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.

Buy a bathroom pedal bin and a big roll of liners for it. Throw wet wipes into the bin. Take the liner out every evening, tie a knot in it and throw it into the kitchen bin.

Don't flush wipes; regardless of claims on the packet, wipes are not flushable.

@Nephthys21 Yes! I tried just normally wetting the toilet paper y and it just fell to pieces - that’s when I think I just hit my emotional limit on being able to this issue myself. This may be a good idea for leaving the house on short notice - I could easily keep aloe Vera with me when I need to go to doctors appointments, in case I have a problem while there.

This is such a nightmare. It’s 2am here, my chest feels like it’s gone through a meat grinder, and I’m awake stuck in the toilet being sick. I’m even freezing cold and it’s not cold here. I hate this.

@5YearsLeft I have Myasthenia Gravis too. If you are in crisis, you should be in hospital!
Also, if you take too much Mestinon, it will actually exacerbate the symptoms of Myasthenia, so be very careful with your dosage.

@5YearsLeft I've just re-read and you say you 'need to be taking as much Mestinon as possible.'
I'm on Mestinon too, and this approach sounds really dangerous to me because of the risk of overdose.
If your breathing is as affected as you describe you need to be in hospital as a Myasthenic crisis is an emergency situation and life-threatening as you know.

@5YearsLeft I believe these are sold as peri bottles or post natal bottles
failing that, I have one that I bought as a nasal wash for sinusitis that is exactly like the post natal bottles. They are available from Amazon but I’m in the UK, don’t know if it makes any difference

Frida Mom Upside Down Peri Bottle for Postpartum Care | The Original Fridababy MomWasher for Perineal Recovery and Cleansing After Birth amzn.eu/d/3mi90HA

@Dillidilly Believe me, I’m sadly well aware but it’s always this huge catch 22. I’ve been laying in bed all day except for the toilet. If I go to hospital, I can’t have IVIG because it gives me aseptic meningitis, which is what they usually do in hospital first, so I’m already on weekly subcutaneous immunoglobulin at home. And then there’s the fact I get no sleep in hospital and I can’t recover without tons and tons of sleep. And I have a huge presentation for work tomorrow afternoon and no one else can take it. I can take extra imnunoglobilin and risk its side effects - right after my meeting tomorrow. And I’m aware that if that doesn’t work, I may be on intubation by the end of the week. But I’m out of ideas.” Thanks for the Mestinon advice!

@5YearsLeft how are you going to give a work presentation with severe breathing difficulties?

@Dillidilly Er. I’ve kept working from bed during my myasthenia crisis, period. I mean, yes, I work from home. Yes, I work from bed in pyjamas. But it’s 100% the reason why I’m not getting any better, I know. A regular day for me for the past two weeks has been sleeping for 16 hours, then 1 hour of work, then “laying” (I have to be on three pillows since I can’t breathe flat on my back) back down, then work for 1 hour, sleep an hour, work 1 hour, sleep 1 hour. Im averaging about four hours a day. And then 16-20 hours sleep.

@5YearsLeft I know, and know of, many people with MG from a support group. I've never seen anyone (myself included) act like this when in a severe flare, let alone actually being in crisis.
I'll be honest, I don't know what's going on here. So I'll wish you well and bow out.

@5YearsLeft I've been wondering how you are as I can't get on the super long thread anymore since the infamous Mumsnet "upgrade" 🙄

Sorry to hear about what you're now going through. I've got no advice but I think (hope) all the people upthread have everything covered. I just wanted to say hi and I hope this current bit gets better soon.

Another one checking in to see how you are @5YearsLeft (& clearly another one who can't sleep!)
Hope you manage to get something sorted to make it easier for you somehow.

@5YearsLeft

I'm so sorry, it sounds horrific. I'm glad you have your husband. Don't worry one bit about replying, just let us know how you're doing when you can. Take care of yourself xx

Sounds like you have lots of support already here.
I have no understanding of the condition sorry! But I came to say if you do decide to use wipes then you could also use baby nappy bags to avoid flushing wipes.

Thank you so much everybody. And thank you to others; I’m still learning my lessons. It would have been better to ask for help and not to mention specifically which medication or my condition. Mentioning it only derailed my own thread. I’m sick, I’m feeling horrific, and I’ll do better next time. At the moment, the pharmacy sent my husband home with some kind of generic wipes that seem like they’re for adults (no pictures of bairns or tiny animals on the packages) and thick plastic bags for disposal and they’re going to order an irrigation bottle to try.

As for people troll hunting how I handle my MG, I don’t know what to say. Like I said, I’m learning not to mention anything about specific illnesses here, and I won’t next time, but I’m a work in progress. Since I’m terminally ill from a secondary illness, the way I handle MG will not be the way most people handle MG - they expect to survive it; I know I won’t. It would be easier to die from an MG crisis than the death I have awaiting me from the vasculitis which will be slower and a lot more painful. As for “being able to type” during an MG crisis, I’ve typed on my phone in bed from home or hospital during every MG crisis I’ve ever had. By necessity, you figure these things out - how to type without actually having to hold the phone’s weight, or hold up your arms at all. Now, if I said I was blowdrying my hair, you’d have a point - I know of absolutely no way to style your hair, dry your hair, even comb your hair, with an MG crisis - your arms would just give out from you trying to hold them up. My hair looks like birds nested in it. Another reason I’ll never make it for the call today.

@Athenajm80 The super long thread is actually gone. I asked to have it deleted because people were telling me I didn’t handle my illnesses correctly and therefore they must not be real because of the things I was doing, which is already happening again in this thread, which means it must be the way I present myself (I tried to go to Scotland on my own because the heatwaves here were making me sick and they said with how sick I was that couldn’t possibly be real; no travel insurance would cover me, which of course is true, it wouldn’t have). Anyway, the people saying no one as sick as me, if I was real, should try to travel got the last laugh, because they were 100% correct - it was my first attempt flying in seven years because my doctors thought it “might” be okay now since my lungs had been stable, and I should never have done it, because now I’ve been this sick ever since with exhaustion and breathing difficulties from the MG. I can’t even tell you how much I just regret all of this, and it’s been a total fucking nightmare since about 3rd August. Whoever was mentioning it on this thread will get the last laugh as well, I guess, since they said I can’t possibly have a meeting when I’m this sick, and I think they’re right about that too.

Sigh. What a snafu. I’m just a bit tired of being told I’m not being sick correctly (online comments) or that I’m not dying correctly (my own bloody doctors). I don’t want to die “correctly,” in hospital, by myself, hooked up to machines that go ping.

Im sorry this has gone so incredibly off topic. Thank you so much everyone for the suggestions. We’ve taken care of it now. I may not post again as I have to come up with some solution about the meeting today, give myself the extra treatment, and then I’m just going to go back to sleep and let whatever happens, happen.

OP this stuff is excellent. It's a gel that you apply to toilet paper and it soothes as well as cleans. You can get refills and they also do a handbag size.
wypeuk.com/pages/shop?gclid=Cj0KCQjw0oyYBhDGARIsAMZEuMsuwttLJxqd4y5rkoSUvncXlmIVMKPj2uJskK9LoXcAVh9toAowvTUaAvf0EALw_wcB

@5YearsLeft to be fair, you asked for advice from other posters taking Mestinon.

In your last thread I gave the same advice as here about the dangers of taking large doses, in reply to a similar question about Mestinon. I also mentioned medication usually prescribed alongside Mestinon for the stomach problems.

I think anyone with MG would express concern and shock at someone in crisis not being in hospital. My personal view is that it's incredibly dangerous...but that's your prerogative, so as I said above I wish you well.

@TamzinGrey Thank you!

@Dillidilly Thank you for stating you’re here from my last thread. I’ve learned a valuable lesson, will name change, and make sure I no longer mention my diseases so hopefully I won’t be followed after a thread is specifically deleted. There is no magic cure awaiting me in hospital, for my MG crisis or anything else. IVIG? I can’t have it due to aseptic meningitis. Plasmapheresis? I admit that I haven’t been willing to let them try, because they’ve told me that since my vasculitis is tearing both my veins and arteries apart, it may be incredibly painful and useless even if they go through a central catheter. They can’t even keep an IV going in my normal veins; every vein just fails at this point. Eventually this will be what kills me, unless I just choose to die at home. I would rather die at home. My husband knows this; my husband supports me, whatever our other issues. I’ll give myself extra sub-q immunoglobulin at home and if that doesn’t work, I don’t have a ton of options. Yes, every person who DOES have a solution waiting for them at the hospital should go to the hospital. I hope this satisfies you somehow. If I somehow “slip” under my new username, I would appreciate you leaving me alone.

@5YearsLeft please don't worry, I didn't follow you from your last thread. I starting skim reading this thread and the mentione of Mestinon caught my full attention because it's use is so rare. I answered when I saw you ask for advice from other people who take Mestinon.
It was actually only today I realised I'd posted on your previous thread.
I appreciate you don't want advice from me about MG/Mestinon, so will not be posting again here or on any other of your threads x

@Dillidilly Im sorry; I don’t want to be awful. I’m just feeling horrific, I sound like Darth Vader, I can’t lift my arms to comb my hair, and I’m already getting a phone call a day from my consultant about my not going to the hospital, so to get it from some random person on the internet hit a very raw nerve. Thanks for the understanding. And to be clear, I didn’t realize Mestinon was that rare. I thought it was first, standard treatment for MG. If you know of an alternative, despite our differences, please let me know.

@5YearsLeft sorry, I meant Mestinon use is rare because MG is very rare, so hardly any posters would have heard if it.

I'm imagining you have tried/exhausted the usual immunosuppressants? And I think you've mentioned plasma exchange is no good?
The only other treatment I can think of is Rituximab?

@Dillidilly Yes, unfortunately, already gone down the list. I understand there’s a new treatment, efgartigimod, and that it’s being made sub-q, so I might be able to try that, but it’s not an option here yet - I think they just got it approved in America. My doctor is checking with my assurance and the company to see if they can get it for me for compassionate use, possibly. I tried rituximab a few years ago; it was an incredible struggle to get my veins to hold and we saw no improvement anyway. Now my veins won’t even hold for IV treatments and since my arteries are slowly falling to the same inflammation, I thought my doctor explained a port won’t solve the problem for too long. I really appreciate the suggestions though. Thank you for trying. I apologize for my short temper. It’s just incredibly difficult to wish you were like everyone else; to wish you could just go to the hospital when in crisis and get IVIG and feel safe and things would be better, and to feel hopeless and know what’s eventually coming. I realize that’s not your fault, though, and I shouldn’t speak like an arsehole to you.

@5YearsLeft.

I tried to send you a PM instead, but it seems I can't. Not sure if you have them switched off or if it's part of the gigantic MN fuck up!

(((HUG))). I wish there was something a bit more useful or nice I could do than send virtual hugs.

I'm not half the person you are.
I am amazed you're posting here & working, I'm so wet these days I'd have just fallen apart.

I had an accident last year that's been life changing, but it's not even a scrape on the surface of what you're going through. I'll think of you when I'm being pathetic!

I have (compared to you minor) health issues and get fed up of being told I can't be that unwell or that I'm not 'doing' them properly, so I have a very slight understanding of that aspect of posting on here.

I don't know what 'other issues' you're referring to, but I'm glad your DH is supportive with your health issues and that you're not alone.

lots of love
A real person
xx

@5YearsLeft lordy, MG has made me snippy on many occasions, no need to apologise! I'm sorry things are so tough for you x