Forum

Slightly concerned

New diagnosis and before diagnosis
#1

Any one got any ideas on how to convince my OH that I’m not putting on my symptoms? My wobbly legs, caused by the bath and exercise incident that I mentioned in my first post haven’t become any less wobbly yet. The last 2 days it has been painful when standing for longer than about 5 mins so have taken to sitting between doing things. I don’t want to stop doing everything but my kids and friends have been helping to carry things that I’m afraid I’m going to drop. OH on the other hand seems really put out when I ask him to help. I asked him to take the youngest up to bed lastnight which he did. When it came to taking the older boys up a little while later though he didn’t say a thing. He sort of settled down on the sofa more and ignored my looks. I guess I should have said something but foolishly carried on. When I try to explain how my body is feeling I feel very dismissed. My concern is that at the moment we haven’t a clue what is wrong and he is like this, what if it does turn out to be something that is going to get worse over time? Just not sure what I can do or say to convince him without feeling that I’m moaning, which I’m not, I’m just trying to get him to understand!

Sharon

#2

Hi Sharon I’m can’t help much as I’m separated from my husband so haven’t had to deal with that kind of thing recently! I would suggest though that you find a time to talk about how you are feeling when the kids aren’t around ( is there anyone who could look after them for you for a bit so you can talk more easily?). I think it would help to talk about it when you aren’t feeling stressed and angry that he’s not helping (and that’ll probably be all the time the children are around!) Then I would ask each time you need him to do something rather than hoping he picks up on your looks - my husband’s excuse for doing f*** all was that I never asked him to. I don’t think he ever got to grips with fact that I wasn’t his mother too! It could be that he’s scared though as well - maybe by letting you get on with things he can pretend everything is ok. Hope some of that makes sense. Do you have other people who can help if he really digs his heels in? Xx

#3

Hi Sharon,

Could it be his way of protecting himself? He doesn’t want it to be anything serious, any more than you do, so he may find it “easier” to believe you’re imagining things, or exaggerating. He hasn’t got to face it then, has he?

Sometimes relatives find it very hard to accept, even after diagnosis proves we’re not making a fuss about nothing. But it doesn’t necessarily follow that your husband will be one of those. He may just be someone who deals with it by saying: “Well, we don’t know until we know” - and until then, business as usual?

I know the net result is that you feel disbelieved or unsupported. But I can also see his point of not wanting to accept it’s anything serious, when it still might not be. At least, I assume you are not diagnosed? My memory is poor, and I’ve not looked back through previous posts, to check exactly where you are on your journey. Are you still at the point where it could be anything, or are there scan or test results pointing to possible/probable MS by now?

I don’t really know how to explain invisible symptoms to somebody who’s never had them. It’s a bit like trying to describe a colour they’ve never seen, isn’t it? I usually try to relate it to something they probably will have experienced (depending on the audience) - flu’, hangover, jetlag, “as if I’ve overdone it at the gym”, etc. None of these may be perfectly right, but enough to give the uninitiated the general idea.

Tina

x

#4

Hi Sharon, Tina has a valid point. Quite often our nearest and dearest stick their heads in the sand, not wanting to admit to themselves (or to others) that there’s anything wrong at all, let alone that it could be something potentially serious. It doesn’t help that trying to describe the effect various symptoms have on your body, is so incredibly difficult. If we had plastercasts on our legs for example, we wouldn’t need to offer any explanations because it’s visible to the eye. If people ‘can’t see’ something they often have trouble believing in it’s existence. I quite often use phrases such as ‘my legs feel as if they’re encased in concrete’ or when I’m having pains in them, ‘it feels like I’m being continually stabbed.’ It’s even harder when we’re going through the diagnostic stage and we have no concrete answer when people ask ‘what’s wrong.’ Maybe have a peruse through some of the publications the ms society and ms trust have. There are one or two which have tips on how to explain to others have you feel. Plus, actually seeing something in black and white may help your OH start to understand what you’re actually going through. Debbie xx

#5

I think Tina’s thoughts are spot-on. My guess is that your husband is dealing with the problem in standard spouse fashion: by ignoring it and hoping it will go away. This is normal. Please try not to be too downhearted.

Alison

#6

Thanks all, My mum and my friends are great. They have all noticed the changes in my abilities and help when they can. Tina, I am at the very begining. Things have been going on over 2 years but because they have all been separate the GP has only just linked them and refferred me. See the neuro in August. For all that time OH has just dismissed my explanations and turned everything round to how he is feeling. He has a compacted disc and carries on so nothing comes close to how he copes. He also had a lung cancer scare 3 years ago and He was allowed to discuss with other people but he wasn’t happy if I did. It feels like he isn’t happy with the idea that for once I may have got one up on him, no matter how it is affecting me. I think it is burying head in sand syndrome.

Very true Debbie, maybe I should have plastercasts put on and tell him it is the only way they can support the rest of me :slight_smile:

Sharon x

#7

Thanks Alison, it really got to me lastnight and this morning woke up feeling down at the thought I may not get through to him

Sharon x

#8

LOL…good idea Sharon. D’you know, I think you’ve found an opening in the market! :slight_smile: Debbie xx

#9

Lol, quick, how do I patent the idea! :slight_smile:

#10

Hi Sharon, I have exactly the same problem with my husband. I think he’s simply in denial. I’ve just had my second MRI, luckily while I was having symptoms, and I’m really hoping something shows up, to give me ‘proof’ there is something happening! Like the others have said,I think its their way of dealing with something that is scaring them too. You must try talking to him, if you don’t ask for help, he won’t know you need it! Good luck hun! Kay xxx

#11

I have the same with my husband too. He says its either my migraine playing up or stress. Tells me to concentrate etc when I get words wrong or cant speak but if I’m honest I do think it’s because he doesn’t want to think about any other options, he knows I can’t really tolerate being touched because it either burns or sends crawling sensation around my body and has already told me I should have an eye test cos I keep falling. My way of dealing is not to discuss it with him unless needed like appt has come through, that might be wrong but he obviously can’t talk about it at the moment and I would rather speak to my friend who can X

#12

Hi, a lot of men just cant talk about emotional things.

Mine is the same. he will cook me a lovely meal, take me to meet friends or carers, pick me up later, build a deck for me…but does he ever ask how i am? nah…never!

I often feel he is not listening to me. In fact I have proof as he says I didnt tell him about some things, when I know i have, or it`s written on the calendar.

We`ve been married 41 years and he has bad rheumatoid arthritis.

He is my main carer and having this disability has taken a toll on our marriage.

i love him to bits, but sometimes he frustrates me enormously…probably versa visa too, no doubt.

luv Pollx

#13

Hi, a lot of men just cant talk about emotional things.

Mine is the same. he will cook me a lovely meal, take me to meet friends or carers, pick me up later, build a deck for me…but does he ever ask how i am? nah…never!

I often feel he is not listening to me. In fact I have proof as he says I didnt tell him about some things, when I know i have, or it`s written on the calendar.

We`ve been married 41 years and he has bad rheumatoid arthritis.

He is my main carer and having this disability has taken a toll on our marriage.

i love him to bits, but sometimes he frustrates me enormously…probably versa visa too, no doubt.

luv Pollx

#14

Thanks all, I tried asking more and he has started to ask now whether I can do something or if I need him to do it. I think this week has actually got him thinking as he questioned whether I would be able to do something that I have got planned for August. I’m not sure if it was because of comments the children have made but hoping it stays this way.

S x