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...