To trade my sight for less pain? Would you?

[SchrodingersMeowth]

Okay, so long story short - I have several medical conditions co-morbid to a genetic disorder. One of my biggest issues being spasms in my bladder and bowel (also several prolapses) I have many other conditions but this one is extremely hard to control and has me floored in seconds.

So... I take an injection of buscopan up to 5 times a day, this is the only thing that has helped (also on other strong painkillers but need the anti-spasmodic). Now, the problem is that I get a side effect from these injections, blurred vision.

I already have poor sight and one eye is completely hopeless and won’t focus so after I take my injection I am practically blind for about an hour or so.

Sometimes I try not to take them as I feel bad for my kids, I’m pretty useless if I can’t see.

So... AIBU to essentially blind myself several times a day? Or should I be trying to just do without and be in lots of pain instead?

I genuinely don’t know, I feel like a bad person and bad parent and that I should just make myself to try to cope.

YANBU, you can't pour from an empty cup

How old are your DC?

Not much of a choice :(

Have you had a decent medication review where you’re explored alternatives?

You can't win can you? I'm so sorry. I would keep taking the injections. Pain is so incredibly draining.

Have your specialists considered a neurostimulator, to counter the spasms via electrical impulses to the sacral nerve? I'm not certain it would help, but it might be worth asking?

Ractify I am on the waiting list for exactly that! I have a very good Uro reconstructive surgeon, however we are waiting for an MRI of my spine and I have 2 sacral dimples and tethered cord is common with my condition. He’s also not sure that it will work for me unfortunately. I already have a neurogenic bladder and suprapubic catheter.

Annalogy love the name! They’re 5 and 6 respectively. :) thanks

Bowl Unfortunately we’ve tried just about everything. I just feel guilty because I can barely see my kids for more than half the day so don’t take as much as I should a lot.

Vanellope Another amazing name! I think you’re right it’s just guilt x

It may be worth contacting the RNIB helpline. Many people who have sight loss for differing reasons find it useful to understand what is available to help - their online shop can also be useful. Many people manning the helpline have sightloss themselves so will have great empathy with you rather than just sympathy which can also make a difference. Is there risk of long term damage with the pain medications?

RB68 Thank you so much for that! I will contact them. Anything to make it easier.

I’m not sure about long term but I’m on fentanyl and quite a lot of morphine so I guess it’s possible.

I have the same - I've had the sacral ns since 2009, and it is amazing. Still have ongoing surgeries (4 in the last 10 months for gastro+ issues including prolapses, etc), but my life is completely different since I had it implanted.

Do you have EDS by any chance? I have gastric issues too and a peg-j x

I actually haven't yet followed through with investigating a diagnosis for EDS, I just have so many other diagnoses and issues that it is on the "to do" list for my specialists. My current "labels"/diagnoses are so numerous that I am resisting any more (not helpful, I know, but my current way of coping).

This sounds like an awful choice! But as others have said chronic pain is draining. So I'd continue with the injections. I'm sure I'm sure you've thought about this but can you put things in place for times your sight is poor?

Ractify. I know the feeling, I had my Eds diagnosis before the organ problems started so I guess I was lucky there as surgery doesn’t work well for me as my skin tears too easily and I’m resistant to anasthetics :(

Agree about multiple diagnosis’s though. Sometimes feels ridiculous lol

Gorilla. Problem is I feel like a fraud as it’s because of medication but when I take it I can literally only see a blur but I wouldn’t want to take help away from people who are genuinely blind :(

💐 and ((hugs))!

I'm sorry- when you say prolapses, is this in the bowel? Are bowel issues linked to EDS? DD has unspecified IBS, and just started on buscopan, but EDS is in our family. Is it high dosages of buscopan that cause eye issues?
Sorry, I know that's not answering your dilemma at all; I really do feel for you, as it must be very difficult going through this

I'm sorry op this sounds really hard. I'm not at all an expert in this, but can you have Botox for the spasms? I would agree with you that you have to look after your kids and even if your vision is blurred you can probably do better as a parent than if you are in terrible pain. What a hard choice.

I suspect you don't need to choose. Buscopan appears to cause difficulties with accommodation, so it may just be possible for you to get some glasses to wear after you take your meds.
Start by having a normal eye exam and then explain the situation, they'll need to then re-refract you (so re-check your prescription) after you've taken it and your vision has become blurred.
It's possible you'll need some varifical glasses.

Occasionally the changes that occur in the eye can lead to an acute form of glaucoma, you need to contact the prescribing doctor quickly /or attend eye casualty if you get a red eye, halos around lights, headache or nausea with the blurred vision.