Desperately need bathroom advice

[5YearsLeft]

I’ve been really sick for a few weeks now having trouble breathing since I over exerted myself in a very ill-advised attempt to travel. This means, I’ve had to increase my medication, which causes me to be in the toilet constantly.

It also causes me to have to spend a ridiculous amount of time cleaning myself when I’m done. This is horrifically humiliating, but I have no idea who to ask for advice. I’m seriously at my absolute limit. Everything is so painful and I’ve been a hideous bitch all day. I just cannot afford to spend even an extra minute sitting up in the bathroom because I can’t fucking breathe. I don’t have the energy. But how do you make it take less time? Buy wipes like for bairns? How do you throw them away? They can’t go down a toilet, can they?

I’ve always looked a bit askance at people who said they were in floods of tears and I want to apologize, because I was on the verge of them myself. Writing that out, I’m now in the ACTUAL floods of tears. It’s all just so humiliating. And the crying makes the breathing worse and I really can’t afford that.

If anyone has any advice, please. If anyone takes Mestinon (pyridostigmine) and has advice on taking it in a different staggered manner, please. (My neurologist is more concerned with my breathing, and told my stomach discomfort is neither here nor there - she’s very German about things sometimes).

MNHQ will vouch that I’m not a poo troll.

@5YearsLeft sorry your long thread had to be deleted. I enjoyed...(well, not enjoyed because that would be weird to get pleasure out of something created by your pain and shit situation, but I can't think of a more appropriate word, please don't think I'm some fucking weirdo getting her kicks from someone else dying!) Anyway, I [insert appropriate word here] that thread as you write really eloquently, your photos were gorgeous, and your sense of humour and irony was a comfort when I was struggling to sleep and feeling crappy. Shit, I hope you understand what I mean.

I'm sorry twats on here wanted to troll hunt or think you didn't know what you were doing. I hope that most of them meant it in a positive trying to help kinda way. I think your brutal honesty, which btw is nothing to be ashamed of, scared some people and their way of dealing is to try to fix things instead of just letting you talk. Or type. I think that's a human flaw, we always want to fix things and make them better, rather than allow ourselves to let go and admit things are beyond our control. That's too scary for us as it shows our own mortality.

I will freely admit I know fuck all about any of your illnesses and couldn't offer any suggestions even if I wanted to. I can give cat advice though, or advice on good rum. That's pretty much all I'm good for! 🙂 Oh and methods of procrastination when there are important things you have to do.

Please don't give up posting about your situation, that is, if it is helpful to you to be able to let it out. I'm sure I'm not the only one who would miss your posts. You might not feel like it, but you are an amazing person and a bit of an inspiration too.

Take care of yourself as much as possible.x

Use a bottle of water and tissue. You don't need to invest in sprays. They are nice to have but a bottle of water or jug at home is just as good. Most of the middle east do this. I know from experience.

www.google.com/search?q=bathroom+water+jug+for+toilet&tbm=isch&chips=q:bathroom+water+jug+for+toilet,online_chips:bidet:uSrw6XxivFE%3D&client=ms-android-samsung-ss&hl=en&sa=X&ved=2ahUKEwjUj5aMs9v5AhULaRoKHeDTCsgQ4lYoAXoECAEQBw&biw=384&bih=723#imgrc=nm9_Z7oTdAcuHM

Something like this or jut a small water bottle. You can put holes in the lid and use it like that so you don't soak yourself.

@5YearsLeft just seen this thread and wanted to send you genuine hugs. I'm so sorry you're suffering so much.

If you're still looking for tips and haven't already tried this, I would suggest contacting a colorectal nursing unit at a big teaching hospital. My family member used to suffer terribly pre surgery and the colorectal nurses had a whole heap of things that can help - including genuine barrier creams and sprays. If you're not sure which hospital to try, try calling or emailing the John Radcliffe team as they're a specialist centre and the nurses v caring.

If you're physically able to, soaking yourself clean in the bath or shower will help (both can be easily cleaned) and you can dry yourself with a hair dryer on low and cool.

Wishing you all the strength in the world

@OnceaTwigletalwaysaTwiglet Thanks so much. I actually got a bit worse, and ended up having to take a full extra dose of the other medication that treats my condition (immunoglobulin) so then it gave me a stonking headache, but now fortunately, I’m able to take slightly less of the medication that was causing this problem, so hopefully things will be a bit better going forward. Also, I couldn’t really keep much but fluids down for a few days, or maybe it was a week, which cut down the toilet problems for a bit too.

@Athenajm80 Thank you for your kind words. Being able to give advice about rum and procrastination is no small thing; those are very important life skills. About posting: I keep thinking I’ll name change, I say I’ll name change, and then it ends up coinciding with me being too sick to post anyway, so, I hope I’m not angering people too much by posting once every few weeks when I can stop: injecting myself with immunoglobulin, getting a huge fucking headache from it, and then turning into a vomiting whirligig. I’m seeing my neurology consultant on the 12th, because this entire crisis scared me a bit, including the toilet issues, and made me a bit fuming - I mean, I’m supposed to have five years left, and die of vasculitis, not kick it in less than 12 months of a bloody myasthenia crisis.

you can buy a bidet topper for a toilet. It’s a game changer if you have issues.

much, much cheaper. Look for a handheld bidet or travel bidet. Yes, it is really different than just a random squeeze bottle. The tube at the end and the holes for for spraying all work to make the angles much easier. I got one off Amazon.

About posting: I keep thinking I’ll name change, I say I’ll name change, and then it ends up coinciding with me being too sick to post anyway, so, I hope I’m not angering people too much by posting once every few weeks

I don't often reply to your posts because I struggle to know what to say to someone suffering so much while displaying such dignity, strength of self and kindness to others., but I looked you up last night to see how you were getting on because I'd not seen your posts in a while. I think of you often and if there was anyone here I wish I could change things for, it's you.

I do hope you've reached a turning point with your current issues

You poor woman! Wouldn’t you be more comfortable in hospital with pain relief and nurses to help with personal care?

Sending you a gentle hug ❤️