Tag Archives: Multiple sclerosis

The Fall

by

7

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…

cdd86cfe83966ea55f47199e5c68402b

Will I clear the medical hurdle?

by

12

Well the US emigration adventure is moving forward. On August 11th, 36 days after applying, I got the approval letter from the US Embassy, which allows me to proceed to the next step of the visa process.

Then another eleven days later, on Saturday August 22nd, I received the crucial LND number that allows me to fix a date for my medical examination – probably in late September. If that goes well, and I pass muster, then the final step will be the interview at the US Embassy in London.

This all presumes that we can fix the medical date for late September. The medical is only valid for six months, but most of those are winter months when it could be hard to move the animals to the US – they can’t fly if it is too cold or too hot. Without a house, moving is near impossible. And my brother holds the purse strings, so everything is on hold until he gives the go-ahead, which could be next year.

However, there is a more immediate concern. Ironically, my MS shouldn’t be the problem, except the stress on hyper-drive. I have all the relevant documents from my doctor and health experts – the local practise put all my records on a disc. These go back quite a few years, well before I was diagnosed in 2000. Although I will have to sign up for medical insurance in the US, having a disease like MS is not a ‘fail’ as such. And once I ensure that I am fully up-to-date with my vaccinations, then there shouldn’t be a problem – I hope.

fd6a0b9306bea4eb33c76f2f4578481b (1)

So what’s the problem? Why the hurdle?

The examination is at Knightsbridge in London, a six and a half hour drive from Harlech for us. I no longer drive. Juanita doesn’t have a full UK licence so we can’t use the motorways. And like many people, she doesn’t want to drive in London. Even though I’ve lived there and driven extensively in the capital, I totally sympathise. It’s a stressful task. So we’ll be looking for some form of chauffeur… well a kind friend.

Incontinence is a problem already solved, and I’m prepared for the exhaustion, but then there is my car sickness, which had been banished for numerous decades, but that problem has now re-turned in all its childhood nastiness. (See “The Candle”.) Maybe my worsening MS might be at the root of the sickness. When we moved up here in February 2014, I had no severe sickness, even though it was an eight hour journey. However, when the Red Cross drove me to Bangor Hospital, I felt terrible. Maybe the same pills that I took for the 2014 move will work for the trek to London.

Let’s hope they do. Otherwise, I’ll be the wrong colour when I see the US doctor… and the US Embassy official a few weeks later.

Should these be called hurdles or fences? What else looms? Beyond the house purchase and sale, I see a huge water jump. That’s massive – and another post. Where do you think that jump lies?

(Source: ithoroughbred)

(Source: ithoroughbred)

Why move to Idaho?

by

10

ba377b97d389d50ac8585d2bb4bd3e43

Before I answer that crucial question, welcome to the first Pick’n’Mix blog post. I will attempt to post something at this same time and on this same site every week. And rather than having a specific topic, this will be whatever seems tastiest – as suggested.

Anyway, when I announced that I was attempting to emigrate across the pond to Idaho, some people questioned that choice?

“Why move there?” they asked. “There are better places for your MS – Switzerland or Spain.”

True. My multiple sclerosis gets worse in damp, cold weather, and in humid, hot weather. And sadly Wales has ticked the first box, this year. The second rules out many places in the more distant East, like India or Singapore. However, the key thing is having family and friends that can be supportive. A non-starter in this park home estate, where I seem to have a communicable disease, and when my family show no sign of caring what happens to me.

But I have another family that does care, and they are in Boise, Idaho. They may be step-kids and step-grandkids, but they are ready to be there for both of us. In fact, they have already showed they care, both in words and deeds. For instance, when my wife, Juanita, and I were with them in 2010 and 2011, they did everything for us from putting us up to carrying me when I couldn’t walk.

So that’s why we are moving back to Idaho, even if the move is complicated – especially by my brother. I need to get the right US visa and as well as copious documents, that includes a medical, which means an eight-hour drive to London. Then a few weeks later an interview at the US Embassy, again in London.

We need to buy a house, which is why we need my brother to guarantee the finance, which is mine for life. Then we have to sell our home in Wales. There is the shipping to arrange, and four pets to fly there, when the weather is right – they can’t fly when it is too hot or too cold. And I’m in a wheelchair so flying is a nightmare.

Before you ask about the culture shock, I should say that I escaped to Canada for three years and had Landed Immigrant status there. Yes, the US is not Canada, but it meant leaving home. And haven’t I already done that when I moved to Wales? This is not the country that I grew up in. The familiar haunts have been left behind. I’d already taken steps away from the equestrian world that I worked in, and I haven’t established similar contacts here.

So I’ve left home, and we are already in another country. Another country where the first language is not English, and we hear Welsh when we go places, even during the tourist season. Yes, the Americans do things different, whether it is driving on the wrong side of the road, or they arm their police. But it was the same in Canada, where I first passed my driving test, and almost joined the RCMP.

The 10 Best Cities to Move to in 2015 - http://www.simplemovinglabor.com/blog/the-10-best-cities-to-move-to-in-2015#.VQXcaHY3dgs.facebook

The 10 Best Cities to Move to in 2015 – No 2 Boise. Image courtesy Bob Young

Oh wait, American-English is not the first language spoken in Idaho. It was either Coeur D’Alene, Nez Perce, Kutenai, Northern Paiute, or Shoshoni, depending on the area. Around Boise it would have been Shoshoni. So I guess we need to learn that.

And those that said Spanish, go stand in the corner. The name Boise has French origins, French-Canadian fur traders travelled the territory in the late 18th and early 19th century. Boise may be from “La rivière boisée”. And any settlers from the Iberian Peninsula of significance were the Basques. Even a Brit knows that.

Well that’s enough of the history lesson from this Brit imposter. More of course next week. But that might be totally off the subject.

Any questions?

The Candle

by

13

There was a single twinkling candle on my chocolate fudge sundae. One candle for another year older, if not a year healthier. Friday August 7th 2015 was a turning point – well it felt that way for my stomach.

It churned and squirmed along with my head as we drove through the lush green Welsh scenery, across the mountains between Harlech and Bodnant. I hadn’t felt so car sick since I was a child – not physically sick, just feeling rotten. Is this because I’m into my second childhood?

But the journey was worthwhile as the food was delicious at the Bodnant Welsh Food Centre, which is “set in the heart of the Conwy Valley and surrounded by the stunning scenery of Snowdonia”. Best part was browsing their farm shop, and being tempted to buy some tasty treats from chili chocolate to locally sourced beef sausages. What happened to the vegetarian? Disgraceful – or not?

I did get to glimpse odd bits of the scenery on the way home. I needed to, as the fictional setting for “Fates Maelstrom” is in this locality, about 10 miles south-west of Bodnant and on the edge of Snowdonia. Through the mists of car sickness, I caught sight of some crags like the one above Crag-o-Niwl, my fictional Welsh village.

There's a crag in there somewhere! Craig Bwlch y Moch poking up out of a dense forest of rampant vegetation above Tremadog. Photo: Al Leary

There’s a crag in there somewhere! Craig Bwlch y Moch poking up out of a dense forest of rampant vegetation above Tremadog. Photo: Al Leary ~ http://www.groundupclimbing.com/newsitem.asp?nsid=185

So overall it was a good birthday, despite the childhood throwback, and a day that I won’t forget.

What next then? Well other than a birthday in Idaho on August 7th 2016. That depends on the emigration process to the USA, which entails many hurdles.

That candle also threw a light on one aspect of my writing future: where this Blog goes from here.

At the moment, I manage to blog once a month, in the IWSG monthly post on the first Wednesday. However, I feel that the posts should be more regular, for instance once a week – possibly on Monday or Tuesday.

If I go to that new schedule, then I need a new theme, as my intermittent ramblings don’t come up to scratch or muster.

There are three possibilities:

white-dragon-medium

  • Inspiring writers – a weekly blog about authors that have inspired me with their writing. The post would include my favourite books by those writers. I envisage choosing a crime/mystery writer one week, such as Dick Francis or Linwood Barclay. Then a SF/Fantasy writer the next. Like Charles de Lint or Roger Zelazny. I could intersperse these posts with interviews with published writers that I am online friends with. This is the simplest option, and more akin to the A to Z Challenge, but much more laid back.
  • Boise Skyline

    Boise Skyline ~ Copyright: http://www.visitidaho.org/photos/

    Moving to the USA – a weekly blog about the process that my wife and I are going through in trying to get to Idaho, USA. It could address the hurdles as well as the breakthroughs, and the prospects that await us. This would be more of a diary with a few suggestion for others undertaking the same expedition. I’m not sure that this would work as a weekly post, but with so many hurdles it could.

  • fd6a0b9306bea4eb33c76f2f4578481b (1)Living with Multiple Sclerosis – a weekly blog that is a chance for me to explain the condition, vent about the MonSter, and perhaps help others. Much more seat-of-the-pants than the other two, and also the disability gives me good days and bad days. Of course, I can’t help mentioning the MonSter in other posts, especially the American ones. Of course, my health is a key reason behind the move.

Of course, I could intersperse these and do one per week, choosing whatever I was inspired to write. Call it Pick-n-Mix.

328a26c2f1cca551c77117d6ce3bd911

So what would you like to see me Blog about? Inspiring Writers, Moving to the USA, Living with Multiple Sclerosis, or ‘Pick-n-Mix’?

How Many Spoons Can You Juggle?

by

14

InsecureWritersSupportGroup2

As this is the first Wednesday in July, I’m talking about ‘spoons’ in my Insecure Writer’s Support Group contribution.

Most people try to juggle too many spoons, taking on too many tasks in a day. But for them the end result is probably not as bad as it is if I take on too much.

1af16c3887c35d1c9c848826339b335d

Due to my disability, I can only do one task well per day, if that. Each day I have to allocate my time and energy, or ‘spoons’.

The concept of ‘the spoon theory’ was first developed by Christine Miserandino and explained in her article far better than I can do. So read what she says, please.

Wikipedia explains that, “Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. Each activity “costs” a certain number of spoons, which might not be replaced until the next day. A person who runs out of spoons loses the ability to do anything other than rest…” https://en.wikipedia.org/wiki/Spoon_theory

Washing or showering, dressing, and answering emails, all use up the limited number of ‘spoons’ that I wake up with – on good mornings that’s twenty. And if I sleep badly then I start with fewer spoons. Some things, like online gaming and watching TV, use less spoons as my over-active brain switches down a gear.

However, writing requires far more than just one spoon, even when I’m producing garbage. I even use a few spoons at once as I try to do mundane tasks while thinking about book ideas. So yesterday, having washed, dressed, and checked the bank balance, and read my emails, I wanted to rest. Instead I used up another spoon researching ‘dictators’ during a book launch party, then burnt myself out writing this. (Then I rested before editing this piece and posting it.)

Moral: remember to pace yourself and be content with one thing done well.

But I’m not alone as I know quite a few writers that suffer with their health. And I’m sure some of you have juggling problems.

So how you manage your spoons, please?

fd6a0b9306bea4eb33c76f2f4578481b (1)

*

The first Wednesday of every month is officially Insecure Writer’s Support Group day. We post our thoughts on our own blogs. We talk about our doubts and the fears we have conquered. We discuss our struggles and triumphs. We offer a word of encouragement for others who are struggling.

Please visit others in the group and connect with other writers – aim for a dozen new people each time. 

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!
Let’s rock the neurotic writing world!

Our Twitter hashtag is #IWSG

And be sure to check out our Facebook group – https://www.facebook.com/groups/IWSG13/

We also have a t-shirt now! You can purchase it here – http://www.neatoshop.com/product/IWSG

The awesome co-hosts for this July 1 posting of the IWSG are Charity Bradford, S.A. Larsen, AJ, Tamara Narayan, Allison Gammons, and Tanya Miranda! 

Wisholute or Chaos?

by

27

InsecureWritersSupportGroup2

This is my first post of 2015 and my first Insecure Writer’s Support Group post of the year. Before I tackle the resolution chestnut, I have to introduce myself. Guess I need to update my About Me page… at some point.

Until the MonSter called multiple sclerosis swiped me down, I was a freelance equestrian journalist, and photographer. I was diagnosed with MS in January 2000 and by 2005 I retired, unable to meet any deadlines. My second wife, Juanita is now my understanding and put-upon carer, and we live in Harlech, North Wales, with a brilliant view of Snowdon.

When the MS is behaving, and my pain is calm, I write fiction. My first novel, ‘Spiral of Hooves’ was published in December 2013, and I have various projects on the go.

First Snow on Snowdon ~ Juanita Clarke

First Snow on Snowdon ~ Juanita Clarke

So why ‘wisholute’?

My writer friend Ailsa Abraham coined this clever word as an alternative to ‘resolution’. Don’t we all manage to fulfil just a fraction of our resolutions? In many cases, they are closer to ‘wishes’ driven by intent of some sort. Great for Insecure writers like me. So I don’t make them – well not often.

My simple ‘wisholute’ was “Find a Brit publisher and finish one tale…” by which I meant, my US publisher is great for my equestrian series, but being in the UK I would like to find a similar Brit publisher. And my insecurity kicks in when it comes to my next publishing step.

Do I chance that my ‘Gossamer Flames’ saga is worthy of beta readers? Are there any out there that will want to read it?

Should I focus instead on revising ‘Fates Maelstrom’ and re-locating it in North Wales?

Do I suppress the urge to write yet another first draft to put in the bottom oven to simmer?

Well, I’m taking part in the 100k in 100 days Challenge and have a loose strategy of edit-create-revise: on the days when I need to Blog/vent/rant etc I do; on the days when I get inspired to review one of the books I managed to read in 2014, I do; when I get the urge to bring new characters alive in ‘Seeking A Knife’, I do; and I intend to make those short stories ready for the brave beta readers out there, wherever.

And for my reading I am multi-tasking too – I have three books on the go, and just acquired one set locally, to get my head ready for that revision I mentioned.

Trouble is, that insecurity might be feeding the multi-tasking. Should that be chaos? Not if we are creating words and worlds for valued readers. As IWSG says, “Let’s rock the neurotic writing world!”

Dewy Cobweb ~ by Norman Hyett

Dewy Cobweb ~ by Norman Hyett

*

The awesome co-hosts for the January 7 posting of the IWSG will be Elizabeth Seckman, Lisa Buie-Collard, Chrys Fey, and Michelle Wallace!

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!

Please visit others in the group and connect with the awesome writers out there. Our Twitter hashtag is #IWSG