You Have What?????????????????????

Discussion in 'Your Living Room' started by mlk040, Mar 18, 2009.

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  1. mlk040

    mlk040 New Member

    Nothing like getting that response from your boss after day 4 of having nothing but spinners and vomiting. today is 4th day, right now feel OK, not sure for how long. I was full-blown attack free for about 6 months (with the exception of what I call mini-spinners which are shorter periods of vertigo) until this past Sunday. I tried to explain the best I could--but I still don't think he get's it. To me, that is one of the most frustrating things about living with this condition---trying to make people understand what my body goes through during attacks. the stress level in my life has hit a record high --with my 77 year old mom moving in with hubby and i--taking care of her and then my sister taking off 3 weeks ago to live with a guy she's only known for several months, leaving no forwarding address-which has us all worried to death. I do not know how much longer I will be able to hold down a job and take care of all the other stuff in my life without completely going crazy.................just needed to vent! :eek:
     
  2. Linda1002

    Linda1002 New Member

    I have decided there is NO WAY anyone can understand without walking in the same shoes.

    Give this to your boss and ask him to read it. It might help.

    http://www.menieres.org/forum/index.php/topic,46.0.html
     
  3. JessiesGirl

    JessiesGirl New Member

    Because this is one of those "unheard of" diseases, and the symptoms come and go, it's tough for people to understand. Hell, it was tough for ME to understand it, and I HAVE it. FWIW, I've found that educating people about it is a process that takes time, and happens in bits and pieces. of course some people get it better than others. My boss still seems to think that I'm going to get "cured" of this, and will act surprised when I have problems after a few months without. Like, why is this happening, aren't I done with that?

    Still, I find by educating people a bit at a time, they begin to get it over time. I once had a rather public dizzy spell at a staff meeting in Vegas (I was mortified -- someone had to carry me to the bathroom, where I threw up for two hours while they conducted a staff meeting in the other room), and as devastating as it was to me at the time, I think it helped them to better "get it." Not that I wish this on you, but at some point, it may happen that people start to see you when you get sick, and then see you get well again, and then see you have another bad spell, and I think at that point, it sort of clicks in.

    It's just that the whole way this works tends to not make sense to people, who figure if you're sick, you either get sicker, or you get better. But with MM, both happens at different times, and you never die from it and you also never get cured from it. So it just confuses people.

    Explain in small sound bites, not so much techno jargon that they tune it out, but enough so they get how it works, and how it impacts your health. After many years, I'm amazed and grateful how naturally many of my friends sit themselves on my hearing side, or don't blink when in the middle of a conversation, I reach for a medicine bottle and say "get me water please" with a glazed look in my eyes. "I'll proof that later -- the page is moving right now" makes perfect sense to my staff, and they know when to leave me alone, when to get me a garbage can and close the door behind them, and when to offer to drive me home and have someone follow in my car. My boss, while he doesn't fully get it, has become much more understanding when I tell him it's a work from home day because I won't get into my car the way I'm feeling.

    So try not to worry about your boss getting it -- you're going to have this for a long time, so you'll be able to educate him over time, and eventually he probably will get it. It just takes some time for them to learn to understand and process it. In the meanwhile, all this stress is NOT good for you. Is there anyone else who can help you out? if you have to take a few weeks off from work to take care of family stuff, are you able to? It sounds like you have WAY too much going on, and that's not helping your MM.

    As for your sister, try not to worry about her. I have sisters who also do crazy things like this sometimes and I know that I have no control over it, so I have to let that go, let them make their own decisions (even the bad ones), and trust that they'll drop back into touch soon enough.

    Try not to take on anyone's stress that you don't have to. Make YOU you're priority, because you will not be able to help anyone else if you don't.

    Hang in there -- it does get better!
     
  4. katzefrau

    katzefrau New Member

    Amen and amen! People don't understand Meniere's unless they know someone well who has it. Don't you just love the dismissive response of people who say "oh, yes, I have been dizzy sometimes too." ? (As we all know, there is indecribable difference between feeling unsteady as in their version of dizziness vs. world flying incapacitating vertigo attacks which come unannounced and last hours on end!) When someone has cancer or heart trouble or diabetes or some other more common affliction people understand...but we deal with a very obscure invisible chronic unpredictable illness. (not that I wish for any of those afflictions instead for anyone else or for myself) That is one of the reasons we all love this forum here. We can relate to each other and get immense support.
    Very apt heading to your topic "we have what???????" Good luck.
    katz
     
  5. jools

    jools Guest

    Hi,

    I got a letter from my doctor and gave a copy to my boss and HR. The letter explained that I may not be able to work some days due to extreme vertigo and on other days I may need to work from home until my symptoms subsided. I also pointed them to articles on the Internet explaining what Menieres is. One boss I had was brilliant and even researched it herself.

    But even though I've had this for almost 10 years, the one person who still doesn't get it on occasion is my husband! I had to cancel at short notice on some friends a while ago because of a vertigo attack. They have invited us out next weekend, and my husband's response was, yeah we might come unless she cancels again on some lame excuse!! I could have hit him! I was not impressed and let him know so as soon as they left!
     
  6. June-

    June- New Member

    Ya' know, husbands can be clueless. I think it's more like they just need a course in how to present it to the world rather than they don't get it. That said, I've been deaf in my right ear for almost 12 years and my husband will still talk to me on my left side with the dishwasher on and water running in the sink and be annoyed when I tell him I can't hear him. Sometimes you have to say 'Do this not that' or 'Say this not that'. They need rules and examples. Sounds like you clued him in on one of the rules.
     
  7. guero

    guero New Member

    Was he joking????? if not, a kick in the nuts is called for!!!!!!!!!!
     
  8. Terri-Lee

    Terri-Lee New Member

    One of the best descriptions of menieres I've seen yet. I've saved the text to pass on ...thnx
     
  9. amberini

    amberini New Member

    Make a powerpoint presentation for your boss. Some people don't understand the vagueness of silent diseases. So if you put it in a slide, with bulletpoints of information, maybe it would click.
    Just thinking outsider the box...
     
  10. candy

    candy To thine ownself be true.

    This was an important post for me today. thank you. I have missed 6 days of work out of the last 10 because of MD and because my daughter had the stomach flu and passed it along to her low immunity mother. I am depressed and I know it. I have to go back and see my psych. Thank God I have a good boss who understands. But I know, as I am HR, that I am not covered under FMLA as I just used all those hours up for the baby. I MAY still have a chance under ADA. But to be honest I love my job - I work 8-2 from work and the rest of the day at home. I love what I do. I love being a mommy and training my dogs, and running. and turbo kick, and being outside. And I haven't been able to do any of those things in a long time. My heart hurts as does my families. I just keep praying and saying GOD - I know you have a plan, I know you do, and I trust you, I trust you, I trust you.

    On a lighter note - I am seeing this new doctor (coem.com) and he is helping me a bit. I have given him three months - if after that he can't help me I am off to discover the world of surgeries, etc. He acutally allergy tested me and I am allergic to wheat, and when they injected it - I felt some of the same symptoms I feel with an on coming attack. So that might of interest to someone.

    Thanks everyone for being here. I would not have survived the last 7 months without this website.
     
  11. So Cal Cyclist

    So Cal Cyclist View Askew

    A picture is worth one thousand words. Check out Tucker's Meniere's DVD and share them with people around you who need to understand. The photographs he has in there are incredibly moving and put words into motion. :)
     
  12. nassman

    nassman Guest


    I take offence to this statement, and here is why:

    If I, or any other male, had said, "was she joking??? if not, a slap across her face is called for", we would be attacked by 99.9% of females on this site (or females in society, in general) as being mysogynists, physical abusers, hateful, etc.

    Why the double standards? Violence is never the answer and joking about it should not be tolerated whether it is a man or woman that is doing it.

    Period.
     
  13. poppaharley

    poppaharley Meniere's: God's answer to a free merry-go-round

    <<<I once had a rather public dizzy spell at a staff meeting in Vegas (I was mortified -- someone had to carry me to the bathroom, where I threw up for two hours while they conducted a staff meeting in the other room), and as devastating as it was to me at the time, I think it helped them to better "get it>>>>

    Herein likes one of the biggest problems in trying to deal with people who have no clue with what this condition does to people. They have a hard time appreciating that there is no control over when or where it happens. It's kind of like when somebody has a heart attack or an epilepsy episode. I've found that if you tell people that it causes severe "vertigo" they sort of think it's like 2 minutes of dizziness after you've been on a roller coaster. If you "just sit down and rest for a few minutes" it will all be better.

    I think the specter of the "vertigo attack" is the single most anexiety producing thing about this condition. You could have sat through your staff meeting with roaring tinnitus or hardly being able to hear. People can sympathize and understand deafness. I don't think anyone can understand the debilitating helplessness of a true vertigo attack unless you've lived through it for two, three, four hours. I think it's also why this condition doesn't get a lot of press or a lot of sympathy of those who don't live with it. Even my own doctor refers to it as a "nusance disease".......ie not life threatening, but it could indeed be life threatening if it hits at the wrong time. He declined to give me an excuse from jury duty because he said "if you have an attack, you can just still sit there. It's not like having a heart attack or stroke". Yeah, right. I'm sure the judge would love to have me barf in his courtroom.

    Tony
     
  14. June-

    June- New Member

    "nuisance disease" Wow, is he uninformed.
     
  15. nassman

    nassman Guest

    Doctors deal with hundreds, if not thousands of patients with vestibular disorders, including meniere's. Their comments are based on what they see ON AVERAGE. For the vast majority of people with meniere's, it is a nuisance disease. That is the truth of the matter. However, that is not to say that a little more sensitivity is not required for the mimority that suffers the worst form of meniere's....
     
  16. mlk040

    mlk040 New Member

    Thanks for the support and advice all! Great idea about educating in bits and pieces, I will start with forwarding the web link to the article on meniere's. Will keep you all posted!

    Mindy
     
  17. katzefrau

    katzefrau New Member

    Nassman,
    I am a female and I totally see your point----there should not be a "double standard".
    katz
     
  18. LisaB

    LisaB New Member

    Best of luck to you. It is a hard thing to deal with, but the good news is that most do deal with it, and well, minus some downtimes. Menieres is episodic, and there is always that hope you'll wake up and it will have gone away...................
    Lisa
     

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