Tag Archives: Multiple sclerosis

Why Ignore the Symptoms?

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Ignorance is bliss, supposedly, but that is not the answer. Nor is this a post about Writing. Health is today’s imperative – your health.

This is my contribution to the Survive and Thrive Bloghop! This blogfest, hosted by Stephen Tremp, Michael Di Gesu, L Diane Wolfe, and Alex J Cavanaugh, is “meant to bring awareness of disease prevention and early detection regarding medical conditions that may be averted or treated if caught in the early stages. Our desire is to motivate people to go in for early screening, and if a condition is caught early and treated, then our world just became a little better place to live.”

So why ignore your symptoms, because you are coping? They might go away – or they might get worse. I suspect that the doctor would prefer an early diagnosis than the complications of extended treatment.

Minor-seeming ailments could be the symptom of something worse. My earliest Multiple Sclerosis symptoms were subtle and could have been ignored. I went to my doctor and he diagnosed Repetitive Strain Injury, but, when the symptoms flared up again, I was sent for more extensive tests. These tests led, within three months, to the diagnosis that I had MS. I could have ignored the problems, continued driving – with extreme difficulty – and the consequences could have been far worse than early retirement, a wheelchair and a rebellious body.

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I’m not suggesting that doctors will always get their diagnosis right. There have been some tragic cases of medical incompetence. I might have gained a daughter when I got re-married, but within four months of her birthday in December 2010, she had died of stage four stomach cancer. A tragedy as she was a wonderful person, but the doctor told her that the stomach cramps were just acid reflux.

That suggests that if the problem persists, you should seek a second, third, fourth opinion. Don’t ignore the symptoms because the first doctor says you have a mild cold.

Maybe there is great value in the Chinese philosophy that prevention is the best cure. Traditionally, Chinese doctors had failed when a patient fell ill. But that’s another post. Just eat healthy until then.

 

Chicken Soup ~ Image courtesy of tiramisustudio at FreeDigitalPhotos.net

Chicken Soup ~ Image courtesy of tiramisustudio at FreeDigitalPhotos.net

PLEASE VISIT OTHER BLOGFEST PARTICIPANTS

 

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Staying on Track

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Dewy Cobweb ~ by Norman Hyett

Dewy Cobweb ~ by Norman Hyett

Two weeks into September and I am on track with the Multiple Sclerosis September Challenge. Thus far, I have met my target to write a short story a week.

The aim was to focus this month on writing (and editing) four tales in my “Gossamer Flames” saga, so I have been working through them chronologically. The first two were written before the month started, along with Nos. 4 and 8. Another four will complete the first Book of the Saga – Dust & Death.

Two down and two to go. Halfway and the challenge looks feasible. Donations are very much welcome – all in a very good cause.

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I am trying to vary my style a little, especially in terms of POV.  I have been attempting to write ‘deep/tight POV’ and it has been a real test. I am also having to edit as I go, or at least by working through each day’s writing before continuing, then doing some final edits before each week is out. Fighting the trials of the MS has added to the challenge, but I am winning.

However, I am aware that these edits may not be enough. I need volunteers as beta readers – to see if the tales work and make sense, whether the POV rings true, if my grammar sucks, etcetera. Volunteers please contact me. The beta readers for my opening tale found enough to warrant a revision, or two.

If you sign up for my newsletter, you will receive the final version before anyone else sees the ‘Book’. Beyond that day, I will release “Dust & Death – Book I of Gossamer Flames” as a collection.

Looking ahead to October, I know that I have to put some time aside to do my tax return – not that I make a fortune. Then I need to devote some time to the re-location of “Fates Maelstrom” from Dartmoor to Snowdonia.

For now it’s back to killing some vermin in Scotland – just don’t ask me what they are voting… it won’t matter when the Solar Apocalypse comes.

 

Is the Challenge over?

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When I woke this morning – Tuesday September 2nd – my body refused to co-operate. I was ready to give up all my writing challenges and escape. Does that make any sense?

Maybe it doesn’t if you read my last post on here… my last Insecure Writer’s Support Group post, when I wrote about the inspiration that keeps me going. However, it’s the first Wednesday of the month again and I have the doubts and the fears that we are meant to have conquered. Seems I am back to the struggle stage.

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Writing over the last month had been more about escaping into research… and into other worlds = MMORPGs – gaming. I had great plans for September: write at least one complete story in the Gossamer Flames series every week of the month. Not a lot in comparison with the 100k in 100 days Challenge that I’m failing at miserably and as usual. But this should be so much easier as it’s over a shorter period – just a month. It’s also less intensive than the A to Z Challenge, although that inspired many of the shorts in Gossamer Flames.

Creating a story a week is one bit of pressure that I have set for myself as part of the MS Challenge that runs in September – my Support Page is at https://www.justgiving.com/ChallengeMS2761/ . And two days in I was thinking of giving up, even if it is a central part of my Life Challenge… fighting the MonSter that wants my Life but mustn’t win.

If I have written four complete tales, and edited them, by the end of the month then I will have reached one goal – although some sponsorship would be a bonus.

And thanks to a comment, I’m re-inspired. The words made me visit a fascinating blogsite, where I read a wonderful article on Spirals http://jazzfeathersjewellery.wordpress.com/2014/03/08/spirals/. Following the trail to its creative conclusion, I bought my long-suffering wife a well-deserved present.

Steampunk Heart from JazzFeathers

Steampunk Heart from JazzFeathers

In case you hadn’t realised, this is my monthly post in IWSG and the awesome co-hosts for the September 3 posting of the IWSG will be Laura at My Baffling Brain, mark Koopmans, Shah Wharton, and Sheena-Kay Graham. And it’s IWSG’s three year anniversary of posting!

Oh you were expecting something else. Were you thinking I meant the Ice Bucket Challenge when I said Challenge in the title?

Yes that has dominated the media and is a worthy cause for ALS alias motor neurone disease, another neurological nightmare. Ice Water is also meant to be good for MS, except something cold like water sends me into spasms. If challenged I would sign the cheque and be inspired by Patrick Stewart’s Ice Bucket Challenge, jst as the Huffington Post were http://www.huffingtonpost.com/2014/08/22/patrick-stewart-ice-bucket-challenge-video_n_5701036.html.

There is also a link on the Huffington Post report to Benedict Cumberbatch who showed another way to NOT evade the Ice Bucket Challenge. How to douse a dragon?

 

I’m Fine… but the MS is not

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What should I say? Do I remain polite? Or complain?

But it’s good manners to say “Good morning” and ask how someone is, then remark on the weather. People don’t really want to know how I am, any more than they want to learn about my writing.

My wheelchair is invisible and all they see is the smile on my face… the smile that keeps me going, along with my writing. Depression, openly demonstrated, doesn’t sit well with MS, even if it lurks behind me most of the day.

I have real friends that understand, many writers that I met online, some even suffer with invisible illnesses and know the secret of hiding the pain. Yet there are days when the pain gets too much and I scream aloud, my body jerking with uncontrollable spasms. On those days both writing and thinking are jumbled. But I’m not the only sufferer that writes.

Writing is a healer and a distraction. Without writing my brain would have ground into a snail slither. Writing keeps my ‘little grey cells’ devising new ways to kill people, and new motivations for deviousness. Sadly, I can’t write down everything that flickers along the scrambled pathways.

So I’m Fine… on the outside, but I’m suffering inside, struggling to get the words out whether by voice or keyboard. The MS is taking time to emerge because the MS is making my life a daily struggle. But I will win, given enough time.

Yes, I flinch when I read MS. To me it is not a ManuScript, but a MonSter called Multiple Sclerosis.

And others live with their monsters and triumph.

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This is my monthly post in the Insecure Writers Support Group Day and there are many words of wisdom out in cyber-space. I’m only number 180 among 297 other bloggers. If you click here there are links to all of them and you can visit as many as you want. All thanks to Ninja Captain Alex J Cavanaugh and his co-hosts Krista McLaughlin, Kim Van Sickler, Heather Gardner, and Hart Johnson!

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Forty Days & Forty Nights without Internet

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Could you survive without your internet connection for 40 days and 40 nights? What about your phone?

Okay, it’s not like living without food or water or shelter as too many people do in this unjust world. But for those of us that have been pampered by modern technology it’s a big ask. One that BT aka British Telecom seems to feel is reasonable, or do they mean excusable. My multiple sclerosis disability has little if no bearing.

As I type this, on Saturday February 22nd, we will be sans broadband and sans phone from Friday February 28th to Thursday April 10th.

The outlook is bleak. The meaning stark and troubling. The portents are… okay I’m exaggerating but I’m still worried. Whinge warning.

Imagine no emails, or rather over 50 a day piling up in my AOL inbox = 200 plus by the time we get back online. Forget about sending out review copies of ‘Spiral of Hooves’ or promoting the novel. Surfing social media like Facebook and Twitter will be abandoned, as will any appearances in the cyber-world.

“Get a dongle”, I hear you shout in mass cacophony, and I know that you are right. With a dongle, and a signal, we can check our emails at least. If the charges are not too massive we can do a little more… others do from their iPods, Androids etcetera, from all kinds of locations, including Internet cafes. But going out to find the right place is not the same as working from our new office in our new home, where the desktops will be, with all the software. At least I don’t have to be online to create using Scrivener… just to back the work up on Dropbox or OneDrive.

In fact blog posts, either mine or anyone else’s are a non-starter. This one will have to be posted in advance, set for public consumption on Wednesday March 5th as part of the Insecure Writer’s Support Group. Whether anything will appear in April is a prediction that I cannot make… the crystal ball is dim. I’m meant to be taking part in the 2014 A to Z Challenge in April, but it could be hard.

If I find time in the midst of packing, I might attempt to write the first ten posts – A to J – and schedule them to appear on time. At least I know the theme – the World of Gossamer Steel.

With that reference I know that my alter-egos will suffer too. No gaming for 40 nights is almost worse than no surfing. How will I live if my avatar is unable to stop monsters pouring through Rifts or perverting Good in Middle Earth? The Sith Empire will conquer the galaxy in my absence and Conan will be deposed.

Oh wait, they’re not real and there are others to continue the struggle.

But ordering groceries and other goods is essential. There are local shops crying out for our custom, but being disabled there are advantages in having things delivered. Maybe we can do that by dongle as well. Reminds me, have I downloaded enough books onto my Kindle?

I envisage a problem occurring when we begin ordering from a dongle – the security guys at our bank will query the purchase in their diligent way. I’m pretty sure that online banking will be tough, although not impossible. But sending money to my wife’s kids in the US will be very hard, The only consolation is that my accounts package is offline.

As a writer I have some worries but know that I can continue to scribble without the internet. In fact removing it might lead to more productive days, as well as more days exploring the real world and making useful observations. Time to bring out the parchment and quill notebook and pen. So my scribbling life will be okay, if I ignore my other insecurities…

However, for my wife there is a more real problem. All her family are in the States and staying in touch with the USA by mobile/cell phone will be extremely difficult. Her mother is elderly and poorly. She keeps falling down and she would be unable to ring. It will be very expensive phoning the States on a cell phone, even with an international service.

Ultimately life with only a cell phone becomes a major problem in an emergency. We can call for help, if there is a signal. Being disabled I feel vulnerable, but that doesn’t seem to make any difference to British Telecom; any more than it does to the British government who sees us as a drain on the system, along with other scroungers.

Whinge over. Our situation is not dire. In retrospect there are others with far greater issues. Ours are just frustrating and grrrr.

Wife says we’ll live off the land and be sending smoke signals. Maybe the pigeon can come out of retirement along with the pony. The positives outweigh the negatives. New home, bespoke design to meet our needs, fabulous location, wonderful neighbourhood. I can feel another post coming, once we have explored the immediate area and have some great pictures. Just need to find a means to post it. But here’s a taster:

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22 Pant Mawr Park, Harlech, Wales

If all goes to plan, this will be my third posting of 2014 for the Insecure Writer’s Support Group. This is when we release our fears to the world – or offer encouragement to those who are feeling neurotic. If you’d like to join us, click on the logo and sign up. We post the first Wednesday of every month. Visit at least a dozen new blogs and leave a comment. Your words might be the encouragement someone needs.

The awesome co-hosts today are MJ Joachim, Elsie, Elizabeth Seckman, and Julie Flanders! Many thanks to all you co-hosts for your time and effort towards making all IWSG members feel welcome.

Life Throws Curve Balls

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A foggy evening 01

A foggy evening 01 (Photo credit: AnneCN)

This was meant to be my first attempt at an Insecure blog having failed to do one on the first Wednesday in October or November – sorry IWSG.

Damn those curve balls, whether they be my health (MS), stress, or moving plans. They keep on coming, so I keep trying to knock them away. This is another attempt, although I should be doing my tax return.

Starting on a positive note, I managed to write 50,000 words for NaNoWriMo in November, and a week later I had typed the last word ~ ‘forever’. This was only a 60k rough first draft of ‘Tortuous Terrain’, but at least it’s something to work on. With a lot of revision, editing, and critique, I should be able to produce a fitting sequel to ‘Spiral of Hooves’, my first published novel, coming shortly from Spectacle Publishing Media Group.

However, my 2013 NaNo effort will have to join the queue behind four other novels needing revision, although it might jump the queue a bit if the demand is there, and if other efforts are deemed unworthy of revision. And that is where I am in a quandary, and where I am Insecure. Where do I go from here? What do I tackle next? How can I improve my editing process, which with ‘Spiral of Hooves’ took at least a decade?

I look at the speed of others when it comes to producing finished books, and I marvel… and I shudder. Most of my Facebook writing friends are completing a book a year, sometimes as many as five. Some are even producing short stories as well. Although my health is a drawback, I am retired with more time, supposedly, than many of my colleagues.

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What do I give up doing? Linking with the digital world, by checking emails and social media? Learning my craft, by reading other blogs? My only escape, gaming?

Or do I set tighter deadlines? Or do I chill out and tell myself that at sixty I still have time? Or maybe I must accept that in the next life I will start trying to be a writer earlier.

It’s not straightforward when I find it easier plotting a new novel, even writing that first draft, than editing. I even have a sequel to the sequel churning around in my head… ever since I read a blog about writing a series, which suggested that one write the first and have the synopsis of Book 2 and of 3 in the wings. Great when I have two series in the pipeline ~ the Chasseur series (Spiral of Hooves++) and the Gossamer Steel series (Wyrm Bait++).

The solution is out there somewhere, but for now I will stop being a lone wolf howling at the moon, and stop baring my soul here so I can go edit ‘Wyrm Bait’, the next novel crying out for an audience. It’s already had at least two drafts, several critiques, and a professional edit.

Time to get the red pens out.

Is that the best solution? Or have I dismissed a better one above?

November

November (Photo credit: Cape Cod Cyclist)

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