It’s just how it is!

Yesterday was extremely unproductive. I was frustrated at the end of the day so I wrote exactly what I was feeling. I have never done this before, not where it might be seen anyway. I didn’t intend to publish it. But then, I thought, why not?

What follows is what I wrote; absolutely no amendments. Please keep reading, the end is positive I promise.

Photo by Kinga Cichewicz on Unsplash

Monday

I can’t be bothered to do anything today. Not even to play games or listen to my book. I’m cold and I’m tired and I just want to go to bed. This is how it is sometimes. MS can bring you down just like that. I made a reasonable effort at reading and a bit of writing this morning but this afternoon is useless. I’m counting down the time to bedtime.

I hate these days. This has been coming on for a while. All last week I was struggling. Now the clocks have gone back and it’s darker earlier, even more depressing.

This makes me anxious. I worry that Im not going to be able to snap out of it this time. I’ve done it countless times before, dragged myself up again into the light. But each time, it gets harder and I get more and more worried that I won’t surface.

I’m going to get a my hair cut on Thursday. Sometimes going out can make me feel better and lift me out of this. But I know that deep down I’m anxious about this as well, the prospect of leaving the house always has that effect on me.

It’s hard for people around me to understand. Because I’m always smiling, always cheerful (so they tell me) they don’t like it if they think I’m sinking because it worries them.

I don’t like it much either. It is soul-destroying. These are the days when all I can think about is what I lost when this horrible disease got hold of me.

Everything I was and everything I had before has gone. I have no privacy, no dignity, no freedom and worst of all, absolutely no choice. I cannot choose to get up in the morning when I please, or take a shower or simply get some breakfast. I cannot curl up on the sofa with a hot chocolate and a good book. Worst of all, I cannot pick up my grandchildren, swing them round and cuddle them. It breaks my heart when my daughters struggle with childcare and I can’t help.

The worst thing, I can no longer sleep in the same bed as my husband, put my arms round him and give him a hug or even sit at the table with him to eat. We cannot go out in the evening to the cinema, or for a meal or any of the things other people take for granted. He is my full time carer and although I am only 65, at 86 he finds it very tiring. I should be the one looking after him.

So this is where I am today. Tomorrow could be completely different. I never know.


Depressing isn’t it? And yet today I feel fine. I’ve read some useful articles this morning, carried out some research online. And now I’m writing.

So you see, sometimes it’s just how it is!

Photo by Firman Kholik on Unsplash

That ‘fear’ word again

Photo by Danielle MacInnes on Unsplash

Oh no! I hear you all groan. Not another depressing piece.  Fear not!!

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.  Later on I heard the quote ‘the only thing we have to fear is fear itself’ (F D Roosevelt).  This morning 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 you are mostly housebound like me and sitting in a wheelchair all day, when you think I would have 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.

Photo by Alejandro Escamilla on Unsplash

How to Keep a Notebook of Ideas Close (and Why) Brian Ye https://writingcooperative.com

Why should it be so difficult………?

In June, this year, my husband and I took our usual flight from Heathrow to Toulouse in France home to our house where we lived for 10 years. Since we returned to the UK three years ago we can only manage to get there for just six weeks a year.

This is because of my disability. Or, actually it’s not! It’s because it is so difficult and stressful to take the flight.

We used to drive down back in the day when we were both fit and healthy, sometimes staying somewhere on the way down. We would stay for six months and then go home for six months.

So, we moved, lock, stock and barrel. I got into the health and social security system, and we got help. At the time I could still walk with a Zimmer frame. As my condition worsened the amount of care I needed increased and it happened!

But now we had to fly home if we wanted to see our family. And so it began. A catalogue of errors and mishaps and downright inefficiency and incompetence. Flying from the UK and back after our visit this summer was the pinnacle of all these things.

Photo by Annie Theby on Unsplash

When I was no longer able to drive, but was still just about walking, we could fly Ryan Air. Easy peasy! When I could no longer manage the stairs at home and the farce of attempting to get a diagnosis (a story for another day!) we decided to move there permanently. Our house is an old farmhouse with no stairs.

Flying out from Heathrow in June, despite asking the Assistance Team four times not to take the legs off my wheelchair to transfer me to a boarding chair (you can’t take your chair on to the plane), they did it anyway. Somewhat inevitably, they were subsequently lost.

The return journey was even worse. To cut a very long story short; flight cancelled, rebooked for the next day, disability arrangements not carried forward, upshot – no Assistance Team at the airport! Assistance was provided – by four young women in BA staff uniforms. They decided to stand me up on my completely useless legs despite me telling them what would happen. Result; I collapsed painfully, they panicked, threw me back towards my chair which I only just reached and I ended up in an extremely painful and undignified position. They called the Fire Brigade!

The one good thing was we were upgraded to business class! During all this I lost a front tooth. Back in the UK I had to have emergency dental treatment privately ( no NHS dentist could give me an urgent appointment) which cost me £745!

I decided to make a claim for compensation from the airline. After all, they had reimbursed me for the cost of the new wheelchair legs I had to buy.

They disputed the claim denying any liability. Now, strictly speaking, British Airways do not provide the disability assistance themselves. It is provided by another company. However, on this occasion they did, as they were left with little choice. They are refusing to compensate me for my dental treatment, saying that the airport provided assistance (in my view totally inadequate) therefore they cannot be held responsible, notwithstanding the fact that the Senior crew member told me to make a claim.

I need to make something clear. It’s not money that motivates me. It is the sheer inability of companies who advertise a service to understand the need for understanding and empathy when dealing with the diverse needs of people with disabilities. But, more than that, they need to listen. I have made this point over and over again to BA, on forums, anywhere I can. The CEO of Disability Rights UK (www.disabilityrightsuk.org) has written to his BA counterpart suggesting ways in which they can improve their service.

Yet, everyday on Twitter I see complaints about BA, RyanAir, and Easy Jet and their disability assistance.

I don’t know what it will take for them to wake up and smell the coffee, but I know I’m going to keep on trying.

Photo by Yassine Khalfalli on Unsplash

Fear is the path to the dark side – how to come into the light

 

Photographer unknown

 

All Star Wars fans will recognise the famous Joda quote in the title. 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 was afraid, paralysed by fear. This made my symptoms worse. By the time I was actually diagnosed (seven years later by a French neurologist!) I could no longer walk, write, feed myself. Since then I have had peritonitis, a urostomy, numerous hospital stays and visits, four wheelchairs, and most serious, sepsis with toxic shock which had me at death’s door.

Notwithstanding this, 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.

One thing that is essential if you are reading this, don’t think this is all going to happen to you. It’s not. Every single case of MS is different. Whether you have yet to be diagnosed or have a diagnosis your feelings about it will be different.

If you are alone, afraid and depressed, all this may sound a bit smug. I don’t mean it to be, this is my story. It’s taken me 15 years to reach this point. Life is never simple. Even without added complications such as illness, my life is a challenge every day. I won’t say the fear has completely gone, I don’t think it ever will, but I hope that anybody reading this will take something away from it that may help them.

If you are facing this alone, there are many supporters out there. Try https://www.ms-uk.org or https://ms.newlifeoutlook.com. Another useful site is the Sue Ryder charity which provides local Day Centres where you can undertake activities or just have coffee and cake! Find them at https://www.sueryder.org/

Photo by Adriel Kloppenburg on Unsplash

Reflections

What a title – ‘reflections’?  Not exactly a draw-you-in type title is it? I’m useless at thinking  up titles anyway. Perhaps I should write first and title afterwards.  The thing is I wrote it because it was just what I was doing – reflecting.  Being confined to a wheelchair there is plenty of time to do it.  This morning we have sunshine at last so I can sit here in the kitchen with my coffee with the doors open and look out at my lovely garden (courtesy of the lady who lived here before us, none of our doing!). At the top of the hill in front of me is the local cemetery.  I can see a stone cross and various headstones. When we first moved here it spooked me, but now I regard it as a peaceful place. I have been persuaded by lots of my friends that that is what it is. So I’ve come round to the idea.

My main thought this morning is I’m so glad I’m alive. Three years ago I was brought back from the brink of death by a fantastic group of doctors and nurses to whom I owe a debt of gratitude that is priceless beyond words.  Since then I’ve valued every second.  And I intend to go on as long as I can before I take the walk up the hill in front of me.

At the same time though, I know that there are many people in this world

who do not have the opportunity to sit and reflect as I have done this morning. I’m aware of how much of a luxury it is.  I don’t feel guilty when I see a homeless person sleeping on a bench in my local town centre, that would be pointless.  What I do feel is just terribly inexorably sad.  I just want to give him a big hug.  But that would not help to get him off the street.

Is it alright not to feel guilty? It’s not my fault,  I think.  It may not be their fault either but a result of a chain of circumstances.  If it’s a systemic failure, which is my preferred option, then how can I, we, as individuals really contribute to solving this crisis.  I know this is endlessly debated, and many individuals do give their time and effort to try to change things.  I’m not saying anything new, only what came into my mind when I was ‘reflecting’.

 

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The Journey Continues

Thanks for joining me!

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!