u/FreeFalling3227

Hi! I’ve been bed bound since January with an extremely severe positional headache. Originally they thought it was a CSF leak, but nothing came back on scans. I have severe proximal junctional kyphosis, and my neurologist thought the deformity of my neck was affecting blood flow. He was right, I have almost no pulsatile flow in my jugular. It gets more compressed when I’m upright, but it is compressed even lying down. So, we’ve decided on a diagnosis of intracranial hypertension due to jugular compression. I will be having a CT Venogram at some point, but first of all he’s trying me on Diamox in the hope that reducing the amount of CSP will ease my symptoms.

I’m a little scared of the drug though as there’s a lot of side effects listed, I was wondering about anyone else’s experience with this drug? Specific questions being: what was it prescribed to you for, what dosage were you on, did it work, what side effects did you experience?

I’m also worried about my bowel motility and OH. My bowel is completely non functioning, I take 5 different meds for it and use the Peristeen system (an anal irrigation system). We’re struggling to keep it somewhat functioning even with all the meds and we might run out of options soon. One of my meds is 4 Movicol sachets a day, which tries to get as much fluid into the bowel as possible. My neurologist has reassured me that this drug works differently to a standard diuretic and that it shouldn’t affect my bowel but I’m still concerned. I’m also worried if it’s flushing fluid out of my body, will this exacerbate my dysautonomia?

Please let me know your experience, good or bad! I find information much more reassuring, I’d rather know the bad things going in than being surprised by them haha! Sorry this is a bit lengthy, I just wanted to make sure all the info was clear🙈

I just want to start this with the preface that I ALSO HATE INFOLD MOST OF THE TIME. This is not a pro Infold post, just something I’m curious about.

Since the new update dropped I’ve seen a LOT of people asking them to add movement to the new wings from the mount outfit and also to allow you to toggle the position of that wings. But… they never advertised that they would move or you could change the position, so if you don’t like that about it why did you pull? I’m just confused when an outfit has been shown and it’s clear what you’re getting from it. If it’s a deal breaker for you… don’t pull for it?

I’ve seen a bunch of people say “oh if we complain like we did for the deer”… the deer ability was literally useless the way it was. The ability did not work and that was not clear from the promotional material. Both the functionality and the incorrect advertising was the problem. In the gryphon outfit, it’s not only purely an aesthetic issue but it also was shown accurately and you could see the wings don’t move except for in animated parts.

I just think we should keep complaints for genuine issues that are not just “I’d prefer if it was this way”. A cosmetic preference is nowhere near as important as a completely broken ability.

Plus, none of the wings move unless it’s a hover ability like blooming dreams. There was nothing to suggest these would move in anyway, so I’m just confused why people are upset when we all knew what to expect?😭

And don’t get me wrong, feel free to complain on here but don’t waste survey and customer service requests on a purely cosmetic issue.

Hi everyone! First of all I love this page, finally a place where I can get recommendations for products available in the uk!

I don’t want to go on too much but essentially I’m extremely physically disabled, I’m a full time wheelchair user and require 24/7 care. I have basically zero independence and my mum is my full time carer. I’m also autistic on top of my physical conditions. It’s not really important what my disabilities/illnesses are, just that I have no mobility or ability to take care of myself.

I’ve been vegetarian for 9 years, ever since I turned 18 (I’m 27 now). Because my parents provide me food and cook for me, it’s extremely hard to get them to adjust dinners. But they have “allowed” me to go vegetarian which I’m grateful for. I also do not drink any dairy, I only use oat milk.

However, 3 of my major safe foods (I have a lot of food texture issues from my autism) are tuna, eggs, and mayonnaise. I know tuna technically makes me a pescatarian. I would really like to replace these in some way and I’m looking for recommendations! I’ve always eaten the Tesco’s own light mayonnaise, if that helps guide recommendations!

The other reason I have kept these foods in my diet is because I do not like tofu or tempeh and I am struggling to get enough protein in. I have tried them quite a few different ways but I cannot get past the “squeaky” texture of the tofu, and I can’t even describe the tempeh texture except… gross. So while I do eat a lot of lentils and beans, I’m really not getting nearly enough protein solely from plant based products. I’m wondering if I should potentially try: TVP, Soy Curls, or Seitan. My parents get really annoyed if I buy food and can’t eat it due to texture issues, so I’d really appreciate if someone could explain the textures of these products and let me know whether they are different enough from tempeh and tofu for me to potentially enjoy?

I feel very guilty because I take 50+ tablets a day and not all of them are vegan, which I can’t avoid unfortunately. I also use a lot of plastic because I have a catheter etc which uses soooooo much single use plastic which I feel awful for. I’ve also had long periods of my stomach not working and having to rely on calorie drinks, which also contain dairy.

I’m feeling really guilty about the effect my medical care has on the planet and the animals, and I really want to offset that by becoming more vegan. But it is somewhat harder for me as I can’t go food shopping, cook for myself, go to restaurants, and I also financially depend on my parents, which adds stress when vegan products are more expensive. Any ideas in which I can continue to veganise my life in anyway I can, would be extremely appreciated. I don’t buy anything leather or any clothes/accessories that use animals.