How My Life Changed Almost Overnight

And what I’ve learned

Photo by Kinga Cichewicz on Unsplash

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.

Read more

https://www.ms-uk.org

https://ms.newlifeoutlook.com.

https://www.sueryder.org

Photo by Adriel Kloppenburg on Unsplash

Why should disability exclude us from travel

The simple answer is it shouldn’t

Photo by Nicole Geri on Unsplash

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.

Photo by AbsolutVision on Unsplash

Read more:

https://www.theguardian.com/society/2020/feb/09/red-tape-and-bad-attitudes-block-the-way-for-disabled-travellers

https://www.theguardian.com/education/2020/feb/12/hull-university-not-accessible-to-wheelchair-users

What to Do When Plans Go Wrong and Do We Need Them?

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!

Photo by Aditya Chinchure on Unsplash

How it feels to live with chronic illness

Six things I learned that may help

“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:

  1. Always listen to what your body is telling you. Whatever type of disability you have your body can always tell you something.
  2. Don’t push yourself beyond your physical and/or mental capabilities.
  3. 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.
  4. 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.
  5. 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.
  6. 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.

Tomorrow is another day!

Photo by Sincerely Media on Unsplash

How do we change attitudes

Disabled people are not another species

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.

When I read the newspaper to gain ideas and information for my writing I am instantly drawn to disability issues. Inevitable? Probably.

Photo by Matthias Diesel on Unsplash

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 as disabling as physical disability.

It is well known amongst the disabled community in the UK, 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 will often lead to an award of PIP at a lower level than what is actually required, leaving people already struggling even more disadvantaged. 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.”

Robyn Taylor

Unfortunately, this doesn’t apply to just the benefits system. Attitudes are not always hostile, but just as bad – patronising.

We are part of the human species

What disabled people dislike most is being patronised. The view from a wheelchair is always waist height! This immediately makes people think you need:

  1. Ignoring
  2. Pitying
  3. Patting on the head
  4. To be spoken to as if you were a child
  5. Sympathetic looks

………..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.

Being disabled does not turn you into a sub-human species, 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.

It would be good if attitudes could change so that life when you are disabled gets easier not harder. The world needs to look beyond the disability and see the person who is there.

Pnhoto by Dan Meyers on Unsplash

Living the very best life you can

What we can learn from the Stoics
Photo: Barns Images on Unsplash

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.

What the Stoics can teach us

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!!

Toby writes:

‘Exercise helps with mental clarity as well as general physical health’ and ‘Physical exercise should be a staple in everyone’s life’.

(Toby Carr)

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 of the Stoics 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.

Be kind to yourself, live your best life and, of course be kind to everyone else.

Photo: Sourced from Google Images

First published 10th December on https://medium.com

Moving Forwards

Photo by Toa Heftiba on Unsplash
How to face your fears and move on

Wednesday of this week for me, was momentous. You will probably think that what I am going to say next is not much to write home about!

I went out in my new power chair. There it is. I can hear the murmurs ‘and?’ ‘so?’ ‘and that was momentous because….’.

Having a power chair after years of depending on other people to be pushed around is a wondrous thing. Having no choice as to where you can go, concern about whether the person pushing is able to manage awkward spaces, being parked while they go down a supermarket aisle or go off to talk to someone, is one of the most frustrating things in a disabled person’s life. It has been my life for the past nine years.

About six months ago (yes six months) I finally got a made to measure power chair. At first I wasn’t allowed to go outside in it. This had to wait for an assessment to see if I was ready.

Eventually, I got the date for the assessment. I was very nervous, I panicked when they put me in a chair that had 5 speeds. My chair only had 3 and I usually pottered around the house at 1! Even more scary was that I had to do everything at speed 5! I won’t bore you with the details except to say it was terrifying! There seemed to be more than the usual amount of old ladies with shopping trolleys and mums with buggies and toddlers – all of which I obviously had to avoid!

I passed. Don’t ask me how I haven’t a clue. Somebody came to my house the next day and altered my speeds to five.

Wednesday was the first big test. My daughter offered to take me to the local golf club for brunch. I was going to a cafe where there was potential to plough into tables and chairs, and basically wreck the place. It took me back to the time when I had a mobility scooter and I knocked over a whole rack of ladies’ underwear in Marks and Spencer’s There were bras and knickers all over the place! Mortifying!

So, I was apprehensive of course, but I knew that if I didn’t do it now I would never do it.

It was fantastic. It will be memorable to me in this journey I’m on. It has given me so much more confidence to go out more. It just goes to show that you must face your fears to move onwards and upwards!

Photo by Sharon McCutcheon on Unsplash