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.

And if you are very ill, generally you find out very fast. I had bloods in the morning at my doctors and she rang me after the surgery closed to say I needed to go to haematology where a consultant would be waiting. I had a diagnosis that day, and the cause of it 4 weeks later

And if you are very ill, generally you find out very fast.

That's not true with long term conditions, however serious.

I would hope for a bit of ‘all good news so far’ especially if the only person who had suggested anything serious was me from Dr Google. I certainly wouldn’t expect a dinner cooked or a long discussion about what I’d read on the Internet.

I wouldn’t ‘expect’ anything. And despite my actual diagnosed serious disease I haven’t planned my funeral or affairs. I’ve not ‘broken anything to my children’ - they know I’m ill probably due to a variety of paramedics making a mess in our living room when things have got a bit messy. Very few diagnosis are an actual death sentence these days, and even when the prognosis is to end of life people can go on for years.

If, God forbid, it does emerge that your double vision and ‘other stuff’ (why only one fairly innocuous detail mentioned around symptoms?) you are unwell, you will realise it’s just bloody mundane, annoying and just something to get on with. I literally had one moment where I thought ‘oh shit, I’m going to die on this table’ in the cath lab, clot having been blown and bp crashed thru the floor. No one is saying minimise, no one is saying don’t get checked but for Gods sake don’t act like you have anything to deal with until you do.

@scarymary I’m sorry that you see my post as nasty, but I don’t see a frightened, anxious person who’s been officially told ‘we think it is probably MS’, she’s said herself in other posts this diagnosis is from her googling. And no sense of ‘I can’t believe this’ and that initial trying to process how your world has just changed but you still feel the same person. Just complaining that her husband hasn’t made enough of a fuss of her. She wanted him to talk with her - about what?! The docs haven’t found anything wrong, and they haven’t suggested anything!!

I think she being deliberately vague to avoid getting busted as over exaggerating.

@Maryscary008 mine is a lifelong condition. It was obvious from the bloods what it was but not what the cause was. It's one in a million in adults, more common in children

Thank you MaryScary for writing something nice and sensible on this thread. Reading this last night was hugely triggering for me so I honestly appreciate someone saying something calm and rational.

That's not true with long term conditions, however serious

Sometimes it is- when you have a good doctor. despite my conditions being very rare, and incurable and life altering, my GP had a pretty good idea what it was as soon as I described my symptoms.

And that was 10 years ago- and I'm still here! And working full time. Yes, my life has changed and yes sometimes I'm very ill. But I have a life, and just find my condition extremely annoying.

@Maryscary008 mine is a lifelong condition. It was obvious from the bloods what it was but not what the cause was. It's one in a million in adults, more common in children

I meant a long term condition where urgent treatment won't make a huge amount of difference. OP think she has MS and they do not hurry to diagnose that in the NHS. They are much quicker nowadays than they used to be (as there are treatments) but certainly rarely as fast as your diagnosis.

It's clear she's panicking and making much ado about nothing (so far), but it's hard to understand how the worst case scenario potential diagnosis can make you feel.
For e.g. I started a thread giving out that I had to suggest a potential diagnosis to GP before referral.
Then I started a thread wondering why I had been referred under the 2 week path
Then I started a thread about failing the pre-op assessment
Then I probably started a thread wondering about how long it would take to get results etc. etc.

In the back of my mind, I knew there wasn't anything serious wrong, but it's funny how some of the literature you receive from hospital can contain information including worse case scenario info.

Apart from the numerous threads I started here, I was also talking to family, posting vague catastrophic prophecies on FB, completely having an almost nervous breakdown (almost believing I had the worst case scenario already) etc. etc.

This went on for weeks.

In the heel of the hunt, fuck all was found, final result was entirely benign and normality resumed lol

But, I can understand the sort of crazy mental process you can go through.

People on here posting saying, I've just had this, nothing was found, did not reassure me nor please me - they annoyed me! They simply didn't acknowledge that I don't have the results yet and until I do, I shall continue to hibernate, panic, catastrophize and generally drive people up the walls listening to me!

I’ve been seriously ill twice in the last year - I honestly cannot think of anything worse than having to eat or talk when I got home.

OP have you got your results back?

I got mine back same day so am hoping your not hearing back is a good thing!

I would hope for a bit of ‘all good news so far’ especially if the only person who had suggested anything serious was me from Dr Google. I certainly wouldn’t expect a dinner cooked or a long discussion about what I’d read on the Internet.

I think that would depend a lot on what your symptoms are. I don't know what is going on in OP's case as she hasn't really mentioned them but the symptoms of MS can be very weird and scary despite often being invisible to other people and therefore it doesn't really matter if anyone has given you an official diagnosis yet. As for "dr google" it really depends on what you have been reading. Some sites are actually very good and accurate and I say that as a healthcare professional. I actually found it very distressing to be told that there was nothing wrong with me or (by non healthcare professionals) that I was a hypochrondriac so I do feel quite annoyed when others start to do it to someone who thinks they have MS despite not having a clue about what their symptoms are.

Thank you MaryScary for writing something nice and sensible on this thread. Reading this last night was hugely triggering for me so I honestly appreciate someone saying something calm and rational.

I'm glad it helped. Things are really changing for MS at the moment with a lot of new treatments and there will be more changes in the future. It's very different to how it was 25 years ago. Even without treatment there have always been people with a relatively mild version.

Theres a difference between thinking you may have something and what the OP is doing

Wanting to prepare her kids to support when its diagnosed (her other thread states preparing her family to support her)

Starting and focussing on Swedish Death Cleaning for make it easier on the kids 'when the time comes'

Wanting to plan for how care and support will happen.

Complaining that dh should have known she wanted to eat. Despite the fact that she told him and he took her for food. Complaining that he wanted to get back with to the children and home, after 12 plus hours at the hospital and stopping for food, rather than wanting to discuss what happens 'when the time comes'.

Theres also huge inconsistencies in her story. Simple things like dh annoyed because the phones were dead and wasnt sure where to go for , but then taking a call from a friend. The fact that she womt share what tests she had. She wont even confirm if any medical professional has agreed its possibly MS. So I assume not. I also assume the tests were not what anyone would expect for MS and just more generalised.

She could be right. But planning your death and how to prepare your kids for your death etc is totally different to saying 'I think it's this and I am scared. I an scarrd about what will happen'

I have to agree with Bunnyfuller on this - I started out trying to remind myself that everyone reacts differently, but even in my first post on this thread I noticed an eagerness to be ill. There’s a coldness to some of OP’s wordings that make me worry about her DH - I hope he’s got good support.
Oh, and sometimes MS isn’t diagnosed until it has already progressed beyond a point where it can be treated. Then your life does come crashing down and you lose a great deal of your sense of self and worth to the disease, on top of the constant exhaustion and pain. When it happened to me, my greatest fear was that my partner would become my carer, instead of my lover. The more OP posts on here, the angrier I feel about their attitude.
Probably going to get flamed, but frankly I’ve had a gutful in real life of competitive illness.

@IlikethisoneIlikethisone Well I started doing many of the things OP said she is doing (although not preparing family because I didn't have one) when I realised that I almost certainly had MS despite not officially having it confirmed (In fact they tried to persuade me I didn't have it). Therefore I don't see OP's reaction as out of line. I see it as someone who is panicking.

@Maryscary008 but the OP does have a family.

She has complained that she feels husband wont support her because he didnt realise she was hungry and wouldnt stay out longer 'to talk'.

He did get her food. She was in hospital 12 hours, so after food 13 hours, more? He wanted to go home to his kids. I am sure whoever had the kids would have wanted that too.

I can imagine it is frightening for the OP. That doesnt mean family members should be involved that dont need to be (the kids) and the DH shouldnt have to talk to her in a way that deeepening these fears.

Or that his want to get home was anything to do with him not wanting to talk to her. He may not want to discuss her preparing for death.

The majority of people with MS are treatable and live long lives. The OP hasn't even said she is convinced its MS and doctors are fobbing her off. She even said they have ruled out anything catastrophic. She was in hospital for 12 hours having test. That's quite a long seris of tests. Not just some cursory general test. And appointments with consultants, so multiple.

I totally undertsand the panic. But the 'how can everyone help me' attitude to a problem that is not yet a problem, rather than 'how do we prepare as a family' is very odd and I dont believe anyone should have to play along.

While op say she doesnt suffer health anxiety in general, it's clear she is here by sorting our her affairs to make it easier on the kids when she dies and planning on telling them.

Panic and worry and want reassurance I get. But that's not what she wants. She wants to sit and discuss worst case scenarios.

@Ilikethisone I agree that OP shouldn't be involving her children but she has every right to expect a lot of support from her DH if she is experiencing frightening symptoms. As for ruling out anything catastrophic, I assumed that would be ruling out things that weren't MS rather than the other way around e.g. stroke.. The diagnosis for MS wouldn't involve being in hospital for a day, so I don't think they were testing her for that.

Have you reported your double vision to the DVLA? You are legally obliged to.

But she doesnt want support for her symptoms.

She wants support in planning what's going to happen. Given part of her planning is for her death and getting rid of stuff so the kids dont have to do it, I woildnt want part if that converstation wither if that's the way it was going.

If dp was wanting to talk about him dying, because he had some tests I would be very reluctant to buy into the view that its definitely MS and he is going to die shortly so needs to sort out his stuff.

I was tested for a stroke earlier this year. It doesnt take a full day either. A Brain scan and a lumber puncture, some questions and testing my reactions. They havent just tested for one thing.

MS is pretty catastrophic, as you know. P didnt say anything catastrophic, except for MS. They are now, probably, looking at more mundane reasons for her symptoms.

I just dont believe indulging the op in swedish death planning and planning on how to tell her children and plan for care will help her at all, or should be forced on her dh.

Indulging health anxiety, rare helps in the long run.

I mean who can plan what care will be needed. It can change from month to month. Or week to week. Should dh leave his job? Maybe change to a power paid job where he doesnt travel. Sounds good but it might mean a big cut in income and, with treatment, the OP is living a fairly normal life in the years to come.

I’m really curious to know how posters can say the OP is over anxious and catastrophizing when they dit know what the diagnosis is. Do you have Cristal ball that tell you the symptoms the OP is getting aren’t that serious??

As much as it ça feel nicer to SOME people to stick their head in the sand and say there is nothing serious until you have been told, for OTHER PEOPLE being able to plan what would happen IF they are that ill is what is feeling safe. Because it gives them a sense of safety in knowing they have things in place (even if it’s just in their mind).
Dismissing anyone who is planning ahead on how she can get her dh onboard is pretty dismissive tbh. And so is telling her she has health anxiety etc.... which is basically dismissing any concerns she has.

@Ilikethisone maki g a plan doesn’t mean putting it into place.
Knowing that let’s say her can change his job doesn’t mean he will. Just that it’s a possibility that could work.

Planning is a good way to feel like you have some control when you don’t have any. Just like some people start cleaning the house or do a big tidy up.

I have to say I’m very happy not to be in a relationship with some of the PP

No one has said she doesnt have MS. Not one poster.

But it appears that the extensive medical team, dont agree with her.

What people are saying is that her dh did infact get her food and just wanted to get home to the kids after being out of the house for at least 13 - 14 hours. He probably wasnt at his best. Who would be?

The dh might not know if he can move jobs yet or anything. OP could live a fairly normal life for years. How does he know if he can change jobs when they dont know anything. If he says he will and then doesnt or cant when the diagnosis comes through. Is it better?

OP is clear putting things in place for her own death. A death that will come soon.

She isnt just planning she is actively putting these plans in place.

I am glad you woildnt want to be in a relationship with me. I am quite practical. I wont indulge someones anxiety when it ismt going to help. I have anxiety and depression. When I feel like I dint want to wake up on a morning, I am glad dp doesnt indulge me.

She wants support in planning what's going to happen. Given part of her planning is for her death and getting rid of stuff so the kids dont have to do it, I woildnt want part if that converstation wither if that's the way it was going.

Well no but surely if you thought they were wrong you would tell them that and try to comfort them.You wouldn't just refuse to talk if they were clearly going through a traumatic time would you?