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.

[Myriade]

Interesting that you assume my remark was about you. Says a lot about you...,

I also assume that you have never been ill or have MH issues.

FWIW I have been in a place where I needed my shanti be able to talk about the future like this. To plan if he could change jobs, stop travelling etc... The talk ne et happened because ‘he is practical and didn’t see the point of planning fir that when it wasn’t needed’. The end result = it never happened and I was left struggling. Because it’s inpossible to make that sort if changes wo planning ahead! Or not risk so putting your financial positions jeopardy etc....

Besides, it still doesn’t change the fact that it might well be a coping mechanism fir the OP v
And IF she is actually I et reacting, then telling her Tobias stop and get in with it. That you would never accept such behaviour won’t help. Not her, not her dh or the overall situation.
Basically dismissing her is a loose - loose situation...,

[Maryscary008]

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.

It doesn't take all day to do the test but you can end up being in hospital all day waiting for test. They may have also done other test such as looking for a brain tumour.

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 would count it as a catastophic illness that has to be diagnosed and treated very urgently.

[Maryscary008]

I wouldn't count it as a catastophic illness that has to be diagnosed and treated urgently.

[Ilikethisone]

Interesting that you assume my remark was about you. Says a lot about you
So who did you mean? People who think op needs to change her thinking or expectations, I am one of those. So you dont mean me, so who did you mean? Says alot about you that you cant be direct in your posts.

If you read my posts you would see I have health issues this year and also have depression and anxiety. Indulging someones anxiety often makes it worse
Not better.

But I guess reading other peoples posts, is something you dont bother doing.

It doesn't take all day to do the test but you can end up being in hospital all day waiting for test. They may have also done other test such as looking for a brain tumour.

OP said it was 12 hours having tests and seeing consultants. She also uses all the tests as back up that it's something serious.

Iwouldn'tcount it as a catastophic illness that has to be diagnosed and treated urgently.

In which case the OP is catastrosing the situation, bu focussing on 'when her time comes'.

OP clearly thinks she will die soon. So either MS catastrophic for her or it's not and she is showing anxiety in her thinking.

[Myriade]

And in which way exactly are you helping the OP overcome that anxiety then??

[Maryscary008]

OP said it was 12 hours having tests and seeing consultants. She also uses all the tests as back up that it's something serious.

I don't think that means she was having tests and seeing consultants every single minute of the 12 hours. Last time I had an MRI it took four hours in total and that was without waiting around to see a doctor. Anyway, I gave stroke as an example of what they might look for. I didn't say that it was the only thing.

In which case the OP is catastrosing the situation, bu focussing on 'when her time comes'.

OP clearly thinks she will die soon. So either MS catastrophic for her or it's not and she is showing anxiety in her thinking.

Because she is really scared as I am sure you would be if you suddenly realised you could have MS. I was certainly like that when I realised and that was before a doctor confirmed it. As evidenced by this thread, many people think that MS leads to definite severe disability in a relatively short time and that is terrifying. Have some empathy.

[Ilikethisone]

And in which way exactly are you helping the OP overcome that anxiety then??

Maybe read the thread.

@Maryscary008 I totally understand she is scared. But she has clearly twisted alot of information into convincing herself she has MS. She might we dont know.

She also thinks her death is imminent. Expecting her husband to indulge that, which is what she wants isnt help her. She is upset he wont.

The other issue is, when you are sick and depending on someone else for support you need to recognise when they cant, temporarily, give anymore. If you dont that person burns out and will be mo support. 12 hours at the hospital, the drive, the stopping so OP could eat. He said he wanted to get home to his kids. It has to have been a 14 hour day. At 3last.

She needs to understand because he just wanted to get home that day, doesnt mean they cant ever talk. And that this is something that she needs lots of support in. But it needs to handled as a family, of the diagnosis comes through. They will all need support and sometimes it will be about OP supporting her dh and kids. Even if that's just putting a pin in a converstation until the next day. It cant be just about how the family (so including her kids) can sort her care plan. When no one has any idea what that will entail.

[Maryscary008]

@Maryscary008 I totally understand she is scared. But she has clearly twisted alot of information into convincing herself she has MS. She might we dont know.

What evidence do you have that she has "twisted alot of information"? She has said she has double vision which could be MS. She has also had other symptoms which could MS -we don't know what these are but no reason to think she is twisting anything.
You may suffer from anxiety and catastrophise things but you have no reason to think OP is doing the same.

[SirJamesTalbotAndHisSpeculum]

I don't understand why the OP and her DH couldn't have talked on the way from the hospital to the service station. OP did say her DH didn't say anything so she could've started the conversation then.

I am also wondering what the DH did all day when OP was having the tests. Was he waiting at the hospital with her? If so, they could have discussed her worries (and his) while they were hanging around.

And is the DH not permitted to be anxious too? He may be very upset and thinking how he'll cope with the DC if his DW has MS? Maybe he doesn't understand that most people with MS do not end up paralysed and dependent on others. Maybe the OP doesn't understand this either.

[TrainspottingWelsh]

If you want practical advice for preparing your children about your imminent serious illness and possible death, when you have no physical grounds to assume either are a likely outcome, let alone any confirmation as of yet, then yes, it’s fair to say it’s anxiety and catastrophic behaviour.

I spend a fair bit of time around people who are seriously ill, and in some cases already know there’s every possibility the prognosis will be terminal, or at the very least life changing. And whilst they might all differ in how they want to deal with it personally or with the adults close to them, how to get your dependent children to support you being ill and prepare for losing you isn’t something anyone I’ve ever met or heard of wants to think about, let alone act upon until they absolutely have to.

Regardless of whether it turns out that op is seriously ill or a drama queen, her thought process towards her children appears to be anxiety driven at the least.

[Bowsy5]

It's a bit like the case of the little red hen who thought the sky was falling in.

[Bowsy5]

Sorry, that was Chicken Licken!

[RainbowRobot]

Hello Everyone,

So I've tidied the house a bit more than usual and made sure there's easy meals for the DCs to rustle up if I'm not here.

Told the kids it was a long day because in hospital the emergency cases go first.
Reassured them it's not cancer, probably something straight forward but it has to be investigated.

Have appointment through for another MRI and possible lumber puncture. Will have to arrange transportation.

No drama, not spoken about it in real life or social media. I've not ordered a Spike Milligan style plaque. DH still hasn 't caught up from Monday, it's like it never happened.

I'm surprised how quick many were to jump to Health Anxiety, must take up a huge amount of NHS resources. I did wonder if the charity awareness campaigns have this as a downside but I think some humans have always been susceptible. I think the reason for Three Men in a Boat was due to one of the chaps reading a Medical Dictionary and self diagnosing a dozen ailments on the first page.

Any other great ideas about what to do when in this waiting zone?

[RainbowRobot]

Asking for the Little Red Hen - how do you get the rest of the family to start helping?

[tuberr0se]

Doesn't everyone have to arrange transportation? Hopefully the next round of tests will come back clear.

[tuberr0se]

As you have another appointment, what did they say they were testing for?

[ThatCurlyGirl]

@RainbowRobot

Hope you're feeling a bit better today. Try to understand many posters (myself included) were trying to reassure you and help you not assume the worst just until a diagnosis is made, rather than trying to have a go at you

[RainbowRobot]

tuberr0se re transportation, very poor public transport links here and I doubt DP will be reorganising his diary (although it's very flexible sometimes.)

I've been passed on to the neurological team. They all tend to talk about 'ruling things out' a little optomistic spin but are keen to discover 'why'.

[bluebluezoo]

Asking for the Little Red Hen - how do you get the rest of the family to start helping?

Ask them?

What do you actually mean by this?
Do you want them to do more around the house? Ask them.

Do you want them to start behaving as though you are seriously ill? Does “helping” mean taking over the running of the house, providing emotional support and planning for you being seriously ill and even dying?

You keep asking how to get your family to help, but won’t say what help you need.

[SirJamesTalbotAndHisSpeculum]

So did you go to A & E for the first round of tests?

[SirJamesTalbotAndHisSpeculum]

RainbowRobot I live 100 miles from the nearest big hospitals in Glasgow.

Transport links here are also poor. It takes us three hours to drive to Glasgow if we have appointments. Then three hours back.

That is just how it is. You have to accept it. The NHS does not have the resources to come and collect every patient who needs to see someone in out-patients just because they live quite far from the hospital.

[RainbowRobot]

Here's one example.

The spare loo roll is in the cupboard in the bathroom, accessable by all.
Recently we've also had a bargain 16 pack on the floor in eye line from the loo but approximately 2m away.

One roll on the holder, another next to it. When the first roll runs out, replace & restock.

I went away for 24 hours get back, sit down on the throne - no loo roll in grabbing distance, nothing.

It appears I am the only one bothered by this.
Unless you can come up with a better plan I shall solve this by carrying my own personal paper stash at all times.

Now multiple this by a million other little things and imagine you've got the kind of flu where you'd not have the energy to bend down to pick up a £50 note

[Myriade]

What to do so that the rest of the family starts helping

What worked for me was to ask and not be shy about it. The older the dcs easier it is.
I’ve also just stopped doing the stuff I couldn’t do and concentrate on the essential. It does mean the house is a tip/dusty/not hoovered etc.... but the kitchen is cleaned and there is food in the house.
Much easier with the dcs than with H ime. But telling him that from now on you can’t do xxx and it’s now his responsibility might be enough to do the trick. If you do so, doNOT then do xxx or some of it. It has to be HIS responsibility only.

Last word of advice, don’t try to do it all as if you were well. Again, ime, this only lead to people thinking that you can’t be that ill and therefore few allowances are made.
So if you are tired, don’t just say you are expecting your dh/dcs/family to adjust and lighten your load it has to be say you are exhausted and you can’t do xxx. Then don’t don’t it and expect them to pick up the load iyswim

[SirJamesTalbotAndHisSpeculum]

You could make a list of things that need doing frequently, such as changing toilet rolls, and get everyone to agree to be responsible for various things on the list.

I've had chronic fatigue - for eight months. I do understand that there is an inability to pick up toilet rolls etc.

But you did manage to go to a motorway service station, after twelve hours in the hospital.

When I had CFS I could not have managed that.

[RainbowRobot]

SirJamesTalbotAndHisSpeculum I'm not expecting the NHS to send a limo or railtrack to get a shift on and reopen the railway line.

Locally most people help out - we all drive our partners, elderly parents, teens and do a good turn for neighbours. The local Facebook group connects people.
I have a partner who drives with a flexible job who I cannot assume will take me. That is what this thread is about.