not to trust DH to look after me. What can I do.

[RainbowRobot]

No previous health anxiety but a few things lead me to suspect I'm going to be quite ill.

Had a full day in hospital on Monday, 7am to 7.15pm. DH is totally unable to appreciate that at the end of the day, I need to eat and perhaps talk about what is going on.

How can I talk to DH about getting a grip of the 'for worse' and 'sickness' bits ahead. He's really not getting it at the moment.

Nobody knows how someone reacts in a health situation. Like people have said your dh might be panicking, or he may not be ready to accept until he hears a clear diagnosis or maybe he won't help. In that case you will have to tell him you need help. Did he go to the hospital with you? Did you ask him to? I do understand people wondering a bit because at the moment it sounds like you're getting ready for something you don't know whether you have. Best of luck op but do remember to talk about it in rl

He may have thought you were just being quite dramatic as that’s how it’s coming across.

If you were well enough to race around performing some sort of Swedish Death Clean (not sure what that is but I think I get the gist) he probably didn’t think you were that poorly that he needed to look after you. I dare say if you are ill he may step in at that point but not in anticipation.

I can also understand him thinking there is nothing to discuss because at present there seems to be nothing to discuss. I’m sure if and when there is he would then participate.

OP there seems to be a bizarre level of melodrama to your thinking. And your day of consultants sounds highly unusual - that’s not really how hospitals work. You’d normally be referred to a consultant’s service by your GP and then wait for an appointment to come up. I’ve never known anyone to have a 12 hour day of consultant’s appointments, let for something as minor as double vision, where they are well enough to drive home again afterwards. This suggests that you are doing some major catastrophising. Perhaps your DP is a bit fed up of it....?

Additionally for something like double vision to get to consultant stage there would have to have been a fair few appointments first. Did your DP attend those?

Sorry to ask for an explicit explanation but how is he supposed to understand what your illness is? You don't and nor does your doctor til the results come back.
I'm a bit lost. Is it mh issues?

HEALTH ANXIETY - to anyone flicking through Mumsnet who is behind on their smear tests, has found a weird lump or noticed a mole changing - please go and get it checked out. That is not selfish or attention seeking you will cost society less if you catch it early

For anyone in the middle of diagnosis, tests etc the NHS direct and the NICE guidelines provide factual, accurate information. Use the science you learnt at school and the common sense as an adult to filter information. Forums and specialised websites often have a skewed view

No one has once said people should not get checked. Or that its attention seeking to get checked.

No one has said you shouldnt be trying find out what's going on. They are simply pointing out that, despite a day of 12 hours test, not one medical person has suggested MS. But have ruled out anything catastrophic.

That you are wanting to talk about how you can prepare you family for a diagnosis that you only think is coming because of google.

That you shouldnt be looking at getting your affairs in order to make it easier for the kids 'when the time comes', because of it is MS, it isnt a death sentence and you can have a long life the fact that you think it could be MS AND that it could be the worst possible scenario of it leading to death soon, is blowing it all out of proportion and shows that your thinking regarding this is off.

You are expecting your husband to discuss how the family are going to support you, when this diagnosis comes. Even though it might not. I presume you also want to tall about 'when the time comes'.

You wanted food, he took you for food. You had the car journey to talk. He wanted to get home to the kids, after what you say was an intense day. Even though you had already stopped off for food, you wanted more time to discuss it.

The fact that you are so vague about the tests, to me, says that if you say what's tests you had it will be clear the only person who is sure its MS is you.

When you are ill and dont know what it is awful. But the symptoms you describe could have been me 12 weeks ago and it was stress and anxiety. I am not blaming you for being scared at all. But being scared and determined its MS and that you will die quite soon and wanting everyone to treat you as though you have MS and will die soon, isnt clear thinking. It's not realistic and you are blowing it up into something it's not.

If it is MS, you and dh need to think about how you support the kids and all support eachother as a family. Yes you will need practical support but the kids will need support from you and dh as well. Dh will need some support as well, at times, so you can face it as a family.

RainbowRobot - tbh, I think you are being unreasonable on the back of how your dh behaved the minute you walked out of hospital and the next morning. You have been feeling unwell for a long time and building up to this. Your dh, if he's like many men I know, has been in denial for a long time and now needs time to process the news before he is capable of saying anything particularly helpful or supportive. Besides which, there are several types of MS, and before you have confirmation that you actually have MS at all and which type they think you have, you do not know exactly what the effect on your family might be. So all you would be talking about at the moment is an awful lot of uncertainty. You need reassurance he will be there for you for emotional and practical support, but nobody knows any of the details of what that will entail, so don't expect him to join in with preparing for the worst possible outcome if that is not the way his mind works.

I hope that you will update this thread when you get your results, RainbowRobot.

Thank you everyone, given the lack of detail I've provided I can see why health anxiety and drama keep cropping up.

I do need reassurance he will be there for me practically and emotionally.
A chat without a chance of the kids over hearing would have been good not a grumpy, silent car ride
He won't be around for the next appointment but my friend's will be back so I might call in a favour.

@steff13 yep my DH is the same. 100% willing to help with anything I need/kids need when we are poorly, but he needs instructions! He's not a bad person either! It can be frustrating but everyone is different.

If it helps, RainbowRobot I think if there was anything seriously wrong with you you would know about it by now. The Drs would have told you when you had your MRI etc if there was something catastrophically wrong. Well, that's my experience anyway!

I don’t think the OPs posts display any anxiety, worry or distress.
This isn’t ‘omg I may have xxxx what on earth am I going to do etc’

I think the OP wants the attention that comes with being seriously ill, and thus the drama. Despite her being allowed to leave hospital, nothing found and no mention of anything, she’s then gone on google and decided on a condition. And now expects everyone to act as if the medics have said that’s what they think it is. I think she will be googling constantly, ascribing every twinge to her subject and is enjoying the self-induced high drama. GP visits do not supply the buzz, because a lot of the time we’re not that ill.

My friend was referred for an MRI head following her optician seeing something concerning on her eye exam. She had the scan yesterday. Just a scan. No consultant, just the test.

I am a member of the BHF patients forum and we occasionally have people there post about their ‘probable’ heart attacks which no clinician has yet diagnosed. The things they say don’t match the pathway experienced by the rest of us, discharge from hospital doesn’t match the need to basically stop them dying (you’re generally kept in after a heart attack as you’re a bit unwell and could possibly go bang again). They don’t sound worried, but more excited and almost competing to be super ill.

You know when there’s been a murder and they want to find/charge the suspect? There’s things go on within that investigation that cannot be guessed at, and anyone non police wouldn’t have a clue goes on.

Being diagnosed with a serious health condition is like that. The devil is in the unexpected details. Dr Google doesn’t give you that.

I totally understand where you are coming from OP as I have had MS for over 25 years. I don't know whether you don't or don't have it by what you have written but I feel that those who say that you can't possibly know by reading "dr google" remind me of what I had to deal with prior to getting a firm diagnosis. The people who told me that I couldn't possibly know or that I was a hypochondriac made it 10 times worse. I was actually quite relieved to finally get a diagnosis and be taken seriously.

As I said, it is not clear from what you have written that you have MS but even if you do it really doesn't mean that you will need to be looked after in the near future or perhaps ever. I have had MS for a long time and still work in a professional job and can totally look after myself. Also when I was diagnosed there were no effective treatments whereas now it is a very different story. They can really slow it down and I think that the great majority of people diagnosed today will never be very disabled.

I'm quite happy with timescales, appointments, departments and referrals. The NHS are fucking brilliant. Everyone has been very straight forward which is why I want to discuss it with DH except he keeps running away!

Sorry Bunnyfuller not feeling the need to discuss the nitty gritty diagnostic details you'll just have to trust me. But I would be interested in the level of support you'd offer or expect going from very healthy to hospital test situation.

They can really slow it down and I think that the great majority of people diagnosed today will never be very disabled

That's so good to read and I hope the OP takes not (and heart) from someone who has a diagnosis of MS Maryscary008

*note

I think the OP wants the attention that comes with being seriously ill, and thus the drama. Despite her being allowed to leave hospital, nothing found and no mention of anything, she’s then gone on google and decided on a condition. And now expects everyone to act as if the medics have said that’s what they think it is. I think she will be googling constantly, ascribing every twinge to her subject and is enjoying the self-induced high drama. GP visits do not supply the buzz, because a lot of the time we’re not that ill.

That's is a really nasty thing to say and actually you have no idea.

What do you want to discuss with your DH?
Presumably you've had tests, now you wait for the results.
Is it your fear you want to discuss?

Btw I understand the limbo you're in when waiting on tests and results. Recently I had some tests and I started about 3 threads about it between learning about the tests and having them and finally getting the results.
Just tell yourself that you can do nothing for now but wait.

OP, is this the first time you have ever had distressing symptoms, tests and no clear diagnosis? If it is, if you have always been super-healthy, strong and active, then this may be why you have got yourself into such a panic.

On the other hand, if you have a history of vague symptoms just bad enough to need a few tests, and you start writing your will and planning your funeral every time, until you get told there's nothing seriously wrong, then that might be why your H is displaying more weary resignation than rushing around pampering you.

I'm minimising it for the DC and not telling you lot the whole story but this is not a normal level of service

Its kind of hard to know what's going on if you are telling everything though.

Aren't

How about you write down how you feel if there's no one you can speak to about it? Or even record yourself talking about it?

discharge from hospital doesn’t match the need to basically stop them dying (you’re generally kept in after a heart attack as you’re a bit unwell and could possibly go bang again). They don’t sound worried, but more excited and almost competing to be super ill.

Yeah, I've seen that. My BIL is such a lovely man, but he's very obese and is a workaholic who does no exercise. He had a defib fitted almost 3 years ago due to his heart stopping due to some idiopathic condition (neither he nor my sister are big talkers). Life went on, he did not lose weight or exercise. His device shocked him whilst on holiday. But did he go immediately to the A&E or his cardiologist? Nope. He went a few days later, whereupon he was sent to hospital immediately. Two of his arteries were blocked and one was on the way. He has developed full blown cardiovascular disease and was in there for days having stents fitted. At least there was no waiting for results!

I have endoscope next week. I'm guessing they don't give you results there and then, do they? Even if it's bad news? It's a bit annoying, that they know crucial info about you, your own health, but make you wait.

You need to talk to your husband, @RainbowRobot.

I've been where you are, and when people are diligently looking for signs of MS, it feels like there has to be something wrong. Like this is it. But actually, there's not a decent amount of the time. I was so certain there would be.

You have to take into account where you are now. Which is that you are clearly very anxious and catastrophizing, and not feeling well, and worried about MS. And you'd like to know that if worse comes to worse, he'll be there. But realistically nobody can promise that, people step up because they have to. I'm sure that he will, but there isn't a way that he can prove that to you now.

And living like normal to a certain extent is a good thing. It's a good thing for you, and your relationship, and your children. If you get a diagnosis, you'll have to reevaluate what you can and can't do as your abilities decline - if they decline - but managing your condition will become second nature and you don't need to try and do that now; you might cause more harm than good.

If you've got reason to believe he'll be crap, you might need to lean on other people for debriefs. If it's this one occasion, where you were both hungry and tired, and fairly disorganised, you're further catastrophising that he'll be awful because he wasn't great on this one occasion.

I hope you get some answers soon

You just get on with it. Sorry if that's harsh but 🤷🏽‍♀️
I've been through a limb threatening spinal surgery and recovery where you can't sit for longer than 45 mins or bend or twist, alone. Nobody to bring me home from hospital or food shop etc
I live daily with a compromised immune system and inject myself with a drug that has horrific side effects to stop me getting neutropenic sepsis. I spend 12-24hrs once a week with flu symptoms, shivering uncontrollably,hot/cold, severe bone pain and headache
My other condition causes massive abscesses which make it hard sometimes to move around and have to be packed and often drained under a GA
I do the lot myself, and work FT because nobody will pay the bills if I don't. I get having a DH is different but if you need to vent then maybe use a friend or online. If you need advice, ask the consultant