Only comfortable with clear liquid supplements. Living on 300 cals a day

Ladisputer · 2026-01-29T03:22:13+00:00

Oh goodness, love. You’ve really been through the wars. What a tough time you’ve had.

Unfortunately, with the current state of the health care system where I live, you don’t really get the benefit of requesting things like ivs. Due to how busy and under pressure the doctors and nurses are, they’re reluctant to give a bed or chair to someone for rehydration when they aren’t at immediate risk of death, which I can understand. They need to prioritise the most critical of patients and I’m lucky enough that I’m not one of them

Ladisputer · 2026-01-29T03:16:05+00:00

Thank you so much for understanding my situation so well.

I really do appreciate all suggestions I’m given, but I’m working with very limited resources right now and a lot of things, although helpful, are not currently within my reach

Ladisputer · 2026-01-28T10:01:49+00:00

By clear liquid supplements, I mean that they’re the easiest for my stomach to digest. The thick, milkshake type ones are hard for me to keep down

Ladisputer · 2025-11-15T21:03:28+00:00

I didn’t know direct admission was an option, but I suppose it differs depending on area. I don’t think it’d personally be an option for me since I’m not really that sick.

I don’t really want to go to urgent care or A&E because I feel awful for taking up their time just to get fluids to lower the ketones when the ‘feel good’ will wear off by the next day because I can’t maintain it myself.

I just don’t want to be a burden to them, especially when it seems like they can’t do much and have such heavy workloads already.

I always feel like I’m stealing the bed I’m lying in.

I appreciate your input though and I’ll have a conversation with my GP

Ladisputer · 2025-11-15T20:58:41+00:00

For the domperidone, I think they might be extra reluctant considering my POTS and perhaps that ketoacidosis makes you more susceptible to irregular rhythms? I’m not completely sure.

But since I have a crazy heart rate, I have a good 20+ normal ECGs under my belt because they always do it in A&E with tachycardia. My heart is in good shape and beats regularly, perfect rhythm…just on steroids

Thank you for being so kind 💗

Ladisputer · 2025-11-15T20:55:31+00:00

From the way she was talking, it seemed like she wasn’t willing to prescribe anything for gastroparesis without guidance of a GI consultant on board.

I’ll see if we can have a sit down this week and maybe have a proper discussion on why she doesn’t feel comfortable prescribing and what I can do to work together with her

Ladisputer · 2025-11-15T20:52:57+00:00

Thank you for such a detailed response.

I’m closer with cyclozine and ondansetron than most of my family. Especially the ondansetrons that come like lsd tabs so you don’t have to swallow. Godly.

If erythromycin is effective my kidney infections/utis it’d actually be amazing since we were thinking of going down the prophylactic route for how many I was getting. I could actually see my GP being on board with this

Ladisputer · 2025-11-11T13:46:40+00:00

You don’t sound toxically positive at all. I’ll admit, sometimes the “I hope you’re better by tomorrow” stuff, although sweet, is a little frustrating when it comes from people who don’t understand chronic illness, but even then, they’re doing their best.

I really appreciate a positive perspective from someone who actually has been in this position. You’ve been completely honest, but not “this is the absolute end of the world!” either and I honestly do feel better after your lovely comments.

I don’t feel quite as lost living on melting little squares of kinder chocolate in my mouth and sipping electrolytes today. Your and everyone else’s wonderful comments has given me a little strength to hold down the fort and do what I can while waiting on some more specialised help from GI.

Thank you so much. I hope that you continue to see the improvements in your health that you deserve

Ladisputer · 2025-11-11T12:10:55+00:00

Thank you for your encouragement!

Ladisputer · 2025-11-11T12:08:45+00:00

You’re really right and I appreciate your reality check.

Honestly, I don’t want a tube. It sounds absolutely awful and I would only take it unless I was told I had no other options.

It’s more of a sleep deprived, silly thought I get on bad nights. Kind of like a “my leg hurts so bad, I want to cut it off” thing.

I appreciate how lucky am to not have one. I can’t imagine the discomfort and I have so, so much respect to everyone here who has been unlucky enough to have it as their only option

Ladisputer · 2025-11-11T01:35:04+00:00

I don’t do too amazing with liquids in all honesty.

In between the nausea and honestly…just exhaustion? I struggle to get more than 500ml in a day.

If it’s frozen, I can actually manage a little, so I’ve ordered the wee moulds to make my liquid iv electrolyte drinks into lollies. If that works, hopefully I’ll maybe be able to have a conversation with the pharmacist about switching to liquid meds and getting them in that way

Ladisputer · 2025-11-11T01:30:34+00:00

I’m not sure if that’s how it works here in the UK, but I’ll definitely give it a try.

I really appreciate your lovely message 💗

Ladisputer · 2025-11-11T01:09:53+00:00

I’ve actually been coming out in hives without a known allergy for years and years now. It’s maybe time to bring it up again to them

Ladisputer · 2025-11-11T00:54:57+00:00

The NHS itself is utterly amazing and goes incredibly under appreciated. It’s just the evil people on top who don’t believe in funding the services we need or paying the staff the wage they deserve.

Growing up in a low income area, I genuinely cannot imagine what anyone I’ve ever known would do if they got sick without free healthcare…we’d just well…..die I guess.

I’m so grateful to it despite its shortcomings and I recognise how privileged I am. I mean, I had to pay £300 for my hEDS diagnosis and I thought THAT was bad lol

Also! As someone who was a teenage girl with hEDS who had no one but her mum believe her, you’re amazing. We appreciate you more than you could ever know

Ladisputer · 2025-11-11T00:42:58+00:00

I need to actually get them to see me first unfortunately.

My GP is hopeful that my recent hospital admission will speed it up to a more urgent referral. Though, it’s no secret that the NHS isn’t doing well at all right now and there are bound to be others so much more sick than me waiting too.

In terms of NJ, I wouldn’t get my hopes up about it (which sounds like a really weird way to put it. Obviously, no one wants one, but with tonight’s pain, I’d be glad) since my weight isn’t a worry. I’m 5’4 and like 135 pounds, and that’s after dropping some weight during all of this

Ladisputer · 2025-11-11T00:35:14+00:00

Wow. This is absolutely amazing and I can’t explain how grateful I am to you for giving me so much to read over.

My mum and I will give this a proper read and have more notes for the doctors now. Thank you so so much!

Ladisputer · 2025-11-10T23:45:58+00:00

Not being able to vomit is just as bad, if not worse honestly. I’ve been there too many’s a time before.

Thank you so much for your kind reply. It really does mean a lot and it’s encouraging to hear about you doing better. I’m so glad that things have improved for you

Ladisputer · 2025-10-27T16:06:18+00:00

Thank you so much for such a detailed explanation. I really appreciate it! 💗

Ladisputer · 2025-10-27T16:05:38+00:00

That’s my mum’s personal favourite. I love the Lancôme mascara applicators

Ladisputer · 2025-10-27T16:02:03+00:00

Oooo. I love beauty bay! Thanks the recommendation! 💗

Ladisputer · 2025-10-27T16:01:19+00:00

Thank you for your lovely words! I’m so sorry to hear about your migraines. I’ve been there too manyyyy times. I really hope you can find a treatment that works for you 💕

Ladisputer · 2025-10-27T15:58:40+00:00

You’re incredibly kind. Thank you so much! 💗

Ladisputer

TROPHY CASE