As you know if you read a few posts down, due to my health I had to close my larger chronic illness niche blog. It was just too hard to sustain with any consistency at all. Pretty much the same deal with everything really.
But I didn’t mention I haven’t really been able to read or write either. With all the symptoms that started since my disability, reading is a lot of effort. I can do it for very short periods of time, but I am also constantly exhausted so finding that short period of time I can focus is exceedingly difficult. So my To-Read pile has sort of just been lingering for quite some time now. And I despise this because I was such an avid reader.
It is similar with writing a novel. You sort of have to be able to focus. Know where you have gone with the plot and where you are going. But I just do not have that sort of focus, concentration or energy. I do have ideas and plots galore. My brain doesn’t stop thinking about novels I am in the process of, or was in the process of. And it doesn’t stop brewing new ideas.
I have hoped things would improve. That is why I kept my blog and social media open as long as I did even as it declined as it did. But things actually just persistently got worse. So it is what it is. You have to learn to let go sometimes. And you have to do the things you are capable of at the time you are capable of them- focus on those. Not on the things you can’t.
All I have really been able to focus on is art and at least I have that hobby because something to just through yourself into helps with pain management. And from going bonkers. And I am extremely thankful I have One hobby that I can still focus on. This one being tactile doesn’t require the same skills so I can still do it. I do have a persistent hand tremor which is why I do expressionism- fine detail is not my forte.
This is my most recent acrylic painting. I just started with acrylics, so it is a learning curve.
I dig it. I think my skills in painting are improving and besides that I really do enjoy the learning process. I am extremely thankful I have some form of creativity to dig into. I need that outlet.
November writing month
It is NaNoWriMo where many authors write 50k words in a month. I have participated for more than a few years. Just not recently. Because it would be moot. I couldn’t hit that target but also… I can’t get Near that given I simply have no focus to write when I try.
It has been on my mind all month though. Because I really love doing NaNoWriMo with other authors. And it reminds me how much I love just digging into a novel and forgetting the world for a moment. Honestly, though, I am just having a lot of trouble staying awake during the day. And getting around. It just takes a lot of effort to do anything. It has been fundamentally necessary for me to decrease my activity level on a daily basis. And of course, some days, no activity at all, depending. I am in complete energy conservation mode.
I thought maybe if I could sort of plan my day more, I could utilize the energy I have… and fit in a really small writing time. But I can’t predict how much downtime I will need in a day and often it is a LOT. Using the computer for too long, as it turns out, triggers my vestibular symptoms so there is that too. And I have to fit in a small amount of housework at least 3 times a week. Just to tame the chaos around here. And that is exceptionally draining. But necessary. So really accomplishing 1 thing a day is a real win.
Right now, I am thinking about how to properly get around safely. I use my cane. But I need a bath bar in the tub. But we can’t install one with the walls as they are. But we thing we can do one on the bath edge. ( I have baths and what I have been doing is pulling myself up with the tap which is not a good thing) A railing for the steps outside. Those spikes you get on your shoes for ice because of my lack of balance in addition to the drop foot on my right side- sort of not cool with ice. That is what I am currently thinking about. Not falling down because when my leg gets weak… I can’t actually get myself back up by myself.
But, then I think about what I used to fill my day with as a pain distraction; namely my blog and fiction writing and reading. And I can’t do any of those really. Not without a whole lot of effort. And definitely not consistently.
It sucks. Not going to lie about that. But I’m not going to have a pity party about it either. Just because functionality sucks now doesn’t mean I won’t regain some in the future… or find other ways to adapt, which is usually the case. Just try to find pain gaps and find new ways to function around things with a lot of rest breaks. New tools to use as well. Like maybe writing with some voice program.
The irony
Ironically, my insurance company asked for an update, and I did inform them I make some side income freelance writing. And then they asked for More information- of course. And That information- as you can imagine was far more skewed and limited in my possible answers so that is suggests you can do a whole lot more than you actually can.
Which is really not funny since I can barely do anything I just happened to get paid for the short 1st person 500-word articles I write for a chronic illness support site… in the amount I am capable a month- none if it happens that way and sometimes 3 if I really push it.
But they will naturally make a mountain out of that molehill. Even though I can’t drive. I can barely walk. I have a hard time even staying awake and focusing, and reading, and writing and so on and so forth. But… well, I do make a side income that helps me eat since disability income pays next to nothing. And they Will definitely be dicks about it. And I will definitely have to be a dick back.
And it infuriates me that I already foresee that to be true. And it infuriates me because I am already pretty depressed and freaked out by my lack of functionality. That I have to wait to see my neurologist about while it gets slowly worse and freakier. I really do not need to fight with those dicks all over again. It is exhausting. And I really do not have the energy for it. And they count on that. They wear a person down. But I learned my lesson with them the last time. That is what lawyers are for, people. Always remember that. They will screw you over. It is in their job description. You can be suicidal with pain (as I was) and they will force you back to work- because that is what they do. They do not have your back. You have to have your back because they do not care about your physical health, your mental health, your emotional health or your rights. So someone has to. So fight on if even if you are tired, weary, fatigued and in pain. Find family to help you fight on. Because those insurance people want you to just give up. And some of the tricks they use are absolutely vile.
But enough about them… that is a problem for another day. And I will not let it infuriate me in the moment. Or worry me before it has even happened even though statistically with them- pretty sure it will.
Anyway, I can’t mope about the lack of writing for the last few years or more. I will write again. I think. I hope when I see my neurologist something will change and then I can somehow adjust and pace my day again. Without so much fatigue and the need for sleep over and above the pain. I just have such as strong desire to write novels I have brewing in my brain but the lack of the actual ability to focus or the energy to spare. But as I have written these over days it did occur to me that voice software would help me write- less effort and I can lay down as well. Maybe I will have to try something like that,,, see if I can focus enough. It may be worth a go? I have never thought about that. With our cyberstalking/hacker/nutjob issues I bought an actual old school typewriter to prepare for writing again. Just have not done any actual writing due to these health issues. So I would have to secure a computer for voice software- or just secure the files for now as I go along on external sources. But the wait for specialists is unfortunately Long due to the pandemic so it is going to take a very long time.
The Wyrd 
I think to write anything you could use voice to text software. It is so much better than it used to be. AS for the cyber bully, to write an article or novel you don’t need to be connected to the internet. Once you have the software in place you would only need to go online for publishing. I am sure the software can be purchased from somewhere like Best Buy and doesn’t have to come from the internet. I could research the options if you like. There are devices that are for writing exclusively and have the option of speach to text in them. I recently came across one, while surfing. Let me know if you need help with anything of this nature and I will do what I can.
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Thar would be great!
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