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Ace-TheTimelordsCompanion

Aros with disabilities

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Hiya beautiful people :)
It is my intention for this to be a thread for those with disabilities of any kind (everyone welcome though).


Talk about everything, let's share our experiences
Here are some ideas:
-The different types of disabilities we have
-Triumphs
-Frustrations
-Accessibility

-meds

-being aro with a disability

-strategies

-rants

-what makes us feel better

-questions and suggestions

-Awareness and rights
Basically anything pertaining to disability of any kind

EDIT Chronic health problems, or even serious shorter term ones* are welcome, there aren't enough members on here to be super picky ;). Embrace the spirit of the thread, rather than the dictionary definition :) 

 

*you just broke an arm? Join us. Have an average bout of the common cold with no complicating factors? Maybe not so ,much :)
 

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Hello again! I don't quite have a disability, but I think I will be able to relate somewhat with having a genetic condition. Feel free to tell me to clear out!!

 

What's on my mind right now though is the financial drain it is!! It's not recognised as a bad enough problem to warrant financial help. I'm a uni student with no job. And the steroids that I have to buy in order to treat my condition are expensive for me... $40 for about 120g, which I use up fortnightly. Another $40 for the steroid based shampoo which expires every 4 weeks. And then another $40 for the liquid steroid for my hair. All up, it costs me about $1800 per year, not including any specialist appointments or other associated costs. ;~; I would not be able to do this without my parents' help. Thank the mighty Andraste that we have Medicare that most of my appointments are covered under.

 

Again, sorry if this doesn't count!

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I'll jump in here, so it isn't imortalised in the OP
I have my own little collection of disabilities and illnesses.

Asperges

Depression
Obsessive Compulsive Disorder

Anxiety

Social anxiety

Asthma

And most recently Migraine

Here comes my grumble,


I have had this migraine for more than 2 months now. THe pain comes and goes and isn;t so bad, but I have had the aura stuffing up my vision and extreme light sensitivity for the whole damn time!
I can't even go for a walk  wearing two pairs of sunglasses because it is still too bright, even the streetlights at night mess me up. I have either been in pain and discomfort or stuck in a dark room for this whole time.
I am afraid I have also had plenty of helpful suggestions, too many in fact. I;ve seen doctors and neurologists,  and had half a pharmacy prescribed. Nothing works. Thank goodness we have a government funded health system, so the cost is minimal.
I am trying my best to touch type this in the dark, with the screen brightness on it's lowest settings and an app that makes the webpages dark grey, and the font much larger. I am losing my friends, because I can't hang out with them, and I have had to put university which I love, on hold. I just want this to be over and to have my sight back to normal.
Thanks for reading :)



@Dodgypotatoof course you belong in this thread, technically if we are going to take a direct definition of disability, then I need to throw myself out for talking about my migraine. Anything is welcome, this is a thread for connecting, not for shunning people for having the wrong kind of health problem or not being 'disabled enough'. Anyone who wants a strict thread for this is welcome to start a new one :) Ugh ugh ugh, what fun your budgeting must be :(

 

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Damn, that must be really tough to deal with! I'm not going to throw stupid advice at you, because you've probably heard it all and I know how annoying that it. : P

 

The whole no hope for a cure thing majorly sucks ass. I really hope we can both find at least something to lessen the symptoms of these stupid things. There is definitely no cure for mine. Are you still trying to find a neurologist who knows what's going on?

 

I do have a specific phobia which falls under the anxiety umbrella, but not OCD, GAD, or SA. We almost make up all of the anxiety conditions between us. : P

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Thanks, likewise I won't give you any advise, even if I had any, because I am certain you have heard it all on infinite repeat.
Yeah, no cure is rubbish, particularly with yours being basically guaranteed to continue forever. I hope you find something effective in giving you some relief at least. 

Mine is less certain, their are preventers that work for some people who get frequent shorter migraines, but fewer options for the rarer long lasting type I have right now once one gets started, basically there are a few meds, that work on some people that are one off hits at it (some were even through a drip), and if those don't work then there isn;t a hell of a lot they can do. They didn't work, so now I am stuck with the only real cure left, time. Oh they have me on a couple of things that are doing squat. There isn't much more they can do, other than keep an eye on me. There is no way of telling if and when it will stop, it could be a couple of years, or it could be tomorrow morning. 
There is no cure for migraines, although some people grow out of them, but I can live with a few days of crap every few months, what I can;t deal with is a few months of crap.
Thanks for listening Dodgy, and thanks for sharing :)

Lucky us being scared of almost everything :P *hides*  

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6 hours ago, Ace-TheTimelordsCompanion said:

I'll jump in here, so it isn't imortalised in the OP
I have my own little collection of disabilities and illnesses.

Asperges

Depression
Obsessive Compulsive Disorder

Anxiety

Social anxiety

Asthma

 

Funnily enough, I think I have all these (well, I'm a former asthmatic if it's possible to be one at all) and a lot more illnesses but I can't really complain until I lift my lazy ass and get screened for an official disability pension (the chance of getting it is far from 100%). My mother is opposed to this intention because she wants me to remain eligible for a 'decent' 9-to-5 job, but she's not really a factor.

 

:hugs: to you and @Dodgypotato Fortunately, I've never had migraines myself, but my uni buddy did have some inexplicable headaches that caused him to go on a leave for a couple of years, so it can be debilitating indeed :( I'm yet starting to feel the 'delight' of (venous) eczema, an itch that becomes stronger when scratched, like a hydra (cut one head - two will grow in its place).

 

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Not really a proper disability... but my blood pressure is SUPER LOW and I can get dizzy for just turning my head too fast. :| Fortunately, the only medicine I need to raise my pressure is salt, which I cary with me all the time... just in case. Needless to say people are always curious when I they see me eat salt for no apparent reason, and whenever someone questions me I tell them it "keeps the demon weak":ph34r:. People already see me as a weirdo, might as well embrace the role and have fun with it!:D

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3 minutes ago, Ugh... said:

I tell them it "keeps the demon weak":ph34r:. People already see me as a weirdo, might as well embrace the role and have fun with it!:D

 

A+!!! :icecream:

 

* telepathically passes the excessive salt from his body to Ugh's *

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Hey everyone in case y'all didn't notice from the way I talk about it all the time, I'm incredibly mentally ill. Like, super mentally ill. 7+ disorders and 4 different medications mentally ill. Also, I might have seizures, but that might just be a medication side effect. (Medication side effects are fuuunnnn.) Also, eating salt is fun! My neurologist told me that it (along with, you guessed it, more meds!) would help with the seizures, and it works out, because I love salt--when I was a child I would drink soy sauce straight from the bottle. :P 

 

I'm just glad I didn't get diagnosed or else it would've been a huge financial burden--on top of the three hospital visits this year (two for the aforementioned seizures, one for a catatonic episode), we would've had to either deal with meds that cost $120+ per pill (for context: i take ~8 pills a day because of weird dosages and so forth). As it is, my insurance covers all of the medication (and part of the hospital trips, not therapy at all). I'm also incredibly sad I didn't get diagnosed earlier, though--I went through such a long period of my life miserable, without any kind of help, and that might have been preventable.

 

Agreed on the "no cure" thing though. I've managed to control my mental illnesses through meds, but I'll forever struggle way more than an NT; plus, the meds don't always work (especially when Life isn't going ideally for me), and if I forget them two or more days in a row I go through some seriously hellish withdrawal. Most of my mental issues are incurable (schizophreniaaaa), and many of them (potential personality disorder! serious trauma issues! sensory processing issues! dissociation like whoa!) don't even have meds that attempt to 'control' or 'manage' them, just therapy and a lot of dedicated work. And even the ones that are currently controlled have shaped and changed my life so much that I'd be a different person if I had never had them--I've had anxiety since I was four (at least), schizophrenia since I was five (at least), severe depression since I was eight. This is just kind of who I am, in a lot of ways. So I just have to do my best with what I have. ^_^

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I'm another one who has a list:

 

Autism (HFA)

Cyclic depression 

3 crushed vertebrae 

Chronic severe pain and nerve damage caused by the crushed vertebrae 

Type 2 Diabetes 

Migraine

Generalized anxiety disorder 

Sensory integration disorder 

 

I've been on a narcotic painkiller for almost 8 years now.  I tried many different meds before I found one that worked tolerably well and didn't have a prohibitive side effect profile.  The only problem is that it's a medication that has a negative reputation because it's a drug that is often given to addicts who are trying to detox.  Ok, it's methadone.  But it's also the only med that helped control the pain without making me so sleepy and out of it that I couldn't function.  At least this way, I can walk without wanting to scream *and* be awake and aware to work and do the family thing.  With everything else, it was either/or.

But because of the judgemental attitudes of some people, I have to be very secretive IRL.  

 

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I've got a couple weird mental disorders; all self-diagnosed, though, and not too problematic.

- BFRBs (body-focused repetitive behaviors) : like habits but worse and I can't get rid of them. Like I pick at my fingernails until they bleed

- Misophonia: certain sounds trigger anxiety or negative emotions

I also have a lot of sensory problems, but don't have sensory processing disorder, as far as I know.

 

And I have various types of synesthesia, but that isn't really a disability.

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4 hours ago, aroMa(n)tisse said:

I'm yet starting to feel the 'delight' of (venous) eczema, an itch that becomes stronger when scratched, like a hydra (cut one head - two will grow in its place).

Not sure if you know about this stuff, but my grandfather had very bad eczema and used O'Keefe's Working Hands on it. Apparently it works wonders if you use it regularly (he would only use it when the itching got bad and he had started picking).

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5 hours ago, aroMa(n)tisse said:

 

Funnily enough, I think I have all these (well, I'm a former asthmatic if it's possible to be one at all) and a lot more illnesses but I can't really complain until I lift my lazy ass and get screened for an official disability pension (the chance of getting it is far from 100%). My mother is opposed to this intention because she wants me to remain eligible for a 'decent' 9-to-5 job, but she's not really a factor.

 

Yay, disorder buddies, what a wonderful thing to bond over. I know people, including family, who have 'grown out' of asthma, so yeah that makes sense. Interesting, obviously the process for a 'disability pension' as you call it is quite different where you live. I have been on what we call the supported living benefit for several years now. Getting on it in the first place is a real pain, in my case it was actually me who was reluctant, and she kept pushing. She saw the side of me that the professionals didn;t, because as an aspie girl-creature I am a chameleon, and very easily swayed to others points of view, so every time a professional tried to push me away from getting the help I needed, I would agree with them. I am on it now though, and I also get home help. It has been much easier getting renewals. Also the issue here is a medical professional has to basically sign a form saying there is no way your condition will improve at all in the next two years, and they are very very reluctant to do that, even when they admit it is probably true. 

4 hours ago, UncommonNonsense said:

 

I've been on a narcotic painkiller for almost 8 years now.  I tried many different meds before I found one that worked tolerably well and didn't have a prohibitive side effect profile.  The only problem is that it's a medication that has a negative reputation because it's a drug that is often given to addicts who are trying to detox.  Ok, it's methadone.  But it's also the only med that helped control the pain without making me so sleepy and out of it that I couldn't function.  At least this way, I can walk without wanting to scream *and* be awake and aware to work and do the family thing.  With everything else, it was either/or.

But because of the judgemental attitudes of some people, I have to be very secretive IRL.  

 

Maybe it's the aspie side of me but I will never understand this kind of response from society. Like why people can;t just be happy something works for you and helps you live a better life. 
And even in the case of addicts that reaction makes no sense, it's like laughing at an overweight person at the gym, they are trying damn hard to work on their issues. It makes zero sense. 

4 hours ago, Jade said:

(Medication side effects are fuuunnnn.)

Aren;t they just xD 
I can;t say I have had anything like as many issues, but I remember going on my antidepressants, and that was such a good time. As I recall I was falling against the walls giggling, then dropping to some of the darkest places I have ever been. And I am very reluctant to try the latest thing they want to for my migraine, partly because the medical fact sheet specifically says it won;t help in my case, but mostly because a quick look up shows the side effects are fierce, it's a drug commonly used for epilepsy, and a friend;s sister says it is the worst she;s ever been on.

 

++++++++++++++++++++++++++++++++++++++++++++++++++++

 

Feeling so weird right now. I contacted the blind foundation, of all people, hoping they may have some advice for dealing with the vision issues caused by my migraine. They say they might be able to sign me up under special registration for those who don't meet the criteria. It is so weird because I have to send this form to the optometrist that has all these boxes for vision issues that people have, and there is nothing wrong with my actual eyes at all, they are fine, and he basically has to fill in the form saying that, and then I have to send in the info from my doctors saying about the aura and light sensitivity. I feel like such a time wasting imposter, but I really do need help and advice. My vision really is affected, but at the same time, technically there os nothimg wrong with my vision. So confusing, and just feeling weird

 

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Yeah, it's possible to be a "former" asthmatic. I know. I'm one, my friend's another.

 

I don't have a list. I've got like one visual impairment and two question marks. Kind of tame, compared to the disabilities listed above. Basically, colourblindness, depression and autism. Depression and autism are under fire because I've never been officially diagnosed. (My mum tells be I was "autistic as a kid" which is not how autism works. But I did loads of tests and stuff and there's a possibility I might be autistic but I dunno)

 

Colourblindness isn't so much a problem itself as dealing with the people who are so fascinated with the colourblind issue? Like, I'm perfectly fine mistaking red for green or grey for pink. It doesn't do shit to my health, unless you're maybe talking traffic light or red pill, blue pill, although it gets frustrating when other people can see stuff you simply can't. (We were discussing a picture in English lesson the other day and I couldn't see the details they were talking about :( )

 

But the things is, some people are strangely fascinated and then they try to test you? Like they'll be pointing at stuff and asking you what colour the object/thing is. I don't mind it, but it gets a little annoying after awhile. Individual colours isn't really the way colourblindness functions, rather, colours blend into one another so I can't tell them apart. And for the record, I know grass is green.

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I've been diagnosed with dyspraxia and I have a stutter, though I also think I'm autistic. No way to tell for sure until next year, when I can drive and get myself diagnosed on my own :P

 

Have you ever looked at the edge of something from the corner of your eye, and it turned a colour either blue or orange-ish? I dunno if that makes sense, I always do that because it looks really nice. My aunt noticed it and thought it was an eye problem xD 

 

Currently they let me type out my notes in class, which does help a lot. My handwriting is illegible even to me xD

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1 hour ago, DannyFenton123 said:

I've been diagnosed with dyspraxia and I have a stutter, though I also think I'm autistic. No way to tell for sure until next year, when I can drive and get myself diagnosed on my own :P

 

Make sure whoever you see knows their stuff, particularly since you are non-binary. I was diagnosed as a kid, and it is blatantly obvious they were right. However in my late teens I had a bad experience with a psychiatrist I'd only just met, who proceeded to tell me i wasn;t on the autism spectrum because I wasn;t behaving like an autistic person would be. Basically he was judging my behaviour in his office, against the standard (male) checklist of symptoms. I am afab NB, and the autism symptoms can be quite different, which means those who aren;t MALE with a capital M can fall through the cracks.
Good luck, with the right person it should be fine :)

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12 hours ago, Sentient Android said:

And I have various types of synesthesia, but that isn't really a disability.

Woo synnie buddies! :D what types do you have?

 

10 hours ago, Ace-TheTimelordsCompanion said:

Aren;t they just xD 
I can;t say I have had anything like as many issues, but I remember going on my antidepressants, and that was such a good time. As I recall I was falling against the walls giggling, then dropping to some of the darkest places I have ever been. And I am very reluctant to try the latest thing they want to for my migraine, partly because the medical fact sheet specifically says it won;t help in my case, but mostly because a quick look up shows the side effects are fierce, it's a drug commonly used for epilepsy, and a friend;s sister says it is the worst she;s ever been on.

Ugh, that sounds awful. Antidepressants suuuuuck. (They worsened my psychosis big time.)

My psych wanted to take me off all of my meds because of side effects though and I was like ?????? why this. Apparently, since I've been on them and doing great for six months or so, I 'might not need them anymore'! Like,,, I'm glad to know that 6 months on medication that works can erase years of mental illness! :^) Thankfully my therapist told him off and now I'm just switching some medications around so that I hopefully won't have as bad of side effects anymore.

However, you mentioned that you do have depression--have you ever considered that you might have something bipolar-spectrum instead? Because those kinds of reactions to antidepressants are more common for bipolar than MDD. I don't mean to diagnose you over the internet, just out of curiosity as to whether you've looked into that already or not.

 

P.S. for all of you out there struggling with medications for psychiatric or neurological conditions, I'd like to give a quick shoutout to crazymeds, a site that gives unbiased views of various medications based on science and from the pov of the patients instead of the drug companies. It's seriously great (and funny!).

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@Jade I think I like your therapist xD 
Nah, I don't think I'm bipolar, I don't get anything like what I've heard the ups feel like. The meds settled down after the first week or so, now they are just making me even fatter (which is not good), but it can't be the meds because what would the patient know about it.

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I'm not really sure if this counts me as disabled, but in a manner of speaking I suppose it could. I have anxiety and depression, but as much fun as those have been for me, they pale in comparison to my PMDD (premenstrual dysphoric disorder). It's an extreme form of PMS, a disorder attached to your menstrual cycle that causes extreme mood fluctuations, very painful cramps, breast tenderness, etc. My medication helps to regulate that along with my other mental disorders. Without it, I find it nearly impossible to function normally for about two weeks out of every month. The closer you get to your period, the worse it gets. Symptoms let up when you finally start bleeding, but then the cycle begins anew. I could always tell precisely how far I was from my period by how out of control I felt. It's been much better recently thanks to zoloft, but I can still tell when my moods dips, and why. Chances are I'm stuck with that for my entire fertile life. The chemical imbalance it causes just sucks. I'd tell them to take my reproductive organs, but I'm way too young. They'd never go for it. 

 

I can definitely relate to you guys on the med troubles, though. It sucks finding one that works, without the unbearable side effects. The first one I tried broke me out in hives, and it just deadened every emotion I had. Someone could have burned my house down and I would not have cared xD

 

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Spoiler

 

  • I'm diagnosed with a rare neurological disorder with dyspraxia, ADD and sensory issues that shares almost all symptoms with autism but that isn't technically autism. (I won't say the name and enter into details because I could easily be identified on Internet this way) For this reason, I was a very bad student and now I live on disability, although I hope to get a job one day.
  • I have chronic migraines.
  • I'm an extreme night owl. Really, really extreme. I often see dawn before I fall asleep, even in Winter. I'm much more performant at night than during the day, and I would make a very bad day shift worker. It was terrible when I was a student. I have to take melatonin daily if I want to force my circadian cycle for a while. I'm not the only one in the family with that weird cycle.
  • I suffered from social anxiety disorder before (gone much better now) and I still have a few specific phobias. Complex PTSD with the nightmares and panic attacks (thanks mum for this).
  • I have low blood pressure. I take midodrine for that, it works fine.
  • I took paroxetine for my social anxiety disorder, and after one year of very hard withdrawal, I've suffered from SSRI discontinuation syndrome for 4 years now. Hello crying for nothing, brain zaps and memory loss, hands shaking like crazy...
  • My hormones are weird. I took cyproterone during many years, and I have to take levothyroxine too.
  • I suffer from gluten intolerance, certainly coeliac, very strongly suspected by both doctors and me because of severe digestive symptoms and malabsorption but which can't be officially diagnosed because I can't bear a 3-month gluten challenge before the biopsy.
  • I'm also diagnosed with pancreatitis attacks, apparently related to the gluten intolerance because these two started at the same time, just after gallbladder surgery, but no one knows the exact cause (CT scans don't show where it comes from). It's the most painful thing that I've ever known by far, it's pure horror (and I've known quite a few very painful things, but pancreatitis makes anything else feel like little scratches in comparison) to the point where morphine doesn't do much against the pain, it even makes my attacks worse.


 

 

Wow, now I sound like a complete hypochondriac now xD

 

@Sentient Android Synesthesia can be a disability, when it's extreme. That type is rare but it can also be a symptom of disabling neurological disorders and even cause some kind of sensory overload.

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17 hours ago, Jade said:

Ugh, that sounds awful. Antidepressants suuuuuck. (They worsened my psychosis big time.)

Is that a common problem with psychosis and anti-depressants?

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8 hours ago, RedNeko said:

Is that a common problem with psychosis and anti-depressants?

It really depends on the person, and the type of disorder you have. Bipolar disorder is often misdiagnosed, and as such, treated with the wrong types of medication. It is a risk with all anti-depressants though. One of the side-effects can be suicidal thoughts, so it's mostly just a frustrating process of elimination. "Okay, I can't take this, so I'll try this one."

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8 hours ago, Rising Sun said:

I'm an extreme night owl. Really, really extreme. I often see dawn before I fall asleep, even in Winter. I'm much more performant at night than during the day, and I would make a very bad day shift worker. It was terrible when I was a student. I have to take melatonin daily if I want to force my circadian cycle for a while. I'm not the only one in the family with that weird cycle.

OMG you just described my sleep issues perfectly. Do you find that it stays steadily like that if you let it? I ask because part of my issue seems to be that my internal clock is out of wack and seems to run on more of a 25 or 26 hour cycle. but if it settles it heads to being up at night, it is 5"30am right now xD Melatonin is amazing, and student hours suck xD

8 hours ago, Rising Sun said:

and I have to take levothyroxine too.

Me too! It isn;t so bad, although I dunno if it would be worse interacting with the other issues? The main annoyance is that its one of those things we'll have to take forever. I have had one interesting side effect, may be mild TMI



My periods have stopped, for the last few months I haven't had one at all. In the short term I am unconcerned because the doctor says it is fine. And no one can guarantee they aren't pregnant quite like a repulsed aro ace xD But I hope it comes back eventually because I want kids one day :)

 

Gently hugs poor Rising Sun

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@Ace-TheTimelordsCompanion My circadian cycle fluctuates a bit. I have to be careful to not stay up too late but when I'm nocturnal, I can still find sleep much more easily at 5 am and later. So I think it must be 25 hours long as well, but at least it's much easier to force if I go to bed at my preferred time. My body is much more receptive to sleep at that time just after dawn. I practically can't force it to sleep between 10 pm and 4 am, even if I'm exhausted.

With levothyroxine, you should on the contrary have normal periods again. They're supposed to stop if you don't have enough levothyroxine. Some people feel better with lower TSH, whatever doctors say, personally I feel best with about 0.5, right now it's slightly above 1 and I feel like a vegetable. Be careful about early menopause, it's likely to happen with a weak thyroid, don't wait too long if you want to be sure to be fertile the day you want to get pregnant... I hope for you that you won't have that problem.

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I had a normal circadian rhythm until 2012 when I switched to night shifts. Nowadays, I can hardly fall asleep on time without melatonin 9_9 @Rising Sun@Ace-TheTimelordsCompanion - it's not as dramatic as your cases, though :hugs:

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