Firstly, I'd like to start by saying that I'm feeling much brighter now than I was when I wrote my previous post, there's always ups and downs with chronic illness, and I was over-tired, simple as that. That's not to say that I was talking rubbish because I still agree with everything I said and those fears are still there, but I'm just not dwelling on them right now, there's no point.
I was at the doctors the other day. Again. I feel like I'm there too often, but I always have good reason to go, and my doctor is always clear that I should stay in touch, so I don't feel that I ever go unnecessarily. It just feels like I'm constantly back bothering him because I end up at the doctors so much more frequently than I used to. But I suppose that's one of the 'joys' of being chronically ill. Thankfully my GP is a genuinely nice guy, and we get on well even though I'm a nightmare and, although he claims otherwise, his heart must drop a little each time he sees my name on his list. This time it was just to get more prochlorperazine (for nausea) prescribed and to get it put on my repeat prescription, to which he agreed after a rather enlightening conversation.
He explained that he had never tried me on prochlorperazine because it's not something he would prescribe to a young person long-term ordinarily, because of one side effect in particular: facial spasms. He said they are like a habitual movement, but they would be noticed by the sufferer, who normally reports that the medication makes them wink. Thankfully he followed this up by saying that the effect is totally reversible IF the medication is stopped immediately, so it's just something to be vigilant for. Just thought it was worth mentioning in case it's something anyone else is thinking of trying so that you're informed!
I've also seen my maxillofacial consultant who asked quite a lot of questions about both my facial pain and my recent symptoms in general. He too said young people normally wouldn't be on prochlorperazine for prolonged periods but I think he then realised that it was non-negotiable at the moment. I'm staying on it for now if it's the only medication that helps me to eat. He has decided that, because he doesn't want to hinder my treatment by my main consultant, he is going to take a more hands-off approach, but will continue to monitor me, just less closely. He did say though that he is more than happy to see me if I'm having difficulties with the facial pain at any point and to just ring and make an appointment, so it seems ideal to me, because I don't want any more appointments than necessary, for obvious reasons, but have a review appointment back at the department in 6 months for him to see how I'm getting on. I think he feels that my care needs to be properly integrated, and particularly given that my facial pain is all part of my CFS, my CFS consultant is actually the person best placed to oversee my care. I totally agree. The medications I am likely to tolerate best are probably the medications normally better tolerated by CFS sufferers, and it's my main consultant who knows about such things. It's helpful for him to have input from the maxfax team too though, so it's not a bad thing that they've chosen to monitor me rather than discharging me.
I've got some blood tests coming up this week (even though I've already seen the vampires this week too, but never mind..) just to check on my iron and vitamin D levels because I've been on supplements for quite a while so I need to know whether my dose can be decreased yet, or whether my levels are ok at least. I also need to get back in touch with my physio now that summer is over, and am intending to speak to my dietician too, just to see if she has any further advice. I'm managing ok-ish, but my appetite is still relatively poor. I don't know whether I'll be losing weight still, but I certainly doubt I'm putting any on at this rate, and particularly given that it's about to be winter (infection-season!) I'd rather like to get quite a bit heavier just so that if, or more likely when, I get an infection I have a bit of weight in reserve (particularly just in case I relapse). A bit of extra weight would also just take the pressure off a bit in terms of eating. But obviously putting this weight on whilst my appetite is rather lacking and my nausea is randomly flaring up is seeming pretty much impossible.
I'm coping a bit better with the busy days now, although I am thoroughly exhausted and planning a couple of quiet days now to rest up. Unfortunately I feel as though I've got a cold starting, which is really worrying, as I described in this post on a previous occasion.
The weather is horrible today and I can't say it seems very sensible driving round on something electric but so far there have been no water-induced problems, other than my breaks being slightly more naff and having to slow down to go through puddles (yes that is a problem- I don't like going slow.. ;) lol)