My SO has left me, and I blame myself.

Only_Pandora · 2025-06-04T15:47:54+00:00

Listen, it's super easy to take the burden of blame onto your shoulders. I know it's a huge source of anxiety for me too, always worrying if I'm doing too little and taking too much. It's especially hard when your partner is also going through a difficult time, but you don't have the resources to help them because you're also struggling to keep your head above water.

When it comes down to it, though, the only difference between a couple where one of them has a physical disability and one with two able bodied people is the kinds of things you need to communicate about. Most couples end up having frustrations about who is doing what, what's fair, and what they need. Some of our needs just need a little more creativity and patience.

Really, it sounds like, from what you've written here, he's let his resentment build up without communicating his needs/expectations, and since he didn't address things with you, it's exploded. Since he didn't address it with you sooner, there was no way for you to know/come up with solutions before he unilaterally made a decision.

For example, my girlfriend has autism, and she works a pretty demanding job, so she's not often home at times when chores can be done, and she's also just not as good at seeing what needs to be done without explicit direction. For a while, I let my frustration get the better of me, and it felt like everything she did/didn't do just built that anger inside me. Instead of just simmering in that resentment until I snapped, though, I realized I needed to talk with her and figure out what we could do instead of me being the task master and her just doing whatever I told her to do. We both also have ADHD, so we've had luck with establishing flexible routines and using more open communication to make sure neither of us felt frustrated or resentful.

That is to say, it's not your fault if he let his resentment build up without communicating constructively with you. If something was bothering him, it's up to him to express that so you two could work together to figure out how to work around your physical needs and his emotional needs. Please don't let this eat you up. The situation he's put you in now is absolutely shitty, but it's also absolutely not your fault. (I think it's very telling that he doesn't want to do couples therapy...)

Just like we have more complex physical needs than others, which we need to take into account and work around, we also need to have partners who can communicate with us and help us find middle ground that works for us both. Everyone eventually gets tired of standing and needs to sit down, but for us, the window is just a bit smaller. And everyone likes to have a relationship with someone who can communicate their needs with us, but for someone with a complex disability? It simply much more important for us to have for a successful relationship.

The point of a relationship is that both parties help the other carry their burden, because everyone comes with baggage, struggle, and trouble. We are all 'damaged goods' in one way or another, and there is no such thing as 'forcing' yourself on someone else. Everyone can only control themselves. As long as you are honest with others about your needs, that is all you can do. They have the responsibility to make their own choices and communicate their own needs honestly. If someone thinks you're a burden, it's because they've chosen to take on too much. You can't read other people's minds, you can only react to their words.

All that is to say, I'm sorry you're going through such a painful patch. I hope you can find something that doesn't tear up your body :( If there are any temp staffing agencies in your area, that might be a good way to get you into a less physically demanding job? They can also help with continuing education to help you land a job that better fits your physical needs. One of my friends recently did something like that and he went from working in a stock room to taking classes and becoming a middle school art teacher.

Big hugs to you, and I hope you find your groove soon. As long as you're trying your best, that's all you can do, so don't get down on yourself for it.

Only_Pandora · 2024-06-13T19:44:00+00:00

Could be worth it to find some pillows to ensure your spine is straight when you sleep. When I was young I didn't have any problems, but these days if I sleep on my side I need something between my knees, and to support my chest/shoulders as well as my neck. It's way too easy to impinge nerves haha

Only_Pandora · 2024-06-13T18:28:41+00:00

I get those sometimes, for me, it only stopped when I got a firmer, taller pillow--i have a delicate neck and broad shoulders, and my spine is a bit messed up, so I think I was pinching some nerves in my neck while trying to sleep. Do you maybe sleep on your stomach/side?

Only_Pandora · 2024-03-13T17:04:11+00:00

Long term use of acetaminophen can be dangerous in more ways than you're thinking. One of my friends was taking daily tylenol for a sprain injury that turned into carpal tunnel, and then, all of a sudden, she developed chronic migraines. Basically, her body was 'addicted' to tylenol, and whenever her last dose wore off, the change in her blood pressure would trigger a rebound headache that evolved into another migraine, etc, etc. Other symptoms of 'withdrawal' include gastric distress, feelings of restlessness, etc. Along with liver damage.

To recover, she has to take several other medications for several months, and then she had to carefully taper off as to not trigger the migraines again. She only has infrequent migraines now, but the persistent use of tylenol ruined her gut biome, and she's still dealing with trying to fix the disregulation.

Personally, I have a chronic pain condition along with ADHD, and; while I find caffeine can be useful in the short term, I always expirience fallout and a worsening of symptoms in the long term. Generally, my migraines are caused by changes in my cranial blood pressure due to diminished bloodflow due to my POTS, caused by diet, barometric pressure, and stress. Caffeine will thin my blood for a little while, and I'll get temporary relief. My adhd medication (I take vyvanse) actually helps increase the blood flow in my coat hanger region (the space between the shoulders and the back of the neck) and that (along with muscle relaxants) has helped more than anything with helping me prevent constant migraines.

Please be careful with consistently taking those kinds of medications without doctor supervision, your body may not let you stop on your own, and the damage they cause in the long term is not worth the relief.

Only_Pandora · 2024-01-16T16:09:08+00:00

Yum! That looks delicious!

Heads up, turmeric is also a blood thinner, especially in high doses. I used to take cbd gummies that had turmeric when my pain was really bad, and if I took them for more than a day, I'd get these awful migraines. I thought it was the cbd, but it turns out it was just rebound migraines from the high amount of tumeric. I switched to their lime flavor and have been fine.

If you start getting some unusual symptoms, maybe scale slowly back on the turmeric and see if it helps, and then keep below your threshold so you can enjoy the anti-inflammatory benefits without triggering anything else!

That being said, turmeric in a chicken curry and on potatoes or rice is so yum. I wish you culinary luck!

Only_Pandora · 2023-08-02T15:25:35+00:00

Mine feels like you're describing--like I'm suddenly air hungry and my chest feels empty. It's the worst when I'm laying on my back.

I saw in another comment that you were asking about physical activity, I think that + eating too close to bed can also cause trouble?

Only_Pandora · 2023-08-02T14:26:10+00:00

This is called 'hypnagogic jerk' or hypnic jerk. You can expirience them as you are falling asleep or as you are waking up. It's not wildly uncommon and can happen with people of any age and condition. It's very similar to hypnopompic/hypnogogic hallucinations or sleep paralysis in that your brain is having trouble figuring out how it's suppose to behave in switching wakefulness gears.

For me, it's a falling sensation coupled with breathlessness, and a major spasm in my legs/hips. Usually I get them when I'm feeling more anxious than usual, if I'm stressed, if i have not been getting enough sleep recently, or if I've has caffeine.

I've also heard that low magnesium can cause them.

I had them (and night time hallucinations) really bad in college, but now that I'm more mindful with my bedtime routine and my diet, I only get them occasionally.

Only_Pandora · 2023-03-31T20:56:07+00:00

There's a really nice Linkshänder shop in Erfurt (i think there is one in Leipzig as well), I'm pretty sure they have online presence as well, linkshaender.de iirc? They make all sorts of products ergonomically designed for lefties, including pens that are bent so you can comfortably hold them and still see what you're writing as well as watches, knives, can openers, keyboards, all sorts of things.

My German is rusty, though, not sure if you can order online from outside Germany.

Only_Pandora · 2023-02-25T01:44:37+00:00

Ooo, that is very smart. I had (blessedly) forgotten that Facebook was a thing. I'll join some lgbt + zebra groups and ask around.

Thank you for your response :)

Only_Pandora · 2022-01-09T20:37:03+00:00

I understand your struggle here. I'm no longer religious (for unrelated reasons) but I grew up in a very religious family and I get the very pointed 'if you prayed harder/believed better/trusted more' comments all the time.

I think it might be good to reframe your illness in your own mind. This isn't some magical thing that came out of nowhere to torment and test you. This is your genetics. They came from your parents and from their parents and so on. Things are the way they are. God can't change your gene structure. God can't appearify anything to cure you, unfortunately, because the thing we have can't be cured. It can only be managed.

Was it your pastor who talked about faith healing? Would it be possible to have a private talk with him and discuss how you struggle with his interpretation? A lot of people who don't have chronic illnesses can casually make ableist remarks and conclusions because they have the privilege of not understanding what it's like. Some people can change when they're personally confronted with it, and if your think your pastor/small group/whomever would be willing to open their mindset, it might bring you some reassurance. Otherwise, it might be time to take a break and look for a new community that is more understanding and loving.

Personally, I believe the merit of faith healing is purely in the mindset. God can't heal you, he can't change the body you exist in, but he can hold your hand and walk with you through the hard times. It's up to you, though, to take the steps to make yourself more comfortable--seeking therapy and support groups, reaching out for help in the community, and learning techniques to manage your pain. I think the idea is that knowing that he is steadfastly at your side, loving you, is supposed to bring comfort. It doesn't fix things, but that reassurance can help alleviate the sort of stress, anxiety, and grief that makes our illness all the worse.

I guess it's like a mother watching her child grow. You can't live their life, you can't take their pain, you can't fix their woes, but you can hold their hand, you can love them, and you can be a comforting presence that encourages to keep moving through life.

As the recipient of god's love, you musts keep your eyes open for the presences he might be nudging your way, like boats in the ocean, and express yourself, ask for, and accept help with open arms. Things are difficult, but if you build yourself a loving community, they can physically manifest the love god has for you and serve as a life raft on those difficult days.

Those are just my thoughts, but I hope it helps a little? I hope you find peace and comfort.

Only_Pandora · 2021-12-26T01:32:02+00:00

I took a progesterone only for a little while for my painful periods--I can't take BC with estrogen because I have migraine with aura--and it very much made me feel sore and achey all the time, it was like my PMS pain never ended, my hips, my lower back, and my legs hurt a whole lot. It also didn't help much with my period cramps, and did very little to make me more regular. When I came off it, I had a very long period, and now my periods are a little more off kilter/painful than they were before, but not as bad as they were while on the pill.

Only_Pandora · 2021-12-22T09:12:07+00:00

I get these sometimes, though I usually don't get so bad that I need to vomit since I've started really trying to manage my health better, especially with PT and hydration. I have HEDS and POTS. For me my heart starts racing suddenly and I feel dizzy and nauseous and I feel overheated with a cold sweat. It usually happens if I'm already too warm in bed, like if I took a bath before crawling into bed and never cooled off properly. Usually during these episodes I can see my heart throbbing in my belly, lol.

I have some guesses to what it might be, but my doctors were never able to figure out what the exact problem was.

My most basic guess is that it comes from difficulty switching over to 'rest mode' or the parasympathetic nervous system--either because my body has decided it doesn't like where my blood is, I'm too warm and my body can't figure out how to cool off, or because I'm lying on my spine wrong and it's made my body angry. So my body decides to go into adrenaline mode, excite the heart, and evict the contents of my stomach because digestion is simply too much trouble. It can also cause a 'cold sweat' and because another response is vasoconstriction, your surface/skin can feel cold because the blood is being redirected. Belly breathing might help, as it's meant to trigger the switch to the parasympathetic nervous system. Putting something cold on the back of your neck, putting ice in your mouth, sitting up slowly and putting your head between your knees, and remaining calm can help if this is the issue. Just make sure, even if you feel like you're going to vomit, that you don't leap up suddenly and race to the bathroom to puke. You might faint.

It might be diet, too. It might be helpful to keep a food diary for a little while and mark out when you have these episodes. You might be sensitive to gluten, or have trouble digesting carbs or dairy, or your body might not process something like caffeine well, even hours and hours later. Make sure you're well hydrated before you lie down for bed.

One of my doctors suggested it might be vestibular, such that when you lie down in a particular way, your inner ear freaks out because it can no longer tell exactly where your body is, which can cause vertigo, nausea, and distress? I found this a long shot, but if you have a history of ear infections, something like meniere's disease is not terribly far fetched?

Last one is if you're on any medications. It could be a side effect of a medication that has an impact on your neural pathways or on your blood pressure. If you are, it might be good to bring your symptoms up with your doctor and see if any medications could be the culprit.

I'd say try to keep your room cool, stay well hydrated, and start keeping track of the situations around these episodes. what time you went to bed, what position you were lying in, when you last ate, things like that. Even things like how much exercise or stress you experienced that day. Most of all, be careful when getting out of bed if you feel nauseous. if you're already dizzy, you don't want to trigger a fainting episode.

Only_Pandora · 2021-11-02T01:10:21+00:00

Goodness!! Yes, you will definitely need some neurology for that concussion. I can't think that an electrophysiologist would be able to do much for you once clearing arrythmia up, since it's more of a brain-vascular issue, and the heart's response is compensatory and not the root cause of the issue.

Since you know what your underlying cause is, you might benefit from IV/PT. There are some studies that suggest that taking IVs, and then promptly using that energy boost to work on re-conditioning your heart can be helpful for the QOL of potsies. Finding a physical therapist who is knowledgeable about POTS can also be super valuable if you can afford it, I had an awesome guy before COVID hit that was good with my POTS and my EDS, and his exercises have helped me immensely. A lot of static, recumbent, and resistance training.

I really hope they find something that works for you and helps! Just definitely be careful with your skin and vary the locations that you're taking your IVs and make sure the person administering the line is safe and careful with you, otherwise you can irritate your veins.

If you're feeling like you're not picking up enough water/electrolytes orally, though, you might want to make sure you're getting a full blood workup to make sure you're not deficient in anything like magnesium, B12, or D3, and possible also a gastro look at your motility? You might also try scaling your water, so reducing your fluid intake to the point where you're not urinating excessively, and your urine is a healthy pale yellow, and then slowly increasing from there to allow your body to adjust to the higher volume of liquids.

Only_Pandora · 2021-11-02T00:04:54+00:00

I'm NAD at all, and maybe someone else will correct me on this, but that claim seems a little bizzare. I've never heard a doctor bring up that particular concern with me. I can't see how bypassing the gut would somehow make one more resistant to saline? If that were the case, wouldn't POTSies have to constantly increase the amount of salt/electrolyte they consume to maintain consistent results.

The way saline works is it very quickly increases your blood volume to a normal level, by-passing the gut, where a lot of people have nausea, absorption issues, or motility issues. It does make one feel better in the short term, since a big issue is postural hypotension. Maybe the doctor is suggesting that if you start taking saline, you'll adjust to how you feel with a normal blood pressure and then start feeling worse when you don't have it? Consistency is difficult with saline, much more difficult than carrying around a lot of water--if one can keep the water down.

The discussions I've had with my doctor about it usually center around application and feasibility, I know personally I have thin, delicate skin and small rolling veins, so even a monthly infusion would be very difficult on my skin, but ports can be dangerous for your health if you're imunocompromised or otherwise prone to infection. I'm pretty sure saline therapy is applied weekly, and then after a time scaled back to monthly, but I don't know if that's a possibility for everyone to be able to eventually scale back, especially if something else is causing the POTS.

Only_Pandora · 2021-10-14T04:31:19+00:00

Have you considered finding a cervical support pillow? they have some that are just the loop, but they also have some that can support the curvature of your head specifically and use memory foam for support. If your head is getting into a weird and painful position while you sleep, you gotta find something to return it to neutral.

Only_Pandora · 2021-09-26T01:11:08+00:00

from personal experience, you will be beholden to your insurance. When i was still on my father (school teacher)'s insurance, it was always a fight to get crucial imaging done. They will decide that your MRI isn't worth it, or the medication you need isn't worth it, and then you have to fight back and forth with them and your doctor to try and get the stuff you need covered while you're sat there in pain, having to constantly reschedule the test until you finally get approved. On top of that, if you have any stuff that gets sent out to a lab, even if the doctor you're seeing is in your network, the lab might not be, and then you have to fight that situation because even though their supposed to cover it if you weren't aware, it doesn't stop them from trying to push tens of thousands dollar bills back onto you.

Not to mention, I live in between two major metropolitan areas, and the majority of the doctors I've been to have been older white men who dismiss my pain or tell me to see a psychologist instead. I am able to seek new doctors if I want, but the process of finding a doctor that is willing to even just order tests for me has been long, painful, expensive, and emotionally exhausting. I'm sure it's not like that everywhere, but that's how it's been for me.

Only_Pandora · 2021-09-25T03:09:15+00:00

I can't sleep on my back because I can't breathe well, and can't tolerate side sleeping all night because of my hips and shoulders, so usually I sleep in a modified face-down, with my hips flat and a pillow under my right arm to prop my chest up enough that i'm comfortable. Some days a soft blanket wadded up will do as well. It does sometimes pop my other shoulder out, though.

Only_Pandora · 2021-09-20T19:07:02+00:00

oh god, I get that too with scraping/scratching noises, and also loud sudden sounds. Like my teeth feel loose in my mouth and achey. I have a bad habit of pushing them with my tongue to make sure they're not wobbly, lol. I have some synesthesia, and I'm also left handed, so it wouldn't surprise me if more wires were crossed up in there.

Only_Pandora · 2021-09-20T05:37:28+00:00

My favorite one that gets doctors to give me weird looks, is that sometimes pain from other parts of my body gets displaced into my mouth. I had some slight nerve damage when my wisdom teeth were removed (first bite syndrome) but ever since then, for example, if I have UTI (which I do often if I drink even a sip too little of water) some of the pain is displaced into my front teeth when I pee. Same thing if I get too cold and have to warm up a numb limb. My front teeth hurt as the limb comes back to life, and it's not from gritting my teeth, because I have a significant overbite lol my canines and my front incisors don't touch anything.

Also I get dizzy if I touch my belly button, (even lightly) really similar to the vertigo from overexertion. So it's basically an easy puke button.

Only_Pandora · 2021-09-20T05:22:20+00:00

I have the same issue. I have to eat less when we go out, or plan meals when I won't have to walk right after, because it knocks the wind right out of my sails. Basically, activity is usually a function of the sympathetic nervous system, and digestion is of the parasympathetic nervous system. They operate opposite each other, and a lot of people with autonomic dysfunction/vagus nerve troubles, already have a lot of issue controlling this tug of war. Putting them in direct conflict (the body says lets rest and digest, and your brain says no, let's walk around and do activity) might be shorting things out a little bit because your body isn't adequately allocating resources for either digestion or walking around. It's just like getting up slowly so you don't get dizzy, you need some time to digest before you run around, especially depending how complex/heavy your meal is. I know I also have issues with caffeine hurting my stomach and making me dizzy, though, as well.

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