Jan 2020 – Welcome to Belles Days

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.

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!

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?

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.

Tomorrow is another day!

New Year, New Decade

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.

Happy New Decade!