Why I refuse to hide the reality of my health from my social media accounts

As an indie author, I’ve been asked why I don’t keep my health separate from my work. Why I choose to talk about it so openly on twitter, on my personal facebook, and on my blog. Here’s the reason:

I CAN.

It’s really that simple. There are thousands of people, actually, millions of people, out there, across the world, who choose not to speak about their pain because it has been drummed into them by society that they shouldn’t. They feel guilty when they tell their loved ones that they struggled to get out of bed on a morning. They feel like admitting that they can’t do the things their friend suggests doing on a weekend or evening means they are a bad person and failing as a human being. When their child wants to go and play at a certain place and they have to say no, not today, it makes them feel like they are the worst parent in the world. I choose to tell them that they are not alone. They are not the only one in pain and it is okay to say no.

I haven’t yet included my disabilities or my health conditions in my fictional worlds. I choose to focus on my sexuality and gender instead. But that doesn’t mean it isn’t far from my mind that one day I might write a book about a teenager with ASD or SPD. That I might choose to have a mother or an aunt with Fibromyalgia, or a kid that so happens to have Irlen Syndrome. Whilst I wait for those characters to come to me, I will shout from the rooftops on my social media accounts about the way in which each of my conditions makes my daily life different. Because if it means that one person knows they aren’t alone because of my post, or someone can understand a loved one better, then I’ve done something right.

Recently I’ve seen so many posts about how we as Chronic Pain sufferers keep so much bottled in, because we feel like burdens and we are scared of losing those close to us. Well you know what? I won’t do it. If someone asks me how I feel, they need to be prepared for an answer that involves the truth. As an Aspie, I don’t believe in sugar coating things. I never have. If you were to ask me today, I’d tell you that I have my usual aches and pains but that my left wrist and shoulder in particular are acting up. The wrist feels like  it’s in a vice and if I didn’t know better I would say someone stuck a knife up and under the shoulder blade. But I’d also tell you it’s a better day than yesterday, and that I’m looking forward to next weekend when I get to see loved ones again. My PTSD, anxiety and depression are being kept, mostly, at bay, and I’m happily working on various creative projects.

We are, as a society, socially conditioned to apologise for our negative feelings. I’ve found myself doing it too. An apology for posts where I feel down and low, for example. But I’ve decided I’m stopping that. I won’t apologise for my feelings. I will happily talk them through with you. I am willing to understand why you may think that perhaps you would feel differently given the same circumstances, however, I will not accept being told that my feelings are wrong, and I will never tell you that your feelings are wrong. Feelings, like pain levels, are individual, and therefore, cannot be judged to be right or wrong.

So when you see my posts about my feelings, my pain levels, how my disabilities and illnesses are shifting my day, don’t just scroll by with a roll of the eyes. Remember, that someone, somewhere, may need the brutal honesty of that post to remind them that they are not alone.

Two eBooks for £5 and brand new covers!

Ebook special offer.jpg

eBook offer time!

To celebrate the release of the new covers for The Lunegosse Tales, I’m giving you the chance to get both The Search for Lana and The Journey Home in eBook format for just £5. That’s a saving of £1.98 in total. All you have to do to take advantage of the offer is drop me an email at nalebrunauthor@gmail.com, with the title eBook offer, advising your preferred format, then pop your payment over to me via PayPal. Once I’ve received your order and payment, I’ll email across your ebooks in your preferred format.

Available formats are as follows:
PDF, epub, mobi (Kindle), lrf, pdb, and txt

Offer ends 31st March 2017

  

Let me know what you think of the new covers! Merchandise related to both of them can be purchased from my Redbubble Store.

WANTED – REVIEWERS, BLOGGERS, BLURBS, SOCIAL MEDIA SHARES

I’ve tried this before, but I’m throwing it out there again. And this time I’m going to throw some dates out there too. I would like some help and I would like to get my books, and this time my Redbubble accounts, out across the Internet. I want people to know that my social media accounts exist, and I’d like people to help me promote my work. In return, I’ll give you shout outs with your social media, I’ll help you to promote your creative endeavours, and I’ll run book reviews/site reviews for you.

Here’s what I’m currently looking for:

People to review The Search for Lana and The Journey Home – reviewers can review one or both of these books and will be provided with ebook formats to be able to do so.

Blurbs for the above books as well. Again ebook formats will be provided.

I’d like reviews and blurbs for these no later than the end of May. Reviews should be posted to Amazon, Smashwords, and any other online retailer you use where the books are available, I can provide you with links if you request them. Blurbs should be emailed directly to me.

Later this year I’ll be looking for reviewers and blurbs for The Stolen Generation, if you want to sign up for that, please let me know and I’ll email you your copy nearer the time with dates I need the review or blurb by.

For the Redbubble sites, one is the merchandise site for my books, and the other is more general designs. I’m looking for people who are willing to help me share them across social media and spread the word, helping me to get them out there (and hopefully earn a little bit of money from them). I’d also appreciate it if you could do the same with my author pages on Twitter and Facebook and help me advertise my books with retweets and shares.

As I said earlier, I’m willing to provide like for like services for you too. Be that reviews or shares.

If you’re willing to help me, you can contact me by emailing me at nalebrunauthor@gmail.com

Dearest Maman, My Darling Mum,

61 isn’t that old. Not by today’s standards. In fact, for women, the age of retirement is no longer 60, it now matches the age of retirement for men. We often think that we have all the time in the world. And most of us don’t think of our own mortality until much later in life. I’ve thought about mine daily for as long as I can remember. Mostly because I’ve always had a death sentence over my head thanks to my heart condition. What I never thought about was your mortality. I never questioned that my mother would be there to watch me grow. Never asked if you would be there to watch my children grow up, if I a) lived long enough to have them, or b) decided to have them. I never worried about you being there for my graduation, or my wedding. Never pondered if you would be there to talk to about the myriad of things women talk to their mothers about. Not even when the M.E. and the Fibromyalgia left you exhausted and sat in your chair and me a teenager carer. I never ever questioned that you would just always be there. Even with everything he put us through, I still didn’t worry that you would be anything other than present.

But tomorrow, on what should have been your 61st birthday, like so many birthdays before, you won’t be there. In May it’ll be 16 years since I woke to that phone call that changed my life, the one that still feels as unreal as it did that day. No 18 year old should hear the words “Your mum died last night.” echo down the phone. The weight of them still sits heavily on my chest, as if an elephant is trying to cause my asthma to stir. It weighs on my arms and my legs, causing my own Fibro pains to shoot through me and burn at my muscles. There’s a hole in my heart that’s as small as you but as large as your heart. You may have only been 4 ft 11, but you had a heart that was 100 feet tall. And all of my friends who knew you whilst we were growing up would vouch for that. They all called you their second mum.

There’s not a day goes past that I don’t think of you. And I don’t think there will ever be a day that goes by that I don’t want to talk to you on the phone, or just hear you singing along to one of your CDs, just one last time. You may have been the most tone deaf person I have ever met, but the joy you had in singing made it music to my ears. I hope that Grandad will be celebrating with you tomorrow. I know you’ll both be driving each other crazy up there. But I also know the amount of love and affection you had for each other in life, behind the bravado. And I know that Uncle Tim will be looking out for his precious little sister. I often feel like Lee and I were robbed of our mother way too soon, but then I remember, we were so very blessed to have you in our lives for as long as we did. Goddess gave us someone special as a mum when She gave us you, because She gave us someone who wanted nothing more than to have children. And whilst you and I fought like cat and dog during my teenage years, and we both made mistakes along the way, I always knew, as I know now, your love for me is stronger than anything else. It’s why you’ve made sure that I have love in my life now that you’re gone.

I miss you, Mum. I always will. But I hope you know, I’m doing okay. And I’m so grateful that I’m loved by the people I have in my life whose unconditional love reminds me of yours.

Your Longed For Firstborn

xoxoxoxo

Channelling my inner Sci-Fi Badass

WARNING – THIS POST CONTAINS STRONGER LANGUAGE THAN MOST OF MY POSTS USUALLY DO, SO IF YOU’RE OFFENDED BY THE USE OF STRONG LANGUAGE/DON’T WANT YOUR KIDS READING IT. CLOSE THE POST NOW.

Newsflash people, I’m in a wheelchair, I have physical and neurological disabilities and conditions. This doesn’t mean that I can’t communicate, and it certainly doesn’t mean I’m any less entitled to breathe or be on this planet than you. Furthermore, if you’re going to park your car in the way of my wheelchair and stare at me like I’m trying to be entitled when I tell you off for parking on a goddamn pavement and pushing me onto the road, you bet your arse I’m going to lose it at you! You’re the one who is showing your privilege, and making sure I have to go out onto the road into oncoming traffic is just going to piss me the fuck off. You bet your sorry arse that it’s not going to be the end of what I have to say to you when your reply is “Well I’m just waiting for my husband.” You can move your fucking car back a grand total of two fucking feet to let me past you miserable bitch!

Now let’s move onto you, Mr I’m-So-Shitty-And-Privileged I’m going to park in front of a drop curb meant for disabled people in wheelchairs and those with prams and buggies to use instead of move a foot forward or backward on a repeat basis. Do you know how often you stop me being able to get straight to my home and make me go an extra ten to twenty minutes out of my way when I’m already in complete and utter agony? I will start leaving notes on your bloody 2016 Porsche that really doesn’t belong in our less than affluent area telling you what a fucking privileged dick you are.

As for you, the ones who talk to my sister and ignore me when I ask you a question because I’m sat in a wheelchair. If I am the one who asks you the question, why the hell do you give her the answer? Do you think I’m not able to comprehend you? Because seriously, I’m the one who damn well asked you if you had the fucking item in stock. And you look surprised when we decide to dump our shopping basket and go somewhere else to get our required items? Really?

Next up come the shops I used to love to frequent before I became unable to walk far. The ones who are now impossible to enter because they don’t have disabled access, and if we manage to get my chair through the door, my chair won’t fit past the racks. There are three charity shops in the entirety of my little town which is overrun with them that I can now get into and shop in safely. And considering they are all there for the benefit of people with disabilities and two of them I can’t shop in raise money for people like me, this makes me cringe.

Last but not least is the woman in a chain store famous for discount sports attire who looked at me in my wheelchair as if I had no right to be in the store at all as she was shopping with her friends. Now, I may be wrong on this, but don’t people in wheelchairs fucking wear clothes? Don’t we have the right to do what sports we can? Don’t we support sports teams? I often find trainers to be the easiest shoes to put on and take off, and I love wearing t-shirts. Plus this particular chain sells other shoes, and extremely nice coats at wonderful knock down prices making them affordable. Which I presume is why she and her rather well dressed friends were in there in the fucking first place!

In short people:

I AM A FUCKING HUMAN BEING AND I DESERVE TO BE TREATED LIKE ONE! SHOW SOME FUCKING RESPECT!

Milestones, New Chapters, Positive Steps

In just over 6 months I turn 35. I’ll have been alive been alive 30 years longer than doctors expected. And I’m proud of that. A lot prouder than I am of most things in my life, because it marks me as a survivor against all odds. The scar that runs from my left under arm up my shoulder blade from open heart surgery as a 6 week old baby in 1982 reminds me of it daily.

I’ve overcome a lot in those extra years. I’ve been through endless medical visits. I’ve dealt with abuse and bullying. I’ve had physical, emotional, and mental issues to face, and I’ve always come out stronger. I face pain on a daily basis, but I do it with a smile and grace (most of the time), because each day is an extra gift that I didn’t expect. That doesn’t mean to say I’ve always seen it that way, but it’s how I see it now.

I’ve attempted suicide five times in those extra 30 years. But I’ve never succeeded. I’ve been stopped by loved ones in the nick of time, by a stranger once, and by my guardian angel twice. I’ve self harmed, I’ve suffered from anorexia and bulimia, I have PTSD Asperger’s, endometriosis, asthma, Irlen Syndrome, and severe anxiety, and there are days I want to hide under the covers with a razor blade but I choose not to.

I get frustrated at things, I get angry, I scream, I rant, I shout, just like the next person. I also go into meltdown and shutdown periods. I am far from perfect. But I am learning and I am evolving. I am changing and I am understanding what is right for me as I get older. And that means that I am closing chapters in my life, as well opening new ones. It’s a scary process but it’s an amazing experience. 

I am choosing to look after me as I come to terms with my diagnoses of fibromyalgia and auto immune arthritis. To learn what they mean in regards to my abilities and my life. I’m learning to understand how they work in conjunction with my other disabilities and conditions, and how I can push myself whilst pacing myself, and how they change my advocacy mission.

Will I be here for another 30 years? I can’t answer that. But I do know that I can honestly say that I hope so. And I hope to be as grateful for each of the days that comes. I hope to be able to smile at my chosen family and greet them with the hugs and love that I do now, even if I don’t have the energy I once did. I want them to know how grateful I am that they are in my life. And on my 35th birthday this year, I want to open my eyes and smile, knowing that I made it despite what my mum was told. And that whilst she’s not here to see it, I’m still going strong, with her in my heart.

A letter to a childhood hero

I’m pretty sure this letter is going to end up with me getting a lot of abuse from a lot of different quarters, and you know what? Quite honestly, I don’t care. It’s taken a long time to mull over and honestly it’s been a long time coming. You’ll always have a place in my heart, but I’m not going to put you on a pedestal like others do, and I’m not going to join in the menagerie of adoring fans that cannot possibly breathe without your attention. To be honest, I’m sick of it all, so excuse me whilst I focus on other things, and move on to pastures new. I love you, and after 21 years, I always will, but I’m not about to hurl myself under the bus and get involved with the crappy little cliques that have evolved around you in recent years.

I remember a time when being your fan meant something. It meant wanting to do something for those less fortunate than ourselves, regardless of how fortunate we are. It meant clubbing together to raise money for charity and sharing experiences. It didn’t mean screaming over social media for you to pay attention as people screamed at you that they were donating or raising money, or wanted you to wish them a happy birthday. I tried last year to thank you for 20 years of inspiration, of knowing that I was more than I was taught I could be, but I was drowned out in the cacophony, and so I gave up.

I’m done with the childish behaviour of your fandom. Of the girls that drink themselves into a stupor and then wonder why they are so hungover the next day, wearing the  hangover as a badge of honour, or declaring that they’ll never do it again, only to binge again the weekend after. I’ve seen what harm can come of that. I know that 75% of the cost of alcohol harm use in the USA comes from binge drinking, and that binge drinking can lead to Alcohol Use Disorder. But there’s only a couple of us that are trying to reach out to those people in your fandom who are acting in that way and we get rebuffed. Others tell them that we don’t know what we are talking about and so they listen to them instead.

You have a heart of gold, and you are truly a good soul. I know that. I’ve met you, I’ve spoken to you. Because of you, I’ve met my sister, and some of the most wonderful people in my life. But your fandom turns in on itself quicker than anyone would care to admit. It’s washed over quickly so that you don’t hear it or see it. But it happens. And perhaps the scariest thing is that some of the people doing it are the people who should be setting the best of examples.

There are still some amazing people in your fandom, the sad fact is, that they are often drowned out by the louder ones who clearly don’t give a damn about your reputation or the reputation of the others in your fandom.

WANTED: Reviewers, donations, suggestions

It’s been a busy few months over here in writing land. My poor blog has been disgracefully forgotten, along with other things, and I’m determined to get back in a proper working schedule again (as soon as I’ve done the housework).

the-journey-home-correct-size

The Journey Home – Book 2 in The Lunegosse Tales is now available for purchase through Smashwords, Amazon, Create Space and others (in both paperback and ebook), and joins The Search for Lana. I’m thrilled that the second book is now available after a rocky start with printing and getting the formatting sorted. I’m currently looking for people willing to review both books and put their reviews on Goodreads, Amazon, and any other booksite or blog that they would like to share them on. Please note that I am only looking for people who will actually do as they say and review the books, and within a short time frame. I had far too much of time wasted when I asked for reviews last time.

books-banner

I’m still crowdfunding for next year’s book tour. And I’m only £100 away from announcing the first tour date! If I get that £100 and reach £500 by Christmas Eve, I’ll be doing a giveaway. But I need to get there first, so please please please, share the link, share the campaign and encourage others to donate, as well as donating yourselves.

And talking of the Book Tour. Please feel free to email me at nalebrunauthor@gmail.com with your suggestions for UK Sci Fi Cons I should bring my books too.

Never give up, never surrender…. never stop writing

Just your regular reminder of everything going on at the moment. Because let’s face it, without you guys I’m not going to get very far.

Crowdfunding Campaign for 2017 Book Tour

Click on the image and join in, a donation as small or as large as you like. Up until Saturday, any donation of £5 minimum will get their name in Book 3 when it’s written and published.

books-banner

The Journey Home Book Launch – 19th November 2016

On Saturday, over on my Facebook page, I’m launching the second book in The Lunegosse Tales. Go over to my page and join the event to join in with the fun and frivolity of the launch. Click on the image below to head over there.

the-journey-home-correct-size

Patreon

I am over on Patreon! By becoming a patron you not only help me to continue writing but you get access to exclusive content not available anywhere else. You’ll also get sneak peaks of new books and projects before anyone else. Click on the below image to come join the fun.

becomeapatronbanner

 

Flying like a headless chicken through space

With days to go before I launch The Journey Home on my Facebook page, things are a bit chaotic over here in writing central. I’m busily trying to get more people involved in the launch and the ongoing crowdfunding campaign for my 2017 Book Tour. My Patreon page could do with a boost too. So if you see me flying round in orbit, arms flapping, you know why.

In other news, I’m currently signed off by my doctor until January… which means I’m devoting more time to the writing/sketching/crowdfunding as I can do all of that from my bed or couch. They still haven’t figured out what’s causing my pain and it’s driving me a little crazy, dear readers. There are mornings where if I don’t have my sister to help me, it can take me an hour just to get our of bed. And I’m seriously considering using some of the crowdfunding money to hire a wheelchair for use at various cons I’ll be selling my book at, just to help me get around. But we’ll see on that score.

I’m still trying to put together a list of cons to attend next year, so please, please, if you have any ideas, don’t hesitate to drop a con in the comments. Please bare in mind that I only want to do independent cons and that they have to have good disability access, they must also be UK based.

My darling readers, you’ve been there through a lot with me, and you’ve put up with my incessant crowdfunding posting, so I’m eternally grateful to all of you. Please, if you can’t donate/join in the book launch/become one of my patrons, share the links, share this post, and help me get the word out there. As an independent disabled author, I rely heavily on word of mouth. I couldn’t be more thankful for all of your support.

Exciting times coming!

My new book, The Journey Home, is due for release on 12th November. And I’ll be holding the launch party over on my Facebook page! I’m rather stressed, but to be honest not really a surprise. At that party I’ll also be launching my new merchandise store, which I’m sure a few of you eagle eyed readers may already have spotted in the menu of my site.

I’ve also launched my Patreon page! So come and support me over there and help me to produce more content for you.

And don’t forget that I’m still crowdfunding to raise money for my 2017 Book Tour over on GoFundMe.

It’s a very very busy time for this author, and I’m hoping that you’ll all continue to support me as I push forward with The Lunegosse Tales, start making strides towards my Book Tour and merchandising myself and my work.

Crowdfunding Progress Report and a little more….

Well,  the crowdfunding campaign for my 2017 Book Tour is currently doing well. The first £100 of the £4000 goal has been reached! And I’m thrilled to say that it’s slowly picking up traction.  There are (if I do say so myself) some awesome perks on offer. So please, share the link, and donate if you can.

I spoke earlier today on my Facebook about why this book tour is so important to me, and I realised that perhaps I should share it here to. 2017 is a landmark year for me. I turn 35 next year. Now, I know that that isn’t seen as a milestone by many, but for me it is. When I was born, I had a coarctation of the aorta that required a heart bypass. Doctors told my parents that even if I did live through the operation, they didn’t expect me to last beyond my fifth birthday. Well next year, I’ll have beaten their expectations by 30 years, and I’m looking to do several things to mark that, including the book tour. This is why you’ll find me pushing the campaign at every available opportunity. Next year is my 30th second birthday as it were.

I’m also busily preparing for the launch of The Journey Home (Book Two in The Lunegosse Tales), on 12th November over on my Facebook Page. For those who have already read book one, this book will be out in time for Christmas, ideal as a Christmas present. I’ll also be putting the ebook of The Search for Lana down to 99p/99c from 12th November until Christmas, so you can buy a loved one both books.

It’s a busy time over here in my study and I’m looking forward to sharing my first tour dates with you once more funds have been raised. I also hope to see you at the online book launch!

 

Book Tour 2017 – Crowdfunding Campaign

The second book in The Lunegosse Tales, The Journey Home, is coming out on 12th November 2016! Just in time for Christmas. I’ll be having the book launch over on my Facebook page again, so please like the page if you want to join in the fun!

And in addition to this, I’m currently crowdfunding for my book tour next year! I’m looking to raise £4,000 in order to cover copies of both books, business cards, flyers, accomodation, travel, and tables at science fiction conventions throughout the UK.

If you want to join in, I’m offering perks including ebook and paperback copies! Please click on over to my gofundme page and help get Lana and her family to a wider audience!

My disabilities don’t make me an inspiration

There are days when I just want to scream at people to back the frak off. Days where I wish I didn’t hear the words ‘you are an inspiration to me.’ I’m not an inspiration. I’m me. I’ve had several of my disabilities since I was born, a couple for as long as I can remember, and the others, well they may as well have been there for life. I push through because there is no other choice. I could allow the PTSD to win and combine with my Asperger’s to throw me under a bus, or I could try and get myself moving, search for a job, sketch, write, and try and enjoy the positives that intermittently disrupt the negativity. When you live with chronic pain and chronic illness, you become an expert in hiding it behind a smile until you just can’t anymore. Then when people see past the facade and through the cracks, it’s amazing how quickly they can back away from you.

You get used to telling people ‘I’m fine.’ You tell yourself you are. You push yourself beyond your limits and then you’ll find that you pay for it later. I heard the phrase ‘spoon overdraft’ the other day, borrowing spoons from a non-existent reserve just to be able to enjoy something or do something you otherwise shouldn’t be. I guess you can say I’ve been doing that most of my life. None of this makes me an inspiration. If anything it makes me deeply human. The pressure we ‘Spoonies’ place on ourselves to compete with those without chronic illness/pain is immense. The pressure Aspies feel to act in a neurotypical way, in effect hiding ourselves from view, is often heavy on our shoulders. This isn’t inspirational. It’s, in my opinion, a shame. We should embrace our differences, and that’s something I’m starting to learn. I’m also starting to understand that it’s ok to say no. If my body needs to rest, then I should let it do just that.

My inspirations are people who use their experiences in order to help others. I’d much rather be recognised for the way in which I help other people than live my own life. If you want to be inspired by me, be inspired by the fact I taught myself to sketch. That I self-publish my writing because I want the world to read it. Be inspired by the fact that I am an activist for disabled rights, LGBTQ rights, and the rights of all minorities. But don’t choose to see the fact I got through another day in pain that I can’t even begin to describe be your inspiration. My normal is not yours. So telling me you don’t know how I get through each day with the pain I’m in (physical, mental, emotional), is not helpful to either of us. I do it because there is no other option. But if you want to tell me that me self-publishing has inspired you to dust off the old book you were writing a decade ago, I’ll willingly take that compliment.

 

It doesn’t feel possible….

Hi Honey,

I just heard the news, and I’m sitting here not really knowing what to see or feel. We hadn’t seen each other in a while, but the news has hit me like a punch to the stomach… I don’t know if I’ll ever be able to wrap my head around the fact you’re gone.

We grew up together. You, me, and SJ were always in and out of mine and SJ’s houses. We watched movies together that we hid from our parents at sleepovers because we were technically too young to watch them. You and I snuck The Exorcist into my home because my father wouldn’t let me watch it, and then laughed the whole way through it.

The three of us had the usual teenage fights, but we were always there for each other, no matter what. If one of us was hurt by someone else, then the others were they to stand up for them. I’d come home from school and you and SJ would be in the living room, talking to Mum and waiting for me.

We spent hours at the beach, talking, trying to put the world to rights. I never did tell anyone about that night at 2am when we snuck out to meet each other and just talk. I never shared what was said, and Mum never questioned it when she knocked on my bedroom door in the morning and you were there. She just asked if you wanted a cup of tea.

I’ve missed you, since we drifted apart, and now I regret that we never really regained contact. I wish I could just tell you one more time that I love you, see your smile and hear your laugh as together with SJ we stayed up way to late and watched Tales from the Crypt. Rest in peace, my friend. May we meet again.

Me

xoxoxo

What about when the doctors just don’t know?

On top of my usual issues with disabilities and health, the past few months have been agony beyond all other agony. My hips, thighs, calves, and lower back are causing me untold pain. I’m over it. I can’t handle it any longer, and I’m sick of not getting to the bottom of it.

My doctor thought it was bursitis. I’ve had steroid injections but they did nothing. I went to the hospital today for ultrasound guided injections to be told it’s not bursitis causing this pain. The earliest appointment I can get with my doctor is the 23rd August! 

Meanwhile I’m on a phase return to work, after 2 months off in complete agony, not because I feel any better, but because I’m going crazy stuck at home. And because you need money to survive. 

I’ve done my research, I’ve googled the symptoms, I’ve spoken with friends who have chronic pain. I have spent hours (even before the hospital today) between the exhaustion and pain looking at it and I know what I think it is. I know my body and I know I’m usually right with what’s wrong (it’s part of being in and out of medical appointments my whole life), but getting an actual diagnosis is like trying to unlock a door with chocolate pudding. It’s frustrating. 

I have eighty percent of the common symptoms of fibromyalgia and am fighting for the damn diagnosis. The problem with this is I’m running out of spoons to keep this battle going. And without diagnosis I can’t get access to the medication I want to try in an effort to reduce the pain over the long haul. 

Why is it so hard for physicians to listen when we ask them for help? Why is it so impossible for them to listen to us when we are the ones who know our bodies best? And why does my fucking doctors surgery make it impossible to get a damned appointment?

RIP Jerry Doyle… Sleep well now Mr Garibaldi

The world feels a little emptier today. The dust is settling and the reality is sinking in. Another of the Sci-Fi community’s heroes has gone beyond the rim. And he shall be missed by everyone whose lives he touched.

Of course my thoughts go out to the friends and family he leaves behind first and foremost. They are the people who knew him best. But this post is primarily dedicated to his fans and in particular to my fellow Babylon 5 fans. In losing Jerry, we’ve lost another member of our beloved rag tag team too soon.

Babylon 5 is often overshadowed by the bigger franchises. But there are those of us out there in Sci-Fi fandom for whom B5 is something that will always remain deeply in our hearts, our minds…. Heck even our souls. B5 has given so much to so many of us over the years. And it doesn’t matter how long you’ve been a fan, as a community we will welcome you into our fold.

The true genius of JMS’s show is still the genuine reflection of people and relationships. The way in which despite decades or centuries of hatred between species, characters form bonds in adversity is sublime. The way in which each character is flawed (and painfully beautifully so) adds to a uniqueness of this space opera.

As fans we’ve lost a large number of the cast we adore in such a short space of time. We sit and try to fathom why and we find no answers. But one thing we all know, as we support each other through this and send love out to Jerry’s loved ones, is that we are all better off for having had Babylon 5 touch our lives.

It doesn’t matter how the show touched our lives, just that it has. And continues to do so. Personally it has brought so much into my life, and a lot of it so private I cannot share it publicly. But it’s changed me. And Jerry, as Garibaldi, had his part in it. Garibaldi with his humour, his grumpy nature, his love of Daffy Duck… Garibaldi with his Alcohol Use Disorder and his heart of gold… The hairline that receded by season… These are the things that come to mind when I think of Jerry.

So my darling friends, and my fellow fans, grab those you love today and tell them that you love them, check in on that person you know lives alone, smile at a stranger on the street you might just make their day.

Rest in peace Jerry. The skies have gained another bright star and the Earth is less one more brilliant light.

From the stars we came, to the stars we return. From now until the end of time.

Sci-Fi, Queer Women, and the lack of our representation

In the past few days, my social media feeds have been full of anguished cries over the new Star Trek movie and the fact that Sulu is a aay man. Now if you know me, you know I’m a Trekker. I live for Sci-Fi, I breathe Sci-Fi, and I dream in Sci-Fi and Fantasy. Science Fiction and Fantasy are my mainstay. They are what helped me through a difficult youth, they are what come to mind when I write my books and short stories. They are the subjects of many pieces of Queer fanfic I have written. It’s my dream, my desire, to see people like me in more Sci-Fi. I want to see well developed Lesbian characters. I want to see humans who aren’t on the gender binary. I want to see Trans people, I want to see those with Asperger’s and other disabilities and not have them automatically be alien.

Continue reading

Tearing at my flesh- A Poem (TRIGGER WARNING)

BEFORE YOU READ THIS, PLEASE BE AWARE THAT IT COULD BE A TRIGGER IF YOU SELF-HARM. I DO NOT WANT TO TRIGGER ANYONE AND AM MERELY TRYING TO GET MY OWN THOUGHTS AND FEELINGS TOGETHER.

It’s tearing up inside me
This pain that radiates
Causes my depression to
Tumble into darkness
My fingers seek out
Traditional ways to
Concentrate the pain
But my heart reminds
Me of a promise that
I solemnly made
I ache for some control
In this crazy world
Stimming helps
But is not enough
At times it’s all I can
Do not to pull at my
Own skin and watch
The blood form as
Nails dig into flesh
I made a promise
Which I intend to
Keep even though
My mind and body
Scream as if to
Break it once
And for all
But it’s a promise
I cannot and
Will not break
And so I allow
The stims to flow
I sketch and write
I read and play
Games in the hope
That the desire
To mutilate flesh
Recedes for one
More difficult day
Her words remind
Me that to tear
Skin from muscle
Hurts not just me
But her as well
She gave me truth
I did not ask for
Trusted me to
Carry on my
Current path and
Stay away from that
Which tears us both
Into a million shreds
It’s a difficult
Path to follow when
Pain not of my own
Pulses through
My body and
Leaves me unable
To do the simplest
Of my daily tasks
Without sobbing
Or faltering to stand
But in not giving
In to temptation
I am maintaining
Some semblance
Of control and
That is what I
Need to remind
Myself of when
I want to scratch

(C) N.A. Le Brun/scribblenubbin 2016

Time for fandom to grow up 

Seriously people, convention guests cancel. Be it because of work commitments or personal reasons. These things happen. No convention ever says a guest is guaranteed because they are often booked months in advance and contracts are written so that guests can pull out if need be.

A con is great for the fans but doesn’t pay the actor/writer/artist as much as other work does. That doesn’t mean that it’s not great for them either, but we have to be realistic. Filming on a production would not be halted for a convention and sometimes it so happens that people have to pull out in order to feed their families, etc. 

I’ve been at conventions where I bought my ticket months in advance and a guest I wanted to see pulled out shortly after I booked. I’ve been to cons where guests have pulled out a week before, a day before, or even during the con itself… Do I think any less of the person who has pulled out? No. Am I disappointed, naturally, but I don’t start ranting and raving at them on social media because something got in the way of their attendance.

Those guests that people clamour to see are HUMAN. Just like you and me, they have real issues, need to take jobs to pay their bills and feed their families, they go through illness and stress, they need to be able to put their needs first.

I pulled away from a particular fandom because of the crappy attitudes of certain people when charity fundraising became a competition rather than a way to show respect for the charity founder and the people they have helped. Judging by what I’ve seen this morning, I was right to distance myself. 

I get that you are disappointed. I was devestated when the person I most wanted to meet at my first big convention pulled out. The same person you are now having a go at. But I had a cry, pulled myself together, and had a fab time at the con regardless. And I still got to meet them, just later than I had planned. One of their colleagues pulled out of 4 conventions I was going to before I eventually got to meet them.

This actor and director who you are yelling at over social media is a human being. They are one of the most caring, respectful, loving, and genuine people in a world where those qualities can be hard to find. When they tell you that they are sorry, you should realise the lengths they go to in order to be able to not disappoint you and that it hurts them just as much as it hurts you when they have to pull out. You’re in their fandom for a reason, you know they are the person I just described. 

So stop having a go and start having a think about how your words are hurting them and others. I truly get your disappointment, I do. But lashing out won’t change things, and it certainly won’t endear you to other fans.