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#(I have MECFS)
mrs-snape5984 · 2 months
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„You look beautiful undone…and my heart's connected.“
„We learn the most when we least expect it. We learn the most when we break in two. (…) It's the cracks that let the light shine through…“ („Beautiful Undone” by Laura Doggett)
“Her hands were brushing a strand of his silky hair out of his face and in this exact moment, Julia’s whole existence got just one purpose: She would always protect this way too skinny, raven-haired boy with his adorably crooked nose and those beautiful - and yet so sad - obsidian eyes!”
This is a tiny snippet from one of my stories, which I’m only writing in order to cope with my own pain. I guess, I won’t ever be bold enough to share them publicly and my friend @vulnus-sanare has the duty to burn my laptop as soon as I’ll be gone one day (even though she threatened me to share my dirty work with the people in our beloved Snapedom).
But this little snippet fits perfectly with the amazing artwork, which my friend, the extremely gifted @snake-queen7 drew for me.
I’ve always had a soft spot for Severus in his younger years. All I’d wanted was to keep this boy safe from harm, making him feel loved and cared for…because this is exactly, what he deserved!
In my stories, Jules is Sevy’s friend, his lover, his protector, his guardian angel, his saviour, his powerful goddess of revenge. And to be honest, you don’t have to be a psychologist to understand, where this is coming from. Julia’s strength and her determination to make the world a better place for her beloved Severus are rooted in my own feelings of helplessness and despair.
My reality with ME/CFS couldn’t be more different from my stories. I feel trapped. Trapped in my own diseased and disabled body…trapped in my room….trapped in my darkness…trapped in a life, in which I don’t feel appreciated anymore.
I’m feeling more and more like a useless piece of furniture, which someone has hidden in a dark chamber. Still good enough to keep it, even though it’s not in plain sight…or at least not bad enough to waste it eventually.
Where’s my light? Where’s my saviour? Where’s my way out of this hell? I guess, it’s just like Severus has said: “Well, it may have escaped your notice,but life isn’t fair!” (“Harry Potter and the Order of the Phoenix”)
I’ve always loved Severus for his resilience, his stubborn determination and strength. Since 21 years, he’s not only my comfort character and the love of my life…he’s my role model, my inspiration to keep on going…to keep on living.
So, I’m clinging to him and to all the things, I’m using in order to cope with my misery: I’m a loving mother of three wonderful children. I have a handful amazing friends with a deep understanding of my grief and despair, but who also appreciate my dry humour and my sarcasm. I’m still capable of pouring out my feelings onto paper, creating something beautiful in my stories. And I’m full of gratitude for the artists of Snapedom, who are helping me to bring my creative ideas to life with their art.
And that’s exactly, what you have done for me with this delightful piece of art, @snake-queen7! Thank you for giving me some comfort and peace for my troubled heart and soul by drawing Sevy and Jules again. You are wonderful and I appreciate not only your outstanding art, but also your kindness and compassion. Thank you for everything! 🥹
🖤Sevy & Jules🖤
🖤Severus & Julia🖤
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atikas · 15 days
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In May of 2021 Maeve Boothby O’Neill was told by an NHS doctor she would “feel much better if you gave your hair a wash”. In October of 2021 she died. Multiple young women are in situations extremely similar to those that led to her death, right now.
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sourtails · 5 months
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god I'd do anything to experience sickness like how someone who isn't chronically ill does. what do you mean you get sick and then recover?? I got sick 7 years ago and have only been getting sicker since so the idea of being ill for a couple weeks and then bouncing back is almost unfathomable to me
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theghoulofme · 2 days
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had my first hangout outside in like three years today. having a wheelchair really makes so many things a possibility
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rhube · 1 month
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Taking a book around the house with me in case I accidentally read it or something.
This is the book, by the way.
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natandacat · 3 months
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Incredible what a day out of bed does to my morale. I'm never gonna die and I could take on god
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chomesuke · 9 months
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watching your life and all your relationships fall apart as you are barely able to leave your house is a very devastating part of being chronically ill.
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flyleaf-girl · 2 years
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Somebody deadass sent me spoons in the mail. Literal physical spoons. This is the funniest fucking thing that's happened to me all year I'm DEAD. 😂😭💀
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per1shed · 2 years
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the doctor was so nice and she took everything i said very serious and made me feel like i wasn’t insane or over dramatic and she’s gonna do lots of testing (immune system etc) + i’m gonna get tested for ehlers danlos syndrome and mcas
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weevilwizard · 1 year
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my biggest struggle in understanding the hate thrown at the term “transmisandry” is that it doesn’t come off the same way as “misandry” to me. purely based on like, the way i read words. i don’t process it as trans + misandry, as in the intersection of transphobia and misandry, i process it as it’s own word. like, “misandry” means hatred/prejudice towards men, so to me “transmisandry” means hatred/prejudice towards trans men and transmascs, as a separate concept from misandry as a whole, which doesn’t really systemically exist under the patriarchy.
but my point is, “transmisandry”, or hate/prejudice specifically targeted against trans men and transmascs, does exist. there is sooo much hate and violence specifically attacking transmasculinity and trans men, and to claim that there isn’t is ignorant and honestly bewildering. i often see the claim that what we experience isn’t a unique kind of violence, it’s just transphobia and misogyny. which like, yeah! it is tied to both of those things! but it’s also more specific than that. and maybe the word “misandry” is too correlated to bullshit MRA stuff, and “transandrophobia” was coined by a terf, so maybe we need a new term for it? i don’t know. but it’s absolutely not helpful to just say the problem doesn’t exist and anyone who tries to talk about their specific suffering using words you don’t like is somehow eeevil or whatever.
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mrs-snape5984 · 11 days
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„You’re not alone, together we stand. I’ll be by your side, you know, I’ll take your hand…”
“Just stay strong, ‘cause you know, I’m here for you…” (“Keep holding on” by Avril Lavigne)
I decided to set a trigger warning on this post: Miscarriages, high risk pregnancies, ICSI treatments, traumatic wish for a child journey, hysterectomy. So, please feel free to skip the following x paragraphs, if you feel triggered by these topics. Thank you.
Those of you lovely people of Snapedom, who know me and my way of blogging about Severus and my personal hardships might have noticed, that I’m mostly venting about ME/CFS and the crumbs, which are left from my former life. Since I can’t do much about it right now, I decided to “fix” another one of my countless issues…an internal wound, which desperately needs to heal!
As some of you might remember, I’m a mother of three wonderful children. There are my eleven years old twins and then there’s my six years old daughter. My pregnancies were the result of a long and painful journey of ICSI treatments, several miscarriages, way too many tears, about ten surgeries - due to Endometriosis and myomas - which eventually ended in a hysterectomy four years ago.
My desperate wish for a child led me to some decisions and life choices, which I probably wouldn’t have made, if I would have been clearer…maybe more stable in my whole mindset. One of these choices was a totally over rushed marriage to a narcissistic man, who made me believe, that he wanted the same. Gosh…I’ve been so desperate and so fucking stupid! Well, at least I got my twins because of him.
I went to the appointment for the transfer of the embryos on my own. He didn’t want to join the procedure…and I should have known, that he was already saying “goodbye” back then.
The pregnancy was rough. I had to lie in bed from the 8th week of pregnancy until they were born as premature babies in the 29th week of pregnancy. The last 4,5 months of pregnancy, I had to stay in the hospital…fighting for my babies’ lives all on my own. The father of them had decided, that he didn’t want to be a father anymore…wow…
I don’t want to go further into details about this phase of my life…at least not yet. I commissioned my friend @alinearthp for this project and asked her for several drawings of the different phases of my journey to become a mother. This artwork will be the start of my healing process…and I’m incredibly grateful, that you’re doing this for me, Aline! I know, that you’ll need time to draw all these wishes of mine, but I’ll be patiently waiting for each of your breathtaking pieces of art, my dear!
So, for the next couple of months, Severus will accompany me on my path through this phase of my past…just like he did back then, when I spent months in a hospital bed in “Trendelenburg” position. During this period of my life - and to be honest, in so many other phases of the past 21 years, as well - I clung to my imagination of Severus in order to feel less helpless and alone. His resilience and determination have always been my inspiration to keep going through all these hardships, which life kept throwing at me. He’s the love of my life…and he will forever be the guiding light in my darkness.
🖤Severus & Julia🖤
🖤Sevy & Jules🖤
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atikas · 4 months
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Jennifer Brea’s documentary ‘Unrest’ about myalgic encephalomyelitis is now available to watch in full for free on YouTube. Please consider watching. We need people to learn the truth of this illness and help us to advocate for more funding for research so we can find effective treatments and hopefully a cure. This illness is woefully underfunded in respect to the disease burden, and patients are routinely disbelieved, neglected and mistreated. The vast majority of patients also happen to be women.
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sourtails · 9 months
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desperately manifesting that I will recover enough to be able to play PC video games again just so I can romance Astarion in BG3 🙏
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(Please share widely on and off Tumblr)
From Putrino Lab @PutrinoLab today:
A reminder that if you live within 50 miles of NYC and you have a PRE-2020 ME/CFS diagnosis, then @VirusesImmunity
and I NEED your help! If you have difficulty traveling we will come to you. Please help us to hit our recruitment goals if you can! ---
Prof. Akiko Iwasaki is involved in this research. She just quoted this on Twitter/X saying: Please help spread the word about our #MECFS study with @PutrinoLab 👇🏼 thank you 🙏🏼
---
Post-Viral Trials News @postviraltrials quote tweeted it saying: David is underselling the benefits of participating – they give you microclot and platelet imaging and impressions! Here are mine:
https://x.com/postviraltrials/status/1774908103307198667?s=20
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rhube · 7 months
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Meditation and ME/CFS
I've written a lot about my experiences with meditation on Mastodon, but not so much here, where the long-form format would actually help me say more. So, here goes.
There's now a wealth of evidence that the gut and the vegas nerve have a lot to answer for with ME/CFS symptoms, and that improving them can significantly reduce symptoms.
If I'm feeling better at some point I will try to hunt down sources, but I'm still pretty ill and trying to be good, so for now what you get is the results of someone with a philosophy PhD reading science papers and watching videos and seminars from scientists. I have research skills and am trained in evaluating testimony, but I'm not a scientist. I am taking their word for it, but I have taken a wide range of educated people's words for it.
The Remission Biome project people share a lot of scholarly information in an accessible way on their feeds, and are a good place to start to find out more about what's going on, as they are researchers who have both ME/CFS and Long COVID. But the vast majority of what they say (and all the bits I'm going to talk about today) have been supported by the ME/CFS specialist Occupational Health Therapist I saw this year and many, many papers and videos I have consumed from other researchers.
Anyway, on to the stuff.
A problem making energy
People with ME/CFS have broken mitochondria. This has been suspected for a while, but a bombshell paper from a guy called Prusty basically proved it at the international ME/CFS conference in the UK in April this year (2023). This gives us a starting place for an actual goddamn biomarker and test, rather than the diagnosis of exclusion that has been used by many GPs to dismiss the condition for years. But what does it have to do with the gut and the vegas nerve?
Well, ME/CFS is a condition that affects the body's regulatory systems, so it isn't just any one thing that's fucked up, but each thing that is fucked up fucks all the other things up and makes them worse - JOY! That said, the mitochondria are the 'powerhouse of the cell' so knowing that a condition whose key marker is crushing fatigue and post-exertional malaise (basically, worsening of all systems as a delayed reaction after you do something that draws on too much energy) involves broken mitochondria is obviously a big piece of the puzzle.
According to Prusty - and others! - the mitochondria are not producing energy in the right way in response to exertion. But it's not just that! You know the muscle pain that comes from anaerobic exercise? That's lactic acid, caused by lactates, damaging your cells with oxidative action. These oxidatives further damage your mitochondria, so that when you need to draw on your energy again later, the problem is worse - post-exertional malaise!
Where are the lactates and oxidatives coming from? It's partly because your mitochondria aren't creating energy the way they should, so you start generating energy anaerobically way earlier than you should. Things like walking at a normal pace, having a conversation that lasts more than 20 minutes, or reading a book, can trigger your cells to behave like you're running a marathon and doing anaerobic exercise, causing the lactate acid.
But it's not just that.
The gut and the vegas nerve
You see, a lot of the regulation of how and when you produce energy is governed by the gut and the vegas nerve, which connects the gut to the brain. In fact, the vegas nerve is two nerves, one for the left and one for the right side of the body. They go down from the brain to connect to fucking EVERYTHING. Down your arms to your fingers. Down your torso to all your organs. Down your legs to your toes. And they both do the same thing, so people just talk about the vegas nerve as one thing (as I will mostly from now on).
The vegas nerve controls your parasympathetic and sympathetic nervus systems - basically whether you are ramping up to do some shit or winding down to relax and sleep. Part of the way it does that is by controlling what happens in your gut, which is sometimes referred to as your 'second brain' because it controls so fucking much of what goes on in the rest of your body.
When the vegas nerve gets disrupted, it sends disruptive signals to your gut, and the gut produces unhelpful chemicals. In particular: cytokenes.
Cytokenes are a trigger for cells to produce lactates which cause oxidative action. The oxidatives fuck up the mitochondria and cause inflammation. Inflammation disrupts the nevus system (including the vegas nerve), which can make you anxious and more likely to enter fight-or-flight over things that really shouldn't bother you. This BOTH disrupts the vegus nerve further AND drives the body to produce more energy, which makes you feel less tired than you actually are. This means that you push yourself harder and your poor, broken mitochondria are called on to produce more energy anaerobically, which makes more lactates, more oxidation, more inflammation, etc etc.
How do we fix this? Well, there's no cure, but you can do things to reduce the bad shit that's happening at different stages of the cycle.
Meditation
One of those things is meditation. There is a really large body of evidence that meditation does help regulate the vegas nerve, in ways that benefit basically everyone, although it's not entirely clear how. I'm the kind of person who gets deeply sceptical when someone says I can improve my debilitating illness by thinking nice thoughts (11 years of medical gaslighting will do that to you even if you are not a philosopher who has been asking annoying 'why' questions since you were 4), so I've looked into this to the extent I can as a non-scientist.
People talk a lot about 'improving vagal tone' without fucking unpacking that, and that annoys me. Wtf is 'tone'? It's not really defined, and I think there's an extent to which we don't really know the exact mechanism. But. I think it's meant to be analogous to the way that a toned muscle is better at doing what it's meant to do. I translate 'vagal tone' into 'vagal regulation'. Is it behaving in a regular manner, sending the right kind of signals in proportion to what the body needs? If it's sending signals to wake you up at all times of the night, then crash in the afternoon, if it's telling the gut to make cytokenes when you do not need bloody cytokenes, then it's not well-regulated and the 'tone' is bad.
There's no clear evidence for one kind of meditation over another at improving vagal 'tone' but what they all tend to have in common is breathing exercises and deep relaxation.
Meditation for anxious and traumatised people
Personally, I do not find the kind of 'mindfulness' meditation they push in the UK (often as a part of CBT, although the two do not need to go hand in hand) particularly helpful.
This is because I have high levels of depression and anxiety, tinnitus, and probably cptsd, and mindfulness meditation tends to aim at emptying the mind, accepting whatever thoughts come without judgement, and exercises that involve listening to different sounds (NOT GOOD IF YOU HAVE TINNITUS!). If you give me too much blank space without distractions I get intrusive thoughts that I do not fucking want to be accepting of, and as someone with a history of disassociation (common with cptsd) I am REALLY uncomfortable trying to separate my thoughts from all emotion - doing that is labelled in my brain 'here be dragons'.
But! There are other kinds of meditation! The people at Remission Biome recommended yoga nidra (yogic sleep) and for me it is SO MUCH BETTER.
It also makes a lot of sense in terms of regulating your vagus nerve.
Yoga nidra
It works like this:
You start with a few long slow breaths (like most meditation). This helps regulate the vagus nerve because the speed of your heart and lung movements are related - think about it, you breathe in oxygen to oxygenate blood that's then pumped around the body to your cells by your heart; it makes sense that they would be in step. Deep slow breaths both slow down your heart and increase oxygen levels in the blood which helps buffer against the anaerobic energy production that causes lactates. The central tracts of the vegas nerves run really closely to the nasal cavity and throat, so it's likely that deep slow breaths are active directly on the vegas nerve there (the is the same reason drinking cold water upside down can cure hiccups, but directly applying soolness to the vagus nerve through the throat and resetting it).
The you set something called a senkalpa, or intention, for the practice. This one doesn't do much for me as it's meant to be present tense as though it's already true, and the tendency for me to get taciturn and be like 'No it bloody isn't!' is very high. It's meant to be things like 'I am well-rested,' 'I am at peace,' 'I am happy and healthy,' which tend to annoy me, but I quite like 'I am enough', and either way, it's over quickly, and if that's all the affirmation bullshit I have to endure in a meditation, I am grateful. Mindfulness meditations tend to have waaay more stuff that annoys me than yoga nidra.
After the senkalpa you start thinking about parts of your body in turn. Depending on the length of the meditation, you'll think about more or less of your body parts, but essentially, you are drawing attention to all the various end-point of the vegas nerves in turn (usually the right first, and then the left). It's very common to start with the right thumb, then each of your fingers, your palm, the back of your hand, progressive parts if your arm, thr ight side of your chest, your waist, your hip, your thigh, your knee, your calf, your ankle, your heel, the sole of your right foot, your right big toe, each of your other toes in turn, then back up your leg to your hip, and then either down your left leg or starting at your left thumb to do the left side. Longer meditations might start with your head and go on to work though your back and front as well as the left and right. I think traditionally you're working through chakras (I am not an expert!) but you can see how this is basically stimulating the vegas nerve in an orderly fashion, and it makes sense that this would help regulate it in some fashion.
It also - and this is a big one if you have anxiety and intrusive thoughts - gives you something simple and straightforward to think about, guided by somebody else. This makes it MUCH EASIER for me to avoid getting het up in my own bullshit than any kind of meditation that wants me to empty my mind or just listen to stuff.
If I'm really anxious, it can take quite a long way into the meditation for me to get sufficiently distracted to relax, but I'd say 80-90% of the time I can do it in a half hour meditation.
Which is like:
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Because I am SO BAD at that.
It REALLY DOES relax me. I know, because my heart rate monitor tells me I usually drop 10-30 heart beats per minute by meditating.
And that's really important for two reasons.
1. One of the best ways to avoid PEM is to note your resting heart rate when you wake up (any watch with a heart rate monitor and app will calculate this for you) and then try to keep your heart rate no more that 15bpm higher than that. No, that isn't a lot. Yes, you probably are triggering PEM if you stay with a heart rate above that for long. That's how going for a short walk or having a conversation can fuck you up.
2. Your body clears out all the crud it collects during the day (stuff like lactates!) when you're in deep rest. What you're trying to do with yoga nidra is enter deep rest without falling asleep. This means that if you enter PEM and your cells are full of nasty lactates, you can mitigate the damage by cleaning those out without napping and fucking up your sleep pattern (you rarely enter deep rest when you nap anyway).
You can probably enter waking deep rest with other types of meditation, but this one is SPECIFICALLY aimed at doing that, so you do it lying down, which is also a lot better for people with ME/CFS, as long as you get up and move around after (I find this is much easier after yoga nidra than when I just go lie in bed and scroll Tumblr, for instance).
What's more, when I do it at night, if has a 95% success rate at getting me back to sleep. Including if I wake up in the middle of the night. As a lifelong insomniac, I say again:
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So, like, I was not at all convinced by the mindfulness meditation the chronic fatigue clinic prescribed when I first heard it recommended. But I kept hearing it recommended again and again, and when Remission Biome recommended doing yoga nidra at least an hour every day I was both incredulous (that sounded like a lot) and inclined to find out more.
They recommended the Insight Timer app, which is free and I have found really great. It has a lot of free yoga nidra tracks, as well as mindfulness meditations, soothing short stories, gong baths, and even an hour long track of a cat purring, so even if yoga nidra isn't for you, it's easy to find something that gives you that period of genuine rest from both physical and cognitive exertion that is essential to actually pace.
Pacing
Like many in the ME/CFS community, I am frustrated that pacing is the only fucking thing most doctors will prescribe. I do think the way it's used by a lot of doctors is a cop out to explain why patients never get better - the kind of rigid schedules and activity diaries they prescribe as having to be followed exactly seem like the kind of thing most actual humans will be doomed to fail at.
BUT, if you think in terms of the science of 'you're gonna got into the PEM trigger zone for any activity, but if you can immediately downtools and enter deep rest, you may be able to not only lower your heart rate, but also clear out some of the damaging chemicals you created' ... I dunno, man, that makes sense to me.
Insight Timer tells me I have now meditated at least once a day for 93 consecutive days, and 115 days total. I am still pretty damn sick - I got myself in a bad way over the last three years, and I've been told I need at least 4-6 months solid rest before I can even think about increasing activity - it's gonna take A While to clean out the garbage in my body, but when I am able to meditate I can see on my heart rate monitor an immediate effect. My resting heart rate is very slowly going down, on average. And I can see that when I don't meditate enough in the day, my sleep gets worse again and I feel worse, and my resting heart rate goes up again:
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I know exactly what caused those bumps.
Meditation is also prescribed for IBS, which I've also been treating and is very common with ME/CFS (because our digestive system and vegas nerve are fucked up!). I was gonna talk more about that too, because meditation is by no means the only gut-related treatment I have been doing, but this post is already too long. But I've had bad IBS this year, and lately I've been doing some proper fucking poos - the meditation is a part of that.
So, I dunno if this is helpful, or if it will reach anyone from my largely fandom blog, but this feels like important information that doctors do not explain properly. Plus, I would love to share with other people who have mental health issues that yoga nidra *may* be more helpful and less distressing to them than the mindfulness meditation it is easier to come across in the English-speaking world.
If you do get the Insight Timer app, my favourite tracks are by:
Zoe Kanat
The StillPoint
Natalie Moon Yoga Nidra (the track with the picture of a kitten)
Melissa Burton
There are a lot of tracks that blend meditation styles and some mix yoga nidra with affirmations, acceptance, or gratitude, which for me is a big Do Not Want, but these have been reasonably safe for me.
Again, I am not a doctor or a scientist, but I am OK at reading scientific papers and researching stuff, and I think this stuff is helping me.
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daaedoodles · 2 months
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disability tumblr i need your advice!
i’ve been a ambulatory wheelchair user for 2 years and my wheelchair is way too big for me, cheap and starting to break. i really want to get a power attachment and something more lightweight and compact so i have more independence, but definitely not a power wheelchair because they’re heavy
is it even worth it to try and get a custom wheelchair though? and how would i begin the process of getting one?
(hEDS, POTS and moderate-severe MECFS, been house or bedbound since getting sick and use wheelchair outside of house but at the point where even walking to the kitchen and back to get food a few times a day is worsening symptoms)
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