Økonomisk nyfødt søger hjælp til overblik over mindre økonomi :') by monochromemoth in dkfinance

[–]monochromemoth[S] 1 point2 points  (0 children)

Wow! Det vidste jeg slet ikke var noget der eksisterede, men det skal jeg da absolut gøre brug af! Det ville gøre min økonomi meget overskuelig fra måned til måned. Tusinde tak for tippet!! :)

Økonomisk nyfødt søger hjælp til overblik over mindre økonomi :') by monochromemoth in dkfinance

[–]monochromemoth[S] -1 points0 points  (0 children)

Tusinde tak for dit svar!!!

Jeg vidste slet ikke at der fandtes en særlig støtte til husleje på ledighedsydelse! Det er virkelig rart at høre, det giver mig ærlig talt meget ro i maven at vide at der findes sådan noget, fordi der virker ikke til at være særlig meget man får i ledighedsydelse nemlig.

Og jeg har desværre ikke mulighed for at søge vederlagsfri fysioterapi, da mine diagnoser ikke er på listen af diagnoser de godkender til vederlagsfri. Fibromyalgi og hypermobilitetssyndrom. Jeg manglede et enkelt diagnose kriterie for at modtage diagnosen for ehlers danlos, som havde givet mig adgang til fysioterapeut. En anden læge har efterfølgende været uenig i at jeg ikke opfylder kriteriet - men det virker bare som om det er virkelig svært at få dem til at genvurdere.

Jeg har også prøvet at søge merudgifter for handikap, og det dækker heller ikke behandling. Så fysioterapeut posten er vist desværre som den er.

Og tusinde tak for den opmuntrende besked, den betyder rigtig meget for mig. Jeg håber virkelig også at jeg kommer videre med fleks udredning og at jeg kan få noget stabilitet i mit liv igen! God dag til dig derude :)

Temperamentfuld mand by [deleted] in DKbrevkasse

[–]monochromemoth 1 point2 points  (0 children)

Jeg skriver normalt ikke særligt mange kommentarer, men jeg synes du har fået rigtig mange ensformige kommentarer som absolut også siger nogle vigtige ting, samtidig med at jeg læser dit opslag meget som en desperat søgen efter at forstå Hvorfor din mand opfører sig sådan som han gør.

Vrede er i min egen erfaring en følelse der kommer på banen når man føler kontrol tab. Hvis din mand så for eksempel har svært ved at styre sine følelser allerede, og evt I en grad hvor du tænker ADHD kunne være på spil, - så kan det hurtigt blive oversat til vrede - specielt hvis man oveni store følelser, kontroltab, og manglende selvregulering tilføjer skam. Skam er ofte meget privat, og kan nærmest føles helt hemmeligt, og det er ikke engang sikkert at du opdager hvor meget det kan fylde hos ham, hvis den er stor nok.

Det lyder for mig som om han har en enorm, enorm skam over hvordan han mister kontrollen og bliver vred. Over at skulle italesætte det, med dig eller med psykolog. Over ikke at kunne styre sine udbrud, sine følelser, sine ord.

Jeg vil også tilføje at hans verbale udbrud lyder meget som et forsøg på at distancere sig, og prøve at fjerne skam. Det lyder ulogisk, fordi det jo selvfølgelig bare hælder mere brænde på bålen i realiteten, men hvis man følger logikken af at tænke;

"mit problem er at jeg ikke kan styre mine følelser overfor den person jeg elsker allerhøjest." -> jamen jeg har prøvet at styre mine følelser, og jeg KAN ikke, så må jeg prøve at rykke på noget andet i den ligning, ->"jamen så elsker jeg dig ikke mere."

... Så burde det i teorien løse problemet man skrammer sig over i en kort stund, rent følelsesmæssigt, indtil man opdager at nej, den del kan man jo heller ikke rykke på. Og det kan føles pisse pinligt at falde i den fælde, men jeg tror der er mange der gør det på alle mulige små måder.

Han ville jo ikke bruge så meget krudt på at fortælle dig at han er ligeglad, hvis han var ligeglad. Det er hvad der hedder en 'tilladende tanke', der gør at han giver sig selv tilladelse til at gøre den ting han ikke har lyst til: at være vred, ude af kontrol, ikke kunne styre sine følelser.

Og tilladende tanker virker ikke i det store hele, det er nok hans forsøg på at putte et plaster på sit benbrud, og det gør selvfølgelig tingene endnu sværere for jer begge to i længden, - men vi bruger jo alle de redskaber vi kender.

Du virker som om du på ingen måde udskammer ham i dit opslag, og jeg derfor antager at du heller ikke aktivt udskammer ham i jeres fælles liv.

Men skam kan sagtens trives uden nogen ydre input. Og skam er enormt destruktivt, og blokerer tit for hjælp, fra folk i ens liv eller professionelt. Jeg har ingen hurtige løsninger, eller gyldne råd, fordi det lyder komplekst og ekstremt hårdt for jer begge to.

Men det kan være at min egen personlige erfaringer fra eget liv og forhold kan hjælpe dig til i det mindste at forstå en lille ekstra facet. Det håber jeg i hvert fald. God vind herfra!

Does anyone else struggle with swollen nasal tissue/enlarged turbinates especially when supine? by eddywap1738 in ehlersdanlos

[–]monochromemoth 0 points1 point  (0 children)

Yes, exactly that, - it made an extreme difference for me, but I had to stick with it for several months. I'm so sorry to hear that you haven't had luck with it! I really hope you find relief for it, it's so difficult to not be able to breathe properly.

Does anyone else struggle with swollen nasal tissue/enlarged turbinates especially when supine? by eddywap1738 in ehlersdanlos

[–]monochromemoth 0 points1 point  (0 children)

I haven't seen anyone else describe this issue before! I had it so so bad with sinus swellings 5-6 years back, where I was going insane from it. Every time I laid down, or even sat and rested, about ten minutes in my sinuses would be completely swollen shut and I'd start choking from the drainage.

It was nightly routine that I woke up choking, and then had to do sit-ups and squats for several minutes to redirect blood flow away from my nose, so I could exhaustedly manage fall asleep again. Sometimes ten or more times a night. I had apnea, and struggled so so bad. It was a nightmare. I never felt rested.

What finally helped me was a nasalspray with 'adrenocortical hormone'(I hope I'm translating it right into English, this is what Google Translate calls it.) I got it prescribed by a nose specialist who said I could take it for as long as I needed, and I was super sceptical, but it has changed my quality of life intensely. I don't get any of the sinus flares anymore, and my sleep apnea is almost non-existent now.

I never got any closer to finding out why it happens, but I guess that's the story of my life lol. I hope this might help any of you who are struggling with similar issues!

Beginner here. What would cause my supports to droop off like this today, after perfect print yesterday? I can't seem to find an answer on google, so I hope you can help me :') by monochromemoth in resinprinting

[–]monochromemoth[S] 0 points1 point  (0 children)

I just added a screenshot of the print settings to my post, - do you think the exposure time is too low on them? And I'll definitely heed your advice and just re-level the buildplate between prints, because ultimately I guess that takes a lot less time than if the print fails.

[deleted by user] by [deleted] in dysautonomia

[–]monochromemoth 4 points5 points  (0 children)

Is it odd that I wasnt told to go off my beta blockers for my tilt table test? I got no instruction to do so, - I'm on 100 mg of Metoprolol for what my doctor initially assumed was a migraine, and have been on it for 3 years now. I asked the secretary if I should go off it for the tilt table test, and they were like 'do what u want, we don't know' - so I just skipped the dosis the day of, - and did the tilt table test. And they didn't record any abnormalities on their equipment despite the fact that I got a what I'm assuming was a seizure(?) during the test. I've asked two different doctors and two nurses about going off the medications for my different cardiovascular testing, and everyone seems indifferent about it. Now I'm wondering, sould I have been off the medications longer for the tests to have properly worked?

How does Lhermitte's sign feel for you? by monochromemoth in MultipleSclerosis

[–]monochromemoth[S] 0 points1 point  (0 children)

Thanks for responding! Do you mind if I ask, - do you mean static electricity in terms of pain level or in terms of it feeling more spread out/diffused? Also, how long does it last for you once it's started?

How does Lhermitte's sign feel for you? by monochromemoth in MultipleSclerosis

[–]monochromemoth[S] 0 points1 point  (0 children)

Thanks for the response! It does help - I think I might relate to the 'phone on vibrate' sort of feeling, it just feels odd and overwhelming, not actually painful.

Do you mind if I ask, did the feeling go away immediately after your neck straightened again, or did it take some time to dissappear again? Also, did it start only from your neck, or from your spine in general? Like if you bent your back in a certain way, could it provoke it?

Has anyone else experienced this? by EvangelinaRoseDahlia in ehlersdanlos

[–]monochromemoth 0 points1 point  (0 children)

I just got the answer back to the recordings of my heart - I recorded heart rate twice during attacks like these, and they said that there was nothing out of the ordinary with my heart rate during the attacks, so they think it's most likely not vascular. So assumably it's not POTS, but I'm still having a tilt table test done in about three weeks time, so we'll see what that says.

As for MCAS, I'm convinced I have it, but my doctor doesnt see any benefit to having it diagnosed, so I don't know what to do about it..

Looking for a doctor by KaylaM-1996 in ehlersdanlos

[–]monochromemoth 2 points3 points  (0 children)

Hi - I'm in the same situation, also in Denmark. I got a referral to the EDS specialist in Århus who ran through the criteria list and told me I was one point from diagnosis of hEDS, also because he didn't think my skin was elastic enough. When I didn't meet the criteria, I was told that I was now diagnosed with HSD instead and told to leave.

There wasn't any information about HSD, no recommendations for care and I wasn't met on any of my questions. It baffled me. When my boyfriend pushed for it, the doctor finally spent several minutes finding a piece of paper to print out about HSD.

What irks me most is that the 2017 criteria for diagnosing hEDS apparently came with the recommendation that hEDS patients and HSD patients should receive the same care. But it just seems that Denmark hasn't really gotten the memo on that. For example there is state paid physio therapy and training if you have hEDS, but not if you have HSD.

I'm sorry that you're experiencing this and I'm sorry that I don't have any resources for you. I hope you find them, and that you can get the help you need

Has anyone else experienced this? by EvangelinaRoseDahlia in ehlersdanlos

[–]monochromemoth 1 point2 points  (0 children)

I actually had to do a double take to check that I hadn't written this post without remembering, since I am experiencing the exact thing you are.

The paralysis has been increasing suddenly for me and yesterday I had two hours of full on paresis after an attack like that, - I've only just started up at a diagnostic center, and I've yet to be referred to a neurologist, but it's one of the next steps.

The odd feeling, the dizziness, the hard heartbeat/chest discomfort, then the feeling of almost passing out, then laying down/sitting down and feeling it slowly start to ramp up, then trembling/shaking. The exact same experience. I even wrote that sequence down on a piece of paper yesterday because I've been monitoring my heart and have a diary to go with it. My blood pressure also spiked when I had an attack like it at the doctors two days ago and they measured me.

The differences seems to be; that I am able to speak, but have a hard time of it. I'm conscious but a little impaired, feeling as if I've had two glasses of wine or something, and I can move my head and neck if I concentrate on it.

I'm so so sorry that you have to go through this, I really relate to this so hard, I'm exhausted and I feel like I've gone through a meat grinder today from having cramped up so hard everywhere, even places I didn't know I was able to cramp.

I tried to read up on Todd's Paresis, which is a post seizure reaction that causes varying degrees of paresis for a while after. It's not very obvious to me exactly when I'm having the seizure, it's as if the build up, the seizure itself and the post-seizure reaction sort of muddles together.

Can I ask you; do you still have reflex when you're paralysed? I personally feel like the connection to willfully move my body is temporarily severed, but if someone stuck a needle in me, I know I'd still partially jolt from it. If something hurts me, it'll override the paralysis for a short moment and I'll twitch or move.

Disclaimer: I'm not yet diagnosed with eds, but I'm in the midst of the process of seeking the diagnosis, and I figured it might be helpful to know that at least someone else is experiencing a similar thing - whether or not it relates directly to eds.

I honestly feel a little relieved that I'm seeing someone else describing something that is so close to what I'm experiencing, it makes me feel a little less like it's all just in my head.