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!
I suppose isolation for me is not so different from my every day, as I don’t get out much anyway, at least not in the Winter. I cannot tolerate the cold. The very word ‘winter’ makes me feel cold.
The only real difference is that I cannot see my family. My daughters came to have a coffee last week – they sat on garden chairs they had brought with them in the garden and we stayed in the kitchen! We managed and it was nice. I’ve spoken to my 5 year old grandson through a window! He’s finding it a bit hard to understand poor little chap.
Thank God for tech, I don’t know what I’d do without it. I wouldn’t be blogging for sure, and it’s something I really enjoy, I have made so many new friends all over the world.
Being housebound makes me feel safer but it doesn’t stop anxiety about the virus. I have to have carers and nurses coming into the house. Although they have personal protection equipment (PPE) I still feel uncomfortable about it.
I can understand how difficult it can be for people with mental health problems as well as for others, like me, with physical difficulties. People who are elderly, alone or isolated within an abusive relationship are going to find it hard to find anything positive in isolation. I am not trying to make light of the situation, or to diminish the reality of others.
I am worried, slightly scared and very uneasy. It’s all so weird. The streets are eerily quiet around my home although there are more joggers than I have ever seen before! Taking our Government’s advice about getting exercise seriously (that’ll be a first). We obviously have no visitors at all. My husband is quietly going stir crazy.
So last week I took a little holiday from blogging. The last time I did so. It was because I was having a crisis of confidence in myself and my writing. This time it was my choice. I actually read a lot which I haven’t done for ages, I tidied up my inbox, which had been sadly neglected. I listened to podcasts and my audiobook which I actually managed to finish, and start another one. No pressure to plan the next blog post.
But actually I did. I had to keep reminding myself that I was on holiday. But the desire to write is so strong, I just had to do it. The difference was time. I had time to think, time to read other blogs, some blogging tips. But I needed to write.
Suddenly I could clearly see that I needed to plan my week properly. I draft my blogs in Evernote. This is a useful app with templates for everything including a weekly planner. It was like an Epiphany (bit dramatic!). Finally I could see how I could organise my week to make sure I was productive.
I get so many e mails from bloggers I follow, and those who follow me (thank you). I like to read their posts and comments, I can learn so much. Last week I realised I spent one whole day just reading e mails. It was great to have the time for it.
What I usually do is read my emails as soon as I switch on my iPad in the morning. That’s been my mistake. It taken up so much time and energy leaving nothing for anything else. So my new plan is to skim through in the mornings to make sure there is nothing that needs dealing with immediately (like, you know, paying the bills!) and flagging the ones I want to read. Then in my new weekly planner I’m going to schedule in reading emails. If it uses up a day so be it. There are 7 days in a week. In isolation they all roll into one anyway!
I have decided that I will post once a week for the moment, which is in itself an improvement. If my planner works I might be able to step up to twice (wow I hear you all cry!). But for now, if I aim for one, it gives me time to do other things as well, like research and so on. I’ve got some ideas floating around in my head- that’s a dangerous place for them to be because they’ll float away before long, never to be seen again!
So, I’ve created an ideas log, again in Evernote. And I write them down. I wrote a post not so long ago about why good notes are essential if you’re a writer. I’m afraid that was a case of do as I say not as I do, despite my good intentions at the time. I’m taking my own advice now.
This is what isolation has meant for me. Because the world has stopped, I’ve felt able to stop and take stock. This seems a bit crass, since I don’t have work and other pressures outside the home, but being disabled comes with its own pressures and daily challenges. Just a little bit of time to organise things can make me feel I have some control over my life.
I love watching travel and wildlife programmes. I find them quite peaceful and easy to watch, especially before going to sleep. The cinematography is stunning.
They inspire me to want to see these places and things for myself. I am thinking about things I would like to be doing or things I wish I could do. I always think ‘if I was normal I could be doing that’ .
What is this ‘normal’? I spend most of my time writing about how disabled people should not be seen any differently to able-bodied people, about accessibility, about attitudes, and yet, in my private thoughts, I am basically defining myself as not ‘normal’.
I am going to attempt to explore why I do this.
When I had the first symptoms of MS my normality began to be something I didn’t recognise. Suddenly I couldn’t do all my ‘normal’ things. Just getting out of bed in the morning became strange.
Normal life was disrupted. Everything changed. Nothing was ever the same again. And so it has continued.
My ‘normal’ is wheelchair life. I have written about this before, so I won’t go into it again. What I want to do is examine why I think that what I am now is not normal.
This is really a terrible opinion of myself, and goes against the grain in every sense. I would never dream of defining someone else like that. I don’t think about with regard to others.
‘Normal’ defies definition – each person has their own normality. It’s the very misunderstanding of that which causes so much hate and prejudice in this world. We mutter and gossip about the lady in the house down the road because she dresses weirdly and has 20 cats. We look at people and define them as ‘different’ because they don’t fit our ‘normal’
Everyone’s normality is different. It belongs to them. It is their own. And we do not have the right to judge people in those terms. In fact, my personal belief is that we don’t have the right to judge people at all, but that’s because I’m a live and let live kind of person (if someone is inflicting harm because to them that is normal behaviour then that is a different story).
So why, in my private thoughts do I think of myself as not normal? I think the answer lies in my own mental processes. I know that there is no coming to terms with a big life-changing event, whatever that may be, but you can learn acceptance.
After 15 years I really thought I had achieved acceptance of my condition and what is in effect a new way of life. But am I kidding myself? To think that I might be living a lie, and that somewhere deep down I may not be being true to myself is horrifying.
Sometimes I have found myself saying out loud ‘oh I used to do that when I was alive’ ……. what the hell is all that about. I believe that I have mentally drawn a line between before and after. Between life and……….what. Not a ‘normal’ life clearly.
Given that these thoughts come to me totally unbidden, almost automatically with no warning, I’m not really sure how to tackle this weirdness. The mental process by which I have drawn this line must be so deep it’s impossible for me to control.
Does it really matter?
As I’ve pondered this question in my mind, over time, my thoughts are that perhaps, for me, no, it doesn’t matter very much. I cannot believe that I am the only disabled person, particularly when, like me, they have an unimagined new ‘normality’ after an active life.
People who develop chronic illness and those who have had accidents, whatever, must contemplate their life limitations deep down. How do other disabled people feel about themselves in their private thoughts?
Up to now these have been my private thoughts, but I decided to write about them because I wanted to see how it would feel to let them out. Now that I have, I can see that, for me, it actually doesn’t really matter. I refuse to be haunted or daunted by thoughts that have the ability to impact my mental health
If I don’t dwell on it they are fleeting regrets, if I think about it too long, which sometimes happens it’s just a sadness. Everybody, disabled or not, have thoughts that cause them fleeting regret or sadness, that is perfectly normal.
The trick is, when my thoughts go down the path of ‘I will never get to do that now’, is to let it pass by without lingering. It’s when you linger on those thoughts that they can lodge in your mind and cause real anxiety and distress. That’s something I, for one, am anxious to avoid.
Talent comes from originality which has a special manner of thinking of seeing of understanding and of judging.
Guy de Maupassant, Pierre et Jean
I recently read some blogging tips. The advice was ‘start with a small project’. It made me think.
What is a small project? Does it mean writing a short blog. Or writing a blog and doing some small scale marketing for it. Or maybe something else, like organising all the rubbish that you collect and putting it in some sort of order.
When I was young, I loved projects. We did them at school. I remember doing one on the cocoa bean and how it gets turned into chocolate. I wrote to Cadbury’s and asked for any information they could give me and they sent me loads of interesting stuff.
I collected information about hotels I stayed in with my parents (they were great travellers- we went all over Europe, by car, quite unusual in the 60’s), and when I got home I would write projects on them all. I drew pictures, stuck things in, I was really creative.
I suppose they were small projects. At the time, to me as a child, they seemed like big projects, and I loved them. I enjoyed organising things in a scrapbook or folder. I wrote commentary on all the information I had collected and I wrote about our travels.
When I think back now, as a child I was quite imaginative. I loved reading and at the age of nine, would walk the short distance to our local library. I would browse for ages and would always go home with three or four books.
I would write stories, which my mother would read and would tell me I had a great imagination. When you are a child, it seems you are uninhibited by all the self consciousness that suddenly takes over your life when you become a teenager.
I certainly felt like that. Suddenly, I could no longer write stories, do projects and I had no inclination to do it. My teenage years were not happy ones. I was uncomfortable in my own skin and learned to live inside myself.
I am still fairly introverted. I have never been happy in a crowd. I never really liked parties, preferring one-to-one, or a small group of people I was completely comfortable with. I was probably a bit of a dork!
Photo by Sigmund on Unsplash
Even after I was married I remained uncomfortable in large groups, and preferred the company of my family and close friends. Age has taught me that the number of close friends you have is fairly small. But they are the ones that stay with you through thick and thin.
Becoming disabled has reinforced this. My close friends are still there, supporting me, bringing cake (that’s how well they know me) and humour to my life.
So I’m happy being an introvert.
I started a project – this blog. I suppose it was a small project to begin with, but it now looms large in my life. I don’t claim to have great talent but I always wanted to write, and I always imagined living in a cottage by the sea and writing to my hearts content.
Well, life didn’t quite go that way, but I’m writing. I love it. I couldn’t live without it. It’s given me a purpose in my limited life. I don’t get to publish as often as I would like, life intervenes. But I don’t plan to give up on this anytime soon.
So, please keep reading. This is one project I’m happy to share.
I’ve just read an article written by a successful blogger interviewing other successful bloggers about their morning routine and how it contributes to their productivity during the day.
In every single one of the six interviews I read, no matter when they woke up, no matter what time of the morning, be it 5 a.m. or 9, their first task was writing. Journaling was the most popular thing, setting out goals for the day, reflecting and thinking.
Clearly none of these bloggers have children, bar one, who said she had a 5 year old. She writes before the child wakes. I have to say, in my experience of 5 year olds, she must have to get up pretty early.
I’m not criticising, I’m just astonished and slightly envious. When I was younger and, thank goodness, healthy I was married and bringing up 5 children. The mornings were absolute mayhem, getting them up, ready for school, making sure they had breakfast, games kit, packed lunches etc etc. Every mum will know the drill. Certainly no room to put a word on a page!
The only thing I got up early for was to feed the baby, or in later years, to grab a quick coffee before the chaos began!Too exhausted to write anything except note in child’s homework book or something.
Once the last one went to school, I started and ran my own business (with my friend and business partner) for the next eight years. Then, going to the gym early in the morning was more important to my wellbeing.
My husband worked long hours, I tried to fit my work into school hours, so I was able to pick the kids up. I also worked weekends.
During this time, I did keep a journal of sorts, when I had time, or remembered to write in it. When my youngest child was about 12, I started a degree course with The Open University, when obviously writing was intrinsic to the course.
My morning routine was no less chaotic, I still had four children at home, my eldest having gone to Uni by this time.
Sometimes, as the kids got older and were sleeping in a bit longer, on a Sunday morning I would get up and take coffee and the papers back to bed where my husband and I would read them and the kids wandered in and out.
Once they all grew up and one by one left home, I could finally have a morning routine that suited me. But it didn’t involve writing or journaling in any way. It just meant coffee and reading my book. I hadn’t properly read a book in years. Now was my chance!
(Just notice how often coffee pops up in this story!)
Then I got MS. I had managed to keep a journal going when my symptoms started, because I needed to get things on paper (yes paper!) for my mental health.
Since I’ve been a tetraplegic (10 years now) I have a morning routine that is not of my choosing. Now I couldn’t write in the morning even if I wanted to. My mornings are strictly controlled to be ready for carers every morning when they come at 9.30 a.m.
Twice a week community nurses come in at 10 and the carers at 11. Since I am put to bed at 6 in the evening, most days are short. I have to fit all my writing and other things like seeing my friends and family into this short day.
I suppose these very productive bloggers must have become successful so they treat it as a business. I have been learning to blog for six months now and it’s changed and enriched my life in so many ways. But my morning routine is as it is!
I just hope I’m as successful as they are one day even without the enviable morning routine!
I listened to an interview with the fiction writer Louise Penny recently. She said that she had suffered from writers block, and had seen a therapist. She learned that the biggest obstacle to writing is fear. Fear stops thoughts, ideas and characters entering one’s mind freely and then being transferred onto paper. Recently, I heard the quote ‘the only thing we have to fear is fear itself’ (F D Roosevelt). The next day, I opened an e mail from the British Library focused on writing, Then, quite coincidentally, I read an article about President Roosevelt in which the same quote appeared.
This seemed to be telling me something. That I should overcome my fear of the blank page and just start!
It all depends how I feel; if I’m having a bad MS day, if I haven’t slept well. If I need more coffee! Most importantly, whether I can remember an idea that may have floated through my brain and out again three weeks before!
I’m sure it is a common problem for a lot of writers, especially if, like me, they are fairly new to the process. There is also the fact that writing is never a matter of just the idea or the content, but the spelling, the grammar, the constant re-reading, editing, the list goes on. Even if youare mostly housebound and sitting in a wheelchair all day, when you think there would be limitless time, it never quite works out like that.
I just read an article by Brian Ye published in The Writers Cooperative, a Medium Publication.In it, he describes how note-taking is invaluable in the process of writing.Whether you use a notebook and pen (as he did for a long time) or electronic note taking (as he does now), being able to jot down ideas when you think of them can help to build a comprehensive list of ideas which should help to overcome the fear of the blank piece of paper or screen.
I do make notes rather sporadically and in a haphazard sort of way. I use the Notes app on my iPad. The problem is that a random idea can be lost amongst my very disorganised pages, which contain telephone numbers, appointments, names, lists – trying to find some idea in that lot is almost impossible. Even if I do find it, it’s usually so vague that I’ve forgotten what it was in the first place!
So, inspired by Mr Ye, I have decided to download a note-taking app and use it properly. Thank you Sir.
If I had a pound for every title or tagline that absolutely swears this thing or that will change my life, I wouldn’t need to do anything for money in my life ever again. I could change, transform and make everything better overnight. It has become a sort of epidemic in writing. You are promised every sort of panacea to whatever you think is wrong with your life.
Surely if it was as easy as these articles, blogs, you tubers, podcasters claim, we would all have done it by now and we wouldn’t need them. We would all have transformed ourselves wondrously from whatever we think we are to whatever we think we want to be.
I’m as guilty as everyone else of being caught by these attention grabbing headlines, mostly, in my case, on blogs about improving my writing and transforming my blog into a multi million pound business and achieve my dreams. This is about as unlikely as me getting up out of my wheelchair and walking! And yet every day, despite me being determined not to, I read them. Then I follow links within them and read those too, until I suddenly realise that two hours have gone from my morning.
My days are short and those two hours are precious. Instead of reading about blogging I should be blogging! I have found some of it really useful, especially the Facebook groups I’ve joined. To me it’s more valuable to share a blog post on a group and let other bloggers comment (if they want to!) or to ask a question and let others answer with their experiences.
Maybe reading these articles takes our minds off a particular problem or worry. Maybe we look to them in the hope of having a ‘Eureka’ moment, suddenly showing us what we’ve been missing, how we can find the one thing we need, the ability to change our life forever. It rarely happens. It’s not that simple.
I’ve read blogs written by people who truly have changed their lives. The guy working in Silicone Valley who left his job, set up his own website and then travelled the world whilst working, a ‘digital nomad’. Or the couple whose lifestyle website was so successful they gave up their day jobs and cycled round the world, whilst maintaining their blog!
I read blog advice in the hope that I can finally produce the post that goes viral! Maybe this post will (not likely). But I live in hope. Some of these articles strengthens my resolve.
I have gained nuggets of info which have inspired me to try to improve my blog, and I think that’s really the point, Reading them and gaining small bits of information or picking up tips can be really inspirational or just helpful in solving a problem, or moving forwards. That seems more realistic than changing your whole life overnight!
There is, of course, the possibility that I have got this all wrong, that this is all we’re meant to take away, the odd tip or trick.
One blog I read actually set out a checklist to help you achieve your dream life, nothing wrong with that, you may think, but just have a look:
I’m not saying this is in anyway wrong, just a tad unrealistic! I’ve no doubt that this is meant to be a long-term plan, but I think most people who read these advice blogs are looking for something that moves a bit quicker!
To be fair, this is only one blog I found among many I’m sure, but it caught my eye when I looked into the idea of a ‘freedom lifestyle’ (see https://bellesdays.com/can-we-live-a-freedom-lifestyle) because it did seem rather far-fetched.
So, whilst people want to read things writers will want to write these things. But I have realised through my unconstructed reading, that you can get so lost in how many ways there are to achieve what you want, that you forget that the only way is to just bite the bullet and do it!
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.
