement or nerve pain reminds me I have MS and I will always have it. But, as someone close to me is fond of saying ‘life was never meant to be easy’. I’m sure everyone would agree with that sentence.
Be kind to yourself and, of course be kind to everyone.
Today Europa Editions publishes Elena Ferrante’s Key Words, by Italy’s foremost Ferrante scholar, Tiziana de Rogatis. Key Words takes the acclaimed Neapolitan Quartet beyond its Italian origins and connects it to the trends and networks of global literature. (Public Books.org).
For anybody who has read Ferrante anything written about her is interesting. Follow the link above to read more.
She is an enigma, as no one knows her real identity. It’s hard to believe, in the 21st Century, that anyone can keep themselves and their whereabouts secret. You would think that someone, somewhere would have found her and splashed her over social media. As far as I know, nobody has.
If you haven’t read any of her books, I urge you to start with this one, pictured here. I couldn’t stop once I started, the writing is amazing. This first one started out as the first of a trilogy, but, in fact Ferrante added a fourth. They are known as the Neopolitan Novels.
They chronicle the lives of two friends, starting in childhood and ending in old age. The style is fascinating, a little quirky. The story is so gripping I read all four one after the other, an unusual thing for me but it had to be done.
The two little girls in the first book live in a part of Naples which is poor, but in which people strive to make a living that they hope will lift them out of poverty and elevate them to a higher place in the order of things.
One child is clever, studious and sees education as her way out of her situation. Her counterpart is completely opposite, she runs wild most of the time, and sees marriage to a rich gangster as her way out.
These two characters are diametrically opposed but somehow they maintain an uneasy friendship throughout their lives, sometimes not seeing each other for years.
I haven’t given too much detail here, it would probably take all day! These novels are so rich in content, depth and just good storytelling. I’m going to leave you to judge for yourself.
I would recommend these books to anyone who loves reading life stories, or family sagas, or indeed just anyone who loves books. Happy Reading!
That’s a line from one of my favourite Neil Diamond songs. Just popped into my head as I was writing hello.
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……..!