#MyInvisibleMS – Rising above My MS

May 30, 2019 by rolandclarke

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/

https://multiplesclerosis.net/living-with-ms/world-ms-day/?utm_source=weekly&utm_medium=email&utm_campaign=2d9b7d5d-ee8d-403e-b191-2355ae9e436d&utm_confid=sovifjrls&aGVhbHRoIHVuaW9uIGJsYWg=146a932303bed7863edf97fa5abced8af83452853f6d323093713fa1fb4938ce

https://www.huffingtonpost.co.uk/entry/world-ms-day_uk_5ceea074e4b07666546f4cec?guccounter=1&guce_referrer=aHR0cHM6Ly9zZWFyY2gueWFob28uY29tLw&guce_referrer_sig=AQAAACZX8wwYM8s5mMl0mItDZgSDDcz7W3SjKXS1jSJ-tE8xdiDbUcsSHs_R1eMys4V0eYOthE8EvytM0nL4rGgEdNchU3Y7sX9Dhtd4OUPiwuVYX7gM2EPz42OuaQOlnZWYkg3ke15FWzGqgxrk9G06EOR3l4epW89Ho8VtGAnhFIKv

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 – What Life Crisis?

October 3, 2018 by rolandclarke

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.

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

Thursday is cancelled- maybe forever

August 2, 2018 by rolandclarke

Today’s Thursday Creation Review has been trampled on by an invasion – an invasion and occupation that might impact on the next few posts. I’m praying – and might make a sacrifice as well – to create an inspired space for some writing, or at least scribbling.

Beyond kids that must scream, yell and stomp, setting the dogs barking, I have the MS reactions to deal with. Loud noises and excessive input triggers spasms and meltdowns.

I am writing this on Thursday evening – well, I started yesterday morning with the now-shelved review– and this ramble might be posted before midnight Honolulu time.

It didn’t help to have a collection agency insist that we owed $40,000 for a bill that was fifteen years old and not even ours. Somehow, we will placate them before they foreclose on our house.

I’m coping badly with step-great-grandkids, especially when they ask me to read, interrupt me, say they were falling asleep at the end, then stomp off leaving me to put their mess away. Never again – MS makes reading aloud a struggle that kids can’t understand.

As for writing, that’s mentally scrambled and splintered. But I intend to write something for the WEP Challenge on Monday – if the kids give me space…and my protagonist co-operates.

Photo of Dolbadarn Castle, Snowdonia by Etrusia UK on Flickr

#IWSG – Surprising Myself

September 6, 2017 by rolandclarke

I’m tackling my monthly post for Insecure Writer’s Support Group Day in two parts, not because I have two answers but because I have two different thoughts churning through my scrambled head. On then to this month’s optional question and Part I:

September 6^th Question: Have you ever surprised yourself with your writing?

(For example, by trying a new genre you didn’t think you’d be comfortable in?)

If I look at my teens and early tweens, SF was the genre I escaped into in my creative life while all things ‘country/rural’ were my journalistic fare. An equestrian mystery when I retired seemed a natural progression, although a few decades late. So, no surprise there then, nor when a small press published it after my writing group was positive about the drafts of Spiral of Hooves.

However, I was surprised when the horse world ignored the novel despite my career as an equestrian journalist and event organiser. Better luck the second time around?

On the genre side, I surprised myself by attempting children’s stories – that came to nothing, so far. Plus, I just found some old poems and those surprised me. I’m still reverting to mysteries for now.

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! 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

The awesome co-hosts for the August 2 posting of the IWSG are Tyrean Martinson, Tara Tyler, Raimey Gallant, and Beverly Stowe McClure.

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Joker quote written in blood by meho41 on DeviantArt meho41.deviantart.com

Part II – Written in Blood

Having multiple sclerosis creates challenges every day and I have been pushed to create new daily regimes, adapting to my initial surprise when diagnosed in 2000. I was learning to live with my MS symptoms, and although they can be excruciating plus debilitating, I knew other suffer worse illnesses. MS is not a death sentence. Life expectancy is normal or close to normal for most people with MS, although it is a chronic illness.

Then, on 23^rd August, my doctor told me that I had some sort of blood cancer. I’m remaining positive – except when my computer glitches – as the series of blood tests since the Spring indicate its slow-growing and the oncologist will tell me more on September 18^th.

However, I decided it was time for a bucket list – as long as nobody suggests skydiving; the wheelchair can do that solo. Among the list of things I must do, like going to Canada, exploring all of Idaho, arranging a Steve Hackett concert in Boise, and maxing three MMORPG avatars, is the crucial Writing Legacy.

In short, I need to get my 9+ WIPs in order, of course aiming to publish them all = another 13 years, if not 117 by the rate releasing ‘Spiral of Hooves’.

#IWSG – Confessions about quitting

June 7, 2017 by rolandclarke

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.

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!

Insecure and Invalid

April 7, 2017 by rolandclarke

Apologies that I missed my monthly post for Insecure Writer’s Support Group Day, although only by about twenty-four hours. I even have a valid excuse and a doctor’s note – well pages of notes and homework.

Wind back to Monday – basically, I had woken early Monday morning with terrible MS spasms throughout my body. They were so bad that my wife Juanita thought she was losing me, but she helped me through the nightmare. Then throughout the day, there was a growing stream of MS symptoms starting with an inability to type coherently. That was very clear in my final post on Facebook:

“After a terrible night when Juanita Clarke was luckily tere for me, psting is very hard as mystyping everything. So apologies for siaslence.”

From then on, my wife had to keep everyone on Facebook informed of what happened. The shaking became uncontrollable and I slid out of my wheelchair at which point, Juanita rang her granddaughter Jessica, who dashed around to help. Her middle son Jason also arrived. I then vomited up my supper all over the office carpet. Jason phoned 911 and the paramedics arrived in a fire truck and an ambulance.

I was taken to the ER at St Luke’s Hospital, Meridian where they diagnosed pneumonia which had triggered those MS symptoms. In short, I ended up spending three nights in hospital being pumped with drugs and fluids, sucked of blood, and cared for by a great team at St Luke’s – too many to mention by name but you know who you are, especially if I grilled you about your ancestry or talked incessantly about my writing.

Throughout this all I missed my wife, Juanita, although she did visit me – at the hospital where she spent two night after her heart attack in late December. Our dogs were always on my thoughts as they couldn’t visit, but I had to confront everything I would lose if I gave up. So now I am back home and posting this explanation for my tardiness and failure to post yesterday.

Yes, I know I posted ‘D is for Donibane’ but some of my A to Z Challenge posts were written and scheduled in advance. However, the last one written and scheduled is ‘I is for Ice’. Hopefully, I can stay ahead, but I won’t be taking Sundays off unless the doctor orders me to rest…. which she has.