#generally more fatigued

[knightthyme]

how do you make things when you are horribly depressed and tired 24/7 and have no motivation to do anything. i dont have the energy to do Anything i enjoy i can get things done fine like necessities and eating and work its just the moment i Wanna do something i like its Over i Cant Do It. i want to draw so bad!!!!! i love creating!!!!!!! im incapable of doing it though!!!!! i am a wild animal running in frantic circles in its cage

[skys-archive]

Genuinely one of the best things you can do for your chronically ill loved one in a flare is feed them. Cook for them, bring them food, heat up leftovers for them. Seriously, I think food is something that's just so deeply rooted in care and comfort. It's hard to feed ourselves when we're hurting or fatigued or weak, and especially hard when it couples with depression.

It meanwhile so much to be given food when you're struggling.

[foldingfittedsheets]

My allergy injection this week has upgraded to officially burning and has also turned me into a floppy meat sack.

[perplexingluciddreams]

An average day in my life

I want to make a post about an average day in my life, with higher support needs nonverbal autism (with continued late regression), severe ME/CFS, low mobility, hypotonia, and other health things. I need a lot of help with most things, and due to my conditions my everyday life probably looks quite different than many people's.

I tried to write this several times. I started with AAC, but I couldn’t see what I just wrote, so I got lost and jumped about too much. This time I made myself some questions to answer, so I can still use AAC to help with the words, but not get so mixed up. Some of this is written with AAC, some is typed.

Where do I spend most of my time? How do I spend most of my time?

I spend the large majority of my time in my bedroom, and the most of that time is spent in bed.

In bed, the things I do is: watch DVDs or other things on laptop, edit AAC, practice/write with AAC, play games on phone, listen to music.

When I am not in bed, I am listening to loud music in my swing! Best way of regulation for me, keeps me calm.

What does my bedroom look like, how do I have things set up?

I sit up in bed with a big wedge pillow and two normal pillows behind me. I usually have my laptop, iPad, AAC device, DVDs and DVD player, and fidget toys (dummy, chewy, tangle) on the bed with me. I also have an overbed table which always has my glasses and case and juice bottle on it. I change around what is on the table depending on what I am doing at that time.

My LED lights in bedroom is usually on orange or yellow colour, with lights fairly dim. The curtains and blackout blind is always closed.

I have a fan and book light always next to my bed. I have a weighted blanket as my duvet, with five other varying types of blankets on top of it.

What are the other activities I do?

I have some other activities I occasionally do with help and prompts. Sometimes I go downstairs (with stairlift) to watch TV and/or do walking (physiotherapy, walking back and forth with or without AFO braces). I also do walking upstairs, because getting downstairs is a real challenge.

I rarely remember that I have options other than the things I see in front of me, so my parents have to give me choices.

Occasionally Mum ask me if I want to play cards, or do something else not normally do. It depends on how I feel and how loud my brain is, but sometimes I say yes.

What are the few things I can do independently on a daily basis?

I can put shoes and socks on, and take off, by myself! Only with same pair of stretchy shoes, just pull on. I do this several times a day because I wear shoes in swing, but not in bed. So it is a strong motor path.

I can change my hoodie/take it on and off by myself.

I can go between my bed and swing by myself, no prompt. I can walk to go to the toilet and change nappy (diaper) by myself.

I can brush my teeth as long as my toothbrush and toothpaste is brought to me. Sometimes I also need a reminder, or I forget. I am more likely to forget in the evening. I remember better in the morning because I don’t like the taste of my own mouth.

I can drink from my juice bottle and feed myself.

I can put DVDs in and out of DVD player and plug it into laptop. I can choose what I want to watch on a few streaming services. I can navigate a few social media apps, and can even post/message on a couple.

I can use the two different remotes to control my LED lights and sensory light projector.

What is my main struggles and difficulties in an average day?

I can't do much without prompts so these two things (bed and swing) is basically all I can do on my own (I can also go to the toilet without a prompt most of the time, but sometimes I get stuck). I struggle to initiate tasks and transition between tasks. I also can only make my body go on strong motor paths (movement sequences that I do over and over that is strong in my muscle memory), and there is only space in my brain capacity for a small amount of these motor paths at a time. Learning a new motor path and making it strong can make me lose a previous motor path (usually whichever is weakest at that time). This is very limiting.

Even with the pillows I have, it is not enough support. My body is too weak and floppy. My posture is bad and I slide/slump down so I am closer to a lying down position than sitting. I am always in a lot of pain, so I shift around a lot trying to get comfy, but it is never quite right. This is even more for when I sit in swing (or anywhere else), there is next-to-none support there.

If I could, I would be in my swing all the time! But unfortunately I have very low energy due to ME/CFS so a lot of rest is necessary. I find this hard because I need to stim and regulate constantly.

It is necessary that I spend much time alone in my room. If I didn’t, the smallest things would send me into immediate shutdown or meltdown. I can’t be around people much at all, even voices noises is too much. Usually I am only around people for the time when they help me with something, or bring me something.

When I do be around people, even with AAC it is very very difficult for me to communicate - I can do a handful of simple signs but anything more complex is so hard to get out that it usually has to happen when I am on my own in my room (like when I write a post like this). I am sad that I can’t have important or deep conversations with a person in the same room. Most of the important things I communicate to Mum is through Tumblr or WhatsApp.

I am oversensitive to so many things because of sensory issues. I am always dysregulated and I spend so much time trying to keep myself calm with swinging, with out making my health worse.

Often I am much too tired and sore to go downstairs so I am stuck in my bedroom most of the time.

I don't feel many body signals, like my bladder. When I don’t feel the signals at all (or not until too late), combined with getting stuck and not able to initiate go to toilet fast enough, I have accidents. This used to be something I could just about keep on top of, but with regression I no longer can manage it, so I have to wear nappies (diapers). This also adds another task (change nappy) that I have to use my limited brain capacity to learn and hold onto.

I am so fatigued and in pain from doing small things, and my body response to fatigue is often a big trigger for many sensory issues. This often becomes a downward spiral of fatigue response -> sensory bad -> big stim to calm down -> stim makes fatigue worse -> more body fatigue response, etc.

What is my morning routine like?

The first thing that happens in the morning (approximately 9am) is Mum or Dad comes to my bedroom with breakfast and medication. They help prop me up in bed with a big wedge pillow, and two normal pillow behind me. They give me my headphones (I wear almost all day, every day) and help put all my things around me on the bed. They also give me my toothbrush and toothpaste. In the mornings I can’t communicate much at all (only occasionally a few signs), can’t look at another person or do anything that would overwhelm me even a wee bit. It would cause immediate shutdown or meltdown. Shutdown is more likely for the morning time.

What is my mealtime routine like?

Mum or Dad (or very occasionally sister) brings me my food, and if it is a messy food then I put a tea towel over my chest so I don’t get covered in food. I eat while watching something usually, because I need the distraction to not get so stuck. Every time I get new meal or snack brought upstairs to me, I get a fresh bottle of juice also. The bottle is approximately 450ml, and I have 3 meals plus 2 snacks each day. I also get a bottle of water (not juice) brought up with evening meds, so I don’t get sugar on my teeth after I brush them.

I eat the same snacks at the same times every day. I have the same exact breakfast every day, and it has barely changed since I was quite young. I have two lunches, it is the same except for sandwich filling - I eat one for weekdays, one for weekends. Dinner varies, but there is still a predictable amount of choices, and often I eat the same dinner for the same day of the week. Mum sometimes tells me what is for dinner, if it will be different than the usual dinner for that day of the week, or if I ask. But I usually forget by dinner time anyway! 🤷🏻‍♂️

What is my bath time routine like?

With bath, Mum always helps. I need a lot of prompts. I get confused and lost with all the steps. But I have gotten better with practice, and each step have a stronger motor path now. I need Mum to tell me what part comes next.

I use a bath lift to get in and out of the bath.

I can do the physical washing part mostly on my own, sometimes I ask for help with my back. Mum gives verbal prompts and puts the right soap/shampoo in my hand or on washcloth.

Sometimes even with prompts, my brain confuses the steps or the motor paths, and my body does the wrong thing. This happens more recently, because when there is a complex sequence of separate (at least it is stored separately in my brain) motor paths, I can go into “loops” of do same thing over and over. Or my wires get crossed and I simply do the wrong movements.

I can also mostly dry myself (I sit on toilet seat to do it), but Mum always does my back. I can’t dress myself, so once I put on nappy by myself, Mum puts my top on. Then I walk to bedroom and Mum puts my trousers on while I sit on the edge of my bed (it is a better height that sitting on the toilet seat). Then Mum opens deodorant and clicks it up, I put it on myself.

What is my evening/bedtime routine like?

I have poor sleep, usually, and a really weird sleep schedule! My parents go to bed at approximately 10pm (sometimes Mum a bit earlier), and Dad always comes in to tell me goodnight. But I am awake much much after that (usually between 1-3am is when I finally go to bed for sleep). Sometimes I still swing when my parents is in bed, but I try not to swing too late because it can click and make noises.

I stay up and watch things, or play games on phone and listen to music. I often get stuck and cannot transition to go to bed, so I force myself awake for long after I could probably already go to bed.

When I finally manage to force myself to do the bedtime routine (or when my body is so tired it force me), I have to move all the things off the bed (some go on overbed table, some go to charge on the other side of the room). I also then change hoodie from day hoodie to sleep hoodie. I also move big wedge cushion and extra pillow down onto the floor. And put special cushion under my sleep pillow so it is at the perfect angle. Then, finally, I can lie down.

Sometimes I still go on my phone after that, usually to read fanfiction, if I can’t relax enough yet. I also rock back and forth on my side to soothe myself, I have done it since I was very young. I have to put my fan on to sleep, the noise and the feeling on my face is necessary to fall asleep, and it helps keep my temperature okay.

Then, the cycle of morning starts all over again!

[wuffgang-ameowdeus-moozart]

kaladin and renarin should bond over people constantly telling them to eat. they should found the let me starve in peace club together where they shit talk everyone who keeps telling them that all their problems could be solved by eating.

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom This is your friendly Doctor-Mom reminder to hydrate, put on sunscreen, take your meds, take a deep breath, unclench your jaw, eat whatever you can manage, and move your body a bit if you can. Oh and give yourself a great big hug from me! emojis: smile with three hearts, black heart, blue heart, masked, hug 12:12 PM · Jul 1, 2023

[rolandkaros]

ok that’s enough love and peace apparently because now elena has a back injury???????? FUCK

[orchideae]

I finally came across the name for it, thank god. Yelan is specialized in tricking! It's a form of acrobatics and martial arts movement that incorporates kicks, flips, twists, and similar. This has her auto attack sequence instantly make a whole lot of sense, and also yes, she kicks her bow and reels it back in with her line in that sequence (and yes, I had to point that out very specifically). Though certainly not an expert on this, I believe the twist towards the end of her auto sequence is called a raiz. Yelan, dear one, as an archer you must have decent strength in your core and arms, but tricking needs a lot of leg strength, jesus.

[soft-serve-soymilk]

More random head children musings (aside from the really sad one because that deserves better than a throwaway post):

Honestly I think it’s very fortunate that Dism’s team isn’t *entirely* comprised of lucid dreamers.

[whenthegoldrays]

sigh

[pansetta]

Maybe I should actually watch Secret Life now...

[rearranging-deck-chairs]

hot

[absentmoon]

i don't think fark can eat but he can like cooking. also.

[gothyanki]

All the fever dreams I remember from yesterday had bizarrely complex and cohesive plots/characterisation (this while I was too brain-fogged to function in the real world). Thanks for the inspiration, virus? I suppose?

[rolandkaros]

Sorry this is the same anon from before LOL i wanted to clarify something!! When i said incentivize tanking i meant it encourages players to show up to smaller tournaments that they don’t actually intend to put full effort into. Because like you said, the majority of 500s are right around slams/masters! So why would an Iga or Aryna want to go all out in those tournaments knowing that if they’re tired or hurt for the big ones they’re leaving points on the table. It’s just hard on the players all around

Sure, but I mean now we're just back to the scheduling issue which the one thing I think everyone can all agree on (season too long! why 6 mandatory 500s??). But still, I don't necessarily think there's clear incentive to tank 500s for the sake of satisfying the mandatory 6. I just don't think there's any motivation to tank tournaments that are going to count towards your point total anyway, and even if there is, then that's the player's loss (that is, if you're taking the effort to show up, you might as well play). From what we can see, it seems more common for players to just skip 500s entirely if they don't want to play, and accept mandatory zeros.

Of the current top 10 players, only Emma, Dasha, and Bia have actually played 6 or more 500s. I'm pretty sure more of them reached 6 through other means (e.g. Qinwen is allowed to count Ningbo because she did promotional events there, Jess and Elena both have multiple extended periods of inactivity due to injury which might add to their tally). But my point is, I don't think the WTA making it mandatory to play 6 500s even makes much of a difference, because clearly the players are willing to drop points and take mandatory zeros for the sake of scheduling. Which again, circles back to the rather annoying conclusion of "well...those are the rules I guess" when it comes to Iga losing #1.

But the truth is I really don't think any of these players want to tank. Even just going to a 500 event and losing in R1 expends a lot of time and energy. Plus, a lot of these players get first round byes, so they're usually having to stay until mid-week anyway. At that point, I think most of them would rather just skip, take the zero, and prepare for the next tournament. And even if they do go to 500s and tank...then I think that's kind of their problem? Because ultimately they're the one losing out on points. So it could be a strategy employed by some, but it really seems that most of these players prefer skipping to tanking.

[pooklet]

I see a fellow chronic sleepy bitch disease sufferer. A fellow Narcoleptic Sims 2 player?

Chronic insomnia/fatigue in my case! Yet may we all find shelter under the Sleepy Bitch Disease umbrella. 🙏