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Relationships with ms

Hi how do you get over relationship problems with ms I'm married with two young children but find I feel so guilty if I need a nap or struggle to do something. I get the feeling my wife is just taking the uff and thinking I'm lazy and it's starting to get to me.



Hi @scottevans. For sure, lassitude is tough on you and one’s support network. I find reminding myself and others (occasionally), about how my brain and body is working overtime to accomplish even basic things, is a good refresher when post diagnosis understanding has waned. Rest is critical to your well being and enables you to help when you are able. Keep those lines of communication open!



I'm jumping on this thread for some advice too. I have 3 young children, I work part-time, I am the primary care-giver and house-runner, and main earner in my marriage. Its all far too much to cope with since being diagnosed. However, I am having a very hard time trying to get my husband to understand this and that I need him to do more (not because I am being difficult or trying to take away his options, but because I actually can't cope). Added to this, I have Asperger's so I can explain exactly what I need but it apparently comes across wrong (as in abrupt or rude). I genuinely try my best, but I am really struggling and the stress and exhaustion make the Asperger's side of things worse. I find "normal" social interaction to be utterly draining and if I spend my energy on that I won't be able to do anything else. I don't really know how to get my husband to understand that circumstances dictate that he has to cut back on his own comittments to work (this would be easy as he runs his own business and could simply choose to take on fewer clients - there's no financial risk as I'm the main earner) so that he can do more of the other things in our lives with family and home. Any advice on how to address this diplomatically but still get the message across would be amazing. Thanks.



Hi Scott, I know exactly how you feel. I am a mother of 6 and I never get to rest because my husband works a lot some days I can barely move and I think he thinks I'm trying not to do anything but that's not the case. I just don't feel well. Its hard to go out in public.I just wish he understood. I just don't feel good



Oh wow! If there was only an easy answer to these concerns. And, I'm not going to be the best to talk as my marriage has now descended into two people sharing a house and we seem to be becoming further detached as I wait, hope beyond hope, for my health to improve. But, I have been married 35 years now, so we both reluctantly accept the status quo and, from time to time, let our frustrations show. And, my wife is an absolute gem, having picked up the slack, where my capabilities have deteriorated. But, as @mhworden says, communication is key. The conundrum is how do you make someone understand something that you have trouble understanding yourself. Relationships are difficult enough to maintain at the best of times, but throwing in the MS-bomb is like having an affair, but without the excitement and enjoyment! We just have to try and communicate, even though our partners do not want to get that close to MS. And, who can blame them. My wife wants to remain a wife, not become my carer. And, that coming from a nurse too. But, I do understand her point of view. In the main, we have to grin and bear it. And, try and make the best out of a bad job. What other choice is there. I have learnt to do what I can, when I can and if I can't, then I just can't. I can get away, if that's the term, with this attitude as I'm male. And, I realise that life is very unfair to the fairer sex. We just have to try and communicate and educate.............



Hi all I'm really glad I've posted this as I thought it was just me not doing things as I should thanks for helping convince me that it's not just me I've worked all my life and provided for my family and now I have finished my wife's decided to finish so not only I'm fighting this dreadful illness I'm worried about our finacial future I just can't make any sense of things at the minute.



Scott, Your profile shows "come to terms with a life 100mph to 0mph"... Methinks your perception is part of the challenge. If you were at 0mph, you would probably be 6 feet under... ;-) The reality is that MS affects us in different ways. I went from living with six hours of sleep to 10 hours a night. And when I am awake my full speed is less than 1/2 of what it used to be. But what energy I have, I devote to my wife; she knows she is always #1 in my mind & in my heart. Whatever she wants (within reason); she gets... So far she is 100% on my side. Hope that continues...



@Scott Evans - I am no longer in my marriage of almost 30 yrs - but I can so relate! I was always the 100mph kind of gal, and was called the energizer bunny by neighbors. Having to suddenly lie down and stay there was devastating. At first I had several days when I couldn't do anything - then I'd bounce back. A few weeks later - bam - back down. It was devastating to me. I didn't have a dx yet, but had another autoimmune disease to blame it on. But with 2 young kids, a yard and home to maintain, plus my own design business - I just didn't know how to keep up. The hardest was losing my own perception of who I was. THAT is what you have to fix. Who you are needs to be something more internal - your character, your beliefs and convictions. People perceive those things - regardless of how industrious you are. I hope you can come to accept the new you - and realize you're just as valuable as ever. I think it can take time though. It's not always easy. Some frIendships can be tested too, but that's ok. You will come out the other side - hopefully stronger and wiser, and more self assured. Be kind to yourself - give yourself grace. And thanks for sharing your experience with us. Blessings! Jan



Hi Jan thankyou for your message I am starting to think your correct, in a different me and my attitude is starting to develop for the better and thinking that the attidude of others could well be somthing that may be a big factor in this I can't do everything for everyone else like I used to and be as generous but my love is still the same for everyone and that's all I want them to realise.



Hi Scott - can appreciate this, as MS can make us feel guilty about not feeling up to life's daily challenges but we have to put ourselves first at times and something I'm not very good at either and like to battle on. My Mrs is 1st class but her family can be a bit like, work is the answer to everything - her mum and dad are both still working at 70 and money and work is all they talk about whereas a diagnosis of MS has made me want to enjoy life..and realise that I need to take things easy when MS creeps up on me.



Wow very much alike my dad worked for me until he was 72 and both him and my mum are exactly the same I keep trying to tell him that you can't take money with you and he should enjoy it. And yes other relatives are very simular to your experience I think it's just they really don't understand the illness as with millions of others in the world including the Pip medical assessors 😶



Hi Scott It is a very difficult subject indeed, I have been through exactly what you and many people describe, the guilt, feeling lazy etc. I know we are all different, seven years after dx I was still doing 14.5 hour night shifts being self employed, still doing the garden, housework etc. Warned so many times by the MS Team to stop it, but I felt I had to do it for my family and for myself, to keep going and not be beaten, how wrong did I get that one!!! 18 months ago I reached secondary progressive stage, packed up work as strongly advised. Now I'm about to move into a studio flat as my battery has given up, not any use to my family or myself anymore, I now have to go back to bed after having a shower! Everybody including my Rehab Consultant were telling me I have to become more selfish, easier said than done, but now its too late, I get it! Don't be feeling bad about having that rest anymore! Take good care Nibs



@nibs so sorry to hear your story but thank you for sharing. Hug to you