I went back to see my doctor this week to explain that I've come off my nausea medications because of my vision and am therefore struggling with nausea and difficulty eating.
Unfortunately I've exhausted all options in terms of nausea medications. There was one possibility left to try but it turned out it would interact with my steroid inhaler and cause a potential heart problem, so it's just not worth the risk. The only other nausea medications left untried would have side effects too severe to be considered a viable option. I've therefore been advised to use the medication that caused the vision problems occasionally but as infrequently as possible, to avoid the vision problems, but to relieve the nausea to some extent. I feel nervous about taking something that I know causes me such a significant side effect, but I also cannot really tolerate the nausea, so it's going to be a difficult balance. The vision problem is not caused by any sort of damage, just dysfunction, so I'm not risking anything in that respect, but it was very unpleasant so best avoided if I can.
We then discussed my weight and tube feeding. He said not to be too resistant to the idea of tube feeding, because it could actually be very beneficial. It would give me some extra energy and make me fitter and healthier to some extent. He has another patient who now tube feeds who really resisted the idea, but has done really well on the feeds and now only has to tube feed when his weight slips back down. He also said it's best decided on when it's not a desperate measure, so now might be a good time really. At least right now it would be my choice and under my control, but we'll see. I need to discuss options with my dietician. We also discussed if I went ahead with it whether the tube would stay in-situ or whether I would pass the tube daily myself. That's one I'm not sure about. The obviousness of the tube does bother me. I know that sounds vain, but there's a difference between always wanting to look perfect with exactly the right make-up on and not wanting a tube taped across your face, advertising to the world that you are ill and tube-fed, I think it's a fair enough concern. Passing the tube myself would be an addition thing to get used to and would be really quite unpleasant, particularly while I got used to it. Another option would be to go for a PEG, a longer-term option, but this would involve surgery, so would be a more drastic decision, although easier to care for and much less obvious. The decision about going ahead with any sort of tube or not is the first decision to be made though, so one step at a time.
My GP then got deep with me. He was concerned how I was coping emotionally and mentally. We have a laugh and a joke and my appointments are always light-hearted, but he said he was concerned he wasn't getting the full story and I was fooling him with my happy, smiley exterior. For someone my age, I'm having to cope with a huge amount. My health is incredibly fragile and I'm on an intensive university course. At the age of 21 I'm having to get used to using a mobility scooter and struggling to get around. I'm having to constantly adapt to deteriorating health, having been going downhill for over a year. I have constant appointments and new symptoms to be dealt with. Life is pretty hard, it could be worse, but it's tough. He said some advice on how to cope with such adversity and some support might be beneficial. He gave me the details of a talking therapy organisation (an nhs service) that I could self-refer into and said to really think about it. He said it would probably be painful and difficult for me to talk about everything, but that he felt it would be a good idea. We'll see. I'm going to think on it. I'm not totally sure it's right for me. Digging over everything might just cause pain without resolving anything, and most of the time I really do cope fine.
I found it amusing that he wanted to see my vulnerability. He said he'd find it easier to understand if I went to him in pieces. But this isn't an acute illness, I've been dealing with it for 4 years. Yes I go to pieces sometimes, there's certainly evidence of that on this blog, but I wouldn't inflict that on my doctor if I could help it, he doesn't deserve to have to deal with a snivelling wreck, and it wouldn't achieve anything.
He wants to see me in a few weeks, not to review anything, just to see me. I think he wants to keep a closer eye on me and check that I really am coping. I think it struck him that we were talking about huge things like tube feeding in such a matter-of-fact way, and we just joke about my scooter, but I'm still only young, and these things are a big deal. For the first time I felt like a doctor was really trying to get inside my head, know what I was thinking and feeling, and get an understanding of my life. I appreciated him trying, and caring enough to try, but being that open with people doesn't come naturally to me. I'd rather come across as smiley and happy and jokey, with a sense of humour about the mess I'm in. He said he thinks it's a front and there's a lot going on behind the smile, but I've always been happy and smiley, it's part of who I am. But I suppose there IS a lot going on behind the smile. I do think a lot, I do get upset sometimes, I am scared about the future and I do feel vulnerable, so maybe he does have a point. I'm not dismissing the idea of getting some help coping, but I actually feel quite together at the moment so it feels a bit unnecessary.
That being said, I was struggling towards the end of the week. By Friday I was exhausted and my mood was all over the place, not helped by the fact I wasn't managing to eat much. Thankfully I've been home for the weekend, have had a restful time and am feeling much better in myself. At the moment I'm only just making it through to the weekend and am only just recovering enough in time for Monday, but I'm really thankful that I am still managing, even if it is only just!