#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

Who Cares?

April 8, 2018 by rolandclarke

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

October 19, 2015 by rolandclarke

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

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…

Why Ignore the Symptoms?

October 20, 2014 by rolandclarke

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.

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

PLEASE VISIT OTHER BLOGFEST PARTICIPANTS

1. Stephen Tremp	2. Ninja Captain Alex J. Cavanaugh
3. Michael Di Gesu @ In Time	4. L. Diane Wolfe
5. Literary Rambles	6. SA Larsen/Writer’s Alley
7. Confessions of a Watery Tart	8. Entertaining Interests
9. Writing Wings	10. Left and Write
11. Susan Says	12. DG Hudson – Rainforest Writing
13. Pensuasion	14. Clarissa Draper
15. The Story of a Writer	16. LuAnn Braley/Back Porchervations
17. Hilary of Positive Letters	18. Richard P Hughes
19. The Write Game	20. The Beveled Edge
21. Jay Noel – Writer on Fire	22. dolorah at Book Lover
23. Rohn Federbush	24. melanie schulz
25. Writer’s Block	26. Tamara Narayan
27. Julie@ Empty Nest Insider	28. My Miracle Life
29. Read is the New Black	30. Life by Chocolate
31. Diane Burton – Adventure and Romance	32. Pat Hatt
33. J. L. Campbell	34. TrueWanderings
35. Birgit	36. Arlee Bird Tossing It Out
37. The Warrior Muse	38. Michelle @ Writer~In~Transit

I’m Fine… but the MS is not

July 2, 2014 by rolandclarke

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.

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!

SIXTY ~ THE MAGIC NUMBER

August 7, 2013 by rolandclarke

Sixty seems like an achievement and part of me wishes it was counted in books rather than years. Yet I am thankful that there have been that many years.

Another milestone decade has crept up on me and I sit here wondering where all those years went. What have I achieved? Were the years wasted or worthwhile?

On the work front, pre-Multiple Sclerosis, I had a failed photography business, an organic fruit & veg wholesale business that seemed to turn to compost – but was decades ahead of its time – and a TV & Film company that lost way too much money. On the plus side I had equestrian articles and photos published, and the two equestrian competitions that I kick-started are both thriving even though I have had to retire through ill-health.

What happens next? Not retirement exactly, since some scribbling of sorts has continued, even if I’ve reached six-zero. Hopefully there is time yet to finish what I’ve started, but curiosity asks the question: Do writers die clutching a pen or a keyboard… or a mouse?

Of course I’ve already been in my 60th year for a while – if you want to be technical. Some people were claiming I was in my 50^th year when I turned 49. Great!

After six decades what am I thinking about? Am I planning a great announcement? Perhaps, although what has really changed, is I am still learning to write. But it doesn’t help having a body that is in need of a retro-fit or something. MS does have aspects that warrant it being called the MonSter.

What do I want for my birthday? A new body? Maybe more time to get things done. But in practical terms I’ve decided that my life is pretty good as it is. I’ve found my soul mate and inspiration – and she is the most precious part of my world now. We have a great home with two adorable cats, even when they interrupt our play or scratch the new furniture.

And the launch of my first book, ‘Spiral of Hooves’ grows nearer every day. First of sixty perhaps. It would be nice to envisage a row of leather bound books on a dark wood shelf in a paneled library. But the reality is more likely to be an e-reader with at most a dozen titles. However, there are only seven titles in the pipeline, including ‘Spiral of Hooves’, and although first drafts only take a month or three, the editing process takes ages = months stretching to years. Better get revising then.

Perhaps I need to re-evaluate my progress at the end of the next decade. Seems like a plan – along with the bookshelf.