Friends/family not understanding

Specific Illnesses & Conditions VM/MAV
1

Hi everyone.

I am feeling better than I was feeling before. I think the med is working (thank God!). It is taking me baby steps to get where I used to be. I am trying really hard not to trigger the MAV. I am getting proper rest, watching my diet, trying (unsuccessfully) to avoid stress, taking my medicine. Anyways, my husband is a very, very social person. He likes to be constantly surrounded by friends. Before all this MAV started, I was social too, to an extent. I always have liked to kick back once in awhile, watch a good movie, order in,read a good book, have some “down” time. Before the MAV crash, I would just pacify my husband and go out to dinner with friends a lot or have them over frequently. However, I have been trying to get to bed by 10:30 or 11:00 pm. and I’m watching my diet, so lately I haven’t seen our friends as much. I did even cancel a vacation we had planned back in November (before my diagnosis) because I felt so terrible. Well, here it is Friday night, of course my husband’s friends called again and want to go out to dinner and come over. I just can’t. I want to get to bed early and I don’t want to go out for pizza. All I ask, is that our (mainly his) friends give me time. My husband is in law enforcement and works 2days, off two days, works three, off three (they are on 12 hour shifts). So, his friends call daily. My husband fishes and hunts etc. every day off with his friends. I need time to get back to myself. There were numerous times over the summer when I hosted my husband’s parties and put on a “fake” happy, healthy face. I don’t know how I did it. I am a homebody now. I am losing my relationship with my husband because of it. He says it is all in my head. His words can be so cruel. I’ve taken him to my appointments, but he doesn’t understand. My friends do not either, correction, his friends do not understand. What can I do? This MAV is really causing me to reevaluate my life. I don’t need this drama right now. He makes me feel as if I am crazy. Sorry to vent, I am just in tears right now. Does anyone out here have friends/family that do not understand? What do you do? I know it’s been 9 months of MAV and I am sorry that I have this, I don’t want it.

  • Nance
2

YES my family has been very unsuporting, at least my parents. I have had some support from my little brother, but that’s not really something he should have to do, comforting me when I was in tears as my parents gave me another yelling. Ive moved out 3 months after this started, so I dont have to deal with them anymore. Maybe theyre slowly realising its not a psychological issue as its not gotten any better even though I dont feel as depressed right now (im suprised really), but who knows…

If I had more strength, I would probably tell my parents I never want to see them again, for all this immense pain theyve caused me, almost worse than the disease itself.

If your husband doesn’t appreciate what you’re going through, either make him understand or get a divorce. Harsh words but I dont understand how our loved ones wont believe us. Its so selfish to put the blame in the one whos sick, and very convenient to also make the sick person a lying person (youre not sick). even if this was in ones head, one doesnt deserve to be treated like that… :frowning:

3

Hi Nance,

That is a tough one. I am sorry you are feeling the way you do. I completely understand. I don’t think we can ever get our family and friends to completely understand how we feel. How could they without actually going through it? I know I sound like I’m crazy when I am describing my symptoms to someone. But, I KNOW I am not crazy and I am not imagining this. And, neither are you! That being said, your husband can certainly find a way to have compassion for your situation. I believe that is his duty as your lover and spouse. I understand it may not be easy, but he needs to figure it out.

Have you tried giving him articles to read on the subject? Or, maybe even have him check out this forum, if you are comfortable with that. My husband doesn’t really understand either, but he is much more sensitive now and no longer pressures me to do things when I don’t feel well. I think what opened his eyes the most was hearing other people with this or similar conditions describe their experiences. There is a link to a clip on this forum somewhere to an ABC news video on Mal de Debarquement Syndrome that does a pretty good job describing the motion symptoms. It is not the same disorder, but there are a lot of similarities.

Here, I found the link. Hopefully it still works: ABC News Videos - ABC News

Also, my husband and I recently watched a segment on migraine and balance disorders on the show The Doctor’s. My husband kept saying, “That sounds like you.” I think he finally gets it, even though he can’t really imagine experiencing what I experience.

The best way I can think to describe it to someone who is not sick is to tell them it is kind of like have a hangover after staying out partying all night, only it never goes away. When my vertigo was bad, the spinning sensation when I would lie in bed was just like it was when I would go to bed in my party days after having too much to drink, except I never got to enjoy the buzz first. :wink:

As for tonight, you need to take care of yourself. If you don’t , you are only going to get worse. Anxiety and sleep irregularities are MAJOR triggers.

Take care, Nance. And remember we are all here for you, and we understand how you feel.

Marci

4

Mikael,

Thank you for your reply. I am so sorry to hear that your parents are not understanding. You are right, it is almost worse than the MAV itself. At least you have your brother, he sounds like he understands. I really am reevaluating my relationship with my husband. When I am “back to normal”, I have to make some much needed changes in my life. The only positive thing that came out of this whole MAV mess, is that I realize how precious life is and one’s good health is. I took so much for granted before. We don’t deserve to be treated this way. My husband has Crohn’s disease and I have always been compassionate to him. I hate seeing people sick. I would do anything to comfort someone who was suffering. I guess not everyone is like us.

Sincerely -

Nance

5

Marci,

Thank you. I am going to have him watch that clip that you forwarded. That is a good description of how we feel. It is like a horrible hang over feeling, but we didn’t have any fun leading to this. :lol: I wonder if I could call the Doctor’s show up on the internet and watch a clip of that episode. I am going to try. I know with the Oprah show, I do that all the time. I saw The Doctor’s once and could never find it on again. I’m so glad your husband understands now. It helps not having pressure to do things. My parents have been really good through all of this. They live close, which has been good. I am already feeling the stress lessen after talking to you guys. I can’t thank you enough.

Sincerely -

Nance

6

Nance ,

I am so sorry you are feeling this way right now. I have been there and I know what it is like. My husband finally understands and has been most supportive. This is now taking it’s tole on him , too.

You HAVE TO TAKE CARE of yourself. Period and if that means you loose friends over it so be it, they are not worth it. It is good that you hav your parents and if it will help talk with them about how you feel, you need to get these feelings out otherwise it will give you set backs that you do not need.

I understand the homebody feeling, it is where I feel safe and secure. Before all this happened I drove 40 miles to work one way by myself everyday. I worked in a very busy company. I went and did things all the time.

I have finally gotten back to a a point where I can go in town , close by myself but most times I always have my husband with me. We do not go out with friends, or in crowded areas that much. If w do he is always with me.

It has been over a year and three months since all this started for me and I am still not at a point where I can go back to my “normal” life but I am better. But I am taking this slow to try and make sure I can handle circumstances.

I do not apologize to anyone for having to do this as they are not in my shoes and have not lived in the hell I have gone through over the last year. I cannot afford to push myself because I know the outcome.

Sometimes this disease is lonely but find your own peaceful place in your mind to go and deal with your feelings, your worries and your getting yourself better. Other people are not in your body and do not know where you have been and where you are trying to get back to…if they do not understand fine, but they could be a little more compassionate in their feelings towards you and what you are going through.

I would say all of us have had to evaluate our life’s and what is important and what is not. I have learned many of the little things that seemed so big are so small.

I try real hard not to be a perfectionist anymore because it would send me over the edge. I do what I can do in any given day and what I cant it will be there the next day.

Bless your heart i feel your pain and know this is not easy. Please take care of yourself and do what YOU can do and not what other people dictate you do right now.

Take care of yourself and say a prayer or meditate , I have learned or remembered we have to turn these things over to a higher power because we can not handle it by ourselves.

You will be in my thoughts!
Tammy

7

— Begin quote from “MikaelHS”

If I had more strength, I would probably tell my parents I never want to see them again, for all this immense pain theyve caused me, almost worse than the disease itself.

— End quote

Ah yes, there are times when I’ve wanted to tell them that myself… (as I might have told you earlier.)
It doesn’t matter how much info I show, how many quotes from fellow sufferers I show, how many doctor/hospital websites I show, etc… It all comes down to this: I might not have MAV. In their minds, of course. They don’t really believe it, they think I can just power through and all will be well in the end… As if I haven’t tried that 100 times already? :evil:
Grr. If I wasn’t totally dependant on their help I have no idea what things would look like.

8

Thing is, people dont get how insulting it is when they hint its á mental problem. One of my best friends firmly believed it to be so (dont really know what his position is now as I dont really talk about my illness much these days), and could not see the problem I was having with that position. I told him: “what would you feel like if you had no legs and everybody around you kept telling you to stand up straight!”. Maybe that got the message across, dunno…

Ive had other issues that also have been hinted to be mental problems. Both my arm problems were hinted (only by some people though, never parents etc) as well as my vocal problems. The funny thing is even though the docs saw that my throat and nose was all sore and red, even though they never really found the cause, it still seemed some didnt really believe it :S

9

Tammy - Thank you for your comforting reply. You totally understand how I feel. I am going to take all your advice. I need to focus on myself and stop feeling guilty because I have this. I need to stop being a perfectionist too. My problem is I strive to keep everything “perfect”. My husband expects that of me. I just can’t be that person anymore. I am learning about what is really important in life. It seems as if you are in control of the MAV. I am trying to get there. I’ve never been very religious, but I’ve turned to a “higher power” to help me get through this too. I never thought I could pray so much. Thank you for caring. Your post made me feel better.

Tranquility - You made me laugh! Thank you for that! I love your comment about how if you didn’t depend on people so much, things would be different. Me too! I want my independence back! I ignore a lot of comments my husband makes because I depend on him so much now. Look out once I feel “normal” again. I’ll never forget how I’ve been treated through all of this. I hate relying on people so much.

Mikael - I know what you mean! I hate when people think this MAV is a “mental thing”. It is so real. There is no way we could make up these symptoms. Why would we want to feel this way?

Best wishes to all of you, you are all in my thoughts and prayers.

  • Nance