Stella's Journal

[Stellakin]

Hi there!

 

As some of you may know I have a rather life-halting life condition. With the ups and downs of my sickness; and some days being better than others; it's tough to plan a health and fitness routine ahead of time because I never know which days I might feel awake, or which might be spent bedbound. Soooooo... instead I thought, hey, why not set myself goals each day, as and when I can, and track both my fit days *and* those that I let myself rest? I have a habit of feeling unproductive on days when my body is just moaning "no" and pushing myself, only to make myself sick; so I think I'll try to analyze each day and to be more forgiving of myself; after all, I've been told by specialist after specialist, cardiologist after cardiologist and doctor after doctor to "Rest!"

 

So here is my little battle-plan!

If I need to rest, I'll rest.

If I can muster the strength to do some stretches, or to walk to the end of the road and back, I'll do that.

And if I have one of those rare days where I feel alive again, I may even manage a long walk, jog, or some yoga.

 

Hopefully I'll be able to look back at this and see the progress I've made, the times I've listened to my body and, better yet, my progress throughout treatment as I began to reclaim my energy levels and body. 

 

Therefore, here are my daily insights into what I'm up to, and my inner ramblings amidst my health concerns.

Thanks for coming along for the journey!

[Stellakin]

Heeello there, everyone! As far as first entries go, I'm pretty proud of today; 

 

For the first time in weeks I had a decent amount of energy - I haven't a clue why or how, but believe me, I am not about to question it! I embarked on a huge trekk in the woods nearby, equipped with nothing but iced coffee (*cough* mana potions *cough*), my much neglected trainers (or, you know, my boots of plentiful stamina), and a childlike curiosity that I've been struggling to nurture as of late. As silly as it sounds I spent so much of it just running around and swatting at branches. I'm such an outdoorsy person and having been holed up inside lately has given me aaaaall kinds of cabin fever.

 

So far, morale is high! About to start a course of new medication tonight so will update on how that goes. Going to attempt some really mild stretches and yoga before bed, whilst I can, although I have, admittedly, overdone it a tad (no regrets!). No better way to end the day than snuggled up in bed watching Forza Horizon 3 videos and playing Skyrim (to all the female gamers out there; try skyrim romance mod! Pretty great voice acting!)

 

Anywho, I am now officially a very happy little elf! Lets see what tomorrow holds.

  

[Stellakin]

Aaaaaaaaaand then came The Fall...

 

So yesterday I felt more energized than I have in so long, and whilst I normally have several heart episodes a day, I only had a few very mild ones yesterday. It felt like some sort of miracle. It had been so long. And so, excited and worried that if I questioned it for too long then it might well disappear, I headed out and excelled myself in a way I haven't lately. Metaphorically, I feel it was the equivalent of bursting out of the tavern doors and rushing out into the wilderness, hacking at any enemy that came my way, clearing dungeons, singing gleefully.

 

A wise friend once told me "if you can learn to control your 'high's in life; to cap it and restrict yourself just a little so as not to overdo it; you'll find you don't nosedive quite so badly in the oncoming fall"

 

And ladies and gentleman, following my escapades yesterday, I've been left feeling a little like...

 

 

Should I have taken it a little easier?

Yes.

 

Do I regret a god-damn thing?

You bet your sweet-*ss I don't!

 

Mentally, I feel so much better equipped to deal with my health concerns now that I'm back to square one; in bed, feeling faint and dizzy again. I think that I greatly underestimated the mental impact of being bed bound to this extent, so frequently; I am not just fighting one crippling boss monster - its more akin to fighting two; the "physical" demons, and the "mental" demons; the heart condition, but *also* the mental impact of it.

 

Looks like I just need to switch up my strategy a bit.  

 

Anywho! For today; exhausted but still managing to find the will to smile nonetheless! Will try some stretching and to get up a get some fresh air every few hours, even if I need my partner to assist me. Some days you win, some you lose; I'll allow myself today (not that I have a choice, but if I can convince myself I do, then hey ho) and begin working on my strategy for the up and coming 4wc! 

 

Thanks for reading guys,

Watch the skies, travelers

Stella  

[Stellakin]

Diiiiiiiiid I make much progress today?

 

But I'm not down and out about it. And here's why;

Given my condition there are days where I feel tired and sleepy and struggled to get out and about, finding myself needing to sit down and rest every hour or so. There are also the rare days in which I have quite a lot of energy, lasting a few hours at a time, and can get out and about. And then there are the rather poor days, in which I find myself practically bed bound. 

 

I'm sure you can work out which today was.

 

But! And its a big but; something I'm slowly coming to realize is that progress, at least in my current state, cant be measured on the same scale. I cant say "if I walk an hour today I have done "good"" because some days, an hour is going to be a real challenge. But then others, on those rare instances, it might be a walk in the park! I might walk four! And then I might find myself back in hospital or in bed and, well, not going to be doing much trekking in the woods then, am I? 

 

I need to start taking this more day-to-day. I love organization. I have a desk full of notebooks and stationary; full of stationary sets that match each notebook! I have eons of bookshelves organized by colour, by alphabetical order, by favourite author, by genre. My gaming setup is meticulously planned and my comic books always placed back on display, in order. I love organization. I love feeling productive. Back before I took ill, I ran miles and miles. I would measure my time; I would strive to beat it. Back then, I could almost always count on a steady increase in distance over the course of days, weeks or months.

 

Now that cant work because one week I could do hours and the next I'm back to measuring myself by mere minutes again.

 

Therefore, at least in my own mind (for the sake of my own sanity) I'm going to try a different scale. Rather than judge myself based on the distance I manage to walk or how long I do it for, I'm going to let the amount I do be directly correlated to just how ill I am on that day. After all, with an illness like mine you really, really have to work with it, not against it. How much did I challenge myself?

 

Did I do enough to benefit my body - but not so much as to damage it? 

 

That's what's most important now.

 

So overall today, I pushed myself a little, kept myself sane, and will take my medicine and hope to wake up tomorrow able to do more.

Wish me luck guys,

 

[Stellakin]

I-am-totally-about-to-get-carried-away-and-go-off-topic-and-nerd-out-on-yall-so-just-hold-on-tight

 

Current mood = 

(yes that is moog)

 

So today was one of those days in which I both had energy, for once and where I had plenty of great things to do. My new gaming mouse got here (my other one is great; bulky thing, has a bunch of buttons to map alternate functions to which works great for my skyrim survival mods, etc); but I play a lot of other games on PC that I felt I could really do with less additional functions and more lightweight precision for. And sooooo... welcome to my (wo)man-cave...

 

Spoiler

 

 

Looks so strange... I mean, it has this gaping big hole in the middle. But I've given it a go on a few games and its so lightweight, the buttons sound almost like a mechanical keyboard (that sound is such a guilty pleasure of mine - please tell me there's a fellow dork out there who feels the same way?) and I love it. Really good quality too, and nowhere near as expensive as my other ones. And something about it gives me a weird Star Wars vibe, but maybe that's just me...

 

And I randomly came across a bunch of comic books that I got last year from various conventions and never glanced at again! I was actually looking for my sheet music... which I failed to find... but nevermind that. Currently snuggled up with the first few episodes of Loki; Agent of Asgard, in my fluffy pink winter socks. So lovely. Oh, and a few of the parts I've compiled together for my cosplay arrived today; Got a few I'm working on or have completed so won't spoil too much, but it's looking good so far!

 

On a separate note, I've put my very first challenge up and my goals are nice and small; ones that I can do given my heart condition. Which reminds me - I have two appointments tomorrow, and a bunch scheduled in the next two weeks so hopefully by the end of this challenge I should be at least partially through my treatment - perhaps my next, or the one after that, will even see my in a good enough state to go out jogging again, or surfing!

 

       Conclusion:

• Managed to be out and about for hours today
• Feeling positive about recovery and treatment
• Came home to tons of nerd treasures
•  This: 

[Stellakin]

Sleepy therefore today's post will be pretty short;

Had tons of energy

Had a great day

Barely sat down all day for once -

and bloody well proud of it!

Karaoke in the car like a queen

Annoyed driver

Got downgraded to the back seat

And a cardiology appointment tomorrow so wish me luck!   

[Killyourfeet]

Nice! Sounds like you've had a few good days!  That's a pretty sweet looking mouse (I love clicky-buttons too  Not sure if that's the right word). Happy gaming!

[Stellakin]

Thank you, @VintageCustard! And phew, so I'm not the only one!

 

So another short entry today because I am so bloody sleepy;

* What even is energy?

* On the plus side, had a pamper day!

* Restarted Black Flag for the lolz; forgot what an amazing game this is! The graphics still hold up!

* Currently look like a ghost with my hair-mask, face mask, lip mask and under-eye masks on

* My dog took one look and ran away.

 

[Infinity.Creates]

How did your cardiology appointment go?

[Stellakin]

So I wasn't going to post today, partly because my mind's a bit jumbled, but @PhysicsObeysMe, your comment reminded me that I probably ought to; after all, this thread is here for accountability, to put myself out there no matter what. Therefore...

 

My appointment showed that my heart situation is going to continue, but that there are huge implications in my health elsewhere in the body atop this; basically the heart illness persists but is causing only about 20% of my symptoms. On the negative side, that means something else is causing 80% of my life-debilitating symptoms - and it could be anything. Except not anything, because almost every common or mild sickness was ruled out before they worked out to check my heart. There are a lot of scary words in the mix now and I've been rushed from scan to scan. 

 

My options now are; could be bad. Or could be very, very bad.

 

Or it could, I am hoping and praying and crossing my fingers, be something silly that was overlooked and will magically be cured overnight.

 

Maybe.

 

I hope..

 

  

 

Struggling to stay optimistic at the moment despite how I usually do, so might not be on as much tonight and tomorrow. I have an appointment on Monday to just sit down, talk about all the scary options, and arrange where on earth to go from here.

 

Wish me luck guys!

I'll be back to my strong-spirited, happy self in a few days. Promise. x

[Infinity.Creates]

That's sounds really scary, and I'll also be praying for you, and that it will be something which can be easily resolved. You have zero obligation to return to us so optimistic, but I look forward to it! Take some time to yourself if you need it, you are your first priority. 

Hopefully your appointment on Monday will go well and smoothly. All the love!

[RedStone]

9 minutes ago, Stellakin said:

 

Struggling to stay optimistic at the moment despite how I usually do, so might not be on as much tonight and tomorrow. I have an appointment on Monday to just sit down, talk about all the scary options, and arrange where on earth to go from here.

 

Wish me luck guys!

I'll be back to my strong-spirited, happy self in a few days. Promise. x

 

All my love and luck to you. So second for simple oversight - who knows? It happens! Meanwhile we're here when you need us. xo

[Stellakin]

Thank you, both of you! I just hate being in the dark, ya'know? Essentially I'm being sent to and from doctors and specialists in every field imaginable, all of which regard me with a kind of "ooh I feel so sorry for you and I'm also hugely confused by this medical enigma" haha! 

 

I've made a decision. I want to treat my body like a temple; put the right stuff into it, reduce any and all toxins, do consistent exercise, sleep at a good time; I haven't got a clue what "video game boss" I could be up again at the end of the day. I want to be well-equipped to deal with it. May or may not adjust my challenge quickly to compensate for that, haha..   

[Akari]

22 minutes ago, Stellakin said:

I just hate being in the dark, ya'know?

I know it very well. I didn't had any geat deseases, but when I was searching for an apprenticeship I had several sleepless nights. Not knowing about the own future can put a lot of pressure. Don't beat yourself up Talk with somebody you trust about your fears. Sure, that will not solve the proplem but it will make you feel better.

[Stellakin]

2 minutes ago, Akari said:

I know it very well. I didn't had any geat deseases, but when I was searching for an apprenticeship I had several sleepless nights. Not knowing about the own future can put a lot of pressure. Don't beat yourself up Talk with somebody you trust about your fears. Sure, that will not solve the proplem but it will make you feel better.

 

Thank you, Akari. That was actually kind of comforting to hear. I hope I'll have answers soon, or at least a direction to go in. How did that apprenticeship search go, by the way?   

[Akari]

3 minutes ago, Stellakin said:

Thank you, Akari. That was actually kind of comforting to hear. I hope I'll have answers soon, or at least a direction to go in. How did that apprenticeship search go, by the way?   

 

I'm doing currently an apprenticeship, but what I stll search is a place to sleep for next month. One week left to finally find an appartment I can rent. (No pressure at all, when you search an appartement in an area where are not enought appartments for everybody.) But the people from my enterprise told me: If everything goes wrong we have a couch for you xD

[Stellakin]

1 hour ago, Akari said:

 

I'm doing currently an apprenticeship, but what I stll search is a place to sleep for next month. One week left to finally find an appartment I can rent. (No pressure at all, when you search an appartement in an area where are not enought appartments for everybody.) But the people from my enterprise told me: If everything goes wrong we have a couch for you xD

 

Oh, eek! *hugs* I really hope that it all works out! Glad that the people from your enterprise are understanding though, haha! I'm hoping to get a new apartment soon too and man, the search can be difficult. Everything within my price range gets snagged up so quickly! Haha   

[Stellakin]

Theeee chaaallenge begiiiiiiinsss

 

I can not wait to see how I progress, as well as all of my fellow rebels! Feeling great about having taken the first steps in my journey!

 

I've also had some reflection since yesterday regarding my heart issues. Having read over and over my medical files and asked my GP a bunch of questions, it seems that yes, my heart is doing some strange things, but that the defect itself isn't in my heart. Ie. I don't have too many electrical pathways. I don't need a surgery. So yes my heart is acting strangely - but the source of those issues must be elsewhere, ie. exhaustion from something else, hormonal issues from somewhere else. So whilst the issue at hand could be anywhere in my body, I now know that when I feel tired and faint, I won't have a heart attack if I allow myself to push through it a little (which I was warned against before) This means that if I make sure to take things nice and steady,

 

I can indeed begin pushing myself to do the exercise I want.

 

Surfing? No longer off limits but must wait for a day where I feel strong.

Bodyweight exercises? They'll tire me out quicker than the average person but doing them will not put me at risk anymore.

Jogging or running? Might be crap at it since my body and muscles are so exhausted, but will not give me a heart attack.

 

Yes there are the scary words in the mix; "chronic" this and, of course, the Big "C" word. It could be that. It could be so much less than that. I cant let the unknown be scary. At the end of the day, yes it causes me to be tired but I can take control of that even a little now; if I feel faint, the worst that can happen is I faint. That is a bucketload better than "the worst thing that can happen is cardiac arrest"

 

I am going to look on the bright side.

 

I haven't been freed entirely, but my mood is essentially just:

 

 

 

I am going to begin walking. Jogging if I feel up to it.

I am going to go swimming in the ocean, take my board, see what happens.

I am going to start doing push-ups and what not, see how that goes. Even if I do one and then fall in a heap on the floor.

I am going to be happy; no sickness or condition is going to take away what makes me "me".

 

And whilst I haven't a clue what on earth is wrong with my body,

I am going to just let this blissful ignorance take over for a little while. 

Because the future can hold whatever answer it wants,

but I have the only answer I needed today;

"Yes, you can push yourself moderately; just be mindful of what your body tells you"

 

Low down;

"if it makes you tired, carry on.

If it makes you very tired, you can carry on.

If it gives you discomfort, faintness or pain..." then STAHP.

Okay, he didn't say STAHP. But you get me.

 

And I can live with that, for now.

 

Thanks for the support guys. Lets see how it goes.   

[RedStone]

10 hours ago, Stellakin said:

 

I am going to begin walking. Jogging if I feel up to it.

I am going to go swimming in the ocean, take my board, see what happens.

I am going to start doing push-ups and what not, see how that goes. Even if I do one and then fall in a heap on the floor.

I am going to be happy; no sickness or condition is going to take away what makes me "me".

 

 

THIS^^^ Everything this. This is how things get done. 

[Stellakin]

21 hours ago, ~RedStone~ said:

 

THIS^^^ Everything this. This is how things get done. 

 

Thank you, Redstone! I feel like it will still be a huge uphill battle (you know, coping with it mentally), but that I'm finally on the right thought pattern   

 

So another day, another battle, but feeling okay. Yet another doctors appointment (me and my doctor are now on a pretty neat nickname basis, fyi ).They've narrowed it down to three possible causes, one of which is more likely than the others; so I've been referred for all over bodily scans and a brain scan. It might not be those, these are the three most likely and also the three they'd most like to rule out - but at least it feels like we're on the right path to finding the cause of the fatigue and chronic pain. Aka. we've ruled out most specific organs/body parts; ie. my heart, my blood, *shockgasp* "inside-woman-baby-storage-bits" (jk, ovaries/womb), and lungs. Those three alone have hugely narrowed down the cause of fatigue, overall bodily pain, etc.

 

We dont have specifics but we do have a better idea of what we're dealing with now and it is beginning to look as though no surgery or medicine will alleviate me of my condition entirely. The good news is that there are lots of things I can try and that many people who find they're experiencing these types of conditions so young find the symptoms alleviating as time goes on. I was told I could begin exercising again a few days back, but todaaay I have been given the full go ahead to eat protein, to exercise, to do as I wish! He says there isn't any dangerous reason why not to. My heart works. I feel sleepy. I wont have a heart attack etc. I can go forth on my fitness conquest! 

 

I want to scale a wall. Physically, my body isn't up to that so it is as though beginning as a really unfit person again even though only a few months ago I could do these things, but I can push myself from Level 0 and rebuild from a blank canvas.

 

Essentially, I haven't died and respawned - my save has corroded and I'm restarting entirely.

 

But hey, that's better than it crashing and leaving me unable to do anything ,right? I can keep up consistent exercise; two amazing friends have even offered to help; one says he'll come interval jogging/running with me to be support, the other is up for joining me with yoga and bodyweight exercises.

 

Today I've been less-sleepy but in a lot of physical pain. I didn't want to take any painkillers in case they made me sleepy. It has been tough. But I plowed through the pain and went skateboarding; turns out falling off a skateboard hurts too. So if I'm going to be in pain, I'd rather it be because of that, haha!

 

I've been freed in a weird way. I'm happy.

Thank you, all of you, for coming along on this unusual journey with me. It means a lot when you post or check in with me.

Love you all, you dorks.

  

[Stellakin]

Toooodaaay a few friends and I drank lots of iced coffee, packed our bags full of a day's worth of supplies, and went adventuring in the woods - all day. And I'm not being metaphorical when I say 'adventuring'; despite all three of us being adults, we tried to really channel our gamer-nerd personas and see the wilderness the way you might in an RPG; a lightly trodden path disappearing into the forest canopy? CLEARLY ADVENTURE AWAITS! A hidden waterfall we'd never stumbled upon before? Probably a chest to loot somewhere! It was such escapism especially given the medical issues lately, but man I had a great time. And managed to tick off one of my current 4wc goals in the meantime. 10/10 would do this again. This makes me think, perhaps I should give LARPing a go... Haha.

 

To sum up: 

[RedStone]

OMG SOOOO fun!!! YES LARP!!!! DOCUMENT! PICTURES!!!!! AAAAHHHH!!!!!!!!!

 

*Flails

 

[Infinity.Creates]

That sounds AMAZING!! Pictures yes!

I really wish there was a LARPing community in the center of England. 

Did you discover any hidden treasure or long lost kingdoms?