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hurting and having to justify how I feel!!

I’ve been having a horrible day my head feels like it has a bowl of soup sloshing around inside it. I’m wobbly and experiencing pains in my upper arms and in my upper legs. I’m unable to hold a conversation properly. I had a dreadful night too. I’ve spent the day in bed, just can’t stay upright. My husband just doesn’t get it and suggests a whole host of things that might be the problem!!! My sister visited earlier knowing I was having a bad day and asked “What’s the matter, have you got a migraine?” I could scream… NO I HAVE MS and I’m hurting and feeling really ill. My sister is a nurse and for some reason just doesn’t seem able to take on board that I have MS and the fact that I “don’t present like any of the other people she knows with the same disease”. Why can’t they just be empathic and accept that I’m struggling today. So sorry to whinge like this,but I could just howl.

I know it’s hard but it’s just their way of coping. My husband is always saying, well that’s not the MS, you’ve always been like that. My daughter and I laugh about it, amazingly a 16yr old understands! It sounds like fatigue, I get a sloshy head when I’m over tired. Just try and rest and know they love you and mean well.

Thank you x

(((Hugs))). Unfortunately, men like to try and identify problems that they can solve, such as, their wife feels ill, it is because of this cause and taking that medicine will make her feel better. It’s how most of them are built but it’s really frustrating when you know that there isn’t a simple solution for the way you feel. Your husband is trying to be helpful but if you are like me, it doesn’t help, it just irritates. Sit him down and explain as calmly as you know why you don’t feel well, it’s your MS, and him suggesting other causes doesn’t help. Then tell him what he could do that would help - fetch you a drink, put a load of laundry on, cook or whatever.

I know my husband feels helpless when I can’t explain why I’m upset or in what way I don’t feel right, but he has learned that all he can do is acknowledge it, he can’t solve it and attempts to do so don’t work.

As for your sister, she should know that MS is very individual and that no two patients have exactly the same experiences of the disease! If she were my sister she’d have had her head bitten off by now (one of my colleagues doesn’t “get” MS at all, he’s completely oblivious to the fact that I can’t walk as far as he can, stand as long as he can etc - he’s been growled at a few times about it but I doubt I’ll ever get him to understand).

Thank you for your thoughtful response, I understand what you’re saying. I have done, on a number of occasions, what you have suggested the ‘sit down and explain’. To date this sadly hasn’t worked and it’s so hard when struggling to have to go through it all again when all your energy is occupied in trying to cope. I know I get irritable. My husband will make a cup of tea and when he’s hungry might put some food together. He never voluntarily looks at housework of any description (I’m not sure many men do) just expects the house fairy to come in and see to it. At the moment every three or four days she feels up to doing a bit than has to take time out to recover!

Six years after a diagnosis that suggested I’d had the disease for more than 20 years my sister, who I know does love and care for me remains in denial. There is little one can do to address that.

The MS Society produce a range of publications on different aspects of MS. One of them is aimed at explaining it to partners and family - have you got that? Has your husband read it? If he hasn’t, it may be worth getting a copy - they’re on the website or you can order print copies to be sent to you.

Other than that, I don’t know what to suggest as my husband has always been very good about doing cooking and laundry and other housework that we agree is important. He is also well aware that if he doesn’t like the way I do (or don’t do) things, he’s welcome to do better himself!

(((Hugs)))

I’m really glad for you that your husband is supportive. I know it’s a tough role when in essence with regard to the illness itself, there is not really anything anyone else can do. My husband is a bit of an ostrich so reading up information is not in his remit! If he doesn’t look, it will go away and that applies to a lot of things not just me and this illness. I think it is a coping strategy for him in reality, odd though that may sound

I’m feeling a little more positive today thanks to people like you. It makes such a difference. My physical symptoms are much the same, hey ho think it’s the onset of a relapse but the day is cooler and the birds are singing :slight_smile: