I realise they cannot do anything unless I actually consent to it, so I suppose if I am “managing” and feel further investigations would cause more distress than the problem itself, I am perfectly within my rights to say that, but leave myself on the books, as it were, in case things should deteriorate further.
From what I can gather, getting up just once a night to urinate is not really regarded as a serious problem, and is increasingly common anyway, as people get older, but I am aware I used to go straight through, without having this.
Also I can never lie in bed for long after waking up - which I always used to be able to - as I am conscious of needing the bathroom. It’s not urgent enough that I would have an accident, but enough that I can’t ignore it and have another hour in bed, because it would be uncomfortable. So yes, things have changed, and are at the level of “a bit annoying”, but not so bad that I am afraid of wetting the bed, or of going out in public in case of accidents. In fact, touch wood, there has never been an accident. I just can’t seem to go as long between toilet visits - particularly overnight.
I have had a pelvic ultrasound with full bladder before - for an unrelated matter - and that involved a vaginal probe (sorry if too much info!) - managed to cope with the embarrassment and indignity of that OK. But actually having to pee to order is somehow different - it’s not just the embarrassment factor, but I doubt I can physically do it, because as soon as I feel the least bit anxious or uncomfortable, I tense up, and physically can’t go - sometimes even if desperate. I feel sure that in a hospital situation, I won’t be able to relax enough to cooperate. As I mentioned, sometimes, even before MS, I couldn’t go in a “strange” loo, over anxieties it wasn’t clean, or people nearby were going to hear me tinkle, or whatever. So it’s not strictly just an MS thing - I am excessively self-conscious about it, and if anything’s not quite right, I just can’t relax enough to go. Luckily I’ve never had to use a bedpan, because I’m sure I couldn’t. My mum (who doesn’t have MS) is exactly the same.
All three times after she had given birth, they wanted her to stay in bed and use a bedpan, but each time, she said: “I can’t use that thing! Help me get up and get to the loo!” They weren’t happy, but when they realised she was never going to use - or was unable to use - the bedpan, they let her get her way.
I am so anxious, I have not even been able to eat lunch today, after this stupid letter. You can see exactly what I mean about the attempts to help often making things worse. OK, before, I was having to get up in the night, but I was eating OK. Now I’m not eating, which I know isn’t good, and isn’t taking proper care of myself - but I’ve got myself so anxious I just can’t. If he had thought I would stop eating over it, I wonder if the neuro would have arranged this referral, or decided to let things alone for now, unless there were further problems?