M.E. The misunderstood.

I decided to let you all in on a little known fact about me. It is not something I tend to crow about, because I don’t want it to define me. However, it has come to light that a friend of mine may have the same illness as me, Myalgic Encephalomyelitis (M.E.), (yes, it is a real illness, I know, I have it), and knew nothing about it. Apparently, their doctor didn’t think of it as a possibility either, (many doctors still don’t, unfortunately).

So many misconceptions have arisen over the years regarding this illness, and I would like to take a stand an quash those, at least within my own circle. Perhaps, it might help someone else going through extreme and unwarranted fatigue (not aided by rest or sleep), sore or weak muscles and joints, poor concentration and short term memory, and flu-like symptoms.

So. For those with any misconceptions/questions I have included a link in this post about M.E. AKA C.F.S. (Chronic Fatigue Syndrome) in the US. I don’t particularly like the term C.F.S.. I find it demeaning, personally, because it implies that fatigue is all there is to M.E. IT IS NOT. Here is the best and most correct information about the illness I have found so far.

ME Association of the UK

If you, like my friend, feel after reading that you can relate to this information more than you would like to, please, go and talk to your doctor about it. For they are the only ones who can diagnose it and set you on a path of self management, (since there is no cure and no drugs proven to work for M.E.), and pacing yourself. Some doctors are still living in the dark ages, and refuse to recognize this illness. I had 11 years of doctors telling me, “It’s all in your head”, etc. But I was still sick, so persisted, and glad I did.

The thing is. If you don’t know you have this, and persist in “working through the pain”, you will only get worse. Working through the pain is the last thing an M.E. patient should do. I learned that the hard way! Partly, it wasn’t my fault. I had doctors telling me to “Get over it, and work through it.” But, partly it was my own fault. Even after a diagnosis, it is very hard to break the habit of a lifetime and stop “working through it”.

It took many years to get a handle on this, and even then, sometimes nothing helps and it flares up, no matter what you do. You have to learn your limits and stay within them. The problem being, those limits are constantly changing. What you could get away with yesterday may not be possible today, and visa versa.

I hasten to add, I am currently in a remission. Have been for a few years, happily. That doesn’t mean I am “over it”. That is a common mistake many make when going through a “Less poorly time”. They think they are fully better and resume their former activities, only to go right back to being ill again from overdoing it. Again, I am familiar with this cycle of events.

M.E. doesn’t go away. One may “feel better”, but that doesn’t mean it’s gone. We simply are having a better period, and long may that last! But we do have to continue caution with everything we do, not overdo it. Always be aware that it can strike back at any given moment and often of its own accord.

I will finish with one of the most important things to remember. M.E. sufferers do NOT want your sympathy. We need your UNDERSTANDING. The link I included will, I hope, go some way way toward that.

Namaste. :)

It Was A Dark And Stormy Night

It was a dark and stormy night snoopy

Sunday was a productive and enjoyable day.

I began with work on my book. I was writing it from the male, American character’s point of view. But, although I know the character well, I appeared to have some difficulty internalising him on the page. This might be because I am neither male, (looks to check but arrives at the same conclusion), nor American, (until my recent naturalization process came to a satisfactory close). So I decided to write it in “That English Lady’s” point of view. Hopefully, I am doing a better job internalising her. I also streamlined the storyline, somewhat, so that it no longer contains certain aspects. Hopefully, this will help too. I shall know if that is the case, come Thursday at critique group.

Next, house cleaning with hubby. We share the work, and try to limit this task to once a week—usually the weekend, at some point—since I always have a lot to do regarding writing. Whether it’s actual writing, keeping up with my social media platform, blogging, or sometimes all three. The life of a writer is not—and should never be—idle. I do some form of my work every day…even if I am just thinking up a way to move the story forward, at times.

After a good working day, it’s always nice to relax with something that does not call for any concentration. At all. We like to play on the Wii system. Usually, Frisbee golf, 10 pin bowling, or regular golf wins out. No thought process required, and we get to move about a bit more. I sit in a writer’s chair for the majority of my days, so it’s nice to move around a little when the working day is done. It’s either that or the treadmill—which would you choose? In any case, the treadmill is Loki’s excersise toy of choice.

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Sunday is our day to catch up on the shows we watch, during the most magnificent thunder and lightning storms I have experienced to date this year.

Once upon a time, Game of Thrones, and Believe. All three get better and better each week. After the latter, we found the movie “Formula 51”. Hell yes, I had to watch that! It’s always a hoot. I particularly love the bit when Elmo gives the skinheads the red pills…just deserts ensue, and…wait…SPOILERS! If you haven’t seen that movie, I urge you to do so. You will not be disappointed.

After that, it was getting late, so we searched for some bedtime viewing.

The Exorcist fit the bill perfectly. I have seen it many, many times before, but never tire of it. Such a classic horror movie. Always a good movie to watch at night, with the lights turned WAY down, during the last calls of a humungous, kick-arse storm. *Evil laugh* Our own lights even flickered, as the do in the movie. Creepy :-D

The only thing I did not get enough time/wakefulness to do (mainly because I chose The Exorcist instead, on this occasion), was to read before sleeping. Tonight, I shall rectify that.

Also tonight, don’t forget the PINK MOON during the early hours.

pink moon

I believe it is supposed to happen between 2 am and 4 am Eastern time. (So, I guess between 1 and 3 for us here in Central time).

The Blue Door Trilogy, by Alice White is available on Kindle and paperback, at Amazon.

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And on paperback at Arkansas Authors Bookstore and Barnes & Noble.

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First Theatre Trip. For FRIDAY FICTIONEERS.

Studio Lights from Kent

Photograph: copyright-Kent Bonham

FRIDAY FICTIONEERS

Word Count: 100

FIRST THEATRE TRIP

© Alice White 2014

I let gravity drop me to the seat, and wait.

Music washes over me, like a dream.

Overture. Act one. Man in the mirror, so forlorn, so tortured.

Compassion grips me. I cry.

A chandelier falls.

In the interval, an obscure whisper. I turn.

No one there. I disregard the voice I must have dreamt, and sip my wine.

Again, he calls me softly by name. Again, I turn. Again, no one there.

“I am your angel. Come to your angel.”

I didn’t dream that, did I?

“Who are you?” I ask.

“The Phantom of the Opera is here, inside your mind”

UNSEEN NIGHTMARE for Friday Fictioneers

Copyright-John Nixon

Photo Copyright-John Nixon

Genre – Thriller/Horror/Suspense

Word Count – 100

UNSEEN NIGHTMARE

© Alice White 2014

A clammy sense of doom.

His body stiffened.

Frozen.

Rooted by unseen shackles.

He grabbed her hand. Resolved to hang on, whatever happened.

Thunder stopped mere feet away.

Something breathed. Snorted.

Fear rose inside him. Stuck in his throat. Stifled the scream that terror induced, but did not allow to escape.

Probably just as well.

Flight? Not an option. Whatever stood behind him would surely stem that urge instantly.

Fight? No. Foolhardy. The thing was big, if those thunderous stomps were anything to go by. Assuming those belonged to this unseen nightmare.

Its breath blustered against his neck.

A Jeep, a burger, shopping and a nice house

We just had a wonderful afternoon in town, just shooting around in our gorgeous Jeep in the sunshine, ending with a little grocery shopping.

How can that be wonderful?

You may well ask.

We went to Marvin’s, a completely different experience to Wal-Mart, and all together more relaxing. I bought part one and part two of Stephen King’s “Under The Dome”. It looked interesting and apparently has an Iraq war veteran in it. Since the main character in the book I am currently writing is also an Iraq war veteran, it struck a chord :)

I shall place both books on the bottom of the VERY long list of books I have yet to read…

We had lunch at Backyard Burgers. If any of you live in NW Arkansas and have never been there I suggest you give them a try. Their burgers are to die for.

On the way home, Huey made sure we drove past some of my favourite houses en route. I love our house, of course, but that doesn’t stop me admiring others too :) I particularly have a soft spot for this one and always have had. I love the style. SANYO DIGITAL CAMERA

Arkansas Authors Book Store

My books are now in Arkansas Authors book store.

Check them out on the links below, where you can purchase them via Amazon Kindle and Barnes & Noble.

The Blue Door

Beyond The Blue Door

Return To The Blue Door

Twisted Labyrinth (Erik’s Adventures)