Family doesn't get it?

[wendyp6891]

I have been diagnosed since 2001. The episode that brought me to my diagnosis was I lost my vision in both eyes. I had optic neuritis in both eyes and the major part of the episode lasted almost 3months. My mom was and has been great tome there all the episodes that followed. I haven't had a major episode in almost 2 years, but what has cost me my last 2 jobs and one I had for 12 years was my cognitive functions. Its is bad and I know it. I try things to help me remember but it is not always fool proof. I have started to work for my sister as a receptionist, thinking "she knows about me having MS, so that will make things easier". Not at all!! She treats me like everything is fine, which I understand to a point but when I'm exshuasted I'm not lazy its something I can't really control. Lately I have been so dizzy and light headed all the time. I don't complain but damn she makes me so mad when I ask for the simplest thing for help she says to me she doesn't have time to help me by reminding me. Then I go to my mom and she agrees with her to a point. This whole thing just makes me cry out of pure frustration. I don't know what to do.they just don't understand. I am 35 years old but I feel like I'm 10 when it comes to my sister. Its all her way. I had a friend I use to be able to talk to because she has MS and understood but she moved away a few years ago.

[golfore]

Sorry you have to deal with this problem. To me it sounds like your sister need more help with her business than you can provide.

Don't beat yourself up over this learning experience. Even under perfect conditions, it's always problematic working with relatives.

Your in a good place to vent your frustrations. Here on MS World we understand how frustrating MS can be. I wish I had some words of wisdom for you. Maybe someone on this site will have a solution.

Good luck!!!

[22cyclist]

It is so hard with close relatives. Some are natural caretakers and others are more prone to pretend it (the MS) is not there at all. It is too hard for them to think about, read about, and look at you as a person with a degenerative disease. Hang in there, try and talk with her one on one about it, give her one of the small booklets on MS that the medication providers give out (DMTs). It took my mom about 3 years to at least look at one of those booklets then she finally got it. My grandparents never did get it. Thank goodness my husband does. My brother has no clue and shows no interest in learning. That is his way of protecting himself. Nope don't see it, don't know anything about it, so must not be true.

I wish you the best of luck, family can be hard to deal with.

Take care
Lisa

[kelm10]

not sure

Good advice from others. The other thing that might help is a neuropsych test. That will give it in writing where your cognitive status is. If not then move forward.

you can also have them look at the spoon theory with MS (easy to look up on a search engine like google.) This can help with helping fatigue, which ads to the cog issues at times.

maybe getting up and walking around every hour can help release endorphins which might help, also.

You can set reminders on the computer or smart phone if you have one. Do reminders how ever it is going to help you. Maybe you have to set a reminder to check certain things hourly, twice a day, or daily.

Maybe set reminders on what to do if your sister or business requires this work.

Hope this helps.

[hunterd]

I hope you do not mind that I moved your thread here, I feel you will get better responses here.

Sometimes family will choose to stay under a blanket, that way they do not feel it, see it, and they cannot touch it. Basically they decide the best way to deal with things is to stay in the dark about them (that way they do not have to deal with them).

When someone chooses to remain uneducated about certain things there is nothing you can do about it, and as hard as it is to accept, you will probably not be able to change their mind.

[sunandmoonschild]

I can feel your pain and anxiety. My children were the best and biggest supporters I have had. They took to the internet reading everything they could about MS and what they could expect. The rest of my family gave me a simple "Wow, sorry to hear that. So are you still going to be able to .... " and then fill in the blanks with whatever they needed. Most of the "friends" I had were about the same way. I went from being the one people counted on to the first one counted out.

The more I slow down the less of friends and most of my family I see but, I figure they are kind of doing me a favor. See, they are showing me more and more just who I can actually count on by their own process of self elimination. Fine by me. Granted some relationships severed have been a little sad to see happen but over all they needed to happen so I can stop the distraction in that area and focus on what I need to focus on which, at times, is something as simple as right foot, left foot, right foot, left foot.

As hard as it is to accept; not everyone in your family is going to understand MS or even accept fully that you have it. Could be simply because if they admit something is wrong with you then it opens up the possibility that they're going to have to face their own mortality at some unexpected point as well?

If your sister were diagnosed and you were well; would you be able to accept her MS fully without frustration? Before you answer, how many times have you been overwhelmed and frustrated at yourself since the monster bit you? It's not always easy to accept there's something wrong with someone we love especially when it's something that affects so many areas of your life and body as MS does.

My older sister called me the other day telling me that she was really having a bad day. I told her I was sorry to hear that. She said that she was diagnosed with strep and her hubster was upset with her because she wanted to take a nap. She said she couldn't believe he was upset because she wanted to take a nap but apparently he wanted her to grill out for lunch. I went and cooked lunch for her and her hubster. We all ate (my sister ate far away from me so I didn't catch her strep). I did the dishes and went home.

She called me crying as soon as I got in the door. "I can't believe my sister with MS drove over here, cooked me lunch and did the dishes just because I've got a stupid cold. God I'm such a baby." I just laughed. I told her not to worry. With MS I'm sure I'll have a bad day coming up and she could come cook for me.

Chin up though. I know it is frustrating but sometimes people get very much involved in their "first world problems" and they don't put them to the side long enough to deal with someone else's "first world". Just remember that you love your sister and try to talk it through. Provide her with some links, books or any information that you think might help your family understand your dx a little better. If they're willing to learn be willing to learn with them.

You can pick your friends. You can pick your nose. Please don't pick your friend's nose. But you can never pick your family.

My thoughts (though apparently more rambled than I thought today) are with you and all.

[goodsea]

I am so sorry this is happening to you. I know sometimes we expect the people we are closest to will be the ones who are the most understanding and the most supportive, but it doesn't always work that way unfortunately. I personally have found that my own expectations are what causes me the most disappointment. You just have to see a situation for what it is, ask yourself-- is this good for me? Is there any chance this will change? If I talk to her, if I change something myself? If it's not good for you, first, accept it while it's going on knowing that it won't last, then determine how you can change it. Can you change your job? I bet if you start looking, talking to people, you'll find something else that suits you. You can talk to a new employer, tell them your situation, you may be surprised that someone else is understanding. I've always been surprised how doors open up just when I start moving in a different direction. Don't let your past experience with jobs that didn't work out define you. You'll find it...think out of the box. Does it have to be in an office? Can it be with children? With animals? I was rewatching "Twin Peaks" and just saw this: "You don't have to know where the path will lead, but know that you're on the path." :-) I liked it!

I want to share with you that your story is similar to mine in that optic neuritis in both eyes was how I was diagnosed as well. It was scaaaary when you don't know what's causing it.

Much luck to you. I think family is tough!!!

[MSConnecter]

Big sisters

I have been diagnosed since 2001. The episode that brought me to my diagnosis was I lost my vision in both eyes. I had optic neuritis in both eyes and the major part of the episode lasted almost 3months. My mom was and has been great tome there all the episodes that followed. I haven't had a major episode in almost 2 years, but what has cost me my last 2 jobs and one I had for 12 years was my cognitive functions. Its is bad and I know it. I try things to help me remember but it is not always fool proof. I have started to work for my sister as a receptionist, thinking "she knows about me having MS, so that will make things easier". Not at all!! She treats me like everything is fine, which I understand to a point but when I'm exshuasted I'm not lazy its something I can't really control. Lately I have been so dizzy and light headed all the time. I don't complain but damn she makes me so mad when I ask for the simplest thing for help she says to me she doesn't have time to help me by reminding me. Then I go to my mom and she agrees with her to a point. This whole thing just makes me cry out of pure frustration. I don't know what to do.they just don't understand. I am 35 years old but I feel like I'm 10 when it comes to my sister. Its all her way. I had a friend I use to be able to talk to because she has MS and understood but she moved away a few years ago.

Boy howdy do I get it with sisters. My MS is severely affected by stress. My sister does not understand how bad it gets. We love each other and it sucks. I just needed to vent. Some other day will be better than now.