Wednesday, 23 October 2013

Recent NHS encounters: the awesome and the awful!

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!

Friday, 11 October 2013

Gastroenterology referral

Have been really, really struggling today. Apologies to those of you who have had to deal with my moans and tears, you've all been amazing <3

I saw my doctor first thing this morning after desperately trying to get an appointment for the last 3 days.

I explained that my nausea simply isn't bearable, and from what I understand, it's most likely to be caused by 1 of 2 things:
1) my CFS directly affecting the balance or emesis centres in the brain
2) gastroparesis- delayed emptying of the stomach, which is more common in CFS sufferers

I said that I thought it made sense to test for gastroparesis given that it's possible, but said I wasn't sure how easy it was to get a gastric emptying study. My doctor said it wasn't something he'd be able to directly instigate, so he would refer me to gastroenterology, but would get in touch with my main consultant first to make sure he was kept in the loop (by urgent fax, so hopefully shouldn't delay the referral much).

This has really upset me for 2 reasons: 1) It's another department, another doctor, probably more testing etc. and 2) The referral is going to take 3-4 weeks- the nausea is *unbearable*.

I don't know how I'm meant to cope for another 4 weeks with nausea this severe. I feel like I've been abandoned to deal with it until I see the gastro specialist and I don't know how I'm meant to manage until then. I've had nausea for 4 years, but it's never been like this. Even when I do finally get to see the specialist, the likelihood they'll immediately put me on something that works is very slim. It makes me want to just march into A&E and get myself admitted. I'm sure they would- more because of my weight than because they would understand the severity of my nausea. But I don't want to be in hospital, I just want some treatment. I just want this oppressive nausea to stop.

I'm already under immunology, the CFS service, dietetics and maxfax. I have been discharged from 2 other services/departments within the last year. I'm possibly also being referred to ophthalmology at the moment (although I don't see why, so hopefully not) in addition to this latest referral. I'm sick of hospitals.

But then maybe it's a good thing. I need my nausea sorting out, and they're the most likely people to be able to help, and they may be able to explain/do something about my severe abdominal pains too, which would be fantastic- particularly if I could get off tramadol, which I'd really rather not be on. So there are positives, the negatives just seem far more obvious today. I think it's the 'straw that broke the camels back', I think I'm exhausted and have gradually been dealing with more and more and this last thing was just too much. Hopefully the next 4 weeks will absolutely fly by, or the nausea will get easier to deal with...

Thursday, 3 October 2013

Update 06/10/13: nausea and coping

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!