Had the appointment letter come through today, for my next neuro appointment (I’ve only just had one).
I was momentarily confused, as I’d anticipated a September/October date - the usual six months. To my surprise, it was March 2016!
I’m not complaining - far from it. He’s obviously taken to heart that I did explain I’m a very anxious person, and get stressed about the appointments. He must also be satisfied things are stable enough that he doesn’t need to see me any sooner, and it’s low risk to leave it.
I know some people would love to have more face-to-face neuro contact, rather than less, so I don’t mean to sound ungrateful. But for me, it’s very positive, as it’s one less stressful and largely pointless event during the year (we very rarely tweak any symptom relief, and on the rare occasions we have, it was not a success, and I came back off again). So mostly I was getting myself all worked up about an appointment where the decision was only to maintain the status quo.
I’m also very reassured that he’s happy enough to leave it. He’s obviously not worried I need closer monitoring, if he’s happy to step it down to annual.
Of course, if there was something new I was worried about, I’m sure I could ring and get in sooner, but if everything stays as it is, no more hospital 'til March! I think that’s a result!
I do feel a tiny bit sorry for the poor man, because he’s actually very nice, so must wonder why I’m a bit phobic about seeing him, and whether he’s getting something wrong. He isn’t - I’ve just got an aversion to the hospital, and I get stressed about public transport, and whether I’ll get there on time, and all that stuff.
I don’t think I’m “in denial”, otherwise I wouldn’t be regularly here and posting - but I do prefer to keep medical contact to a minimum, and my life as “normal” as possible. I’m not anti-drugs either - I take what I need to get by, but we don’t keep mucking about with them.
We did discuss some possible changes last time, but all the options had more downsides than the problems they were supposed to address (such as side-effects, and needing regular liver function tests), so I decided to live with things as they are.
I do still get the occasional very severe cramps which I cannot control, but it’s not every day, or even every week, so I don’t really want to risk compromising my liver function for a problem that’s relatively isolated.
When it does happen, it is both agonising and frightening, despite knowing nobody ever died of cramp, and I’m sure next time I’ll be cussing and swearing, and shouting: “You should have accepted the bloody drugs!” But as unpleasant as the prospect is, I’ll probably do better just dealing with it as it happens, than going on permanent meds with increased risk of harm, for something that remains quite rare.