This Is MS Multiple Sclerosis Community: Knowledge & Support

I don't know what to do> Guess I am just reaching out to see if anyone else has had similar experiences. I have a boyfriend who is so supportive in terms of doing things for me. He does the cooking, shopping, takes care of the house. His support allows me to focus on my job and finishing my degree. I do a lot, despite weakness, fatigue, and limited walking ability. I work full time, take two night classes per week, and commute at least 110 km a day. I am very, very busy. I can only do all of this because of my bf.

However, while he does all of this, he seems very resentful. He cannot name one single thing he likes about being with me. Instead he tells me how frustrated he is that he has to do everything for me. I ask what he wants me to do, and he can't come up with anything. I don't know what to do. He seems to have no respect for me. When I stay in and study all weekend, he seems irritated that I am "laying around". He never actually calls me lazy, but I get the distinct impression that he thinks I am. I am just trying to concentrate on things I can still do well, like studying or reading, or organizing bills, or anything I can do online. I do my best to maximize my usefulness in these ways, rather than wearing myself out with physical tasks.

I know he does an awful lot, I pay a cleaning person to come once a week, and I often suggest that we order in rather than him cooking, but he is insistent about doing things, and then annoyed at me, if for example I expect to be able to have a meaningful conversation about anything. He takes it as disrespectful if I speak when he doesn't feel like talking (which is always, for certain subjects) I generally try to avoid discussing MS and how it affects me, because I sense he doesn't want to talk about it. If I talk about fatigue, he gets irritated because he has a physical job and says that I think he will never be as tired as me. I have said many times that I don't think that.

I feel like this constant tension is probably worse for me than not having someone do things for me. Honestly, he constantly compares me to a child who he has to pick up after. Its humiliating to feel so dependent on another person. Especially someone who thinks you are selfish and helpless.

Has anyone else been through this? I feel totally misunderstood all of the time, and when I try to talk to him about it, it leads to a fight. As soon as I bring up the subject, he says "oh, I see you want to fight" and there is nothing I can say or do to make him understand that I just want to talk about the situation.

I guess maybe this is just regular relationship problems, but it seems to focus almost entirely on my dependance on him. I feel like, if I just had the energy to do more around the house, than things would be better. Its just that I can't do that AND everything else, and I would rather focus on earning a living, even if it means letting the house be messy. I just can't do the superman thing that many people do. He works 60 hours a week and comes home and does stuff around the house, I just can't do that. Instead I work 50 hours a week and then come home and do homework. That doesn't require walking,standing, or balance.

Has anyone else been through this?? All I have is healthy friends who just don't understand, so I don't talk to them about these things. I feel so alone.

I don't know the answer, so I can't really help save to say that I understand.

My boyfriend of 4 years clearly doesn't want to live with me because he can't handle being around the MS and me for long.
He's constantly frustrated at me if I can't do things and acts like i'm being lazy, when i'm fighting both MS and severe CFS.
I next to never mention the MS or being ill at all any more, he just stops talking and excuses himself. Makes me feel guilty.
It results in me avoiding seeing him when i'm at my worst and the rest of the time i'm putting on some faux super chirpy persona. See him maybe 4 days out of a month at present because the feeling of being shunned and misjudged if I dare let myself be ill at all (how it feels) had just become ridiculous.

It's obvious he wishes I was me, but healthy and capable. He just can't handle the illness... as if I can! hah.

Like I say, I understand and I understand how hard it can be for a partner, but can't help, so HUGGGGG xoxo

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Thank you sooo much for the response! Its comforting to know that there is someone else going through something similar

Hi mandamurr81,
I'm not sure what to say about your relationship issues. It sounds like a very difficult and unhealthy situation that is causing a lot of stress.

On another note, your link is currently pointing towards a spam fake search page. I believe the ending should be .com rather than .ca, the .com leads to the correct page.

NHE

I think in your case it's part normal reaction, part normal man, part frustration on his part and mixed with the ever present guilt and frustration most of us feel that other people have to do things for us. It's a bit of a melting pot really, and with an illness that very often continually fluctuates and changes, it's hard to feel stable or independent.
I think undeniably a lot of men find it very hard being a partner to someone with an illness like this. They tend to be pro-active, and 'doers' - so when they can't fix something they feel a bit lost and err... impotent in a way. I mean men do like to be useful and relied upon in certain ways, they are generally seen as their partner's protector, but with things like this it throws their male role and ability to problem solve and logicise out the window a bit.

Their frustration can come out in ways they don't intend it to, and like you, I find being talked down to is one of them! The resentful, thing, eesh, I know what you mean - it's hard to see when you're the dependent where it turns from ok to too much

Be interesting to know if the same problems occur when the genders are reversed...

_________________
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.

Hello mandamurr81:

I am brand new to the community. For the most part it was your statements that made me want to reach out. So here I am.

First, I wish to inform you it is not I that is challenged with MS. I am a Care Provider. In fact I'd like to restate that and say "A Loving Care Provider." I've cared for both my dear wife and wonderful daughter, both with Multiple Sclerosis. I know it is hard for you to experience your relationship as you've described. I hope you will understand also that Care Providers do experience much that does have a profound effect on them. None-the-less, there are Care Giver alliances and support groups that can help them/him to live with less stress.
I have recently finised a non-fiction entitled "To Be Loved" based on my actual life as a care provider loving a fabulous woman and marvelous daughter. Many changes has occurred since my beginning as a care provider. My wife passed in 2010 and my daughter is progressing more and more into Secondary Progressive. I'd like to share with you an excerpt from a page in my book. Most of all the one line stating "Care Provider is not a natural transition that all people have the resolve to endure."

My unending endeavor to provide, care and love my daughter with as best a father’s responsibility I could give in her life prepped me for the greatest task ever I could ever imagine would come to me. In addition I was introduced to an even deeper part of myself that I was not cognizant of or could exist. Embarking upon the undertaking and responsibilities of a Care Provider is not a natural transition that all people have the resolve to endure. After all is said and done, Heaven’s marvels and infinite authority designed my purpose in life to love and care for my daughter and wife, bound to live their lives dependent on someone strong and noble. Above all these beautiful women deserves TO BE LOVED.

I share this only to encourage and enlighten. Hoping the best for you and your boyfriend.

To be able to care for someone, who relies on you so much, is such a difficult job.

To the OP: I want to ask you something. If you did not have MS, would you still be with this person? Would they resent you if you didn't have "an excuse"? Could he just be having a hard time accepting your new limitations, and maybe needs someone to talk to?

I ask this because my husband reacted this way before my MS really affected my ability to contribute equally. I did everything around the house, worked full time, and took care of our young daughter, and he still found things to complain about. In time I realized that I was not the one with the problem, and left him.

I am now with a man who understands my MS like no other. His mother passed away from MS, and so he saw how rapidly she deteriorated, and how much help she needed. Her husband (his dad) did everything for her, with love. They tell me that taking up horse-back riding gave her the strength to endure 10 years when she had a 6 month prognosis, but I don't think it is the whole story. I'm sure the love and devotion of her wonderful husband, and the support of her children is what carried her through those "extra" 10 years. She was blessed to have them in her life. And more, through his compassion, the wonderful rolemodel her husband as taught their son (my BF) the same. I have a man with the same ability to love me, understand my MS , and my fierce need to remain as independant as possible, and contribute in whatever way I can. It doesn't work perfectly, but I am the happiest I have ever been, despite the progression of MS.

i too am new to this community and can relate to the example being talked about.I have been married for 30 years this year and have had a lot of anger and resentment towards me because of my illness over the past couple of years,I don't know what I can do to help my wife accept I have MS and the limitations it poses. I have spent a couple of weeks to a month away from home over the last year ( at my brothers)to help her have some time and space to herself . She can cope with everything necessary when I am not there , but finds it makes her angry and resentful when I am , when she has to carry out the chores . I have not found the answer yet but am still looking!!

These are really difficult issues to deal with.

When we were young, we all had idealistic views about romance which certainly didn't involve one partner developing a serious disease and losing independence. No matter how loving a caretaker is, there is always a tendency towards "caretaker burnout" where caretakers can subconsciously resent or even overtly hate those they care for due to the lifestyle changes and stress which occur.

Most people recommend taking proactive actions to reduce caretaker burnout

Here are some caretaker suggestions from Dr. Laura's blog:


"You burn out as a caretaker when you’re trying to take on all the responsibilities of caregiving on your own. You’re not taking breaks or getting assistance. And it’s really tough to yank yourself back from a burnout.

So, when you start feeling the symptoms, it’s time to take some action and get more help. You need to find somebody to take care of the paperwork and the yard, or find someone to come over and cook. You need to bring in other people. Whether they’re volunteers, paid helpers, family, or friends taking turns, you’re going to need help. If you try to take it all on yourself, you’ll make yourself emotionally and physically sick, and you won’t even be at your best for the person you’re trying to help."

source: http://www.drlaurablog.com/2012/05/16/c ... r-burnout/

I would also recommend the book "Multiple Sclerosis" (Kalb, 5th edition) which has a large section on family issues.

Here is a quote from the book with a question and answer:

"I've started to feel more like a caregiver than a husband. I am committed to my wife, and have no wish to leave her, but I really miss the companion who shared so much with me. How do other people cope with the loneliness and loss of companionship?

The feelings of loss your are describing are particularly common for couples wo have always shared many interests and activities but now increasingly spend time simply managing the consequences of MS. In the same way you have partnered each other in other aspects of your life, try to become partners in the management of MS. An important goal of this partnership is to be able to communicate effectively about ways to integrate MS-related care activities into your lives in such a way that there is still time and energy left for other enjoyable activities. This will help both of your to feel that you are managing the MS rather than the other way around. It will also help you regain your feelings of togetherness so that each feels less alone with the burdens imposed by the disease. Discussing your concerns at a couples' support group could benefit you and your wife in several ways: you will be reassured to learn that other couples are living with, and finding solutions to, the kinds of stresses and strains your are describing. The group can brainstorm together on ways to solve commonly shared problems and find substitute activities for those that you can no longer do because of the MS. You may also find that the group becomes a social outlet as well."


It sounds like you and your boyfriend have a big problem with communication, so you should try to address this with him or even consider some sort of counseling/therapy. You may have to consider adjusting your schedules so that you are both not so busy, leaving limited time for taking care of the home and spending time together

Best of luck.