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perplexingluciddreams · 3 months

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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!

#ezra talk aac #from the chaos of my mind #autism #autistic #long post #very long post #mecfs #me/cfs #cfsme #cfs/me #myalgic encephalomyelitis #chronic fatigue syndrome #I hope to write more specifically about hypotonia and how it affects me each day AND in general throughout my life #high support needs #nonverbal #nonspeaking #aac

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myalgicencephalomyelitiscfstom · 9 months

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#spoonie #mecfs #long covid #chronic illness #cfsme

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violet-phoenix-nebula · 1 month

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Stigma and illness

"We do not want to reckon with a world that is merely unfair; where some people get sick, not because they did something wrong but because the world is unjust, and insofar as it is just, it's random.

"And so, we tell ourselves we understand, which too often means creating explanations that blame the sufferer. Stigma is a way of saying 'you deserved this to happen', but implied within the stigma is also 'and I don't deserve it, and so I don't need to worry about it happening to me'.

"Stigma can become a kind of double burden for the sick. In addition to living with the physical and psychological challenges of illness there's the additional challenge of having their humanity discounted. Think of the word universally used in English to describe Tuberculosis patients in the 18th and 19th centuries. They were called 'invalids'. They were literally invalid.

"People living with TB today have told me that fighting the disease was hard, but fighting the stigma of their communities was even harder."

...

"Finally, the origin, or perceived origin of a disease also matters. If an illness is seen to be the result of choice it is much more likely to be stigmatized.

"So for instance, people with major depression are often told to just 'choose to be happier' just as those with substance abuse disorders are told to just 'choose to quit drinking'. And some cancers and heart diseases are stigmatized for resulting from purported choice as well.

"Of course, this is not how biology works. Illness has no moral compass, it does not punish the evil and reward the good, it doesn't know about evil and good. But we want life to be a story that makes sense, which is why, for example, it was commonly believed up until the middle of the 20th century that cancer was caused by things like social isolation, parents were actually told their kids got leukemia because they hadn't been adequately loved as infants.

"If a clear cause and effect isn't present, we will invent one, even if it's cruel."

John Green - The Deadliest Infectious Disease of All Time

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puppyvenom · 5 months

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heyo!!!

if u have been around here / or me in the last few years i may know i run a blog!!! it is a painful labour of love where i talk openly about my illness and living as a disabled person. posts are few and far between (my last post before today was october 2022) but i really do put a lot of love into it. it’s my baby.

anyway, i dropped a new post today!!! i am yet to proofread because it’s late and i’m sleepy, but here she is :o) it’s an adaption of my sick4sick post from here from a few weeks back, just a little longer.

any feedback is appreciated, u should be able to leave anonymous comments on there if u want!! and check out my other posts if u have a moment!!

todays post!!

an important post from last year about the daily mail

#sludge speaks #mike crippleposts #disabled #disability #blog #blogger #blog post #chronic health #chronic illness #chronically ill #cfs #cfsme #myalgic encephalomyelitis #mecfs #chronic fаtiguе ѕуndrоmе #chronic fatigue #sick4sick #sick 4 sick

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lightningstitch · 1 year

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Really pleased with this finished quilt top after doing another great workshop.

Playing with colour and transparency.

#quilting #sewing #modernquilt #sewingcurves #textiles #design #cfsme #invisible illness #twicecutdrunkardspath #curvedsewing

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sourtails · 7 months

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is it better to be invited to something that the inviter knows you're too ill to attend so you have to say no, or to not be invited at all

#the worst part is the thing you weren't invited to being talked about in a group chat where you were the only one not invited #i'm fine (is definitely not fine)#🙃#i want to bring it up and be like hey if im not invited talk about it elsewhere but the anxiety and the energy #negative #disability #chronic illness #mecfs #cfsme

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crippledpunks · 6 months

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let me be tired in peace. i have chronic fatigue syndrome and fibromyalgia. my energy levels are markedly lower than the average able bodied person's. i do not regain much energy from sleep- the only times i have energy are when i am manic, from my bipolar disorder.

i am tired of having to push through being tired to do things that strain my body hand hurt me. i am tired of being forced to drink caffeine and take supplements and pills to "give me more energy" when all they do is make me feel like i'm running on fumes... while still tired. i am tired of having to force myself to do things i physically and mentally cannot because i literally do not have the energy necessary to do them

let me be tired in peace. let me be tired. let me express when i am tired and when i am too tired to do things. let me experience tiredness and let me choose what i do with that. let me choose whether or not i want to sleep, exercise, use medication, or stay awake, but tired, and doing low impact things.

#cfs/me #cfsme #cfs #chronic fatigue syndrome #fibromyalgia #cripple punk #crip punk #cripplepunk #cpunk #disability culture #actually disabled #chronic pain #disability rights #disability advocacy #our writing #about us

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a-queer-mess · 6 months

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it's that time of the month (the few days I'm unmedicated because I forgot to order my prescription)

#shush robin #adhd #actually adhd #chronic fatigue #spoonie #cfsme #mecfs #chronic illness #chronic pain #disability #depression #general anxiety disorder #cripple humour #ftm #trans

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running-out-of-spoons · 10 months

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normalise being so comfy cosy in bed

normalise having a little nap

normalise going snork mi mi mi

#shush robin #chronic fatigue #cfsme #mecfs #spoonie #im sleepy

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thesecretlifeofmecfs · 1 year

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#disability memes #chronic illness memes #myalgic encephalomyelitis #mecfs #cfsme #chronic fatigue syndrome #chronic illness #pwme

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florianatopfblume · 3 months

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🌧️💭🐓🍃

CFS bei Regen - Kopfkino und Zwerghühner-Philosophien!

#florianatopfblume #cwg64d #cwghighsensitive #cfs #fibromyalgie #polyneuropathie #histaminintoleranz #magendarmvirus

Trotz meines CFS fällt es mir bei Kälte und Regen schwer, mich länger wach zu halten. Die Schübe von Schlafattacken, Erschöpfung und Atemnot sind anstrengend. Sogar das Halten einer Kaffeetasse fühlt sich anstrengender an als früher das Schleppen eines Sacks Erde.

Aber ähnlich wie meine Zwerghühner finde ich auch in den kurzen Momenten der Wachheit in den kühlen und nassen Perioden des Jahres, wenn CFS, Histaminintoleranz, Polyneuropathie und Fibromyalgie mein Immunsystem schwächen und ein Darmvirus hinzukommt, das Beste aus allem für mich herauszunehmen.

Die Zwerge verkriechen sich draußen im Gehege unter dem Dach anstatt im dunklen Stall oder im nassen Garten. Und ich versuche, in den Phasen der Wachheit ohne Tremor, Schmerzen und nun auch noch Durchfall die Zwerge zu beobachten. Auch wenn ich im Sitzen aus dem Fenster schaue, mein lieber Mann extra das Grün der Umzäunung für mich wegschneidet, sodass ich freie Sicht auf die kleinen Hühnchen habe, während meine Zwergpudel meine Füße wärmen, kann ich sehr glücklich sein!

Was zeichnet mich aus, außer meiner fehlenden Gesundheit?

Naturliebe, Kreativität und Neugierde!

Sie sind mein täglicher Antrieb für virtuelle Reisen durch Instagram mit themenbezogenen Hashtags, für Politik im Fernsehen und Radio, sowie Austausch dazu in Threads.

Wenn ich genug Kraft habe, male ich, fotografiere, schreibe, häkle, stricke Socken oder höre Hörbücher auch dann wie Hühner-Gucken im Sitzen.

Aber ich freue mich auch darauf, Pläne für die guten Zeiten zu machen, die glücklicherweise bei schönem Wetter überwiegen. Das kann ich jetzt auch mit meinem Kopfkino oder meinen Traumreisen im Liegen tun!

Also traut euch und erzählt, was ihr so macht, wenn euer Kopf und Geist wollen, aber euer Körper nicht mithalten kann?

©️®️CWG 🌳🐩🐓🐩🌳

#cfsbeiregen #kopfkino #zwerghühnerphilosophien #neugierde #durchhalten #zwergpudel #kraftdesgeistes #gutezeiten #mutigsein #körperundgeist #kreativität #mutmacher #hoffnung #kopfkino #gedankenblumen

#florianatopfblume #cwghighsensitive #cwg64d #fibromyalgie #Polyneuropathie #cfsme #cfsmepem #chronischeserschöpfungssyndrom #Histaminintoleranz #mutmacher #Hoffnung #nordhessenzwerghühner #nordhessenzwergpudel #zwerghühner #Zwergpudel #kopfkino #gedankenblumen #kreativität #etwasgehtimmer

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