What a weird day..
First thing this morning I made 86 phone calls to my doctors surgery in 16 minutes, only to eventually speak to someone and be told all the appointments for tomorrow with the doctor I need to see have gone. I was told to ring for a same day appointment on Monday.. But I'm not free on Monday.. (Yup- unbelievable I know- but I do still have a life outside medical appointments..!) I have no idea when I'll finally get to see him. I'm trying to make an appointment because I've had a letter asking me to make a doctors appointment about my vision. My vision is now fine, so there's no need really, but I feel I ought to touch base with my GP anyway, knowing how many letters he's had about me recently.
Then I went to a couple of lectures (evidence of the life I mentioned earlier, see), got back and rang gastroenterology because I still hadn't heard anything. The lovely secretary offered to ring my doctors surgery for me and chase things up. She rang me back to let me know that I have in fact been referred to the upper-GI surgeons (nice of them to tell me.. I'm assuming no-one will be cutting me open...), which is why gastroenterology haven't received a referral. She gave me the number of one of their secretaries who I rang; she said there wasn't an appointment made for me yet but that didn't necessarily mean my referral hadn't been received, and that it sometimes takes a while. I asked how long I should expect to wait to hear anything and was told that it depends how urgent the surgeon deems the referral to be- helpful.. but I do understand there aren't always clear-cut answers to such questions and sometimes it's better to say nothing rather than be misleading. So I'm still none the wiser, but am assuming things are plodding along ok through the creaky NHS system. I've been advised to ring back in a week if I've still heard nothing, so we'll see..
A letter came in the post today explaining the reasons for my referral to the CFS psychologist (my low body weight and low BMI- same thing, and clearly neither necessarily mean a psych problem *rolls eyes*) and detailing the health risks of being severely underweight.. Helpful. I realise the seriousness, but I need appropriate investigations of my nausea, not people getting the wrong idea and thinking I'm making myself ill by purposefully not eating or something.. Her pointing out that I'm likely to have a weakened immune system, fragile bones and lack of energy because of my weight really doesn't make me feel any better.. The letter also suggested that it may be appropriate for me to see my GP before my psychological assessment next week in order to be considered for referral to an eating disorder service. Shouldn't she actually do the assessment before assuming I need to be seen by an eating disorder service? Isn't that what the assessment is for? Talk about keeping an open mind.. I was fuming. The letter has been copied in to multiple people involved in my care so it will now go on my health record that I've been suspected of having an eating disorder- fantastic.
Thankfully I saw my consultant this afternoon who said he's already been on the case and has been in touch with the CFS physio and psych to say that he feels it is very unlikely that I have an eating disorder. So at least one person understands!! I asked what I could say to convince them that I'm trying my hardest to put on weight and he shrugged and said he doesn't know. I'm just going to have to play along and let them work it out for themselves it would seem. He said that my blood results had also come back more normal than would be expected with an eating disorder- practically everything was fine, even my iron stores were normal which was good to hear given that I've been off iron for a while now, the only thing slightly abnormal was a high albumin which he said was probably just due to decreased intake of food and fluid at the time causing effects of dehydration. He was delighted my nausea has decreased and that this has enabled me to put on some weight. I said I was disappointed that things haven't picked up a bit now that I'm eating well and he laughed and said to give it a chance- it's only been a couple of weeks! He said it will take a while for my body to start dealing with the nutrition properly and for me to start getting more energy from what I'm eating; apparently I should be looking at months rather than days or weeks, which is still positive because it gives me reason to hope for some improvement. I was pleased he wasn't concerned things haven't picked up already. He said it's important the nausea is investigated properly though and that it's quite likely I'll be needing a gastroscopy, which came as no great surprise. I said I'd been considering applying for PIP because it's going to be incredibly difficult for me to get around over winter because I'm reliant on my mobility scooter and she's not meant to be used in adverse weather, so it's probably going to mean A LOT of taxis, and asked whether it was a horrible process. He said 'quite probably, but that doesn't mean you shouldn't apply' and gave me details of a local organisation that apparently helps. So that's something for me to give some thought, I'm really not sure what I want to do about it right now.. He wrote a prescription for another bottle of prochlorperazine for me because I haven't made it to the doctors to get a spare bottle yet and he said he didn't want me running out and losing the weight I've put on otherwise he'd be cross, lol. We discussed my diet and he was keen for me to eat as soon as I can in the mornings, even if that requires taking my medication, waiting half an hour and then eating something once my nausea has died down, because nutrition is apparently most beneficial early in the day when the body is crying out for it having been starved overnight. I've been advised to prepare breakfast in the evening and take it to bed with me for the morning, because getting around in the morning is difficult, although evenings really aren't much better..! He said to sneakily eat in my lectures, particularly when I'm in all morning, which everyone has been telling me to do, and they've all been offering to write letters to anyone who doesn't accept an explanation that it's for medical reasons, so I might give it a go. I'm seeing him again in 10 weeks time, he wanted 8 weeks and the receptionist laughed, which is actually just as well because that would have been in my Christmas holidays! I was then sent to see my dietician (I make it sound like I went miles, it was in the neighbouring room..).
My dietician weighed me, thought I hadn't put on any weight, I was adamant that couldn't possibly be right, so we went to another set of scales which gave the same weight, then realised she wasn't comparing it to the right weight and I'd actually put on 1.8kg (just under 4lbs)- yayy! Pretty impressive in just over 2 weeks. We talked about how I can improve my diet and it's mostly a case of trying to get my protein intakes up. I need regular meals, but said that cooking regularly is a problem, because I need to be well enough to be in Uni and functioning in the afternoon. She accepted that, but said that ready meals might be a good option for lunch times. Cheese and biscuits is also now on my mental list of snacks to try. I also have to have milky drinks more, which seems to be a perpetual aim. So now it's just a case of putting everything into practice and getting my weight up further! Easy, right?!
Then I headed down to the pharmacy, already armed with a handful of syringes from immunology stock (given to me by my consultant, not stolen, promise) and got a bottle of my miracle med with yet more syringes. I've got quite a few unused ones still from last time too so I've definitely got plenty of syringes!!
Then I headed home and lay in bed, exhausted from a busy day... And then ate, a lot, all evening, because I do a lot of that right now! ;) Less nausea is awesome. I SO don't want to ever go through nausea that bad ever again. Fingers crossed..
So that was a (rather medical-orientated) day in the life of a chronically ill student. A couple of lectures and a ridiculous amount of medical stuff- joy!