#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

Tremor Warnings

Two recent events have shaken my routine. One a post and one a game. Nothing earth shattering, more tremors – warnings of what might or will occur.

This post about ‘diversity’, Social Justice Warriors, and the withdrawal of Amélie Wen Zhao’s Blood Heir set me thinking about my current WIP, Fevered Few and what I was attempting.

I’m a WASP hetero male trying to write a novel with a female queer protagonist in the North Wales Police. Am I heading for the pillory or worse – even if I am trying to use diversity readers?

I had already realised I needed to tread carefully after a somewhat different controversy arose over the sexuality choices in the game Assassin’s Creed: Odyssey.

It probably doesn’t help that I’m making my protagonist Welsh with a deaf sister, since I’m English and I’ve never even committed a crime – other than parking illegally or speeding. Okay, I’m disabled, with Quaker abolitionist ancestors and splashes of Latin and Scottish blood. But none of those are qualifications.

Okay, SF writers write about aliens but aren’t from another planet. However, we don’t see the aliens protesting; or is that why there are abductions and experiments?

Is the solution to stop writing my Welsh police procedural series and tackle a topic that I know about? Horses?

Dang, I’ve done that and got criticised for my lack of knowledge.

Falling? My life-story could be fictionalised, but who is inspired by that? Not me.

Insecurity 1. Meltdown imminent.

Later the same day, I went into Assassin’s Creed: Syndicate and got thrown into a quest that required me to press/punch/mash keys in quick succession.

Fail. Retry. Fail. Retry.

Fail. Retry. Fail. Retry.

Fail. Retry. Fail. Retry.

The fingers on my left hand locked up, and my hand became a useless claw while my head thumped.

Insecurity 2. Meltdown imminent.

That was not the first time that my hand and my reactions failed.  I had the same problem in Shadow of the Tomb Raider last week. Plus, it occurs when I type so when I’m working on a novel or a post – like now.

Meltdown

The harsh reality is that my multiple sclerosis is threatening to disrupt my life again – if I let it. I need to amend the rules…move the goalposts. Or change rackets.

Well, keyboards.

But not the typing element as half the keys are missing.

  • Step Two – Dictation software. I’ve ordered Dragon NaturallySpeaking Premium 13 – arriving on Saturday. However, training my Dragon will take time, especially as my speech is slurred – MS side-effect. It will mean that in a few weeks, I might get to write as fast as I talk.

Even after spending this money, I still need to decide if I’m writing the right novel – the one that will cover all these extravagances.

MS is a frustrating MonSter, and I must learn to roll with its punches and fight back. There will be other rounds, but I’ve got this one.

Yes, I need to consider Audible as my eyes are at risk – not just from reading. Double vision was my initial symptom back in 1999, so the warning is there.

More rabbit holes beckon.

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

 

 

#IWSG – Confessions about quitting

Insecure Writers Support Group Badge

Time for the monthly post as it’s Insecure Writer’s Support Group Day – well tomorrow is. I’m writing this a day early as I have the energy and my eyes aren’t as bad they have been – more of that below.

The starting point is what is this month’s optional question?

June 7 Question: Did you ever say “I quit”? If so, what happened to make you come back to writing?

That’s a tough one. The simple answer is that when I had a non-writing job then it was simply workload that made me quit and the urge to write down an idea that brought me back. So, in some cases that was months later and in too many cases it was years before I listened to my muse.

Then came multiple sclerosis and by then I was an equestrian journalist. Eventually, the disease forced me to quit. But there was a novel that needed writing and even though I retired as a journalist, I struggled on with the novel. Thirteen years after I was diagnosed with MS, “Spiral of Hooves” was published in December 2013. Sadly, the book is out of print but plans are afoot to re-publish and there is even a cover design by the brilliant Jonathan Temples, as the old one was designed for the original publishers.

What do you think? Does it make you want to read the novel? (Apologies that it’s a PDF link at the moment)

Rolandbook1_5x8BW290V4

The re-release of “Spiral of Hooves” was to be the re-launch of my writing career, but the damn disease disagreed. Followers on Facebook might know that I get tired and my eyes are troubling me so I’m cutting back on what I do. I’ve struggled to expand my A to Z posts into “A Brief History of Kanata” and that is ready for some beta volunteers. Anyone want an alternative history lesson?

Apologies if I hardly visit or comment anymore because that has become one solution. But am I about to quit for good or will the muse that has inspired other draft novels to help me stumble on? I must remember how to touch type as my voice is too glitched to use voice recognition software. Or is there another way not to quit?

*

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! Be sure to link to this page and display the badge in your post.

Let’s rock the neurotic writing world!Our Twitter handle is @TheIWSG and hashtag is #IWSG

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.

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.

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.

The awesome co-hosts for the June 7 posting of the IWSG are JH Moncrieff, Madeline Mora-Summonte, Jen Chandler, Megan Morgan, and Heather Gardner!

Graylin Brown – a review

 

I’m feeling a bit stressed at the moment, trying to get my debut novel republished, my latest book revised, falling behind in the revision workshop I’m meant to be doing, aware that April is the Blogging from A to Z Challenge, and that I need to announce my A to Z theme in three days.

On top of all that, I realise that there are nine books that I read over the winter but never did proper reviews for; not because I didn’t enjoy them but because I let life get in the way – or should that be declining health and fending off the MonSter. So, that brings me to the stand-out book in the list and the one that meant a great deal.

GraylinBrown33560665

Graylin Brown

by Rodney Saulsberry

If you love the Motown sound you will love, Graylin Brown! The fictional story of a soulful R&B singer, William Bell, who made his way from Detroit to Hollywood with all the joy and pain in between.

 

Review *****

I must confess that I can’t remember why I picked this book up, but I must admit that I was so grateful from the moment I started reading it. It was probably another review or an Amazon sample but I’m totally glad whatever the reason was. This was a beautiful and emotional read.

From the opening scene, the reader knows that something is wrong with William Bell as he lies in a hospital bed – I had been there and knew. But then the book flashes back to when William was healthy and caught up in the early days of Motown as a talented musician for whom stardom beckoned. Those were wonderful moments and I was swept along, although in the pit of my stomach I knew what was coming. Something strikes him down and the doctors can’t diagnose him – not surprising as this was the 60s and even now this disease is missed or overlooked; and even in 2000, I slipped through the system in a way.

But this is William’s story, not mine. And from here there are a few hinted spoilers, so if you don’t want to know more, stop here and believe me that this book may be shortish but a novel that I recommend.

William recovers, but his recording boss sees him as a liability, waiting for this unknown disease to strike. His career staggers along as his colleagues that he had a hit record with flourish. The cruelty of those judgmental people like his boss is so real and Rodney Saulsberry captures every nuance.

Some years later, William collapses again and from there – well read the book. William’s struggle mimicked mine in many ways, although I have never had a hit record, just struggled with multiple sclerosis. But I understood what he was going through. I asked the author how he had captured the progress so perfectly and he told me that he had family members that had lived with MS.

This is a very realistic depiction of life with multiple sclerosis, with great characters. The feel of the music industry back in the Motown days feels realistic, especially as I have close musician friends though from later decades. I urge you to read this, and I might even be brave enough to do that again. At moments, it had me in tears, not least because the main character’s MS echoed mine, but also because his blood family were there for him at every moment.

The ending is beautiful and so much more. Writing this brings those emotions back. When you finish this moving read, you might understand why.

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