Getting over the guilt

[ms382012]

I know that I'm sick, but I still feel guilty about the housework and job related tasks that don't get done. I don't keep up wit as much of the research, for example, or make,the new materials I promised I would get to. I'm not sure how much longer I can keep,up this pace as my home life is already suffering.

And my son is constantly saying he feels bad or he has to rest. I don't want him doing that following my example. He seems perfectly fine and hyperactive, but I think it just hit me today how much he sees me sitting around and asking him to get things for me. Does he think this is the way to live, that all adults do this! My mom has untreated fibromyalgia (she refuses to get help or take meds) and she talks about being tired all the time too. So, is it just a matter of acceptance?

[Jules A]

I think it is very difficult to find the delicate balance between being honest about what MS is doing to our body and attempting to create a secure environment for the loved ones who count on us, especially if there are children involved. It would concern me that a young child is presenting with vague somatic complaints especially if you think they are related to your diagnosis.

This is a great topic and I'm interested to see what others think.

[MSer102]

So, is it just a matter of acceptance?

It depends on what you mean by "acceptance".

If you think it means sitting around thinking and talking about how bad you feel and convincing yourself that you are just a helpless victim and that all this badness is how it's going to be so why bother, then the answer is definitely NO!

If you think that acceptance means recognizing the reality of the situation and taking responsibility for yourself and your loved ones, and setting up a routine that allows you to accomplish what you need to do in the best way possible and make the most of your blessings and be the best person you can be in spite of the limitations imposed on you by MS, then the answer is definitely YES!

So now for some tough love from a veteran MSer.

And my son is constantly saying he feels bad or he has to rest. I don't want him doing that following my example. He seems perfectly fine and hyperactive, but I think it just hit me today how much he sees me sitting around and asking him to get things for me.

So you know that your guilt and the bad energy it's putting out have already affected your son.

The first thing you can do for the betterment of everybody is to immediately STOP using your son as your go-fer.

Healthy acceptance means taking responsibility for yourself and getting up and getting things yourself, no matter how uncomfortable it is, and not using your child as the easy way out.

You are your son's role model and teacher. As you have already suspected, sending him to do an adult's task is teaching him how to be a victim. Taking responsibility for yourself is your way of teaching your son how to deal with adversity.

There are many times when I feel terrible when I have to literally tell myself, "Get up. Get up NOW!" So I absolutely get where you are coming from.

But healthy acceptance means recognizing that you are not in charge of the universe, that you are not going to be able to have absolute control over how MS affects you, and that your one idea of how life "should" be isn't reality. Healthy acceptance means taking responsibility for yourself in spite of how things aren't going the way you wanted them to and taking the actions necessary to make your life go the best way it can.

That could mean seeing a mental health professional to help you deal with the grief of losing the life you thought you were going to have. It could mean seeing a therapist to help you get your priorities straight. It could mean seeing a mental health professional to learn how to think productively and healthfully, and how to use your time to do things that will promote your well being instead of reinforcing your "victimhood". It could mean seeing a therapist to learn how to be the best parent you can be in spite of the limitations MS puts on you, and how to prevent your son from picking up on bad habits and being affected by your negative energy.

That could mean getting a referral to an occupational therapist to learn how to set up your work environment so you can preserve your energy and find more efficient ways of getting your work assignments done. It could mean seeing an occupational therapist to learn how to do things more efficiently at home instead of sending your son to do them for you. I'm definitely NOT talking about using precious energy inefficiently just to prove that you are doing "something".

It could mean taking just 15 minutes a day to research how to use diet and healthy behaviors to give you more energy, or to find out what to talk to your doctor about to help get better control of your MS symptoms.

Healthy acceptance means realizing what reality is and that you CAN make changes to live well in spite of it. Ideas are just ideas and they can be changed. You don't have to believe every thought you have just because you have it. You don't have to succumb to every emotion you feel just because you feel it. When you take responsibility for yourself and do the best you can even though it isn't what your original idea was, there won't be any room for guilt. You can do it!