To look for more support than this?

(58 Posts)
atrcts Mon 09-Sep-13 15:29:39

I have multiple sclerosis (for those who might not know it's an incurable neurological disease where lesions form on the brain, leaving scar tissue, and affect whichever bodily function that part of the brain they've damaged (in my case it's memory, balance and limb weakness).

This means my brain has to work about 3 times harder than anyone else's, to do the simplest of every day tasks.

For example, I have a weak and slightly numb arm, and so to lift a drink to my mouth takes 3 times the physical effort than it would for my partner. And my one sided weak and numb leg wears out 3 times faster than his, so being on my feet makes me very tired. Not to mention the extra hard work from the lesion causing the poor balance (double whammy effort there!).

So I live really tired. Abnormally tired. I am told by the hospital that I need to manage my tiredness and have a sleep to get though each day, to prevent myself going under.

My husband has to be told repeatedly that I need to lie down to reset my tired brain. If I don't, my symptoms get worse and eventually I risk growing more lesions through being physically stressed and run down. He seems to forget or ignore it, and questions whether I actually do need to rest. Today when I asked if he was ok if I nipped off o a half hour sleep before my hospital Physio appointment he got a bit hostile and said e was really busy preparing food and that he wouldn't be free for the baby. So no, in short.

I was so angry we had an argument about it. By this time he backed down but time had passed and besides I was too mad at him for making me feel bad that I need to physically rest.

Am I being unreasonable to expect him to be on board with me here?

CailinDana Mon 09-Sep-13 15:32:03

No of course not. Does he realise how serious MS is?

atrcts Mon 09-Sep-13 15:32:34

He's medical so knows definitely.

HumphreyCobbler Mon 09-Sep-13 15:34:24

so he knows but chooses to ignore it? sad

YANBU. Can you ask your doctor to discuss it with you both, give you some more back up?

CailinDana Mon 09-Sep-13 15:34:43

Does he have any explanation for why he's so unsupportive?

starfishmummy Mon 09-Sep-13 15:35:14

Oh

Hegsy Mon 09-Sep-13 15:36:50

YANBU

HHH3 Mon 09-Sep-13 15:37:15

YANBU. I also have MS and despite me explaining over and over to my ex that to me working part time was as tiring as working full time, he'd throw the fact that he worked more at me in arguments. And he refused point blank to ever discuss MS.

MrsLouisTheroux Mon 09-Sep-13 15:37:42

Is he tired, overworked, stressed, unhappy, worried about something? If 'no' he is being a twat. If 'yes' forgive him.

atrcts Mon 09-Sep-13 15:38:33

I could ask the GP, but about a year ago I asked the MS team to talk to him about it during a home visit. They mentioned it but lightly, and he made all the right noises at the time. However in reality he doesn't stick to it hmm

Today his explanation was that he was busy preparing food and didn't have time to sort the baby.

The baby wasn't asleep but wasn't crying either - and actually didn't end up needing any attention in the end.

atrcts Mon 09-Sep-13 15:40:20

There isn't anything particularly going on, other than he's about to return to work next week after taking some leave, and no one likes that.

CailinDana Mon 09-Sep-13 15:41:42

Is he a good partner in general? When was your diagnosis and what was his reaction to it?

atrcts Mon 09-Sep-13 15:42:51

HHH3 I'm sorry you had MS and that your ex wasn't supportive to you.

My husband doesn't like to acknowledge ms and tried to explain my symptoms away or ignore them. Denial has always been his way of coping.

I'd be so much different to him if the shoe was on the other foot.

mrsjay Mon 09-Sep-13 15:43:31

tell him that you are going to employ a nanny for the afternoons as your health is way more important and you need a sleep He will change his tune, My dh could be a wee bit like that when my dds were small I just went for a sleep I had to or i would be falling all over the place and dropping things just go for your rest and leave him to it he can cope, I have a neurological defect not MS but I understand the tiredness and needing to rest it isn't as if you are just nipping for a kip, even if you were he is being a twat tbh

mrsjay Mon 09-Sep-13 15:44:29

He needs to get a grip and accept your illness you have enough to bloody cope with than pandering to him,

atrcts Mon 09-Sep-13 15:45:24

dana I was diagnosed 4 years ago. At the time we were not married and I tried to end the relationship for his sake. I didn't want him to be tied to somebody who is going to deteriorate over the years.

He would have none of it and said that no matter what happened he wanted us to be together. I think it honestly believed it at the time, but while I believe he still wants to be with me, I don't know if he really knew what he was letting himself in for, because I certainly didn't!

Badvoc Mon 09-Sep-13 15:45:44

Well, he sounds like a pig.

Tabliope Mon 09-Sep-13 15:46:52

You've every reason to be annoyed with him. Even taking MS out of the equation, if you were tired and needed to lie down why can't he prepare food and look after the baby if necessary? It's what most stay at home parents have to do every day and some manage it with more than one. He's making your life harder as he's trying to make you feel guilty. I don't know what to suggest but I hope he wakes up to the reality of your life.

DoJo Mon 09-Sep-13 15:47:19

Could just be a question of timing? Maybe if you built a nap into your schedule so that you were both expecting it, then it would mean that you could plan your days around it rather than trying to nap when he is already involved in a task. It does sound like he is being unnecessarily petulant about it, but if you both sat down and worked out the best time of the day to nap so that you benefit from it and so that he can plan his day to ensure that he doesn't start doing anything involved when you're going to need him to be free to deal with your baby.

atrcts Mon 09-Sep-13 15:48:44

mrsjay funny you should say about having a nanny, because I had previously spoken to an agency and tried to organise something to help me out. Unfortunately he said he would ban them from the house and I know they would not be legally allowed to enter if he did so.

His argument is that he will do it, not them. The trouble with that is some of the time he does, but sometimes he doesn't. Like today. And I don't need inconsistency unfortunately I need to be able to have a sleep.

I really don't know what to do about the situation for the best.

My DD has MS, I have found that the most misunderstood aspect of the condition is fatigue, most people think it is just tiredness rather than a complete inability to do anything because your body and brain just can't do it, and you can't 'push through it'.

Have you tried using The Spoon Theory to explain your fatigue?

mrsjay Mon 09-Sep-13 15:50:51

lovey he is controlling your situation I would perhaps at your next MS appointment speak to somebody without him there so you can tell them exactly what is going on, what age is the baby ?

atrcts Mon 09-Sep-13 15:52:20

dojo normally I try to schedule the rest. The only problem was that I became suddenly overwhelmingly tired before my physio appointment (which I knew would require some physical effort at the physio so needed to rest first).

I hadn't anticipated I would need to do that today, so it surprised me a little bit. Unfortunately that is the nature of the beast with MS.

Don't negotiate or discuss with him, just present him with a fait accompli e.g. I am going for my nap now. Then go and sleep. Its not optional. If he kicks off then tell him if he can't cope whilst you nap then he needs to get some outside help in.

I think you have to make it very clear that it is non-negotiable.

atrcts Mon 09-Sep-13 15:55:35

Baby is 12 weeks.

I will talk to the MS team again and have an appointment later in the week as it happens.

I have also told him the spoons theory, because I learned about it a couple of months ago for the first time. It makes perfect sense and so I wanted to help him to understand. He also had a period of illness himself this summer and it made sense to him at that time. But as is often the case, when somebody gets well and is back to normal, memory lapses!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now