looking for supportive community

[HouseElfWon]

i was diagnosed in 2003 although i probably have had the disease longer. I need someone to talk to about the grief and loss. my husband cannot handle my disease-not even close. this is not shade-it is what it is

[jimeka]

Hi and welcome. I hope that you find the support you are looking for, as there are a lot of loving, caring people on this forum. It is very natural for your husband to react in the way he is not only is our world turned upside down but theirs is too. I know the ms is happening to you with all the weird symptoms, but they have to watch what this ms is doing to us and they feel helpless. Some husbands or wives find ms just as hard to handle as we do. Maybe sit down and have a good face to face with your husband, tell him how you feel, then you ask him how he feels, tell him that you need to work this out together. Keep in touch and let us know how you are doing, blessings Jimeka 🤗

[HouseElfWon in reply to jimeka]

thank you so much. i very much appreciate it. we went on a trip this past weekend and out of nowhere (seemingly) he went off about how much work it is figuring stuff out with my disability-it was horrible. that hurt terribly and i am still angry about it. i really can’t depend on him for any emotional anything and yet when he has issues i listen. my goal now is to detach from all emotion having to do with the disease and him. we are fine when i don’t mention it. i feel like if i can use this forum for support i will be successful and stronger. in my profession(i am in fitness-so ironic i know) i am the cheerleader for people’s success-i guess i need a cheerleader too. that’s why I came here. 💔

[palomino27 in reply to HouseElfWon]

I went thru the same thing with my wife. Same insensitive nonsense.... I'm now divorced and by myself but I and the MS are the most stable it/I have been in a decade. I felt trapped and had no power in the relationship. She could say what she wanted or emotionally dump on me but I was not handling my disability well in her eyes I guess. Even though others said I was and am so brave even. I'm now in a power wheelchair. Although sad, I'm glad she's gone. She even tried to convince me I broke our marriage vows, which I never ever did!

I'm not saying to leave, but I am saying seek professional counseling now to help figure it out. After will be to late and just dealing with an unsolvable hurt and anger.

[HouseElfWon in reply to palomino27]

i did get a counselor!! your description is so very apt when you talk about the “insensitive nonsense “- that’s exactly what i would call it. when he said what he said it was like being kicked and i was sadly incredulous(because who says stuff like that?). the worst was not being able to talk to anyone about it. after i came here and spoke to a counselor i started to feel better.

[palomino27 in reply to HouseElfWon]

Yeah incredulous is a good word too. I just felt frozen so many times. Like in shock and is this really happening !?!? Did she actually just say that?!?!?My wife was a Ph.D in Catholic theology. I thought she would be sensitive to having a chronic illness and in pain. Instead, she used her status as a weapon convincing me I was the problem which in hindsight was just evil I believe. She's the insightful theologian teaching Catholic priests so she has the "authority" or similar. In hindsight, I was the one on the high ground.

She even had to call me ABUSIVE to keep her job. The church often fires employees who get a divorce....

I just remember the Bible verse

"The first shall be last and the last shall be first"

There will eventually be justice!

I hope you never get as far as I have and you guys can work it out.

Hope and love are a powerful thing when truly coming from both sides. It also sadly can be an incredibly sharp weapon.....

[HouseElfWon in reply to palomino27]

that’s exactly where i was - “did he actually just say that?” my reaction was rough and not at all pretty. gobsmacked may also be a good word-i could not believe it. the next thing i did (after sort of calming down)was tell him to get a triple espresso because i wasn’t going to be brought low by this. after downing that i pulled it together enough to get ready for the evening show we were going to. we met friends, had dinner and saw a great Vegas show. and i am thinking “no one else is having a problem with this”…..even though i have literally only been a member of this forum for about a day it has helped so much. i don’t feel like the Lone Ranger anymore🙂.

i think he and i will work it out now that i have a way to vent and organize my emotions.

wishing you a blessed day!

[BlanketTime1 in reply to HouseElfWon]

i'm so sorry you've all experienced this! i had a family member go off on me and he said, 'you can breathe and you can walk. it's not that bad.' WHAT?🤬 apparently he wasn't paying attention b/c i have a torso spasm that literally stops my breathing and i can't take a step without staggering.

some people are just cruel. silly me, i blamed myself, but my sister (who is generally emotionally unavailable) really helped me when she said nope, it was his problem. he was a miserable person who couldn't admit how strong i am because it made him feel small.

i can't imagine sharing a day to day life with someone who refuses to acknowledge one's struggles. i hate 'dr.' phil, but the one thing he said that makes sense to me is a serious illness affects the whole family. he's right and i get the stages of grief and all of that, but some behaviour is unacceptable.

[HouseElfWon in reply to BlanketTime1]

today is a better day and it’s in great part because of you guys! it was awful - i have taken a step back from the “event” and things are calmer. being able to say what you cannot say to anyone (without doing damage) is extremely healing. moving forward from here i no longer accept that which is unacceptable.

you guys rock!!!!!!

[Sandydemop in reply to HouseElfWon]

you deserve many cheer leaders

[HouseElfWon in reply to Sandydemop]

awwwww thanks🙂! as do you and everyone here 🙂yay us!!!

[Sandydemop in reply to HouseElfWon]

thanks for responding so quickly!

[fufono]

I hope you can find support and companionship from me and this forum

[HouseElfWon in reply to fufono]

thank you so much-i think it’s really going to help to be able to vent about the particular issue i have. i have literally never have spoken about it to anyone because i didn’t want anyone to judge my husband. he’s a good good man but he cannot handle what’s going on with this disease-not even a little and I have tried. so i came here because i need to accept him as he is and do this emotional thing by myself. it’s like going to a vending machine and wanting a product that isn’t in there…..

[Kenu]

Guy’s are more app to not be good caretakers than women. Guy’s emotions are quite different to women’s and need to be told what is going on, sometimes we are a little slow 🤪 Although I do know several guy’s that do really well at caregivers. This is a great place to vent as we all live with a lot of the same problems. If it’s more personal you can also private message someone. Welcome and hope you can receive the support you need 👍🙏😉🤗Ken🐾🐾🐕‍🦺🐩

[Raingrrl]

Hello! I was diagnosed in 1999 and probably was blissfully ignorant of having MS for 10 years prior.

I can’t imagine having a partner that isn’t understanding and supportive that long after diagnosis. There are others here that are having similar experiences so hopefully they will chime in. My divorce was final 3 months before the symptoms that lead to diagnosis appeared. I don’t think this is a coincidence and my own anecdotal proof that heavy-duty stress can be an MS trigger. My concern for you is that it has to be stressful not having a supportive partner so whatever you can do to minimize that will be beneficial.

It’s awesome that your career is in fitness! There are more and more peer reviewed studies showing that MSer’s need to keep moving as much as possible to stave off deterioration both mentally and physically.

[HouseElfWon in reply to Raingrrl]

i think the stress has been immense just in general and i have been in a constant state of agitation which of course triggers not so good stuff with the MS. i am grateful to be part of this forum which has been a great help already…..i feel like nobody gets it like people who’ve got it. 💞

[Raingrrl in reply to HouseElfWon]

Absolutely! It’s fatiguing just trying to explain to a non-MS’er what it’s like. I try to stay out of those convos because of that. Stress, particularly emotional stress, has always been my kryptonite and can trigger a pseudo-exacerbation. So annoying!!

[JSSimp]

I will keep you all in prayer

[Brindisi1]

Is there MS support group for families in your area. Call national ms society. Does this group have?

In sickness & health .....difficult for both. Prayers

[palomino27]

This forum is great and very supportive but at the least I would seek out profession counseling as well. If your husband will attend I'd do couples counseling as well but from my experience I'd get a good personal counselor first. It's worth the money and time

[HouseElfWon in reply to palomino27]

good morning!this forum looks amazing and i’m so glad i came here🙂

i actually got a counselor yesterday and it helped a lot. just to be able to vocalize what i was feeling without worrying about the result was very calming. wishing you a wonderful day

[palomino27 in reply to HouseElfWon]

You are very wise🙂

[Amore55]

I do totally understand what you are experiencing. I went through a similar experience. I was diagnosed in 2006, but probably had symptoms since 1990. My husband was supportive at first, then got “tired” of it. He is a really good person, but just could not handle ms anymore. Long story short, we divorced, I have been single for three years. I am doing great. I would rather be single than with someone who said, “you have a pretty easy life!”. Imagine with ms! So, take care of yourself, be as kind as you can be, but also remember that he must do his part in the marriage. I look forward to getting to know you!

[HouseElfWon in reply to Amore55]

my husband is a good person-he’s just not good at this. not yet. i am hoping that as i calm down from being so hurt he will kind of get what’s going on and not be so combative. the last fights came out nowhere and i’m all what the hell just happened! to be fair he’s got a lot of family stuff to deal with and my stuff(which isn’t all that much actually) is just one more thing. I think this is the coolest forum ever and I look forward to getting to know you too! wishing you a very pleasant evening🙂

[mrsmike9]

Welcome! I know there are others in this group who are struggling with no help, sympathy, etc. They know exactly what you're going through. Feel free to share anything and you will be supported here.

[HouseElfWon in reply to mrsmike9]

thank you so much -i am already so much calmer than yesterday morning🙂

[BlanketTime1 in reply to HouseElfWon]

🤗it's wonderful how that works, huh?😀

[HouseElfWon in reply to BlanketTime1]

truly-i no longer feel like exploding 🤗

[twooldcrows]

so sorry that he is not supportive but it is hard to be the caretaker .lots of us have been in some of the same thing but can also be harder ...stress is really bad for living with any disease but i know that is does affect the MS ...we have had our problems also...it is hard but you have to do what is best for you and that is something you do have to remember is what is good for you ...talk to your doctor and see what she can do or help in this situation for she does probably knows you enough to see if and what is going on ...prayers to get through all of this ...i know it is hard ...love and much happiness....many prayers to help you ....

[HouseElfWon in reply to twooldcrows]

it’s already better. i just needed an outlet so I could stop hurting -y’all are wonderful. i know it’s hard on him-he’s got a lot of other family things to deal with and i (and not in a mean way) am kind of low down on the list because I have to be( I’m not bitter about it-they are my family)his mother is 82 and raising her 2 great grandchildren-so there’s that. he’s stays with them and I see him every other weekend. I manage fairly well-the stress has wreaked havoc on the MS however i am not feeling so destroyed anymore…..

[wolfmom21fl]

Hi, Welcome to the group! I am going to tell you that some people (partners) often suffer from what I call WAM (What About Me). I was in a long term relationship prior to being Dx'd and I have to say that I would rather be alone than having to listen to drivel about "what about MY needs?" or "When will I get taken care of?" I got so sick of hearing it I wanted to vomit. And I had not been diagnosed yet. I can only imagine how it would be now. Yes, I was in therapy because, OBVIOUSLY, I had a problem... LOL. Working 45 hours a week in the heat in Florida and not wanting to do anything except shower and relax at 8:30 pm when i got home from work was a total issue. I am sorry you are going thru this with your husband. I hope things get better now that you have an outlet. Welcome to the group and feel free to share what you need to!

[HouseElfWon in reply to wolfmom21fl]

i never really had an outlet before…..i am so happy I found you guys. just knowing there’s a healing place I can go to vent without be accused of over-reacting is calming.i think my husband does have some of that WAM. I also think that things will be better now that i can say how I’m feeling without starting a war.

thank you guys so much❤️

[mm1527mm]

Welcome this group is great

[HouseElfWon in reply to mm1527mm]

I think so🙂ty!

[BlanketTime1]

welcome. you are in the right place. i've learned a lot here, shared and connected and every day someone makes me laugh.🤗

[lbenmaor]

You have found the right place.Our group is very caring and extremely supportive.I look forwrd to speaking with you.

Leslie

[HouseElfWon in reply to lbenmaor]

this group is amazing! it def brings the calm and after being in a constant state of agitation that is the healthiest thing ever….

[Sandydemop]

It's funny how so many of us relate to your issue. My husband doesn't get it either and definitely wants more attention. Even started limping for no particular reason! I just can't take care of his emotional needs all-the-time. I admire those of you who divorced. I'm too scared to try to make it on my own. thanks for listening to my big secret. ( sigh) 😳

[HouseElfWon in reply to Sandydemop]

i think if i am calmer he will start to “get it”. this past year has been very hard(there have been good times but the lows have been very low). I think if I am calmer the MS may settle down a little. being in a constant state of agitation was helping nothing.sharing secrets also is so helpful-i find saying what needs to be said is healing. even if the person who needs to hear it is not there to hear it-maybe one day they will be.

❤️

[Sandydemop]

Thanks HouseElfWon for the validation. I may have to start a post about this

[HouseElfWon]

the whole disease is kind of a secret for those who don’t have it and defies explanation-even to us🙂sometimes.writing it out has helped so much. i look forward to seeing your post🌻