Spoonie Writer: Writing In Pain

SPOONIE WRITER: WRITING IN PAIN

It's been a while since I've talked about this, and as it's never really been about the pain so much as about the thing the pain causes, such as hospital visits and down time (pieces found here and here.) But given that in the last month I spent a week in the hospital and have, since then, been diagnosed with a new fun symptom of my chronic pain conditions, I wanted to touch on it specifically, because I feel like too much time is spent telling people how to work around being sick, and not what happens when you just... can't.

I'm guilty of that, I have spent a lot of my time on the blog, in my career, on my Authortube channel, talking about how to manage your time and be as productive as you need to be. And that's both true and it's not, because sometimes it's not the pain that's stopping me from writing, it's just my want to be lazy or to avoid a problem I'm finding in my work. And in those cases, yes it's a good thing to push yourself, but when you're chronically ill, when you have a chronic pain condition, sometimes you can't push yourself without it coming back to bite you in the backside.

So what do you do when you can't write? When the pain is super bad and all the painkillers in the world won't help? You stop. You rest. You take as long as you need, and you take your time. Because no matter how much the abled world likes to tell us, we're valid whether we're being productive or not. It's a hard lesson to learn, but it's one that I feel the need to spread.

Here's some things that might help with that, but be aware that they're just my tools and they might not fit in your toolbox, but that doesn't mean that there's something wrong with you if they don't! Everyone is different and it's taken me a long time to be okay with using these tools, and managing to be okay with taking the time to refresh, to relax, to be in pain and still function through it all. I hope they help you too.

#1 - A BOOK IS A GOOD ESCAPE
Sometimes it can feel like work to read, but other times it's good to just lose yourself in a book. Even if it's something you can only do in small doses, it can be enough to take your mind of the pain and allow you to get some restorative rest.

#2 - NETFLIX AND SUCH
I will usually only turn to this if there's nothing else that works. Simply because I have a hearing issue and sometimes when I feel worse, I'm not able to focus all that well on the sounds and what's happening on screen, but it can be a great way to spend your downtime.

#3 - TALK/MESSAGE WITH FRIENDS.
Depending on how you do with voice, sometimes just texting can be enough. Personally I prefer using Skype or voice to talk because it allows me to close my eyes and just focus on the words. My editor is great at this, when I was in hospital she kept me company, kept me sane through Skype calls and good headphones. It helped in the darkest times and it allowed me to stay somewhat connected to work without having to actually do any.

#4 - THOUGHT DUMPING WITH AUDIO
I did this while I was in the hospital, during some down time when I actually felt well enough to be doing something. I wasn't up to actually writing, but I did have my phone and good headphones and was able to use the memo app to record a few bits and pieces of dialogue and action scenes as a way to make sure I didn't forget it before I got back to my computer.

#5 - REST, AKA SLEEP.
Sleep can be a great healer, it can be something that allows you to both get better from a current issue, and also give you the tools to keep fighting the pain. I did a whole ton of this in hospital. For the first few days, I was actually falling asleep mid-conversation and it was annoying, but so very much needed. It allowed my body to rest, but it also gave me a chance to spend some time away from the pain. I don't know about you, but I don't feel pain in my dreams.

So while this piece is titled about writing while in pain, I wanted to give it a better sense of the idea that we don't have to always be productive to be valid as either writers or people. We are allowed to take the time to recover. Yes, there are no days when I'm not in some level of pain, and on those I'm able to write. But there are way too many when the pain is just too much and I feel the need to keep pushing myself to meet my goals. Which isn't healthy either for my body, or in general.

So remember that you can take rests, that breaks are important, and keep fighting, you will get there. The time it takes doesn't matter, it's just the destination that's important.

Follow Joey here on her blog, or on Facebook or Tumblr to be kept up to date with the latest news regarding Joey and her books

Spoonie Writer: Writing When You Can Revistied

SPOONIE WRITER: WRITING WHEN YOU CAN REVISITED

I haven't written on this subject in a long while and it felt like, since I was revisiting over post similar to this one, that it was a good one to focus on. If you're interested, the first post can be found here. I will just clarify that a spoonie is someone who has, through mental or physical disabilities and conditions, limited energy that impacts how much they can do in a day. I started these pieces because I felt very much like a lot of the usual writing advice posts that I saw focused on getting as much done as possible in one day, and didn't really account for those of us who just... can't.

So, in the time since I first talked about this, I have been dealing with a number of new health conditions. I have also gotten a whole lot more organised not just with my working life, but my personal one too. I have a routine that helps me stay on track with my goals, but also allows me time to rest, recuperate and get stuff done.

I could talk to you about organisation, but I've done that before. It is something I intend to touch on again at some point, but this piece is for the spoonies out there who know that no matter how organised they become, they will never hit that point of having written 10K words in one writing session. Or taken part in a twelve hour writeathon, or something along those lines. This isn't a jab at those that do manage that, more power to you, but this piece isn't for you.

I wanted to write something because I've noticed a lot on online spaces for writers, whether that's on Tumblr, or Twitter or somewhere else, that a lot of pressure is put on people to achieve massive amounts of work in the smallest amount of time possible. I do that to some degree, but what people don't see, and did when I did a day in my life vlog on Authortube (video found here) is that I spend half of the working day relaxing and the other half up in bed, ready to call it a night by at least 6pm.

Now I am productive, I know a lot of you know that. One of the reasons I stopped posting the monthly word, pages and chapter count for #JoWriMoGo was that it felt like I was saying to people that: hey I'm disabled and sick and managed this, why can't you? And that's not something I ever want to do. I don't want to be the disabled person that abled people use to make you feel bad. On top of that, I know that a lot of what I manage is done because I've tried and played with my schedule to make sure that I know what I can complete and what I can't. I know that there are bad days when I just can't do anything, so matter how hard I try.

So when it comes to writing, and when it comes to spoonie life, just be gentle with yourself. You know what you can manage and while it may be hard to see other people doing more, and feel that peer pressure to be up there with them, just remember that it takes as long as it takes and that's completely okay. You are battling against things they are not, and it's okay to need to take breaks. There's nothing cool about working yourself to the bone.

On top of that, there are some circumstances where you can find your limits and make sure you are as productive as you can be on your good days. Like right now, I normally don't do blog posts until the end of the month, but I wanted an extra day off and today is a good day, so I'm pushing myself just a little to get all of that done now so that I can spend the few days after Mepo relaxing and just doing no work at all.

Sometimes you have to take what you can get, and writing is no different. So even if you will never win Nano, or you'll never write for a full 12 hours, or you'll never hit 10K in one day, hell, even 2K, that's okay, because so long as you put words on the page, you're still winning. You just gotta go at your own pace. It's not a race, and you will get there.

Follow Joey here on her blog, or on Facebook or Tumblr to be kept up to date with the latest news regarding Joey and her books

Spoonie Writer: Juggling Illness & Writing

SPOONIE WRITER: JUGGLING ILLNESS & WRITING

I've done pieces recently about the burnout I suffered at the tail end of 2018 and into 2019. (Piece found here) I wanted to touch on this again as a spoonie writer because I feel like it's something that applies to both me as an author and me as a spoonie and it might be something that can help others in the same situation. Just to clarify, I am doing better from the burnout. I took time for myself, allowed some self-care and gave myself the space to refill my creative well. On top of that I have been dealing with new symptoms which I've talked about on my Authortube channel and will briefly go into here.

For the past three months I have had what seems to be an allergy rash. We've treated it long term with steroids and a new anti-histamine, but there is the very real possibility that I have developed another condition to go with my others. Everything is up in the air, but it's looking to be auto-immune and could be anything from Lupus to arthritis to even just my body being the butt it is from time to time. I mention it because for a period they were concerned that it was simply brought about by the stress of working myself too hard, and that's a very real problem when you're a spoonie and trying to hold down a job of some sorts, especially a creative one that requires a lot of active planning and brain power.

When I talk about juggling illness and writing, I am usually talking about a long term illness. I do get colds and such from time to time, everybody does, but generally they don't hang around for long and you're, usually, able to take time off your working life until you recover. The same can not be said for a long term illness. I don't work a conventional job, and some days I don't work at all, but when I'm having to work through a flare or a hiccup in my health, I'm usually on deadline and having to do so because of the people and timing depending on me.

Like right now, I am in the midst of my second book release of the year. I also have a third planned, so have been juggling editing, proof-reading, promo, cover reveals, ARC readers and the like since the beginning of the year and it's not about to stop any time soon. Now of course, I could, as an indie author, choose to change the release dates, but I have put time and energy into making sure these releases go off without a hitch on the time frame I have promised. That means a lot of pressure on me to make sure I keep up with things.

So how do I cope with all of that while also keeping myself as healthy as I can be? Glad you asked, because I'm gonna tell you five things that I do to make sure I stay on deadline, but also don't make myself sick or sicker depending on the day of the week.

#1 - HAVE A PLAN
I've always been someone who's organised, and that's the same when it comes to my writing and releases and such. I know what needs to be done by when and having that gives me some breathing room and helps manage my anxiety. If I have a day when I'm not able to work, then I can look at my plan and know that I'm on track. For me it's always been sticky notes, I'd show you them but they have spoilers right now! But whatever works for you is the best option.

#2 - MAKE TIME TO REST
I have been doing a lot of resting these past few months. It means that I am over thirty books ahead on my Goodreads challenge because for me, nothing says rest like a good book to read. I have days when I'll be writing and that means setting aside time in the evening to wind down, read and catch my breath as it were. I also have days when I have nothing to do but small pieces of admin, like writing blog posts or vlog scripts. These are my days off, even though people tell me that since I'm still doing something related to work they don't count, but they do for me. I also have complete days off, these are days I plan to do nothing related to my author platform. They are sacred and important because they allow me to take a step back and recharge.

#3 - ALLOW FOR CATCH UP DAYS
If you're on deadline, during something like a a release or edits or something like that, then you need to be sure you have days that allow for some breathing room. These will be a lifesaver for you because they will give you a chance to reassess what you need to do, and know whether or not things need to be changed. I personally have dates that I already know will be the limit, but have plans to get things done before those dates so that if I have to push things back, I'm not going to miss the deadline. It helps me with my anxiety and it also allows for other issues outside of my control.

#4 - REMEMBER THAT SOME THINGS ARE OUT OF YOUR CONTROL
I'm talking about waiting on other people, like for my first release of the year, I ran into issues with my editor getting behind because of her own work schedule. I couldn't do anything about that and so getting the book ready for release and off to the proof-reader and from there to ARC readers were a massive headache for me, but it was helped by having friends around who could remind me that it could be done. And it was done, because of those catch up days and because of having set those deadlines, I was able to meet the goals set with minimal stress to me and my health.

And finally, #5 - GIVE YOURSELF SOME GRACE
I say this as someone who is usually hard on themselves. Especially when I'm on a deadline. I expect to give 110% to my work and to get it all done, but I'm not superwoman and neither are you. Allow yourself the time to heal if you need it, be careful with yourself because you are only human and you will make mistakes and that's okay. Pick yourself up, dust yourself off and get back to it. You're allowed to need time off and you're allowed to need space. It's all part of the process.

So those are my five tips when it comes to juggling your illness and your writing. I know that I've mostly focused on releases, but these can all be applied to other facets of the writing life. I have gone easy on myself these past few months and I plan to continue it going forward as well. You have to take care of yourself because that's how you keep writing and keep creating.

Follow Joey here on her blog, or on Facebook or Tumblr to be kept up to date with the latest news regarding Joey and her books

Spoonie Writer: Signings & You

SPOONIE WRITER: SIGNINGS & YOU

I figured that with the convention fast approaching, I mean we're now at just under three weeks, I would address the issues I've faced getting things in place and offer my tips to help other spoonie writers who may be looking to do their own signings. I've got a vlog going up this week that will address those last minute preparations, but it still seemed like a good idea to do an advice piece as well. That way it's covered on all fronts. This is my first signing and my first big event as an author that has lead to time away from home, being "on" for a long period of time and having to deal with health issues on top. So what's my advice?

The biggest one I can give is to plan ahead as far as you can. I started ordering my paperbacks back in 2016 so that by the time I got to this point I was no longer worrying or waiting for anything to arrive. The same can be said for all the SWAG I've ordered, banner too. I planned far in advance simply because I didn't want to get close to the day and find that I was missing something. I know that my conditions are exacerbated by stress, so why add to it? As it stands now, I am more than ready to get to the signing and deal with all of that.

Along with organising, came the realistic need for both access and certain accommodations for the event itself. As you all know I'm on oxygen pretty much all the time I'm awake. I wanted to arrange with my oxygen company to have a machine delivered and they were great. They need some notice though, so again with the whole planning and being organised when you can. I also reached out to the event organisers and asked if it would be possible for me to be sat near a plug. That way I can use the main concentrator and not have to worry about my canisters running low. The oxygen concentrator I have is one that can refill canisters, but I didn't like the idea of leaving it on in the hotel room when there'd be no one in there. The organisers were great, as were the hotel and the oxygen company. Same goes for access issues for my chair, they've all been excellent at making sure I have what I need to bring myself to the event.

One thing that did worry me was what if I couldn't manage it all? I didn't want to let the organisers down, but nor did I want to just not put myself out there for conventions like this. So I made a judgement call and am still making that call. I won't know for sure until I've done it, but I've planned my time in the weeks and days leading up to the event to allow myself for plenty of rest breaks. My carer, and best friend, is coming along to help me on the day and she's good at making sure I don't overdo it. There will be a short lunch break and during that I will, if need be, have the opportunity to nap in the room. I'm mostly focusing on doing the whole day, napping and then going to the after event ball.

That was another judgement call. If I'd been "on" all day, was I really up to a late night? I went back and forth about it before I finally decided that yeah, I'd manage. If worse came to worst, I could leave earlier than planned and head to bed. Even though at the time of signing up, B didn't drive, she does now which means that if it comes to it, she can make the journey there and since we're staying at the hotel until the Monday, I can spend the day after sleeping and resting and all that fun stuff that comes with being a spoonie. I made the decision that I wouldn't know for sure until the night and I would much rather push myself a little to experience all that I could than say no and miss out on something. And again, it's something that's not set in stone so if need be, I can pull out.

One thing that a lot of people who aren't chronically ill and/or disabled don't seem to realise is that we have to make so many choices every day. I can choose to spend my spoons, knowing that it will give me one hell of a payback in the weeks following, so that I can experience something I never have before and is, quite frankly, an experience I want under my belt. Or I can be cautious. As it stands now, I plan to definitely be there on October 7th, for all the signing on the day and the after event, but the organisers are awesome and I know if I had to pull out between now and then, they'd understand. As it is, they're doing everything they can to make it as accessibly and easy for me. Which is something I very much appreciate.

So, I'll leave you with the advice that while a signing might cost a hell of a lot of spoons, sometimes it's a good idea to step outside of your comfort zone and experience it. Having said that, you know your limits better than I do, and I know mine better than anyone else. Don't push yourself to the breaking point for something, no matter how much you want that experience. There are steps you can take, such as having a week before and time afterwards when your focus in purely on recovery. It can be hard to judge how much time you'll need so be kind to yourself and listen to your body. 

Follow Joey here on her blog, or on Facebook or Tumblr to be kept up to date with the latest news regarding Joey and her books. You can also sign up to her newsletter here.

Tales From My Sick Bed: Writing Must Go On

TALES FROM MY SICK BED: WRITING MUST GO ON

So, as I'm sure you'll be aware, I've not been around the past week other than to post my vlogs and other blog stuff. I've been sick, and it's had a big impact on my social media presence and my writing life. To give you a little background, I have several chronic conditions, the biggest one being a lung condition. Last Tuesday I woke up feeling pretty bad so headed to the local hospital where after a long day I was diagnosed with pleurisy and told to take it easy. I have been working pretty hard at both writing and editing and releases and all of that, and my doctor feels that I need to take some time off.

Of course, when you're an indie author, there's only so much time you can take off without having it make a big impact on your life. To begin with, he was adamant that I not write or do anything strenuous, having spend the last two months working really hard with few days off, my body has finally said: Nope. So we came to an agreement, I would work a few hours every day and spend the rest of my time resting and doing everything that went with it. It's been hard because I've gotten to that point where not writing feels just plain weird. But I don't want to get sicker, so I've following his rules.

For the next six weeks, I will be spending the majority of my time in bed, and yet I didn't want to leave my blog blank on the Monday's advice pieces but at the same time, I'm just not well enough to be doing a whole heap of work. So I came up with the idea of doing a few pieces about what it's like to write and be chronically ill. I've touched on some of these topics in the Spoonie Writer series, but I've never really had the chance to discuss it in detail beyond that. So today I decided to branch out and see what I could come up with.

One thing I have learnt from the early days of being sick was that I was limited in just how much work I could do from bed. These were back in the days before tablets and wifi and so everything that was written was either done by hand or typed into a laptop/computer. Since then technology has moved forward and I have the ultimate set up. I have a lovely purple husband pillow (we affectionately call him Jack), as well as a bed desk. I have a nice tablet, with a nice bluetooth keyboard. I have an oxygen machine upstairs because I spend so much time I'm spending in bed. So I'm set. I have my chapter plan and my character notes, and I can write.

Another thing I've learned from being sick is that if you can find a way to do something, you'll do it. So even though I feel pretty crap right now, I am still writing. It's the natural way for me to spend my time and losing that time can actually make me feel worse. Don't get me wrong, I am obeying my doctor - I don't want to get sicker or risk admission right now - but I'm still managing to get some work down during my up hours, and again during my down hours. It's nowhere near the level it was before, but for now I'll take it.

Follow Joey here on her blog, or on Facebook or Tumblr to be kept up to date with the latest news regarding Joey and her books. You can also sign up to her newsletter here.

Spoonie Writer: Sick Olympics (And What That Means For You)

SPOONIE WRITER: SICK OLYMPICS (AND WHAT THAT MEANS FOR YOU)

I've been a spoone for ooo...so many years that I don't have enough finger to count with. Longer than I've been a writer, so over fifteen years. The majority of the time, the posts I write in this series are about both, and this one is no different except it leans more to the spoonie side than the writer side, but all of it can be applied to both. The reasons it applies more to the spoonie side is because of the topic, but trust me, it does also apply to anyone who, like me, is both a writer and a spoonie. So on with the post.

One thing you learn very quickly when you're a spoonie is that the community itself is very welcoming. They will go above and beyond and will do whatever they can to help you. I have been active in the community for a while, but it's really only been recent years - since I was published - that I started to get more involved. Along the way I've learned a few things, and one is that there will always be those outliers. People who are both spoonie and welcoming, but feeling like they need be the sickest in the room. Now the majority of you reading will probably think: Why? Who wants to be the sickest in the room? Who wants to win that competition? The simple answer for me is: I don't have the first clue as to why or who or what and the rest of it.

In my many years as both a spoonie and a writer, I have come across so many spoonies who are just awesome. They have supported me through tough times, been there through the good ones and celebrated with me at every achievement. I am still friends with so many of them and it warms my heart to think of all that we, as people, have achieved alongside being spoonies. The community is awesome as said above and I can not emphasise that enough. A friend of mine recently went through a cancer. She's okay and doing brilliantly, but when she needed advice on medical procedures that I hadn't gone through, it was one of my spoonie friends who, while being quite sick herself, stepped up to the plate to help me talk her through it all. This is a great example of how the community can and does work together.

Yet, of course, there are some bad apples, and it's those bad apples that I wanted to talk about today. You will always have people who don't believe you're as sick as you are, and some of those are, unfortunately, also spoonies. But those ones are easier to ignore than the ones who seem to take every update as a reason to "one-up" you in the sick Olympics. And that is exhausting. I've found it happens when I'm talking about the writing work I do. The level of my workload seems to be a sign for people to sit there and tell me how much sicker they are than me. I don't know why. I don't know what they hope to achieve by being crowned the sickest of them all. It's an ugly part of life and of the spoonie world and something that I don't think really gets talked about except in small circles.

So what does that mean for you? I mean if I'm telling you that it's not something that can be avoided completely, how do you as a spoonie and/or a writer, avoid falling into this trap? I have a few tips for you to avoid the pitfalls of the sick Olympics. As always your mileage may vary.

1. BE PROUD OF WHAT YOU ACHIEVE
Everyone has limits and everyone in the spoonie community and/or chronically ill community (because not everyone ID's as a spoonie) should be aware of their own limits. It's not easy. When you get diagnosed, you're not exactly handed a pamphlet called Managing Your Expectations And You. Learning to pace yourself is a must, but so is remembering to be proud of what you manage to achieve. You and should be proud. However there will always be people who want to then use those achievements as a way to play the sick Olympics. You're able to achieve x therefore they are sicker than you. It's not just annoying to hear, but it feels like what they're doing is invalidating your struggle and the work you've put in. It's times like this when you want to quote Hamilton and ask: "Why do you assume you're the sickest in the room?" There's nothing to gain by being the winner of the gold in the sick Olympics, and all it does do is take time and energy away from what you're hoping to achieve. My advice is to acknowledge and be proud of what you've achieved. It's their problem and not yours.

2. ACKNOWLEDGE THAT YOU DON'T HAVE TO LIST DIAGNOSIS
A lot of places where the spoonie community is big, like Tumblr and groups on Facebook, always assume that everyone there will be sharing the same level of information about their conditions. You don't have to share anything you don't want to. What feels okay for me, might not feel okay for you, and that doesn't invalidate your status as a spoonie or as someone with chronic illness. You don't *have* to share anything. You will always come across people who will assume that because you don't share everything that you must be low down on the rung of the sickest person ever. Sometimes it's a battle worth fighting, but depending on how comfortable you are with sharing that stuff, sometimes it's not. Personally, I do share diagnosis in certain places. I don't hide it, but I also don't advertise. I've had people tell me that because I do happily call myself a disabled (and sick) author I'm therefore obligated to give everyone who asks my medical history. I get asks on Tumblr about oxygen usage, get asks about my wheelchair. I'm not ashamed of either one of them, but I am, just as you are, entitled to my privacy. No one is owed that.

3. ACCEPT THAT THERE WILL ALWAYS BE PEOPLE WHO DON'T GET IT
It's something a lot of people say, that as you grow up, you care less about what other people think. I don't know who these people are, but I'm not one of them. I've tried various ways to just not care, but I feel like it's so engrained in me that it's just not easy to let go of those worries. Having said that, part of being sick is realising that it doesn't matter what people think of you. There will always be people who want to play the sick Olympics, or who think you're faking, or who think you could do more or less of this or that. And those people don't matter. They don't. Their opinions of you, your work, and your writing journey are not important. You don't need to act a certain way or do a certain thing for people to treat you and your work with the respect you deserve. Best advice is, don't engage with people who want you to justify how you can do writing, but not a "real" job. Or people who want to play that I'm the sickest ever card. That thinking is on them and not on you. You're doing awesome, keep going.

So there we have it, my three tips on how to avoid the sick Olympics. It's something you're gonna come across and it's something that sadly doesn't seem to be going anywhere. But, as I said, the majority of the spoonie and chronic illness community is welcoming, open arms and happy to be of any help to you. We all know what it's like to either be born sick, or to have become sick later in life. We all have different experiences and we all have different needs, but we should be working together to help each other. And in the whole, the community does. As already stated, your mileage may, of course, vary.

Follow Joey here on her blog, on Facebook or Tumblr, to be kept up to date with the latest news regarding Joey and her books.

From Joey's Instagram: Bedrest edition

Another day of bedrest but managed to get up a little this morning and plan to try and write tomorrow as well as getting the video for the 21st finally up and captioned! Hopefully I will manage it! #beingawriter #joeywrites #indieauthor #writerlife #authorsofinstagram #writing #chronicpain #chronicillness #spoonie #surgery #chronicillnessproblems #bedrest

A photo posted by Joey Paul (@joeybug) on Jun 23, 2016 at 5:42am PDT

[IMAGE DESCRIPTION: A square photo showing the view from Joey's bed. The window frame is slightly open and through the window you can see an old row of buildings with sun shining. At the end of the bed are the handles of a walker. Caption reads: Another day of bedrest, but managed to get up a little this morning and plan to try and write tomorrow as well as get the video for the 21st finally up and captioned! Hopefully I will manage it!]

I may be on #bedrest bug I'm still getting some #writing done today! #beingawriter #joeywrites #indieauthor #amwriting #authorsofinstagram #writerlife #authorslife #surgery #spoonie #chronicillnessproblems #chronicillness 😃👍📝

A photo posted by Joey Paul (@joeybug) on Jun 24, 2016 at 2:24am PDT

[IMAGE DESCRIPTION: A square photo with part of a pyjama covered leg in the bottom right hand corner. The majoirty of the photo is a tablet screen, showing the words: "Tara? I apologise if I'm calling at a bad time.." text moves out of the picture and then below it reads: "stiff and formal." The caption reads: I may be on #bedrest bug I'm still getting some #writing done today!]

So another day of bedrest and I had planned to write a little but the pain and nausea are too much to manage. I plan to spend it reading a good book instead! #beingawriter #joeywrites #indieauthor #writerlife #authorsofinstagram #writing #reading #amreading #chronicillnessproblems #chronicillness #spoonie

A photo posted by Joey Paul (@joeybug) on Jun 25, 2016 at 7:42am PDT

[IMAGE DESCRIPTION: A square black and white photo showing a spotted bedspread with items piled up on it. To the right is a Kindle showing unreadable text. In the middle is a sheet of A4 paper, on which rest a small square notepad, two pens and a bulldog clipped bundle of note cards. The caption reads: So another day of bedrest and I had planned to write a little but the pain and nausea are too much to manage. I plan to spent it reading a good book instead!]

Another day of bedrest but I managed to do some #writing! A bonus chapter has been written and I'm feeling good about it! Might even manage one tomorrow too! #beingawriter #joeywrites #indieauthor #amwriting #authorsofinstagram #writerlife #authorslife #surgery #spoonie #chronicillnessproblems #chronicillness

A photo posted by Joey Paul (@joeybug) on Jun 26, 2016 at 5:08am PDT

[IMAGE DESCRIPTION: A square full colour photo with a small brown notebook opened to a page balanced on a bluetooth keyboard which is just visible at the bottom of the photo. The page focused on the notepad reads: DTEE 6 X PAGES 24/06/16 and three lines below it: LO 1 x CHAPTER 26/06/16. The caption reads: Another day of bedrest but I managed to do some #writing! A bonus chapter has been written and I'm feeling good about it! Might even manage one tomorrow too!] 

*I am still learning about image descriptions and would welcome any feedback or insight so that I can make my photos and images accessible to everyone.  While for the time being I have focused on my Instagram feed, I will be adding image descriptions to all my images spoons permitting. Please do feel free to add your own should mine not be enough!*

Spoonie Writer: Worrying About The Future And Your Writing

Spoonie Writer: Worrying About The Future And Your Writing

As long as I've been a writer, I've been sick. Even before I was medically retired and writing became my job, even when I was writing as a teenager in school, I was still chronically ill. I hadn't embraced it the way I do now because this was before the wonders of the online chronic illness community. I have a lot of respect for my fellow spoonies and the ways in which they have helped me. However, as I was saying, I've always been sick as a writer. I have never known any other way to be a writer, I've always needed to move my schedule around and fit writing stuff inbetween the hospital stays, the stuck in bed days and the days when I just can't. I'm not saying that because I want you to look at me and say "Oh wow, she never got to live a different life", or to throw myself a pity party and be all "woe is me. I've always been sick". I'm telling you because my writing journey has been affected by the fact that I have, for as long as I can remember, been chronically ill.

When I was still in school, before the Fibromyalgia and M.E were in my life, I wrote a lot. I wrote poems, I wrote short stories and I did all that because I had a passion for the written word. I loved choosing my pen, my ink and paper and letting all the scenes in my head out into the world. To me, a big part of writing was the act of picking up a pen and actually, y'know, writing! However, things changed after school and my diagnoses. I found that writing hurt. It wasn't the good hurt either, the one where you had written and written and your hand was cramping in protest. I mean, it started like that but eventually the sentences got shorter and the bulk of what I could handwrite was interjected with breaks every few minutes because the pain was *that* bad. I eventually had to accept that I would no longer be able to handwrite my stories because I thought a lot faster than I could ever write. It hadn't always been like that, but it was one of those things that I had to let go of.

I adapted and started to type, which is what a lot of writers - spoonie or otherwise - do. It's so much easier in the world of the internet and all this technology to write with a keyboard. Having been typing for as long as I could form words, I am lucky enough to be able to touch type with some speed. It was a change that a lot of people would look at and say, "your point?" My point is not that I had to make this big change; after all, everything that was handwritten would eventually get typed into my computer anyway. My point is this: when you're chronically ill, you adapt your life around your conditions because if you don't adapt, you have to stop doing things you love.

About a year ago, I developed symptoms that were worrying to me, though not all that uncommon for people with my conditions. My legs would tingle and I'd be unable to bear weight on them. I was becoming more and more reliant on a wheelchair to get around. It was hard for me because I had always kept some level of mobility through my own terms, but now it was all different and I was reliant on being pushed, pushing myself, or using my electric wheelchair to get around. It wasn't how I wanted to be, but the fact that my conditions had gotten worse wasn't all that unexpected. I have been "lucky" in that for a couple of years prior to this new symptom, I had been having very few flares, relapses and new problems. It seemed that my conditions were just getting worse and once again, I adapted.

Which brings me to the point of this piece: I have started to show similar symptoms in my arms. The thought of losing the use of my arms and therefore my hands terrifies me because without the ability to type, I would become very silent. I use my keyboard to do so many things, writing, commenting, research and all of that. The only thing that I keep thinking is that I will find a way and adapt. I'll have to. That's just part of having a chronic illness and/or disability. You find a way to adapt. I know of some people that are bed bound, and they still are as active as they can be doing what they love. They have adapted because they *had* to. A friend of mine is bed bound and is still very active in writing. She has gotten the technology that will enable her to continue writing despite the fact that she doesn't always have use of her hands.

The joy of living in the age of technology means that even if we have to change how we get the words onto the paper, there are always ways of adapting your life so that you can continue to do the things you did before. The fact that things have worsened with my conditions doesn't mean that I have to give up what I love doing. There are voice recognition programs that will allow me to talk and the words will appear on the page. I've used them before and while they take some getting used to, they're not out of the realms of possibility. Just because I'm chronically ill, it doesn't mean that I'm any less able to do what I consider to be my career. I make the times when I'm well enough to work count, and the times when I'm not, I try not to beat myself up about it too much. After all, I didn't choose this for me, but I also can't change that it's happened. So, even though I'm able to type these words myself, it doesn't mean that I can't adapt and change the way I work in the future should the need arise. I can adapt, and so can you.

Follow Joey on Facebook or here on her blog to be kept up to date with the latest news regarding Joey and her books.

Spoonie Writer: Learning To Say No

Spoonie Writer: Learning To Say No
 
When you're first diagnosed as having a chronic illness and you face the prospect of having  to live your life counting spoons, you quickly realise that there are going to be some things that you just can't do no matter how much you want to. When you add in a job like being an indie author into the mix, you'll find yourself running into problems as you try to achieve all the things you need to do. What do you do when your career needs you to do something, but your body is saying "nope!"?
 
The first thing to do is to face the fact that you will probably never go back to the person you were before you got sick, and realise that if you're going to accomplish things on both your good and bad days, you'll need to have some idea of just how far you can push yourself before it all comes back to bite you in the arse. For me, it was a big thing to accept that despite how much I wanted to take part in a blog tour or convention, I just couldn't do it all. I had to learn to listen to my body and I had to learn that I could say No.

If you're anything like me, you'll know that saying No to someone can feel like a bad thing. It can feel like saying no is telling that person or that opportunity that you never want their help again. I know in reality it isn't like that, but it's taken me a long time to get to this point. Before, saying no just wasn't something I felt comfortable doing. It felt like I was being rude, like I wasn't grateful for the opportunity being offered to me. But of course, it's not that at all, it's about knowing that if I do this thing or this promotion or push myself to write those chapters, in a few hours I will pay for it dearly.

My body will rebel and I will end up spending precious time either in bed, or worse, in hospital where I'm too unwell to do anything. The feeling of wasted time, for me at least, is worse than the feeling of saying no. So over the past few years, I have learnt that sometimes you just have to bite the bullet and tell someone that it was great to be thought of, but you just can't commit to that event. It's not a bad thing, it doesn't mean that you've let someone down and it's all part of being a spoonie.

There will be some people who won't see it that way, and honestly, those people are not worth the worry and anxiety. Those who understand will see that you need to have time to rest, to take some time away and that you are unable to commit to something that may make your condition worse, cause a flare or land you in the hospital. No one else can tell you how you feel, it's your body and your conditions and you will get to know them oh-so-well, and it's about learning to read the signs and know that although you are desperate to do a book tour or a book signing or a guest blog, you just can't at that moment in time. As someone more insightful than me said, the people who matter won't mind and those who mind...they don't matter!

Follow Joey on Facebook or here on her blog to be kept up to date with the latest news regarding Joey and her books.