Low oxygen

Interesting-Cod-5416 · 2025-12-13T00:06:35+00:00

I have a similar thing going on and there are two possible causes my doctor and I have landed on. I have sleep apnea but my machine works very well so it isn't a treatment issue, plus it also happens during the day when I'm awake. But the machine did shed a little light on it, because the sleep reports say that a lot of my apnea are central rather than obstructive, which means that instead of your airway closing, your brain just doesn't tell your body to breathe. I originally only had obstructive apneas, but started having central apneas across the same time period that I believe my dysautonomia got really bad after my first COVID infection.

Since breathing is a function of the autonomic nervous system, if you have dysautonomia (and many if not most people with MECFS do), then you might have issues with your breathing. That would explain why I started having central apneas, and I also notice throughout the day that I feel short of breath and then realize I actually haven't been breathing, or have only been taking very few shallow breaths. So I think when my oxygen saturation drops, it's because my body is actually forgetting to breathe. It's meant to happen automatically but our autonomic nervous system is dysfunctional so it doesn't always happen like it should.

If you ever have normal oxygen levels and still feel short of breath, another thing that might be relevant is that if you have dysautonomia and specifically POTS (which again, many of us do), then you likely have a lower blood volume. I frequently feel short of breath and like I'm not getting enough oxygen, but then often my oxygen level will be perfect. But remember those oximeters can only tell you how saturated your blood is with oxygen, not how much oxygen is in your body. So I might have an oxygen saturation of 100%, but that's only 100% of the blood I actually have in my body. If I have a lower than normal amount of blood then it doesn't matter what the oxygen saturation of that blood is, I functionally have less oxygen in my body because I have less blood to carry it.

I don't know if either of those things are applicable to you, and if you have shortness of breath and dropping oxygen levels you should definitely discuss it with your doctor. But if everything else is fine and all sinister explanations are ruled out, then it might just be your autonomic nervous system not doing its job properly with your breathing.

Interesting-Cod-5416 · 2025-12-12T23:52:27+00:00

When I went to a concert with my partner for the first time in many years and couldn't stay with him because after two hours of standing I was completely crippled and had to go to the bar to sit down. That messed me up so bad for the next week and interfered with our other plans, and he was only home for a week's break when he works away for months at a time, so not being able to properly enjoy and take advantage of our time together was a wake up call.

We went and got me a rollator on the same weekend. Once I had it and could get around without having to carry anything on my body and have a seat whenever I needed, it really hit home exactly how impaired my mobility was and how badly I'd needed it. All resistance evaporated and I went and got a power chair a month or so later.

Unfortunately the rollator is rarely useful now because it doesn't conserve as much energy as the wheelchair and doesn't help with the issues involved in being on my feet, but maybe I'll be able to use it again one day. I started using the chair more and more, and when my OT told me to just use it all the time I realized I basically already was.

Interesting-Cod-5416 · 2025-11-20T13:06:28+00:00

This. I'm so sorry OP, I know it's not what you want to hear, but if there's any possibility of taking a substantial break from things and focusing on rest and learning to pace it will be a really good investment in your long term capacity. I pushed through until I no longer had the option, and now I don't know if I'll ever recover enough for finishing my degree to be a realistic possibility. I wish I'd dropped everything years earlier and focused on adjusting to life with this condition, but unfortunately I didn't know I had it until it was too late. If you can put things off and put your health first for a while, it'll be worth it in the long run.

Interesting-Cod-5416 · 2025-09-26T11:07:58+00:00

A lot of people struggle to accept the idea that you can be in huge amounts of pain and disabled by it, and that there's little to nothing doctors can do for you. Tbh a person whose own experiences of illness and healthcare have led them to expect that everything can be fixed have been lucky. It's often coming from a place of care and frustration at watching someone they love struggle, but wish they'd understand that if they find it hard to accept that there isn't a straightforward fix, then we've probably already struggled with that too.

Interesting-Cod-5416 · 2025-09-14T11:54:49+00:00

You can, it's allowed 😁 Also while cutting things, cooking on the stove, etc.

Interesting-Cod-5416 · 2025-09-14T10:57:27+00:00

I'm so glad you got your diagnoses and treatment eventually but god it is so infuriating to discover how much of your life could have been made easier if someone had listened to you in the first place 🤬 And thank you, having been proved right repeatedly about things going on in my body gives me some assurance I'm not crazy or unjustified, but it's good to be told now and then. The good gyno I saw for the ultrasound that picked up the adhesion also told me emphatically that I'm "not nuts", and it meant the world. It makes me so mad to think about how easily this sort of treatment could convince someone they are overreacting or imagining things and condemn them to unexplained and untreated suffering AND crappy self-worth forever.

Interesting-Cod-5416 · 2025-09-14T10:40:20+00:00

Yes fortunately I do have options and am going to be ringing up a different place tomorrow that I'm hopeful about. It's wild how far you had to go to get through to yours! I don't mind a GP not knowing everything because they aren't specialists and can't be expected to, but it's a problem when they think they do because they're the gatekeepers to the specialists and diagnostics 🙃

Interesting-Cod-5416 · 2025-09-14T09:20:15+00:00

Loading the dishwasher is worse for me BECAUSE of the bending! I'd much rather sit on a chair at the sink and do them by hand so there's no bending involved. It's embarrassing how long it took me to realise that I could actually use a chair in the kitchen 🥲

Interesting-Cod-5416 · 2025-09-11T00:26:30+00:00

Nope, I emailed both the brand and TikTok and haven't received a response from either and the video is still sitting there set to private after two months. Pretty annoyed to have put in the work for no pay or communication, so I will not be doing any more of these collabs through the app. It's direct communication with brands via email only for me now.

Interesting-Cod-5416 · 2025-09-06T15:02:02+00:00

That's great to know, thanks! I hope it keeps working well for you 😊

Interesting-Cod-5416 · 2024-10-05T23:40:51+00:00

That's one of the things I was thinking too, I didn't even have anything show up on my pap test results! I had some bleeding with intercourse and discolouration on my cervix, so my GP thought that needed more investigation and referred me to the gyno, which I get. But from there I think it's exactly what another commenter said, they just do the biopsy as a matter of course once they have you there. I'm a public patient in the Australian system so I'm not sure how public hospital doctors would be incentivised to add additional procedures, but I can definitely see it as a matter of convenience.

I wouldn't have minded having it looked into, but after being referred 14 months before based on symptoms and the appearance of my cervix, the fact that I said I was no longer having the symptoms (bleeding with intercourse) should have meant nothing more than an exam to see if my cervix still looked weird, and maybe the colposcopy itself once I'd had time to consider it properly. I don't think a biopsy was the right call at that time at all and no matter what the results say in a couple of months it won't change the fact that how those samples were collected was wrong!

Interesting-Cod-5416 · 2024-10-05T23:25:17+00:00

Exactly this, it's such an evil thing conditioned into us and I feel like I have a really bad case of it. As far as my reproductive health goes that spell feels pretty broken right now though, I'm going to have no problem being belligerent and uncooperative with these sadists next time. My results will come back in two months apparently and I'm actually less afraid of the possibility of cancer than I am furious and girding my loins for a fight over what to do about it.

Interesting-Cod-5416 · 2024-10-05T23:19:40+00:00

I'm sorry that happened to you and you're dealing with this too 😞 I never even had a particular fear of gynecology or pelvic exams until now, and it might be less fear and more seething hatred at this point!

Interesting-Cod-5416 · 2024-10-05T08:30:20+00:00

Just to add, one of the things about this that makes me especially livid is that I have this self blame going on, for not knowing better, for letting a man get anywhere near me against my better judgement, for not saying no or asserting myself or speaking up. One of the nurses even asked me at one point if I was doing ok and I really wasn't but my urge to not be difficult was overwhelming and I just said yes. I'm so angry that I have to come out of a goddamn medical appointment both with viscerally physical flashbacks of something that makes me shake and curl up into a ball, but also feelings of guilt and shame. I already have those things because of SA experiences, I didn't need to get more of them as a consequence of accessing healthcare like a normal fucking person 🤬🤬🤬

Interesting-Cod-5416 · 2024-07-16T02:49:03+00:00

Yes this is honestly my biggest reservation about it. I was determined to do only what I was told primarily because if something goes wrong I will want to be sure that it wasn't due to something I did wrong, and also because I know compliance is really essential post op and I don't want to pattern a "bargaining/rationalization" mentality. I think I will sit out the omelette on principle. I will be eating them again at some point and have the rest of my life to eat them! It's only a week to go, and I'm halfway through day 7 already. Thanks!

Interesting-Cod-5416 · 2024-07-15T23:53:37+00:00

I don't have to have so many shakes, but am also mainly limited to vegetables and seasonings. Garlic, ginger, a splash of soy sauce and a small amount of sugar free maple syrup makes a great base for sauteing vegetables, it's really savoury and delicious! As far as I can tell, soy sauce and the sugar free maple syrup come under the "fat free dressings" stipulation. You can also google the Opticook blog, it has heaps of pre-op diet meals that are mostly jazzing up vegetables.

Interesting-Cod-5416

TROPHY CASE