I have had my diagnosis for about 2 1/2 years now. I had some new lesions last year and struggle the most with fatigue, anxiety, balance, bowel/ bladder issues and numbness in my left side. I have been married 14 years. I work FT plus have a 5 year old and 12 year old that keep us busy.
There are no support groups near me or my husband. I know he tries to understand but I always feel like he doesn't get it and has unreal expectations of me. He has asked me to walk with him or exercise but when I get home from work and then deal with the kids, I feel like I could sleep a week. I feel he thinks I am lazy but know that is not true deep down. He just has no idea how this feels. I also don't tell him every symptom because some are embarrassing.
He always still "wants" me but I am so tired!!! Then I start resenting him like sure let me take care of you too. And I love him and he does SO much to help around the house and with the kids, I really couldn't ask for more. So I always feel guilty and useless. I start thinking he should leave and get someone that can keep up with him in life. I don't know how to change how I am feeling and worry it will be the end of us. What is wrong with me???
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Mcoryea
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It is hard to explain to your significant other what is going on with you 🤷🏼♂️. Get with MSAA and get free information for your husband to read, that might help. Also there are audio on line seminars and meetings to listen to. It’s really hard to explain how this is effects our life when we look healthy. Take him to your doctor appointment and have the doctor explain it 🤷🏼♂️. Just some ideas 💡. Hang in there and stay positive 👍🙏🐾Ken
Kenu great response. I printed information and read it to my hubby, then left it for him to read on his own. I am blessed that we have pretty darn good communication between ourselves. We were both married before and waited years getting to know each other and "Communicating!" Then surprised everyone and eloped!
Has your husband gone with you to your appointment with your neurologist so that he can see what you are going through. My husband when he found out he went to a book store and bought Four books on MS they were for me and him. When I found out I had MS I had to have a spinal tap I asked the doctor to show him my MRI so that he could see what was going on in my brain. It help him realize what was going on with me.
Just talk with him so he knows how you feel nd let him open up to how he feels.
I have oft had those same thoughts, but luckily don't share them with him! His comment is always the same: when I said that I wanted to pick us up and move us several thousand miles south, away from friends and family, to take my dream job, you said "whither thou goest, I go as well". Well, right back at you! If the fates have decided to send you on this rickety path, I'm right behind you, catching you when you fall.
You’ve already read the great responses, but I’ll just add that we understand well what you’re going through. I come here for understanding and support, knowing that my family can only understand just so much.
Your husband is dealing with MS, too, but from a different perspective. He still has at least as many needs, and I hope you can both stay strong as a team to deal with this new challenge together.
Do take a look at what MSAA has to offer. Do come and vent when you need to.
"What is wrong with me???" YOU HAVE MS!!! don't blame yourself, you did not ask for this. You had nothing to do with getting it. You will have to become your own "best friend" and treat yourself with the respect and knowledge of who you are. This MS takes a toll on all of use and effects all aspects of our lives and those of our loved ones and friends. You have to become strong with yourself. You are worth it. You have support and friendship here. Others have expressed some ways to assist your husband to try to understand the "new" you. You have changed but not by choice, you have to adjust and so does your husband, and you will have to teach him. Be open and honest with him, he will understand. I wish you the best on your new journey you're forced to take. I send you my blessings. Be good to yourself
My husband was insulted when I suggested he might want to leave after my diagnosis which happened less than three years after getting married. I told him I knew he didn’t sign on for what this roller coaster might bring and I wouldn’t think badly of him if he decided he needed to leave. I told him if he was going to, he needed to do it now as I didn’t want him to determine years later and leave as I was really needing his support.
He informed me we were at the same wedding and he had promised for better or for worse and he was in it for the long haul.
Yes, I feel guilty on the many days I can’t walk with him outside or have to choose what I do carefully so I can do what needs to be done or my energy levels are non-existing.
Fast forward 23 years (we just celebrated our 26th anniversary last month) and we’re somehow making it still work. We don’t have children as I decided I didn’t want my children to have to become care givers and adoption would have the same end result. (My MS came on with aggressive symptoms- so, I was first considered PPMS before they relaxed it to be RRMS.)
We enjoy being an aunt and uncle but know we made the right decision for us concerning having a family.
One way I explained things to my husband was the “spoon method.” I wake up with x number of spoons and have to make them stretch through the entire day. Some days, it takes one spoon to just get dressed- other days, it takes three!
He’s started asking how many spoons I have left for the day or how many spoons will it take to do a certain activity. It’s helped us verbalize the whole energy issue that comes with MS. I still feel guilty I can’t do it all, but this has helped.
Just recently, my husband had to take a round of steroids for an arm injury. He didn’t tell me but he forgot a dose and the next day he said he just felt really crummy. I finally put two and two together and discovered he had a huge energy drop - and, once he got back on the meds as he should be it sorted itself out.
He recently told me now he has a better idea of how I felt prior to the ABC meds being available and I was having monthly IVs of solumedrol and would have these energy drops as my body reacted to the infusions.
I guess even after all these years, we still are learning about this crazy condition and how it impacts not only my life but the lives of those around me.
Please try to not feel guilty. I know, I know- it’s really tough and I struggle with it daily too. But, try the spoon thing or a chart with the children to show them the energy you have and how much you have to take out of your energy bank to havevas normal of a day as possible. Sometimes, these visuals or a jar or spoons on the counter as a reminder help make it easier to visualize something that is difficult to quantitate or invisible.
Aw, thanks! I’ve got a group of friends with various illnesses and we call ourselves “spoonies” because we all have this fatigue thing. I cannot even begin to take credit for coming up with the concept. I read about it years ago from another who has MS and it just seemed a good way to explain to others about expectations and fatigue.
( My name is Georgia- my GreatGrandmother’s name. Georgia and George are used quite a bit in our family- we recycle it at least one if not more every generation. When I was much younger, my Daddy used to call me ”Junebug” as a nickname. So, now you know the history about my username!)
If he goes, I’m done. It’s too much, and I think I’m very functional right now. For my family, they have really understood once they have seen me suffer. When you smile and adapt all the time, it’s hard for them to know something is up with you. They will never fully understand, but they totally get that.
When I worked and there was no kid, I had to shorten my hours and take a nap at 4pm just to be functional in the evening. We hired a cleaning service, which I was opposed to at first, but it’s been a huge help and worth every penny. I don’t have to spend 6hrs doing what they can do in 45 minutes. I still clean the house, but it’s not a monumental task now because it’s mostly upkeep/shorter tasks.
When the fatigue set in after delivering, and I couldn’t play with my baby anymore, I told my neuro and she gave me a med for it and it helped some. Sometimes I felt guilty and useless, but that’s more about me than him.
I can’t reply and not mention that after a few weeks on the keto diet, my energy level soared and I no longer feel like the cogfog idiot I was. I feel like I’m able to be the wife and mother I want to be now and that in itself has resolved the uselessness guilt. I still need him to tote stuff (and babies) up the stairs at night when my legs hurt the worst, but I just ask and it’s not a big deal for either of us.
I hope you are able to tweak something in your schedule that will conserve your energy, and I really believe just having a little more oomph in your day will stop this mental downward spiral. Your husband sounds pretty awesome!
Thank you! Yes my neuro suggested cutting hours at work and thankfully my work is awesome as well and totally supportive. You made a good point- I know I always try my best to seem “fine” so I know its hard for my family and work to really know how I am feeling. My supervisor said I always seem fine and do such a good job that she forgets I could be having issues. I never want to seem like I am whining or a downer all the time. I need to work on being upfront and honest with them so they can maybe understand a little more.
It’s so easy to be a superhero when it’s you! But it’s a trap, because when you are forced to give up and ask for help or cancel plans or hide and cry about how spent and awful you feel ...those evil uselessness thoughts and guilty feelings take over and none of them are true! I try to stay alert to my red flags now so I can beat the storm by doing some self matienence, or heaven forbid I ask for help or admit my needs (weaknesses). I’m the WORST though, I’m sure you are less stubborn. I’d like to stay married too 😍
Sometimes MS does things to our minds, and thinking things like you do today, might not be the same next week! Don't make any hasty decisions. I ended up divorcing the best thing that ever happened to me. Because my thought process was really messed up! I do blame My Self, and MS! If you're husband really loves you, he's not going anywhere. Please don't push him away, because of what you THINK that's what he wants. Hang in there, and try to think of the happy times before you were "blessed" with this crappy disease!
Thank you. Yes I always say what I think he should want to di and find myself pushing him away so I wont get hurt later. I really know its more me and that I need to change.
You have MS. I thought for many years my husband and son would be better off without me and my constant illness. Most people with MS could not take care of 2 AND work full time. Your husband needs to be educated about the amount of energy it would take for a healthy woman to do both jobs and still be in the mood to take care of his needs
I'm not married but I feel the same way with my boyfriend the exact same way everything you said is the exact same way I feel. I feel like why would he want to be with me cuz I'm sick. And the only difference is that he does understand about the MS kind of not all the way but most of it but I still feel like I'm not good enough. Even with my kids I feel like a bad mom too because I can't be the mom they want I can't stand that long or anything. Sorry getting emotional writing this
G'day lots to read so, of course, I am not going it all, Just for the sake of repeating what everybody I am sure has said, TALK to your husband and let him do most of the talking, what are his fears, hopes dreams how do the sit with you? Perhaps suggesting that he sent a note here to ms, Blokes only. I am sure some bloke here can give him a little support. Either way good luck and remember to always protect "YOU".
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