Disabled & chronically ill writers

Yo, ZM! Yeah, disability does add another little layer of difficulty to the NaNo experience. Last year I got voice recognition software to spare my arthritic joints. Learning to dictate rather than write was...weird. But less painful!

In any event--you're right: you've gotta find something to laugh about to get through it all. Though occasionally a good whine can be cathartic, too!

This is also my first NaNoWriMo too. I learned about it around this time last year, but was too busy being driven mad by my awful job to even really think of doing it. This year my life is exactly the opposite of what I thought it would be. It's been a horrible year to say the least. I have been ill all year & unable to walk for the most part. When I was reminded of NaNoWriMo, it was just the happiest day. I just went for it! Why not? It's something to think about outside of everything else, something to look forward to. I get to have a tangible goal & push myself in the best way. I admit I'm a little worried though about how my health will react. I get very tired, very easily & my joints get unhappy if I type for long. It doesn't dampen my enthusiasm though. I figure I'll just figure it out as I go! :D

I totally get the black humor. Bring it! lol You gotta have something to help deal with everything!

~CK

well I'm not new but I've got Chrons disease.

and my story is a little bit differant.

I first noticed nano years ago and thought it was cool but I always managed to forget it until it was too late. Then script frenzy came along and I decided to give that a go and I was even on my way to doing it when I got ill. I lost 160 pounds during that summer and was in constant pain. I managed to get back to work and it was slowly killing me. I was about 50 pounds underweight and in constant pain when I decided to do the oncoming Nano. And the story was insanely awe inspiring for me to experiance.

I was going too slow however and so during the last nine days I started over with a new story. and won. I saw that I had written 75k words and held a part time job, and I was suddenly the the sick person, but a writer who has a sickness.

It was life changing. I now participate each year and push myself further. I Do big fun scary challenges for the after Nano year round goals, and scriptfrenzy mutiple scripts each year.

I tell you when I'm rich, I will donate massive amounts to this thing, because it's made a huge differance.

So please remember you may have an illness, and it may hurt and you might not even win but you've done more than most people ever do toward writting that novel they always talk about but never do. You are a writer.

Hi everyone,

My name is Tracey. Almost two years ago (when I was 38), my life was changed by a serious, mysterious illness (I still have no official diagnosis after dozens of medical tests and appointments). It, and my recovery from it (still in progress), changed my perspective on life. I came to realize many things. One of the most important was that I did not want to die (it is clear now my condition is not life threatening but it wasn't at the beginning) with so many of my dreams not even tried. So, after going back to work after my initial 10 weeks off, and slowly realizing over the course of many months that the job, which I hated, was slowing my recovery and amplifying my medical problems, I quit in June. I am taking at least a year off to try to launch a writing career, even though I have never written anything longer than 2000 words (except academic writing for my B. Ed. and M. Ed. degrees). My hope is that I will be successful enough at it to never go back to normal work (and all that came with it) again.

As you can see, it is really important to me to succeed at this, if only for the morale boost.

Hope you all are having a 'good day' (if you are like me, your illness brings good ones and bad ones.

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba

I always loved writing, but I never appreciated being able to actually do it until I got sick. It's something I can still do, something that has stayed with me when so much else has been lost. Last year & the year before too, I finally became disciplined & tried to write everyday, especially at work. It was really hard to teach myself to write like that. I slipped in that this year, getting a block after I got sick. None of my ideas seemed to fit this new world I found myself in. Remembering how much I wanted to do NaNo has really gotten me back into the swing of things. I feel very thankful for that! :)

Good for you Tracy for what you're doing! Sending huge morale boots your way! :D

~CK

I have back problems which cause me extreme pain. Haven't been able to work since 2007 because of it, and this year I am pregnant and may have to go on bed rest soon. Hope we can all support eachother through nano and stay positive!

If there's a book you really want to read, but it hasn't been written yet, then you must write it. ~Toni Morrison

Thanks ~CK. I competely relate to your comment "when so much else has been lost". This is how I feel alot of the time. I try to concentrate on what I am slowly claiming back as I recover, but some days it is really hard. One of the main things I focus on now is that I know if I had not become ill, I would never have had the courage to try this. Succeed or not, I know I will have gained something from the effort. I hope that you will find ways to use what has happened to you to fuel some of your writing, which is what I hope for myself as well. We seem to have some thoughts in common, so if you want to chat more, Nanomail me.

Tracey

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba

Hey guys,
I like this idea of a group for us all to support each other through NaNo.
I was diagnosed with Collitis recently, after about 8 months of being sick with it (and I only got my diagnosis because my nan left my folks money in her will specifically for getting me seen - NHS sucks), and was severly underweight with it then, so I'm only just getting back on my feet and adjusting to everything and letting them mess with my meds still. This is my first year of NaNo, and I'm looking forward to it. I'm sure we can all help each other through the month xD

A Murder of Crows - A plot by Pieces

Characters killed: 15
Cups of Coffee drunk: 22
Cups of hot chocolate drunk: 35
Meals skipped: 4
Games of Mahjong played in procrastination: 54
Horror films watched whilst writing: 4

HI! I think it's a great idea to have a thread like this, maybe we can all help each other out! I'm 22, and I have had health problems all my life. I was born with cerebral palsy. I'm lucky in that I can walk, and that it hasn't hampered me mentally, but I can't walk far, and I look really stupid when I walk. I have also lately come to understand that it is causing all kinds of other problems for me.

I have a bad back, partly from the CP, and partly from carrying too much when I was at school, so I have to be really careful about where I sit, and the chairs I use.

I have had Interstitial Cystitis since I was about 7. At one point I spent 3 months sitting on the loo 24 hours a day. Because it's hard to diagnose, the doctors all thought I was faking it, and I still look back on that time with horror. I have learnt just to live with it now, but it leaves me in constant pain.

My worst problem started about two years ago now. It has been diagnosed as Functional Bowel Disorder, and I never knew anything could wreck my life so much. I have lost about 6-stone, although fortunately I was heavy to begin with, so that that's not a problem in itself. At one point I was spending about 17 hours a day on the loo being terribly ill, although limiting my diet has helped with that. I can only eat a tiny set of foods: one brand of cereal, goats milk, yoghurt and butter, honey, broccoli, courgette, butternut squash, and the occasional bit of white fish. That doesn't sound too bad until you try living on it every day for years with no variation. I am frequently horribly ill very suddenly, and I am in loads of pain. I am usually up most of the night because of it, and I only go out for a few minutes each day to get some exercise.

The FBD started just after I finished college, and I have had to put off going to University three times, which is a terrible blow to me, as I really want to continue studying.

I get really tired and I find socialising hard, as it wears me out within minutes. Also, the gastroenterologist put me on a sub-clinical dose of antidepressants which is supposed to help the gut. It didn't. Instead it left me anxious, depressed, suicidal, unable to sleep because of nightmares, panicking and miserable. Since I stopped taking them it's a lot better, but I can't shed the anxiety it threw up at me. I was coping quite well before, but now I find it a massive struggle.

I'm sorry if this sounds like a whine or a rant. I have had terrible experiences with doctors laughing at me, insulting me, disbelieving me, putting me on medications which treat the opposite symptoms to what I have etc. I second that the NHS sucks! My life has become a real struggle. Also, my Mum is my only carer, so it's really hard on her which makes me sad and angry.

I really need support and encouragement, and maybe I can offer some too. NaNo seems such a great idea (this is my first year), and even if I don't win, at least I'll feel I'm doing something worthwhile. It's great to feel part of a community too. So good luck everyone, and here's to having fun despite our problems!

Hello, all! I'm 28 and have been chronically ill with what I now know to be autonomic dysfunction since I was 22. I have a possible diagnosis of Hyper Adrenergic POTS, but am still waiting to present better on tests, which is very difficult.

I also have been fighting a chronic sinus infection since catching a virus from my two year old niece in mid-July thanks to my sister dropping her off knowing she was sick. She then laughed about it later to our faces when she realized we were sick, but that's another story that I wished ended with me smashing her with a shovel but I digress...

I tried NaNoWriMo last year and didn't make it thanks to this and life being way too hard to hold up together with all the energy it required, and not really having a true game plan before hand. This year I think I'm entering a little bit better prepared, and with less focus on other things such as my sister and the baby, making everybody's Christmas bright, my emotionally distant girlfriend, my mother, etc...

Time for me to be selfish. >:3

NaNo - 2009: Chasing Miracles - WON - {Incomplete}
NaNo - 2010: Chasing Destiny - {Plotting...}

What a great idea to bring us all together! I have chronic fatigue syndrome and lyme disease so being able to complete my novel on time will be especially difficult but I'm looking for ward to trying!

Believe! The best is yet to come!!!!

Great idea to have a group for support. I have MS and am a little concerned over making it through November. This is my first attempt but having a group with similiar struggles is going to be helpful.

Nancy

Hi Sierra,
I just want to say that I hope you don't really mean it about this being selfish! I have learned through the course of my illness, that the best thing we can do for our own healing is to put ourselves first. There is nothing wrong with that at all. If you don't take care of yourself, nobody else will. So look at it as self caring and self nurturing not selfish.

Cheers,
Tracey

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba

I'm one of those people who always try to put themselves last and who always seem to see that they're putting themselves first even if they're not even in line. XD I know that makes no sense but I'll put it this way. Even if I'm butt dragging myself around, if I have things I need to do for other people, I'll get them done. If I have things I need to do for work or for family and I'm sick or sore, I'll find a way. If it's for myself? I'll put it on the back burner. Because I'm a red shirted crew member. Expendable. XD

So to take time for myself and tell someone "no" is a strange concept I've been working on this year. People have been telling me I'm stingy and selfish more and more this year, and it hurts. All because I tell them, "I'm too tired" or "I'm too sick" or "I haven't the money because of x medical bill" because I extended so much before, that it spoiled them. They got so used to me caring for them over the top that now I've set limits they don't understand it's normal. So...now I'm the stingy selfish one.

[sigh] Well, once again, as I have been saying for years, "none of this will matter once I'm a famous writer living in a cottage in Maine..." XD

@>---'---,----
2008 - Birds of Paradise - FAIL
2009 - The Power of the Rose

NaNo - 2009: Chasing Miracles - WON - {Incomplete}
NaNo - 2010: Chasing Destiny - {Plotting...}

Hello everyone!

In 2006, the last time I seriously attempted writing, there was a group called "Spooners" based on the wonderful Spoon Theory. It is a must read for anyone with chronic illness or for anyone who knows someone with a chronic illness.

Shades of Grey, my 2006 novel, was interupted by relatively minor brain surgery to remove the tumor that was causing my Cyclical Cushing's disease. When that didn't work, I had major abdominal surgery to remove my adreanal glands. Life is ... challenging. I'm finally "better." Not "well" but better than I was. My doctors no longer fear I'm going to keel over in their offices. Always a plus.

I am gong to be a NaNo Rebel this year and finish my novel. I might hit 50K words, I may not, but just by starting I win.

I too use humor to help me through my life, with some unforseen consequences. . I was once written up for harrassing myself at work. It seems some people have no sense of humor at all.

Strength and Courage!
Crystal

2009 Changed my mind, after carfully snowflaking the story, I decided to write a new novel from whole cloth. New and shiny.

Wonderful idea, ZM - thanks for starting this group. Lets just say I can relate to a lot in this thread. I have Sjogren's syndrome (an autoimmune disease similar to Lupus) and fibromyalgia. Chronic pain, and it gets worse in the winter. My hands are worst affected. Someone here, I think it was Phoenix, suggested voice recognition software. I tried the one built into Windows Vista. It really wasn't that great. I wonder if it struggles with my Australian accent? Can anyone recommend anything better? Alas I won't be able to buy anything for some time, but maybe in the future, I could really look at that route seriously. Though I would be awfully self-conscious dictating a story in front of my wife. I like to be "alone" when I write. LOL

This is the first year the kids have all left home and I'm hoping for some selfish time at last. I think it was Sierra who talked about putting herself last. Always have - boy, do I relate. Last year I had gone through some major health issues - emergency hysterectomy before and biopsy during NaNo... they made me fight harder for what was mine - the right to write. I really want to do NaNo this year. So far I am brain-dead for ideas but I trust something will come up.

Anyway, I'm kinda brain foggy and will close, but wanted to say thanks for the venue to share!

Jane

P.S. VinesQueen - I have wondered about being a Rebel and finishing last year's NaNo. I just have this wee competitive streak that wants to win. But this is also the first time in a year I will have an excuse to claim the time to write. And I recently had ideas on how to finish that novel. So I need to really think about it...

Hello Sierra,
I will send you a Nanomail later today as I really want to talk to you some more about this.
Tracey

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba

In Jan of this year I got an official dx of fibromyalgia and while I have long suspected having it (nearly 3 or 4 years since the onset of the mysterious pain), I'm finding it's getting harder to do some things and sadly that includes the computer. I used to be able to do things at the computer for hours on end but now my hands and my back just can't take anymore. My line of work is physically demanding but that keeps me moving and forces me to move about and not just sit at home. Right now not taking anything for it cause the doctors feel that giving me any pain medication won't do me any good due to there being no physical reason to treat the pain. There been many choice words over that. On top of that I also got placed on meds to help with my severe depression (which kills the writing much faster than the pain ever has). So we will see how well this goes this year. I was okay last year, but I'm not sure about this year.

~ Ri
NaNo 2007 ~ Untitled (lost :( )
NaNo 2008 ~ Darkness' Light (won!)
NaNo 2009 ~ Darkness' Welcome (hopefully win!)

Hi Sirphebos (and any others who may have pain related issues),

Have you ever tried yoga or Pilates? I started yoga to help me with my issues about 10 months ago and it has been a great help. I started slowly with 30 minute private classes and am working up from there. I am now up to 2 @45 minutes a week. It helps with the pain symptoms but also with the mental and emotional strain of being sick and in pain every day. I recently started Pilates on the recommendation of a book I read about self treating back pain without medication. It focuses on building the strength of the abdominal and back muscles, which are not as isolated as they seem, thus reducing pain and reducing the risk of recurring trauma. I also started that with 30 minute sessions once a week about a month ago and it also seems quite helpful so far. These are just two of the non-chemical alternatives to pain meds that I use to help myself (after having lost all faith in the traditional medical community and drug companies). I also use a daily stretching routine I worked out with a physiotherapist as well as ice, heat, massage and chiropractics. I intend to try accupuncture if/when I can find a practitioner I trust. I just find these alternatives more helpful than anything any doctor ever did. (They have not even managed a diagnosis!)

I hope you find even a small kernel in there that may help.
Tracey

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba

Wow, I haven't been on the forums for a few days and am so glad to see this thread survived. Thanks so much to everyone for sharing your stories! It makes me feel very optimistic about us being able to support each other (because as November nears I'm getting more and more nervous...).

Good call! Here's a link to it, and the forums there are also a great place for support: http://www.butyoudontlooksick.com/the_spoon_theory/

Although I think I'd vote for "Spoonies" since "Spooner" makes me think of curling up with my husband. ;-D

Newly Nerfed, a place for disabled geekery.

Hi!

I'm glad to find this thread. I have type-2 Diabetes and for the last few years had a breathing problem the Dr.s couldn't diagnose. Finally a Dr ran the right test and I have Sarcoidosis which is affecting my lungs. Writing seems to be one of the few things I can do to "escape" thinking about my health problems. I'm not whining because I am determined to conquer this as much as is possible.

Anyway, this is my first NANO and I wanted to say Hello.

ZenMonkey -- bring on the black humor, sarcasm and irreverence! I think it goes with the turf. Sooner or later if you whine long enough you start growing a comedy routine. It's like that brilliant comedian Christopher Titus said: "I want to hear your pain. Just tell it in joke form, okay?"

No, seriously, chronic means same-old same-old. You wind up as stoic as an ancient Roman until you get a freaking cold. Then it's whine time! Aaaaaargh never mind the fibromyalgia, never mind right side hemi-hypoplasia, never mind stress induced asthma, scoliosis, arthritis (thankfully more spine than hands), a lifetime of sports injuries trying to keep up with the abled ... I'm gonna throw up, somebody pamper me! Hack wheeze whine drip SNIVEL!!!

There is a Bug going around in our household. Everybody has it. My son in law is an angel. He and my daughter are fixing herbal potions based on rum, butter, brown sugar and various useful medicinal plants that they understand and I consult them on. This has me flying higher than a kite ignoring my symptoms. Not my normal symptoms, just sitting still and taking all my meds is good enough for that. I mean the horrible unendurable symptoms of the different-feeling body aches, nausea, sniffles, SNIFFLES and sore throat from the Bug.

It's a cute.

No, my cat is a cute. It's an acute disease. It could be over with yesterday if I had my way.

I started doing Nanowrimo in 2000 and I only missed one year, in 2002 I was sick as the proverbial dog from malnutrition and bad living and overexertion, so I wound up with pretty much all of November on bed rest and didn't actually start my novel till the 25th. I made a manful effort at it but only got 25,000 words or so that year. All the other years I have won and downloaded my happy certificate and shoved my trunk novels into the bulging file of To Be Edited till I got done with all the things that needed to be done getting me diagnosed with all the physical things that were not, any of them, psychological.

Okay, I do still have a touch of PTSD... OMG was that patronizing noise a therapist? Help! Someone bring documentation, fast! Someone healthy explain that no, I'm not asking for special emotional attention because I need a cushy chair, I need a cushy chair because my back's not shaped for using hard chairs and I don't like resting up for four days after appointments, not to mention not being coherent during them.

Seriously, life is a lot better for me now that I know what it is. I am not depressed. I've had most of that lineup all my life, as far back as I can remember, the skeletal crookedness is the right side hemi-hypoplasia. That means that I'm two different sizes, five five on my tall side and almost as strong as a normal, five four and shrinking on my weak side and almost as strong as my cat on a good day. If I stand up straight, it's hilarious, it's like Monty Python funny walks. I keel over at about a ten or fifteen degree angle and it looks like some loony routine.

I flunked gym. I was the only kid in the world that flunked gym. Nobody flunks gym. How can you flunk gym of all things? Dummy! Yet, I flunked gym and flunked every single one of the President's Physical Fitness Tests. That's right. I didn't qualify as a Fit and Healthy American. Tough for America, they got stuck with me anyway.

Some of you do realize what a wonderful joy in life it is to finally get maintenance pain medication and get your brain handed back to you after years of thinking that most people, who whine all the time about their aches and pains, are also struggling along the border of suicidal level-10 agony on a bad day and you're just a wussy for crying. I mean, I'm a guy and I come from that generation where Men Don't Cry. Wussseeeeeee!

Also Spazz, Retard, Gimp, Lurch, Igor... hey, the kids in my grade school diagnosed all of it right off the bat. Maybe if they got first and second graders as diagnosticians the whole medical system would improve. Or maybe what I needed was to drag in a healthy second grader when I went to the pediatrician and let that kid mimic how I walk and move and do things so the doctor can see the symptoms.

I did not figure out this blinding satori about my life that I'm physically disabled until I was in my forties.

Denial is a wonderful thing, innit? Miraculous human ability that no matter how bad things get, if you're human, you can ignore it and bumble through life as if you could walk and think and talk like anyone else! Go fig!

Anyway, my daughter's cold potions are tons better than anything you can get at Walgreens or Rite Aid. She puts Captain Morgan rum in them, anise, cinnamon, ginger, all these good herbs, lots of honey for the immune system and the sweet-craving whiny inner child, good rich dark brown sugar, boils it all to a pitch and then my son in law does the same thing with his herbal recipe for beef soup, which makes it as potent as chicken soup with an exciting flavor of red meat involved that feels like it flows right into my veins. That poor man is dragging around the kitchen moving like I do on a good day and I really feel for him, because he's not used to being sick like that and he's actually patient, he's actually a saint about it, never complains, a really good man. I love 'em both.

I love my grandkids too, little five year old Sascha who gets up at four thirty in the morning to ask if it's time to go to school yet, she's beautiful. Three year old Gabriel who's practicing for a Screampunk musical career, I think he's reinventing punk, that boy's got lungs on him that should put him in the Met.

And I love my cat. Ari is a longhair colorpoint, a Street Siamese with a black face, black ears, chocolate color tail, shaggy coat now coming in for the winter, fifteen pounds of cuddle fuzz who sheds Cat Hairs of Inspiration on every novelist I know. He is the real secret to my incredible word counts. I wear black all the time so those pale fluffy cat hairs show up on it and type like a virtuoso using the Dvorak keyboard. This also lets me reach over the lap cat to continue to type while he's snuggling and purring. When it gets cold out, he's glued to my hip and I love it.

Live cats beat hot water bottles any day. Pet the cat. It's good for the soul and good for the word count. Your mileage may vary, especially if you're a dog or horse person.

Having been freed from the necessity to struggle for a living keeping up with people who can work all five days in a week no matter what the weather's doing, my Nanowrimo schedule is limited only by the weather and my meds. I love my doctor. I hate most doctors but my current doctor rocks. In and out in ten minutes, signed off on all my prescriptions, blunt as a brick to the head, straight-up man. He's just too cool for words. Now if I can find a dentist with his attitude and a lifetime supply of nitrous oxide, I'm home free.

Did I mention I was an abject coward wussseeeee when it comes to dentistry? Gotta have both the nitrous and the novocain and preferably the silly dentist that tells a lot of bad jokes to keep your mind off your mouth getting mined. Some things that are acute are a lot worse than the chronic. Toothache needs codeine. Fibro just needs tramadol, a snuggly cat and a Dvorak-reset keyboard under my paws.

I type and think at something well over 100 words a minute.

Despite a complete lifetime lack of any athletic prowess at anything, I have discovered my sport in novel writing. If I work on the book for about an hour or two, I go into that sustained-marathon state of intense concentration that people who run or jog or walk for miles get for running or jogging or walking for miles. That's when the endorphins hit.

That's when I do two-chapter days and forget my meds because I'm self medicating by way of assorted adult fairytales, fantasy novels and science fiction that's good enough to keep my mind off reality. Really good because they are exactly my flavor. All of my favorite things thrown in as fast as I can and never mind the grammar, punctuation is something to deal with in the edits, all the words are there but some of them need to be cut when it's done.

I love Nanowrimo. This is my favorite time of year. Happy to meet all of you folks. I do hang out on butyoudontlooksick.com where I am also robertsloan2 and so I'm an official Spoonie, the site is great. Christine is doing the Lupus Walk thing again, that's current news on that front.

I have also participated in the 3 Day Novel Contest every year since 2000, unofficially except for the first time and this year. This year I am getting up on my butt and moving on taking my writing seriously. So the first thing I did was pay the fee on that one, print out this year's thriller and ship it off. I made a promise to myself to do five submissions in 2009, which can include short stories but should include at least one novel. My most-edited novel is "Curse of Vaumuru" which used to be called "The Hunt" and was one of my two 2004 Nanowrimo novels.

But in November I can get back to the happy part and just make up the story. Ari sheds his Cat Hairs of Information upon you all, may your symptoms be light and your hours of noveling be long and joyous, may the endorphins kick in early and your assorted body parts function better than ever this year during the marathon.

I think we should total up our winners at the end of this year's run, because I might bet on chronics having an edge in something like this -- the edge of patience and stubbornness, the edge of pushing the edge no matter what gets in our way because otherwise we get no life. We are the champions. We're going to rock this thing. This is our sport.

Nanowrimo 2009 Double My Best - Four 80k novels!
Magic in the Streets 82,964
Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

Join SFFmuse!

Sierra, read Chris Baty on the subject. Seriously. We're writers. We get to be selfish. We get to be temperamental divas. We are novelists, the snob factor in that is a wonderful way to deal with obnoxious relatives.

Keep your priorities straight. When it's your novel versus their feelings, the novel should win every time. Consider the cat. Consider the native coolness of any cat. A cat knows he is selfish but this is no insult, it's just the natural state of being for a cat. Any moment of affection or appreciation is a genuine gift from cat to me -- honest, real and powerful. A cat never fell for a guilt trip in its life.

Everything important in life I learned from my cat. The biggest thing is that annoying people and their emotional demands belong way down at the bottom of the priority list, while my novelwriting belongs on top because that's the thing I set out to do in my life and it's one of the few great things in life that would be great things no matter who did them, that's in reach. I may not ever be able to boat up the Amazon or climb Everest or hike the jungles of southeast Asia looking for rare lizards.

But I can make up a good long story as fast as I can type it and that's a real achievement for anyone who can do it. If people around you try to keep you emotionally dependent on them, disengage fast. Your writing is the thing that is you. It comes from within. Only you can write your novel. No one else on this planet could even understand it until you've created it. Your novel is the unique one-and-only novel of its kind anywhere. Your style is unique and wonderful, even if you're a beginner it's inherent in your first efforts and only becomes more visible with polishing.

So November becomes the time of year when you have this wonderful ironclad excuse to tell them all to sod off and leave you alone, you are Writing. You are being productive and doing something most of the abled look at as if you were going nuts bungee jumping off the Golden Gate Bridge.

Inevitably when someone has real needs they get called selfish. The one thing I've found in all my years is that any person willing to call someone else selfish has just shown that he or she is the selfish one. Inconvenienced by your inability or unwillingness to do or feel or be what they want, they want to distort all of reality itself to get their way and could care less how much pain or effort it takes you to do that "easy" "little" thing that nobody else would have any problem with.

When someone says "I'm being selfish" it's usually a reflection of too many people making too many unreasonable demands over too many years. Your novel is much more important than people-pleasing -- you owe it to your characters and your fans to get it written, edited and out in print whether you self publish or send it in to publishers.

The shovel is a good idea. Some people are a real danger to others. Laughing in your face about it is a danger sign in itself, that kind of carelessness can be ruinous. But maybe a pitcher of cold water with ice in it in her face would be a better wake-up call.

robertsloan2 is leading a SFFmuse membership drive in 2009 and writing and editing LOTS this November! Ari Cat sheds his infamous Cat Hairs of Inspiration on you

Nanowrimo 2009 Double My Best - Four 80k novels!
Magic in the Streets 82,964
Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

Join SFFmuse!

Absolutely. None of this will matter when you're a famous writer living in a cabin in Maine except that learning to say No will shake off all the takers and users and folks with their hand out for your time and money and energy. They are the selfish ones. Stop putting yourself last. Listen to your cat.

The people who are still your friends after you learn to say no are your real friends. Real friends and loved ones are sensitive enough to recognize that if you're broke, you're broke and can't afford to help them out with something. Commiseration is about the only thing they'd actually expect. Not sympathy-pity, commiseration, gee it stinks to be broke.

There is an enormous well of shaming that goes on with chronic illness or disability and it comes from that miscommunication. From their view, a little money or a little time or a minor chore is a little thing. From reality view, that's an enormous demand on a par with asking them to sell their house and their car, take on a second job, give up eating out, maybe take up a third job on weekends all to help you out on something minor that you could've done without anyway.

Being a tightwad is something that grows out of adversity, stingy is not a bad thing in itself. Learning to squeeze more bang out of every buck you get results in more luxury and less worries in life. Maybe start applying it to what these people want, if they feel unappreciated without presents, get them a two dollar trinket from a thrift store, something used but showing some real observation of what they actually like. Watch their little heads spin. They won't get it.

These people are probably all bean counting and nature did not hand you a full sack of beans. That's reality. Their demands are unreasonable whether they know it or not. Someone who would bring over a sick child knowing you have a compromised immune system is putting her convenience ahead of your survival. Stop and think about that. If it was a nastier bug you could be dying of pneumonia in the hospital from that inconsiderate action -- it is a dangerous big deal.

When it's just the luxuries in life, whether you show up for a party or a get-together, whether you have time for volunteering on something, whether you have time to spend doing whatever non-necessary activity floats their boat -- they are the ones being selfish. Not you. Be real. Just be real with the world and life gets a lot easier.

This is the sort of thing that makes me grateful to have the skeletal problems and fibro because I did learn to manage stress and to cut past a lot of this BS. The mind games that most abled people take as "normal" are so extreme that some of them lose their entire lives to misery because of no more than social BS. You can pick your friends, you can't pick your friend's nose.

So learning to say No becomes this social filter to knock out the real relatives and friends you have, who actually care about you and reciprocate and are observant, from the dangerously callous inconsiderate people who run over everyone around them but it doesn't hamper the abled as much -- or they don't think it does till they wind up 90 hour a week workaholics struggling with the bills because they're supporting half the people in their family and half their friends.

Take care of yourself. No one else understands your life the way you do, or recognizes your real needs unless you communicate them. Ari sheds cat hairs of inspiration on you. He also gives free lessons in Cat Fu.

Nanowrimo 2009 Double My Best - Four 80k novels!
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Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

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Nah, this doesn't so much sound like a whine as a consciousness-raising experience. I've had that whole run of disbelieving doctors and medics. Found out from my pharmacy technician daughter that no, doctors literally don't listen to sick people at all or take anything they say as real. If a misdiagnosis gets down on paper they'll put that ahead of even their own senses most of the time, TV to the contrary.

I finally started getting decent medical care when my undisabled daughter started going in with me to explain everything. Because she's not sick and not in pain, they believe her and take it for granted. She knows medic-speek too.

"Discomfort" is anything wrong with you, including suicidal levels of pain but also suicidal levels of itching or twitching or other sensory symptoms. It is not a patronizing dismissal of how bad it is. It's a broad general category within which a variety of different pains and problems get lumped and has nothing to do with severity.

"Short of breath" includes the complete inability to breathe and gets listed as cause of death sometimes. It doesn't just mean panting a little instead of choking with pneumonia.

They are more likely to listen to the numbers when you're describing pain than to any description in words. They're at least used to the pain scale of one to ten. Of course I've only had a few "zero" days in my life to compare so that's a bit freaky to realize some people do spend most of their lives without any pain going on, but that's what it is.

I may write a whole article on that sometime. Anyway you're not whiny at all. Ari purrs at you. Your chronic problems sound a lot nastier than mine, ugh, living in the bathroom -- I get some digestive problems sometimes but if I had it for three months running I'd be beating my head on the walls.

You might consider using an Alphasmart or a netbook, something small enough to bring in there with you during November if it flares -- at least in the bathroom you'd be left alone by other people.

Nanowrimo 2009 Double My Best - Four 80k novels!
Magic in the Streets 82,964
Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

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You will. You sound dedicated to me. This is a big thing. The morale boost is the morale boost of an open door. Writing for a living is this wonderful way of life that would drive a lot of abled people crazy. There's no set hours. There's no boss scheduling your time. Your income rises and falls at random intervals and you're self employed having to make every decision in life for yourself, day after day, and then what you do every day to make a living is actually fun and enjoyable.

Writing the first novel is tough. Writing the second gets a little easier. Writing the fifth it starts going toward a pleasingly large project that's a solid boost to self esteem, a known path, a thing you know how to do as easily as a good mechanic could pull the engine out of a truck and replace it. Big deal yes, until you know how. It does not take getting up on Monday mornings or getting screamed at or toadying to supervisors.

You are so much on the right track. Yay for your leaving the bad job. Life's way too short to waste any of it on bad jobs. I think you're going to make it this year.

Nanowrimo 2009 Double My Best - Four 80k novels!
Magic in the Streets 82,964
Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

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Now that is a massive challenge. Good luck to you on both the baby and the novel, that's ultimate creativity. Hope you have a laptop or netbook to bring to bed with you, writing makes bedrest a lot saner.

Nanowrimo 2009 Double My Best - Four 80k novels!
Magic in the Streets 82,964
Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

Join SFFmuse!

I'm seeing red over this one. Have you been to an actual pain clinic? Medication isn't the only solution but it makes an enormous difference in life. It's sometimes a bit of a roller coaster finding the right one. I lucked on my first go with a pain specialist and got the right prescription for my system, after having gone through a variety of other meds from other doctors that first choice is still the best for maintenance.

"No physical reason to treat the pain" ignores the fact that pain itself impairs you. Reduces function and causes fatigue in itself. Can cause all kinds of long term stress and health problems if it goes untreated. Your doctors are ignorant. Pain clinic doctors are not. I answered half a dozen other posts scrolling back up looking for yours because I read it and lost it in the fog (yeah I have fibro too) and wanted to say "Get thee to a pain clinic."

They will not humiliate you. They will take it seriously. Unfortunately with the way things are, it's only specialists that comprehend that chronic pain is a major problem in itself and causes a ton of other problems. Pain management has improved my cognition, my mobility, my body energy, my entire quality of life. I still can't work but I can write -- and I can do the things that matter to me, I can take on a lot more of my own self care with it than without it.

They're so quick to deal out antidepression meds when those do absolutely nothing for physical pain. I've been that route too. They don't elevate mood if the problem is physical pain. But if the "depression" lifts when you take so much as an ibuprofen, the problem is physical pain, that simple. Pain clinics understand this and help with it. They're also good with a variety of other interesting modalities. Some people I know have gotten biofeedback devices to help control migraines, one woman I knew had great benefits from that. Others have gotten physical therapy that helped, others have used acupuncture or acupressure.

Oh yeah, even if you might have to pay out of pocket, from what I've heard the alternative practitioners are a lot more respectful and less humiliating than your standard primary care physician faced with diagnosing something that has the reputation of "Welfare cheat and drug abuser" stamped all over it. What I take is nonaddictive and has all the entertainment value of an aspirin -- and about ten times the punch for knocking down my symptoms. It's over the counter in Europe and is the first drug pain clinic doctors recommend because it's so safe, you'd need to eat about five times as many to kill yourself with it as with an aspirin. Tramadol aka Ultram if it's the brand name version. It's controlled "Because it's easily abused" because it has no side effects and isn't addictive. But also it gives no high, so they're off their nut about it.

Common sense though -- I refused to consider any opiates because I know that over time they gradually lose their effectiveness. The body builds up a tolerance, you need to take more and more, the last thing I need is a monkey on my back along with the chronic pain. That attitude might be part of why my pain doctor took me so seriously the first time I went in. Codeine is for toothache and other acute things, maybe surgery or a broken bone. Never for anything longterm. I stay out of the way of the dangerous drugs because I do not want to get hooked, it's a good balance to use the Tramadol and all of my stress reduction/meditation/writing as meditation techniques to beat it down.

Oh yeah, concentrating on your novel and pushing past the point it's hard will actually create an endorphin high similar to a runner's high. So you might consider using dragonspeak or some other dictation program if your hands limit your ability to type for long periods of time. I feel for you on that. I would go out of my mind if it was in my hands.

Nanowrimo 2009 Double My Best - Four 80k novels!
Magic in the Streets 82,964
Greenwood Road 84,709
Medicine Show 75,978
Greenwood Gates 48,338

Join SFFmuse!

(Twin_Writer) Nancy - It is ironically nice to know that I am not the only one going through this crazy flight and having MS at the same time. I was diagnosed in 2004 and continued Nano each year - just listen to your body and you will get to the 50,000 mark and beyond. I write a lot early in the morning (just after the coffee kicks in) when I still can function without any problems and I hit it again just before I go to bed adn I am able to bag a daily word count. If you want - add me as a buddy and we can keep each other going.

Della
"Writer by passion - insane by choice"
"May the Dragons watch over and protect you until we meet again"

Thanks Robert. That is one of the big lessons I learned from my illness and I am so lucky to have a supportive spouse who understands that I needed to do this. It is scary to be without a job and without security, but not as scary as the idea of not living the life I want, and of not only being chronically ill but chronically unfulfilled. Even if I don't 'win' this year, I know I am trying to make my dream come true and will also learn some things in the process, so it will be a 'win' either way. And good luck to you as well. It seems you have alot of insights to offer others on this board.

I get knocked down, but I get up again. You're never gonna keep me down. - Chumbawamba