Tag Archives: Health

#IWSG – Another Year

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This is the first Insecure Writer’s Support Group post of 2024 so, Happy New Year to everyone. May this year prove better than the one past, despite any gloomy predictions… forecasts which should be ignored as always.

2023 felt like a turbulent year from my health and my wife’s to writing and world events. I’m praying for positive developments in 2024, starting with everyone’s health… not just mine. As this is a writing blog, I wish you all a fruitful year, filled with inspiration.

I must prioritize completing the revision of Fevered Fuse and avoid distractions. Unfortunately, another urgent deadline is approaching fast… my 2023 tax return due January 31st. However, I cannot ignore world events, from Red Sea piracy to primarily the war in Ukraine. Even with the final draft of my Welsh police procedural preying on my conscience, I still get diverted by nightmares… well, Night Witches.

The WEP/IWSG challenges may be over, but I intend to continue writing episodes of my saga about the Ukrainian Chayka family. Even over New Year’s Eve, I was updating my notes about my fictional squadron. In 2024 the war will enter its third costly year – the third year of my coverage. However, I pray that a just peace with reparations will soon be reached. Then, that will be a perfect conclusion to the Freedom Flights collection.

Slava Ukrayini

Finally, I am hoping this post is seen by friends whom I have lost touch with over the last few years. This occurred in part because I stopped checking my Facebook pages. If you are one of those who wondered where I disappeared to, comment below and I’ll attempt to rekindle our friendship.

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Every month, IWSG announces 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!

January 3 question: Do you follow back your readers on BookBub or do you only follow back other authors?

The easy answer is I’m not conscious of having any BookBub readers, nor if my single novel is on the site. To be honest, I haven’t read anything on BookBub… well, not that I remember.

Sorry.

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The awesome co-hosts for the January 3 posting of the IWSG are Joylene Nowell Butler, Olga Godim, Diedre Knight, and Natalie Aguirre!

Finally, don’t forget to visit more active writers via the IWSG site:

Insecure Writer’s Support Group

Let’s rock the neurotic writing world!

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

Purpose: 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!


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!

#MyInvisibleMS – Rising above My MS

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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

Who Cares?

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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.

The Fall

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Autumn Forest (via whispering-n-winds)

Autumn Forest
(via whispering-n-winds)

Autumn is not here yet, and the leaves are hardly turning, so I had no reason to shout “Timber” as I hit the ground. Well, the floor of the bathroom – and my head and shoulders hit the shower.

Getting to the toilet is never easy, especially at night – or in this case at 7 a.m. in the morning, when it involves two wheelchair transfers. Multiple sclerosis drives me crazy. My body cramps up in bed, so I need to push, roll, and force my un-cooperative legs onto the floor. Then I have to push myself up off the bed and, using the bedside cupboard for extra support, swing into my wheelchair without falling. Stage One complete.

But then I need to reach the toilet before my bladder gives up on me – and it has a couple of times. And I need to do this without my legs going into a spasm, which makes it hard to turn the wheelchair through the bathroom door. The transfer onto the toilet relies on me getting the chair near enough to the grab bars on either side of the toilet. And then I have to swing myself across = Stage Two.

Multiple Sclerosis Fact #3 Spasticity

Multiple Sclerosis Fact #3 Spasticity

Except at 7 a.m. I failed to make it onto the toilet. I crashed to the ground lie a tree and screamed something. Fortunately, Juanita, my wife, woke up – as did the dogs – and tried to help the rigid body jammed between the shower and the radiator.

At least there were no canine surprises on the ground, and my bladder didn’t decide that this was the moment to use the floor.

However, we had major problems getting me up off the ground. Juanita tried helping, but at first she only strained her back and stomach. I only had the strength to struggle onto my knees with her help. But then getting up further proved impossible – until she manoeuvred a commode for me to climb onto.

Yes, a commode. Provided by the NHS back when it was impossible to get the wheelchair beside the bed. It had proved to have one major drawback though – it was a tight fit getting my personal bits inserted. Enough said. Move on.

Finally I moved onto the toilet, but by then my bladder had gone back to retaining everything, so couldn’t perform. Back to bed, but by then everyone was awake and sleep proved impossible.

Eventually, after an hour, I went to the toilet as needed. Then a few hours later, we rested our aching bodies. And yes I feel battered, but I’m glad that I didn’t break anything – hopefully not.

That was not the first fall, just the latest of many. My legs collapsed about a month ago and I needed the bed and Juanita to get back up. But I’m worrying about what will happen when I go down harder. Do we call the paramedics? There are no neighbours that could help.

And what happens when I’m taken to hospital. Juanita doesn’t have a UK driving licence, although we have one friend that might help there. That is one key reason why we are heading for the US where we have family – strong sons that can pick me up.

This Omar manufactured Park Home has serious design flaws, even though it was meant to have been built around my wheelchair. With toilets that had just one grab handle each? A shower with inaccessible taps? Basins that can’t be reached from a wheelchair? A cupboard blocking wheelchair access in the bedroom? We have had modifications made by another cowboy firm – modifications that needed more repair work. Don’t think we’ll be going the rebuild route next time.

So on the US front, we need to find somewhere that has the correct modifications, as well as great views, sociable neighbours, and a garden the dogs can dash around and around.

Except that brings us to the ongoing problem: when will my brother ever see the urgency of the situation? When it’s too late? My grand-mother died from complications caused by a fall. My mother had two severe falls before she died. How many does it take?

Will he continue with the blinkers?

Therefore, I may not be commenting on anyone’s blog today, but I have decided to post this today, as this has to be breaking news. Well, hopefully nothing is broken – and this is not going to make headlines or go viral. When did MS ever make the headlines? We are only pretending to be sick.

There are worse problems to report on – like the gossip about Kim Kardashian.

Now, have you heard about…

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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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35.

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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