Life in Leoland – The Reboot

2016-05-23 14.18.51So I’ve had this blog for a long time now, but between being diagnosed with chronic illnesses and becoming disabled, I ended up splitting myself between two blogs (Jet Black Ink here, and what was formerly The Secret Life of Fibro Boy). I did this for two reasons: 1) I felt completely out of touch with writing/reviewing, so didn’t want to/couldn’t talk about that and 2) I had the impression that I had to keep my chronic illness posts separate.

Now, I’m not actually terrible at blogging. I like writing, whether it’s conversational blather that nobody (bar me) cares about, reviews, musing, or serious talk about other things. But what I’m not great at, is separating content or keeping up with too many separate projects in different places. The attempt to keep the chronic illness posts away from Jet Black Ink probably resulted in this blog gathering a lot of dust and fading a little into the abyss. Of course, I managed to keep up with some reviews (mostly ARCs, for obvious reasons (mainly the crushing guilt of not reviewing them in a timely fashion, negl)) and so I didn’t completely stop posting, but I certainly wasn’t posting as I wanted to. I wasn’t really blogging.

But then on the other hand, I found that the way I was posting about my chronic illnesses and disability on The Secret Life of Fibro Boy actually started to distress me. Not only did I realise I was keeping these two areas of my life completely separate (which is so, so stupid of me: as if I can separate myself and what I love–writing, books, geeky, nerdy things–from the fact that I’m sick and disabled). This had a negative effect on me that I only noticed afterwards. I’d even separated my Twitter activity into @Leo_Cristea (Me) and @Fibro_Boy (My Illnesses). I was trying to be two different people. It… didn’t work. One of those accounts is now barren and bereft. Guess which one.

Originally I’d chosen “The Secret Life of Fibro Boy” to be a nod towards the fact that my illnesses are invisible, but before long, I think I realised it was more an expression of the fact that I thought I had to be secretive about my disabilities; that I couldn’t talk about those issues alongside the rest of me. That was a pretty damaging mentality.

That’s all out the window now: I’m going to blog every day throughout (Bl)August and aim for at least a weekly roundup of how things are kicking in Leoland thereafter. In the coming weeks I’ll be talking more concisely about chronic illness and Spoonie life, trying to give an insight into how to deal with it without losing yourself or the things you love.

This morning was hard

img_20160519_123929 (2)Today is a perfect example of what living with a disabling chronic illness is like. I now go to the gym 3-4 times a week (day on, day off, day on, etc) in order to try and get some control back. It’s painful, but it helps, physically and mentally. The gym days are easy: endorphins make me feel good, man, and I have more energy immediately afterwards, even if I am also exhausted. Oh, the logic of chronic illness. I’m always in more pain after the gym, but once I learned that life with chronic illness is all swings and roundabouts, you just… get on with things.

Today is an off day for the gym. I don’t like these. It’s harder to get up, because I’ve nothing solid and practical to get up for. I’m paying a subscription for the gym. I know what the gym feels like. Plus, if I don’t go to the gym, I will feel horrible and upset after, so, off I go. The mornings where I don’t head out, are the mornings where the pain and fatigue feel even more crushing and I’ll do anything to just crawl back to bed after breakfast. Anything to just get away from gravity and vertical existence and away, away, away to the soft, safe world of my bed.

Only… if I sleep too late (after 10am—thanks, body) then my chances of sleeping later that night will be greatly reduced. I sleep between 3-4.5 hours a night, so you can see how less sleep is not an appealing option. So, I dragged my sorry, aching butt up and out of bed this morning, struggled through eating breakfast with incredibly sore and painful hands, and managed to only go back to bed for half an hour, during which I didn’t sleep, but rather, rested with an audiobook.

Then, much to my own surprise, I got up, got vaguely dressed (noteworthy when such things are a massive drain on spoons) and even did a little makeup. Mostly just gothic eyes of doom, because I’m fed up of not feeling like myself, even at home. So, when I arrived upstairs, mostly dressed (Captain America loungepants count as real pants, okay) and not looking entirely horrific, I was already so tired it wasn’t even funny.

Less funny when today, being an off-gym day, is supposed to be a few hours of Japanese study. This is when it really begins to sink in that Spoonie accounting is so very cruel. Because I got dressed and took a little more care over my appearance, I found myself with very depleted spoons, even before I loaded up Wani Kani to do my massive bundle of kanji reviews.

I did them, made some ridiculous mistakes on items I already know, and thus demoted about a million items. Altogether, not a good start and it made me feel like a failure. By this point, I already knew that any chance of actually moving onto my textbooks was not going to happen. Great. Way to go, Leo. You messed up. Because I had the audacity to get dressed and try to feel better about myself, I hamstrung myself and screwed up my chances of studying much today. Fabulous. I spend the entirety of my afternoons writing, because that’s what I am. That’s my life.

So I moved onto a few other mostly-manageable tasks, trying to squeeze what time and productivity I could out of the morning’s study session. I use Memrise, went through two small reviews for two courses on there, and then wrote some kanji in a handwriting practise book. By then end of that, I just wanted to cry, because my hands hurt so much. I have an app on my phone for writing kanji, but… it’s not the same. I’m never going to genuinely learn to write these things if I’m never doing it on paper. Bad enough that, because I find that studying is affected by brain fog, I’ve not yet really got deep into my textbooks. It feels like I’m simply not good enough; that it will never be enough.

And Japanese is not the only language I want to learn. Not by half.

So I was upset this morning. Hell, I still am, only I know how to forgive myself. It doesn’t take away the fact that each and every day, I have to make a decision about what I’m okay to not get done, versus what I can let slip. The writing will always, always, always be non-negotiable.

The Japanese is way up on the list… but so is my self-esteem. And if that’s helped, even a little, by wearing Real Person clothes and a heavy sweep of black-as-you-soul eyeliner, then so be it.

I know I push myself hard—too hard. But… what else is there? This is me.

That’s all there is. Me and my ambition and drive and my dreams. Yes, I could benefit from a few days here and there where I just rest, but honestly? I don’t know how to do that. I bore very, very easily. Very easily. I don’t like TV, I don’t play video games and the more I read, the more I want to write. Sure, I’d be able to sit and read for a whole day, but you can bet that the following day, I’d be writing on my phone if my laptop wasn’t in reach or I couldn’t get to my desk.

But that doesn’t mean that being sick, being disabled, doesn’t suck ass. It does suck. It sucks so very fucking hard.

Mostly I get on…I don’t know. Something. Stubbornness, determination. Other things, too, probably. But mostly I think it’s just the fact that there quite literally is nothing else. I would have to fundamentally change parts of myself to become someone who goes easier on himself, someone who rests more and doesn’t end up tired to tears at least once a day. And I wouldn’t even know how to do that.

It felt horrible earlier, making all those mistakes and realising that because I’d chosen one task that uses spoons I’d have to sacrifice another. That’s hard. It sucks and it’s not fair and it’s hard.

But, I could spend my energy being upset with myself, being frustrated with the powerlessness to change any of these circumstances… or I can just take a deep breath, allow myself that single moment of sadness (because I deserve that; it’s mine and I am owed it by myself), before moving on.

It’s not a quick fix and no, it doesn’t take away the pain of it all. Physical or emotional. But it lets me keep moving, and I’ll take that.

How A Spoonie Gets Up

11147212_434661816713940_6938520122774742257_nEver wondered what mornings are like for spoonies? Well, here’s a little of it. Most people get to wake up, curse the alarm, and then get up.

Not me!

Off goes my FitBit, vibrating in a way that slightly irritates me wrist. Nice start! But that’s nothing compared with what follows:

My first thought is: what hurts? How do I need to move to sit up with least pain? How many individual mini motions do I need to effectively sit up? Imagine this kind of like a car having to do three point turns. There are more than three points! Most days I need to negotiate with myself, deciding whether to suffer more pain in my arms from hoisting myself, or to jerk my hips and legs more my shuffling upright. Nice start to a day, right?
Then I need to pee. Which is a pain, because there’s a very good chance that my legs haven’t reported for duty yet. But, having an irritable waterworks system means I really need to get all that juice out,  or risk inviting an infection. Not cool.
So, I’ve peed. Now I’m really regretting those initial spoons splurged on getting to the loo so quickly. But there’s not much choice. I need to hobble back to the bed and take my pills. By now, all the pain is going to have registered. Today? I couldn’t actually get out of bed, my hips and legs and were not playing ball. Nothing for it today but to leave my breakfast (which my brother brought in) on the side untouched and wait until I can actually sit up again. It’s over two hours since I woke up and I’ve only managed on bite of my toast and vegan chocolate spread–and this is chocolate we’re talking about.
By now, I know I’m going to have to just get up, and drag my ass upstairs to my (thankfully comfortable) desk. I can’t work easily from my laptop in bed, so if I am to get anything done in a day (writing, writing, writing), I need to get up to my desk. It’s a pain in the ass. It sucks. It’s punishing and hard and I hate it. But, I need to get up to the desk, and that’s that.
I have a really great set-up at my enormous desk. I have a huge-ass chair that’s padded and comfortable, and two pillows tied to a little table under my desk to elevate my legs. So as far as that goes, I’m comfortable at the desk. That’s one little piece of nice.
I fast-forwarded past the part where I actually manage to get up the stairs, didn’t I? Between bambi-legs and the unfortunate (but amazing fact) that my brother and I share fairly large three storey house, getting up the stairs is hard. It’s painful and tiring and takes a lot of concentration so I don’t just topple to one side, or trip on unsteady legs.
Safe to say by this point, that my pills haven’t had an effect. They don’t really work for the pain and that’s not the best thing. Obviously. Wake up, take pills, expect some relief…? Oh, wait. No, sorry, no relief for you this morning. Off you go, Leo; toddle on your way with no pain relief whatsoever.
Well, fine then, asshole.
Now it’s almost twelve and my day has definitely started later than I’d have liked. But, you get used to this. Some days I manage to get to my desk far quicker than others. Mostly, I spend my early mornings reading or listening to an audiobook. I’m especially looking forwards to having arranged the reading nook in the study so I can more easily curl up and read, but don’t risk falling back asleep if I need to stay resting for a while, like can happen if I need to stay in bed. But, last night, I got about two hours sleep, all restless and crappy, so it’s no surprise that this morning was harder. And I hurt more than usual.
Still, I’m at the desk, I’ve got my blanket and my green tea and my mood lamp is set to purple. I’m going to finish this, do my Japanese study, and then I’m going to carry on working on my book. I won’t want lunch for hours yet, because I’m so sicky and weak this morning. But it’s fine. I had casual raid night tonight with friends on FFXIV, and I need to make sure I’m OK for that. Yep, I need to plan my spoons and energy in advance for something I’m doing at 8pm tonight. It sucks and it’s frustrating, but thinking about the tasks and events of the day is just another thing I need to do in a morning.

I saw a fellow spoonie posting a chart of what her mornings entail, so it seems this is pretty standard for our level of spoonie. It’s not even really something I think about any more. Sure, I say it sucks, but really, it simply is. It’s not something I think about negatively. My morning routine, the three-point shuffle (and the rest, most days) of sitting up and trying to figure out how I am and what’s going on with my body, the literal dragging myself to breakfast or to my desk. The knowledge that today will probably be (yet another) PJ day. It’s all just The Way Things Are, and any thought or energy wasted thinking how much it sucks, is just that – a waste of time. So I don’t entertain thoughts like that. No point!

So to summarise, my morning looks something like this:
  • Wake up
  • Register pain
  • Figure out how to sit up (this involves trying to do damage control with what hurts most/least)
  • Manage to get out of bed
  • Hurry to loo before pain fully kicks in
  • Drag self back
  • Take pills
  • Oh, gods
  • Ouch
  • Ouch
  • Communicate with stomach
  • Relay stomach info to brother for breakfast if it differs from info given last night re: breakfast plans
  • Rest some more before breakfast
  • Try not to fall asleep and risk brain fog
  • (Inevitably do)
  • Have breakfast:
  • – if having in bed, do the three-point-shuffle again
  • – if having elsewhere, do the three-point-shuffle, get legs out of bed, stand, walk to table in the gaming room (let’s not even go there with steps down to the living room if breakfast is there, eh?)
  • Rest with book for an hour and hope I don’t get brain fog
  • Go to desk

This isn’t taking into account anything like actually getting dressed or whatever else. It’s a whole other story when that’s the case.