Invisible illnesses ...............

  1. This is somewhat of a vent/rant...

    Since 1998, I have been diagnosed with Meniere's Disease. This disease affects balance/equillibrium and hearing; is associated with tinnitus, brain fog and has episodes of vertigo and vomiting. It is not an 'obvious" illness, although sometimes I wish I could break out in day-glo orange polka dots or something, to indicate that I was ill!!

    Most individuals do not understand what vertigo truly is, especially not from the perspective of the one suffering. Most have experienced flu or hangover type dizziness with the room spinning, etc. So they may feel they understand when I say I have vertigo. This is true, in part. Vertigo, at least in my personal perspective, is when the room spins one direction and I spin another. Kinda like a carousel on top of a carousel spinning in opposite directions!

    Then, to this "fun" state, add in vomiting, possibly diarrhea (everything gets involved), tinnitus, and at the same time, reduced hearing and inner ear pressure, and you have some idea. This may last from a few hours to, in various degrees, days to weeks.

    I have what I call "daily Dizzies". Not really vertigo, but a feeling similar to being on a boat, everything is I have tinnitus, hearing loss and ear pressure daily.

    I require an electronic stethoscope at work and have a hearing aid. These two things really allow me to work and not worry about what I may not be hearing.

    Meniere's disease may affect one ear, or both. My variety of Meniere's has affected both ears. I have had bilateral endolymphatic sac decompression surgery in the attempt to reduce the symptoms enough to allow me to continue working. This has been moderately successful. Meniere's can be very light and sporadic or may result in total disability. It affects everyone differently and this increases the difficulty with others in understanding. Medications may be taken to help and they may work differently on different people. I take meclizine PRN, and have taken valium or ativan at times in the past. I don't like the affect that valium, etc., has on me at work, so I don't take it. I also take HCTZ to help lower the pressure in the inner ear/fluid levels.

    Those around me have difficulty understanding, as I don't "look" ill (unless I am green/vomiting). I fall often, or barely keep from it; I have trouble hearing and the hearing loss may vary daily. The tinnitus at times is so loud I can barely hear over it. The brain fog is not fun and coupled with becoming older, it can create havoc at times.

    Because my balance is shot, I kinda use my eyes to help with balance and by the end of the day my eyes are tired and my balance is worse and I am dizzier and just wanna go to bed, but NOPE... now the family/homelife begins and no rest for me! I still don't "look" ill and its hard for my family to understand, too.

    I know that Meniere's will not kill me, unless I get dizzy and fall off something, so I feel bad about complaining about it, when there are far worse, more deadly diseases out there. I just would like understanding sometimes when I am dizzy, my hearing is shot, the timmitus is drowning out the world and I just wanna go to bed!

    Enough ranting/venting, and in closing I just want to encourage you to take a different "look" at the invisible illnesses, just cause you can't see it, don't mean it isn't there!!

    Thank you for listening.......MDS1
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    About silverbat, ASN, RN

    Joined: Jan '10; Posts: 574; Likes: 1,219


  3. by   IrishErin
    I looked after a co worker's mother last month that has menier's. She was so sick I felt awful for her! It didn't seem to matter what position she was in, she couldnt ditch the dizziness. One of our NP's ended up doing some kind of manipulation and it helped her quite a bit! It looked funny at the time though.
    Just watching what she went through was hard enough, I can't imagine living it. My heart goes out to you!
  4. by   poppycat
    I have frequent bouts with labyrinthitis so I completely understand the vertigo. It's debilitating. I can't imagine living with that every day, along with the other symptoms you describe.

    I also have an "invisible" illness. I was diagnosed a year & a half ago with rheumatoid arthritis. I've had to make so many adjustments to my daily routine it's not even funny. I have to make sure that I schedule my life in such a way that I can take at least 1 nap every day because the exhaustion that comes with RA is absolutely overwhelming. People who don't have chronic illnesses can't possibly understand the impact they have on your life. Just because I look fine, it doesn't mean I'm not in constant pain & exhausted.
  5. by   ktwlpn
    It's really no-one's business.I have something going on, too and I learned awhile ago the people minimize everyone else's problems -especially if they can't see them.I keep my problem to myself and if the time comes that I have to miss time then I'll use intermittent FMLA.On the other hand I work with a woman who whines and complains about some minor ailment daily-you really get sick of hearing it.I really go to work to do my job-I don't want to listen to crap all day long about someone's marriage or headache.I want to focus my energy on the resident's and their visitors..I'm an old crabby nurse I guess.....
  6. by   silverbat
    I know what you mean. I try not to complain about stuff. Some days, my invisible stuff is visible cause i stagger around, or limp worse, so its obvious, but that doesn't mean I have to whin, even then. I have a family member who complains about every tiny little ache and pain and I try NOT to be like her!! LOL I do find that I may whine about little things more than the big things!! LOL. like i have gripped about my sunburn more than I have anything in months!! LOL

    I have't worked at my current job long enough to have FMLA, so that isn't an option. At a previous job I used it and lo and behold, my wonderful supportive co-workers just thought I was faking it. These were the same nurses who helped me to the bathroom when I was an inpatient and too dizzy to walk, and were present the night I passed out after coming back to work to soon after surgery. I got to the point I didn't care what they thought and just worked the best I could.... but it still hurt.....

    I really understand that---I don't wanna listen to their marriage grumbles, and especially NOT their sex life!!!
  7. by   Nascar nurse
    I remember the day I left a shopping cart right next to my car rather than going taking it to the cart corral just 4 parking spots over. Some middle age man chewed me out royally about my laziness. He cared nothing as I tried to explain I was just released from the hospital following a pulmonary embolism and DVT - with my calf muscle feeling like it was being filleted from the bone from a simple trip in for bread/milk. His response "Sounds like an excuse to me" and strutted off. I'm sure I looked like a picture of health although that walk in/out of the store still haunts my memories due to the pain (made labor/delivery seem easy).

    You can't fix stupid and you can't explain things to idiots. Just move along the best you can.
  8. by   makeadifrence

    Since you're keeping your problem to yourself, when you use your intermittent FMLA what do you say is the problem when you call off? I'm curious b/c I have major depression, and I am going to obtain an intermittent FMLA.
  9. by   clmafm05
    I was diagnosed in 2010 with semi-circular canal dehiscence in both ears. It is not a fun disorder. My balance was off, when my heart beat increased causes my eyes to bounce, and I can hear my own voice as if I were talking in a loud speaker directing it to my ears. When my eyes moved, the sounds of sandpaper rubbing on a balloon were played in my head. I tried different medications to help but in time only got worse. I saw an ENT doctor all the time. Finally it got so bad that on April 16, 2013 I had surgery to fix it in my left ear. I was off work for two weeks to recover but I was ready to go back in 2 days! My s/s have decreased to a minimum to almost nothing! I finally have my life back to where I once was!
    If you want to know more about this disorder then look up "Inside Todd's Head" on YouTube.

    Sent from my iPhone using
  10. by   ktwlpn
    You can use your FMLA intermittently with any dianosis that qualifies.Several of my co-workers have chronic illnesses and miss time during exacerbations.Several have used their time intermittently during chemotherapy.A few have it because they have dependent children with chronic disease. When they call off they state they are using their FMLA and no further questions are asked.The admin does not always know exactly why they qualify-everyone has a right to privacy. My "thing" has not gotten to the point where I have to miss work-that should be years away if I'm careful now.
  11. by   Marshall1
    One of my siblings has this disease..she too is frustrated at the lack of knowledge about the disease and the fact people around her think she is either seeking attention or making the symptoms up. She too struggles as you do on a daily basis - sometime good days some not. To be dizzy, nauseated, etc. on a daily basis would be a terrible way to live with judgement from ignorant people piled on top. Hope you continue to do well.
  12. by   TopazLover
    I have a friend who was just diagnosed with Meniere's. She doing better and can actually do her work now. She has young children and is still learning her boundaries.

    I have tinnitus. I can appreciate that part what you go through. Sometimes the noise is so loud and intrusive I can't sleep, even with my sound machine and a touch of Ativan, and Melatonin, and my normal pain meds. I do better with distracting noises. TV, radio, music, anything that gets the focus off the noise.

    So many diseases are hidden diseases. We can't see the heart disease that makes the person concerned about bleeding and bruising. We have no idea of Crohn's or other GI ailments. People are quick to judge. Bruising: wonder if they drink too much and fall down drunk. Thin and hitting the BR often: Must be bulimic.

    Age has given me a bit of patience with the person who does not respond the way I anticipate. I have never set foot in their moccasins, let alone walked that proverbial mile. Life gave me that lesson because I also have hidden things.
  13. by   silverbat
    There is a wonderful support group on yahoo groups that gives great support and information that your sib might benefit from. Its called MMfriendships2.
  14. by   LindaBright
    An earlier poster said it best, that people really try to minimize problems that aren't their own, especially if they are "invisible," like you said. I can't imagine how you keep up the determination and motivation you have as a nurse, but, I think its really commendable that you do. If nothing else, some of us "invisible" supporters understand and sympathize!