So, I feel like I ought to do an update.. I've experienced some great treatment from the NHS and some not so great over the last week or so..
Firstly my fantastic, awesome consultants have been, true to form, fantastic and awesome. They can't cure me, but they help as much as they can and are supportive, which is the best I can hope for. My maxfax consultant discussed my nausea informally with me and gave me hope that further treatment options exist. My CFS consultant replied very promptly to my GP recommending that the gastroenterology referral goes ahead and also replied to my (possibly slightly desperate-sounding) email and arranged to see me in a cancellation slot. He has given me the same medication that helped before but at a lower dose (liquid so I can mess around with my dose to find one that works) to keep me going until I'm seen by the gastro specialist and is seeing me again in a few weeks. Hopefully my eyesight won't get messed up like before because it's a lower dose - I'm quite liking my working eye muscles you see..
My dietician also did all she possibly could. She was concerned because my weight has dropped to the lowest it has ever been throughout my illness but she was very supportive and said all she could to motivate me and try to make food seem appealing again- nausea is more convincing unfortunately, but as soon as it relents a little all her advice will definitely come in useful. And I'm really, really, really trying to implement her suggestions straight away- but it's HARD! The nausea has thankfully responded a bit to the low dose of prochlorperazine and I ate really quite well yesterday and am doing well so far today- I'm rather proud and am sure she would be too :) lol. We're both keen to avoid going down the route of other means of nutritional support if possible- it would be an absolute last resort- so fingers crossed and wish me luck! She is also going to speak to the dietician who works in gastroenterology who I'm likely to come across when I'm (eventually..) seen by that department.
The bad has been a bit distressing. My physio basically accused me of having an eating disorder. I'm young, female and severely underweight, so it does have to be a possibility on their radar- I understand that- but I'm fairly sure it should have been pretty obvious that I've been trying incredibly hard to turn things around. I'm not trying to get thinner, I'm battling as hard as I can to put weight on, it's just that the nausea is absolutely overwhelming. Nausea that bad cannot just be ignored! I was called immature for not continuing to eat normally despite the nausea- I'd like to see him try! He said he thought I ought to scream and cry and shout, because that's what someone in my situation should be doing. I was already on the point of tears (thanks to him pointing out all that's wrong with my health/life) and was trying so hard not to cry. Why do people want me to fall apart in front of them? What would that prove? He said he couldn't understand why I was laughing when I'm very ill, very fatigued and very underweight at the age of 21, but he knew that it was nervous laughter, he knew that I was worried and concerned, so why act like he thinks I think it's all a joke, of course it's not. He said the smile and laughter is a mask and there's something I'm not telling him, but what's the point in me telling him that I'm scared where things are going to go from here, I'm upset that my health has been declining for over a year, I'm upset that my health is an absolute mess and I'm terrified that I'm barely able to eat- it's all pretty obvious, pretty common sense, I'd be mad not to be concerned about all those things. Why can't he understand that I am trying so hard to eat, I'm eating literally as much as I can, but the nausea is overwhelming, it's literally horrific, and I just get full so quickly.
Physio has now been withdrawn because I'm not well enough or eating enough for it to be safe/beneficial- I'm on negative energy as it is, so there's no way I'd be able to build muscle. I do actually appreciate and understand what he means, so I don't disagree with him on that, but it's a bit disappointing. It was my only hope for some improvement in the short-medium term.
He said I wouldn't have been allowed into the service with my weight as it is because what's to say my weight isn't the cause of my illness? I explained that I haven't been severely underweight the whole time I've been ill. I'm not ill because I'm underweight, I'm underweight because I'm ill.
He also attacked my self-esteem even further saying things like 'you're really thin but not in a good way'. I know I'm scrawny, I'm well aware of it, and I'm conscious of it- I wouldn't choose to be this thin. My ribs stick out, my hips stick out, my arms are stick-thin - I wouldn't consider any of that attractive.
He kept asking me whether anything had happened in the past or whether I'd ever had problems with food in the past. I couldn't get through to him that I'm upset because my health is a mess, my health isn't a mess because I'm upset about something.
It all just feels overwhelming and I felt so misunderstood.. I know he means well. I know he's just trying to help and trying to make sure he isn't missing something vitally important. But it's just really hard to get across what's actually going on in my head, and convince him that he really has got me all wrong.
The other negative thing was a miscommunication. I was told last week that a referral had already been put through to gastroenterology. I had specifically enquired- twice- to make sure everything was going through fine. I was told on both occasions, by 2 different people, that a referral had been put through.. Yesterday I rang gastroenterology because I hadn't heard anything- they hadn't received a referral. Turns out the receptionists at my doctors surgery hadn't actually opened the letter showing up on their system and assumed that the letter faxed off to my other consultant regarding the referral was the referral itself. The referral didn't yet exist, and even the reply from my consultant was missing from the system even though I know he had replied, and the receptionist thinks she'd seen it at some point. I have a feeling it's probably sat in a mountain of paperwork on my overworked GPs desk- out of sight and therefore out of mind and not dealt with.. So frustrating. The other possibility is that my consultant has dictated a reply and is blissfully unaware of the weeks/months it takes for letters to get from his dictaphone to their destination, because the secretaries are also overworked. Either way, things haven't progressed as they should have done, and certainly not as I was led to believe they already were progressing!
Returning to the good- the doctors surgery is now dealing with it.. I rang again today and my doctor had written the referral letter and it was just waiting to be typed up.. It's not clear yet whether it will be put through as 'urgent' or not- I hope so, but I won't hold my breath and I'll understand if not.
Also good- everyone at the hospital the other day was lovely. As mentioned previously my consultant and dietician were great, but the receptionist was also very helpful, the nurse who took my blood was really nice, the people in pharmacy were lovely and even the porters were smiling and saying hi and commenting on my scooter. I honestly couldn't have asked for better treatment.
I believe whole-heartedly in the NHS. The system is unfortunately being pushed to its absolute limits at the moment, in part as a result of patients like me who have multiple health problems and require significant input from multiple departments long-term, I admit that. And with increasing numbers of elderly patients the problem is only going to get worse. The NHS is something to be really grateful for though and something as a nation we should be proud of and fight to preserve. It has it's faults- individual staff members and systems aren't always perfect 100% of the time, far from it, but that's life!