#MyInvisibleMS – Rising above My MS

Thursday May 30th, 2019, marks World MS Day, an opportunity for the global community to come together, share stories, and increase awareness about what living with multiple sclerosis (MS) is really like.

The sun is shining, and I can see blue sky outside, so let’s start with the positives.

I might have retired early but now have time to write more fiction – and at my own speed. Fewer deadlines mean less stress.

I get to spend more time with my wife, our dogs and cats, and with my stepfamily. Some family even help us around the house and garden.

My MS symptoms are sporadic and, in some ways, less severe than for others with MS or other chronic diseases. Much of the time, I can ignore them and attempt to get a few things done – like writing and chilling.

I can stay up late – playing computer games – and stay in bed without having to go to work. My schedule and not some magazine’s or newspaper’s.

Relaxation

However, I can’t ignore the invisible nature of MS – even if many do. I’m in a wheelchair so no longer invisible – just an obstacle blocking the aisle or sidewalk. But I wish people would realise my brain still works – well, most of the time but in weird ways.

MS creates a brain fog. I struggle with thoughts, finding my words – lost or jumbled. Thinking can be as hit or miss as writing or speaking. I stumble through this confusion and fall often.

Falling is a fear extending to the physical. When I walked, I stumbled and fell. Now, when I transfer to and from my wheelchair, the danger has changed – somewhat. I still hit the floor hard though. And my wife can’t pick me up so has to call for help.

Is the MS my fault? The truth is none of us sufferers have MS because of some bad habit or poor lifestyle choice. Some things might trigger symptoms – like stress or noise – but there is no known cause. This strikes many different people with varying lifestyles.

I ate organic vegetarian food mostly, didn’t smoke, or drink often. My work wasn’t more stressful than some. But my health dice came up with MS – and leukaemia.

Meeting others with MS, or reading about them, made me realise our symptoms can differ – hence the ‘multiple’. The course of the disease, the speed and the intensity vary. So, our treatments are as diverse as our symptoms.

Symptoms are chronic, debilitating, and so much more intense than others understand. Fatigue strikes fast and not always when I plan to nap. This is not tired in the normal sense.

My emotions flare as well. I get angry over stupid things, from emails to computer games. And the tears flow with regular ease – from pleasure, frustration, from sadness. Intense noise grates, like dogs barking or kids screaming. Sensory overload is a daily hazard.

My internal thermostat is faulty. Most of the time I’m cold but I can overheat, especially in warm, muggy weather. Damp or humid weather don’t suit – even if I miss wet Wales. The sea breeze there dispelled the dampness.

The medical approach to MS, especially here in the US, leans heavily towards keeping the pharmaceutical companies in business, rather than a cure. Disease modifiers – not that I got those with the NHS postcode lottery – are the norm. But there isn’t an acceptable one for my secondary progressive MS. Under neither system was medical marijuana an option for me – well, not legally in Idaho.

But the medical research has brought benefits and relief to many. Those newly diagnosed have choices I didn’t. There is hope out there.

However, people still believe MS is a death sentence – it is not. We are perhaps vulnerable to other conditions as our immune system is compromised. That doesn’t mean MS will kill me. So, don’t count on inheriting yet, brother.

But it is a life sentence. Emphasis on LIFE! The inspirational people with MS tell me “there’s a lot of it to be lived after diagnosis”. I have plans and things to do – like publish the Snowdon Shadows series; and that’s four books and ideas churning.

Whatever condition gets rolled for us, we are warriors and life is precious so worth fighting for.

Visibility

The Multiple Sclerosis International Federation (MSIF) is encouraging family members, caregivers, and patients affected by multiple sclerosis to participate in World MS Day today. Each year, MSIF, which now includes dozens of MS organizations worldwide, launches a campaign focused on a different theme to mark the day. This year’s theme is Visibility. Called “My Invisible MS” (#MyInvisibleMS), the 2019 campaign is geared toward raising awareness of the invisible symptoms of MS, and their hidden impact on the quality of life of MS patients, their family members, and caregivers.

Other Multiple Sclerosis links for today:

Selma Blair and MS https://www.womenshealthmag.com/health/a26532498/selma-blair-ms-gma-interview-spasmodic-dysphonia/

Positive Living with MS https://positivelivingwithms.com/2019/05/30/i-am-not-multiple-sclerosis-and-have-not-been-misdiagnosed/

MS On My Mind https://www.msisonmymind.com/what-is-ms-on-my-mind

#IWSG – Hero or Villain POV?


Created and hosted by the Ninja Captain himself, Alex J. Cavanaugh, the Insecure Writer’s Support Group monthly blog post is here again – and so am I.

It’s been another bad month and my plans to develop and focus on Fevered Few, my NaNoWriMo novel were derailed so I am no longer sure about the track to publication. I am wondering if attempting to find a publisher for my second novel is realistic or whether I would be better to merely blog my scenes over an indefinite period.

 I will be posting the opening to another Sparkle Anwyl mystery for the WEP/IWSG Challenge next month as well as a separate Sparkle Anwyl case during the Blogging from A to Z Challenge in April. Perhaps that is the way forward for my fiction writing rather than attempting to edit a novel – like Fevered Few – for submission to a small press.

What would you suggest that I do? Blog posts or publication?

Much of my writing problems are due to my health. During the last few weeks, it has become harder to type as my left hand is cramping up – like forming a claw. One of my solutions is training a dragon – Dragon Naturally Speaking. This post is my first using the dictation software. Apologies therefore for any errors in this trial run which the dogs are constantly interrupting.

Bark-bark. Woof-woof.

Anyway, on to this month’s question.

March 6 question – Whose perspective do you like to write from best, the hero (protagonist) or the villain (antagonist)? And why?

Most of my writing is from the hero’s point of view but I have written from the villain’s perspective a few times.

My current WIP is from the POV of Sparkle Anwyl, my Welsh detective protagonist. However, some of the chapters within other draft novels have been written either from the villain’s perspective or from the POV of a shadowy and unclear character. I haven’t yet had to get inside the mind of a darker antagonist as these characters have been more misguided or conned by their own self-belief.

What about your favourite perspective? Hero or villain?


The Welsh Dragon, Mametz Wood Memorial

**

The awesome co-hosts for the March 6 posting of the IWSG are Fundy Blue, Beverly Stowe McClure, Erika Beebe, and Lisa Buie-Collard!

Purpose of IWSG: To share and encourage. Writers can express doubts and concerns without fear of appearing foolish or weak. Those who have been through the fire can offer assistance and guidance. It’s a safe haven for insecure writers of all kinds!

Every month, we announce a question that members can answer in their IWSG post. These questions may prompt you to share advice, insight, a personal experience or story. Include your answer to the question in your IWSG post or let it inspire your post if you are struggling with something to say.

Posting: The first Wednesday of every month is officially Insecure Writer’s Support Group day. Post your thoughts on your own blog. Talk about your doubts and the fears you you have conquered. Discuss your struggles and triumphs. Offer a word of encouragement for others who are struggling. Visit others in the group and connect with your fellow writer – aim for a dozen new people each time – and return comments. This group is all about connecting!


Let’s rock the neurotic writing world!


Our Twitter handle is @TheIWSG and hashtag is #IWSG.

Every month, we announce a question that members can answer in their IWSG post. These questions may prompt you to share advice, insight, a personal experience or story. Include your answer to the question in your IWSG post or let it inspire your post if you are struggling with something to say. 

Remember, the question is optional! 

The Things You Didn’t See – a review

As I’m a writer that reads, this book review comes first and then the life problems are the footnote to this new style post.

UPDATE: This was my first read for the 2019 Cloak and Dagger Challenge written before I compiled my list.

The Things You Didn’t See

by

Ruth Dugdall (Goodreads Author)

Her instincts are telling her something isn’t right…

On a chilly morning in rural Suffolk, Cassandra Hawke is woken by a gunshot. Her mother is clinging on to her life, the weapon still lying nearby. Everyone thinks it’s attempted suicide—but none of it makes any sense to Cass. She’s certain there’s more to it than meets the eye.

With her husband and father telling her she’s paranoid, Cass finds an unlikely ally in student paramedic Holly. Like Cass, she believes something is wrong, and together they try to uncover the truth. But is there more to Holly’s interest than she’s letting on?

With her family and loved ones at risk, Cass must ask herself: is she ready to hear the truth, and can she deal with the consequences?

**

            Review 4.4 stars

If I went by the blurb, this book would be Cassandra Hawke’s tale – but that’s just part of this novel which starts twenty years earlier when eight-year-old Holly Redwood sees a ghost shot at a remote farm on Halloween.  The unresolved experience lurks in her past until as a trainee paramedic she is called out to help with an attempted suicide – at the same farm.

Cass doesn’t believe that her mother committed suicide but her husband and her father behave as if she is paranoid. However, she befriends Holly who believes her as the explanations don’t feel right. And Holly suffers from synaesthesia, a condition where the person can feel the emotions of others as if they are their own – a mixed blessing it seems for Holly.

The setting pulled me in, in part as I know Suffolk and Norfolk. The descriptions were immersive, blending imagined places with the real ones that matched my memories.

The author uses two POVs to differentiate the two protagonists – first person for Cass and third for Holly. First allows the reader to see into Cass’s confused thoughts – the mind some say is paranoid. There are reasons for that, but I’ll just say that those are cleverly unclear at first. Who is telling the truth?

Holly as a protagonist stood out for me – and not just because of the prologue that set the unsettling feelings going.

As a fan of first person and deep POV, I kept wanting to get inside Holly’s head more than was possible. However, two first person POVs is hard for some readers, and the author made the necessary choice choosing Cass – a mind that twists the plot. And the suspicions. Would Holly as first person POV instead been a different book?

Suicide or murder? What starts as an ‘open and shut’ case, works through murder suspects at a steady pace that was in danger of losing me – especially when I identified the culprit or thought I did. But there was enough drama for me to read on and meet all the secondary characters – including the suspects. They all had their own traits and worked. But too many felt irritating, even if there was some justification for their attitudes. Death and murder have repercussions. Or do they for everyone? Who profits?

This is not a rushed mystery but as the plot deepens, the pace picks up. I had my suspicions, but my suspect remained hidden from the police for a long time. There was a point where I felt the story was being drawn-out, but I was also teased and tested. Suicide can be instigated, and I have experienced that. But that may or may not be the resolution?

Am I teasing or tempting you? Read this recommended novel to find out what happens in this cleverly crafted story. The twist works even if…well, you’ll see what I mean.

Story – four stars

Setting/World-building – five stars

Authenticity – five stars

Characters – four stars

Structure – four stars

Readability – four stars

Editing – five stars

**

Falling Future

I was aiming to write this review for Thursday 3rd January, but I was still working through New Year emails, my IWSG post, and other messages that overwhelmed me into Friday and beyond. And then came the weekend, and writing was not easy as my mind was fractured by my MS. Plus, the emails kept coming.

Anyway, this review was delayed until I could make a realistic space – and create a new banner that lets me post any day of the week.

UPDATE: Added the banner as I forgot yesterday – distracted by this new WordPress layout.

It didn’t help that I fell on the floor – or rather crashed out of my manual wheelchair transferring to a power chair. We’ve been looking at buying a power wheelchair, but they are expensive – especially on two retirement incomes. Second-hand is more manageable so that is the route we are going.

Falling hurts – especially when I smashed my head, broke a tooth, and bruised my right arm; I’m right-handed. Falling could be a theme too – for my memoir. Falling in love, falling from horses (or ponies) and falling ill – which means falling on the ground.

So, do I start working on / distracting myself with my life story? Should it be called ‘The Art of Falling’ or ‘A Life of Falling’ or something else?

Next week’s new arrival

#IWSG – What Life Crisis?

Insecure Writers Support Group Badge

My headline is not exactly the question prompt for this month’s  Insecure Writer’s Support Group monthly blog post, but it’s what I have to keep saying to avoid a meltdown.

October 3 question – How do major life events affect your writing? Has writing ever helped you through something?

The real questions – well, two questions.

I can’t pretend that one critical life event didn’t impact my writing. When I was diagnosed with multiple sclerosis in January 2000, my career as an equestrian journalist began to wind in; not immediately, but as I lost the ability to do the job efficiently, retirement loomed. By 2005, I had quit writing reports and by 2010, my involvement with horse shows had ended.

However, writing fiction filled some of the gaps in my life, and my debut novel, Spiral of Hooves was mainly written after I retired. My ongoing health problems do make writing every day hard, but sometimes the writing can distract from having a chronic illness– well two as I also have blood cancer, chronic lymphoblastic leukaemia (CLL).

But MS doesn’t distract from noisy step-great-grand-kids as the disease makes me sensitive to noise (as well as other things like temperature). Maybe I can use the experience for a children’s story.

As I began writing with some seriousness in my teens, there are possibly other life events of relevance. One day, I might remember.

Our current crisis is financial and could lead to a house move/down-sizing. Again, writing is a distraction, although I envisage obstacles like having no computer for some days – but not for so long as the move from Wales to the US.

NaNoWriMo might be a fail though. At least, I can scribble things down, even if MS makes my handwriting illegible – plus, I have plenty of notepads.

My muse will help me through this crisis.

Awww - Roland and Juanita.

Do you juggle major life events and writing? Or do they feed each other?

**

The awesome co-hosts for the October 3 posting of the IWSG are Dolorah @ Book Lover,Christopher D. Votey, Tanya Miranda, and Chemist Ken!

Purpose of IWSG: To share and encourage. Writers can express doubts and concerns without fear of appearing foolish or weak. Those who have been through the fire can offer assistance and guidance. It’s a safe haven for insecure writers of all kinds!

Every month, we announce a question that members can answer in their IWSG post. These questions may prompt you to share advice, insight, a personal experience or story. Include your answer to the question in your IWSG post or let it inspire your post if you are struggling with something to say.

Posting: The first Wednesday of every month is officially Insecure Writer’s Support Group day. Post your thoughts on your own blog. Talk about your doubts and the fears you have conquered. Discuss your struggles and triumphs. Offer a word of encouragement for others who are struggling. Visit others in the group and connect with your fellow writer – aim for a dozen new people each time – and return comments. This group is all about connecting! 

Let’s rock the neurotic writing world!

Our Twitter handle is @TheIWSG and hashtag is #IWSG

 

 

Who Cares?

1af16c3887c35d1c9c848826339b335d

Does anyone care if I get to Z? I’m burning myself out this April.

Does anyone care if I miss letters?  I’ve done 12 and have 14 more to do.

Who cares if the games are obscure? O is going to be tough, perhaps N even – and then there’s X and Y.

Does anyone care if I haven’t played all the games? I’ve never played on anything but a PC – Nintendo and PlayStation seem to have evaded me. Yet, many of the biggest franchises have been console games.

Do I care what happens? Well, I hate starting and leaving anything half-finished. I don’t like un-finished reads. But most of my draft novels are unfinished.

So why not my posts?

Maybe, I can just post the titles. Or be kind and give some clues – like in a puzzle game.

Except…I care and that hurts now – along with my fingers, head and more. I wish I could lie down.

Souper Blog Hop

souper blog hop

This Souper Blog Hop stirred all sorts of memories, some ‘souper’ delicious and some seriously sad.

‘Souper’ as in the soups of my childhood – mostly home-made vegetable, sometimes puréed with a hand-operated Moulinex – and then there are some favourites over the decades as I discovered more decadent tastes like Vichyssoise and Lobster Bisque, plus tasty treats like Butternut Squash soup. More on my favourite later in this post (although I am struggling with my health as I write this).

The sad refers to incidents in my childhood and early teens when I discovered the meaner side of human nature. When you’ve been bullied, you side with the victim and sympathize with them as characters in fiction – be that films or books. The problem of bullying is real and needs to be faced.

So, first, the book that made this possible: Pea Soup Disaster by Elaine Kaye. This children’s book is suitable for kids of all ages and adults as there is an excellent message about bullying behind an amusing and easy to follow story, illustrated by Danyelayers. It’s a quick four-star read and one I look forward to reading my great-grand-kids – and I look forward to more adventures of Gregory Green.

Pea Soup Disaster Cover

 BLURB: Gregory Green loves his mom’s pea soup, but when he eats it at school, all of his friends make fun of how it looks. He doesn’t think it looks like bugs, and it tastes good! Then at recess, his friends run from him, screaming, “He’s a monster!” Gregory doesn’t know why his friends are being mean until he sees his skin is green. The teasing gets worse until an unlikely friend comes to the rescue—his teddy bear, Sammy. Sammy usually only comes to life for Gregory and his family, but Sammy has an important lesson to teach Gregory and his classmates.

Available in Print:

AMAZON

Elaine Kaye

ABOUT THE AUTHOR: Elaine Kaye got the idea for Pea Soup Disaster from her son who loved to eat her homemade pea soup. Pea Soup Disaster is the first of many fun stories featuring Gregory Green and his teddy bear, Sammy, as part of the Gregory Green Adventure series.

Kaye has worked as a library assistant and teacher’s assistant in elementary schools in the Sunshine State. She currently lives in Florida, but she has called Michigan; Honolulu, Hawaii; and Okinawa, Japan home. She is a grandmother of three boys.

Find Elaine:

Website / Instagram / Litsy – @ElaineKaye

Goodreads / Amazon

 

Visit the other Souper Blog Hop participants:

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Click here to enter your link and view this Linky Tools list…

 


Broccoli soup1

Broccoli and Stilton Soup

And now to my all-time favourite, first-choice on the menu soup. In fact, for many years, Broccoli & Stilton Soup has headed my soupy list. I figure that might be because I enjoyed it so much in the early days of The New Covent Garden Soup Co.

Searching for that perfect recipe was a research challenge. I confess that I have never been much of a cook beyond throwing random ingredients together. Nowadays, MS and cooking don’t go together – that’s my excuse for dropping pans and messing up the kitchen floor.

broccoli-cheese

Anyway, first stop was looking for the New Covent Garden Soup recipe. But the best that I could find was a recipe for Broccoli and Blue Cheese, which is close. But I wanted Stilton, and certainly not the mature cheddar version that seems to have become the American preference.

With a nod to Elaine Kaye’s Pea Soup Disaster, here’s an interesting soup – Broccoli, Pea and Pesto.

broccoli-pea

Undaunted, my quest continued, and I found and read various online recipes, but none quite took my fancy. Then I found a fellow traveller drawn by memories of New Covent Garden Soup Co.’s Broccoli & Stilton soup – Felicity Cloake in The Guardian.

Who? Well, Felicity Cloake is “a writer specialising in food and drink and winner of the 2011 Guild of Food Writers awards for Food Journalist of the Year and New Media of the Year. Her first recipe book, Perfect, is published by Fig Tree. She likes to think she’d try any food once – although an eyeball recently caused her to question this gung-ho gastronomic philosophy.”

Her more extensive exploration of Broccoli and Stilton soup entailed trying out various recipes, including some that I had found but not sampled. You can read her culinary journey here – https://www.theguardian.com/lifeandstyle/2018/jan/04/how-make-perfect-broccoli-stilton-soup-cheese-shallots-stock-cream

B&Ssoup

The perfect broccoli and stilton soup. Photograph: Felicity Cloake for the Guardian

But for those that want the recipe now, the one that works for me – when my wife  adds her touches – here is Felicity Cloake’s recipe:

Perfect broccoli and stilton soup

(Serves 4)

2 tbsp butter
2 shallots or 1 small onion, finely chopped
800ml chicken or vegetable stock
600ml milk
800g broccoli
200g stilton, crumbled
Nutmeg, to garnish

Melt the butter in a large saucepan over a medium-low heat and add the shallots. Fry gently until soft and golden.

Meanwhile, cut the broccoli stalks into smallish chunks, then add to the pan with the softened shallots, fry for a minute, then pour in the stock and milk. Bring to a simmer, then cook until the stalk is beginning to soften (how long will depend on the size). Meanwhile, cut the head into small individual florets.

Once the stalk is almost tender, add the florets to the pan along with most of the Stilton, keeping a little back for garnish. Stir well, bring to a simmer, cover then cook for about 5 minutes, until the cheese has melted and the florets are soft.

Allow to cool slightly, then puree until smooth. Taste and season if necessary, then divide between bowls and top with the remaining cheese and a good grating of nutmeg.