When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.” He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.
Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress. A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.
Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.
I’ve been diagnosed with PTSD. I’ve known this for a while but it has never been as apparent as it has been the past month. For the past month I’ve had very little vertigo. The vertigo I have had has been minor and only lasted for a very short period of time. Most days I’ve been vertigo free, but I haven’t been able to enjoy these days. I am constantly expecting an attack at any moment. I’m on edge, jumpy, irritable, anxious, argumentative…. I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently. I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall. Waiting for that next vertigo attack. Sometimes I deal with this much better than other times. Right now, I’m a nervous wreck.
I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis. If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it. PTSD Test
additional reading and helpful sites:
Great tips on how to help someone with a hearing loss understand you better!
I attended a fundraiser for Hearing Health Foundation a few years ago where Cyndi Lauper performed. At first, I was surprised at the choice of a rocker. Wouldn’t the music be too loud? Was that the kind of message a hearing loss organization should send? My worry was misplaced. The volume level was fun, but also safe, and Cyndi put on a great show.
I’m not sure Cyndi knew what to make of the reduced volume level though. “I don’t know why they asked me to play the music so quietly,” she said to the crowd in all seriousness, “since they can’t hear well, I thought they would ask me to play it louder!”
This statement made me laugh out loud, especially since she delivered it in her characteristic accent and style, but it has stayed with me all these years, because it is such a common misnomer — that making something louder solves…
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“Nothing is permanent.
Everything is subject to change.
Being is always becoming.”
“Be happy in the moment,
Each moment is all way need,
~ Mother Teresa
“When watching after yourself, you watch after others.
When watching after others, you watch after yourself.”
~ The Buddha
“Hatred is never appeased by hatred in this world.
By non-hatred alone is hatred appeased. This is a law eternal.”
~ The Buddha
I have some confessions that I thought some might relate to, they can be a little embarrassing to me, but I’ve decided to tell all.
I envy people who look sick. It’s just hard to be as sick as I am and look completely normal most of the time. Others have no idea what I go through. I know on the outside I appear normal. I know it’s hard for people to understand why I can’t do things. Sometimes it’s hard for me to understand. Sometimes I feel if I looked sick it would be easier.
I’ve played the sick card. This is very hard for me to admit. There have been rare occasions when I simply haven’t wanted to do something and I’ve said I was too sick. Normally that is something that would make me sicker. Something I might want to do, but I know if I do it I’m going to pay the price afterward. So instead of trying to explain this it’s easier to just say I don’t feel well enough to go in the first place. Now I do admit there have been very rare occasions that I simply have not wanted to do something and said I wasn’t feeling well enough. I can think of one. There was an outing with Stuart’s work and I knew I’d feel uncomfortable around all of those people so I played the sick card. Stuart went and that was really all that counted, but I felt very guilty about saying I was too sick when I really wasn’t that day.
When I get mad at my husband sometimes I’ll “take my ears off”, ( I’ll, take off the processors to my cochlear implants) so I can’t hear him. Yes when I get mad I act like a child. “I can’t hear you, lalalala”. I’m sure it infuriates him. I’m acting like a child. And at the time, I don’t care.
I’m addicted to the internet and I don’t feel that is a problem. I am basically housebound. I can’t leave without someone else. I rarely go anywhere other than to the doctor or the occasional outing, that is normally just errands. I don’t have friends close by since we moved. Even before we moved I had very few that I saw on a regular basis. I keep in touch with my friends through the internet. I read, I write, I research, I email, even my TV is through the internet. Some people may think I spend way too much time on the internet, I don’t think so.
I really don’t miss working. If I’d had the dream job I’m sure I’d miss working, but truthfully I didn’t like my job. I dreaded going to work. I don’t miss it at all. I don’t like the fact that I can’t work. But missing my job? No not at all.
I care what people think. I keep being told, “who cares what people think?” Well I do. Why? I have no idea. I don’t like this part about me, but I really care about what people think. I don’t want people to think I’m lazy, that I’m pretending to be sick, that I’m a hypochondriac…. Yet I don’t like to go out looking bad. I don’t want people to think I can’t take care of myself. I don’t want people to think my husband isn’t taking care of me. I care what people think when they come in my house. (as if so many people come in my house) I care what people think when they ask me what I do and I can’t give them an answer. I don’t “do” anything. I even dress up a bit just to go to the doctor. Especially my therapist. She is a lovely woman, so put together, and I want to look all put together too. So I actually dress up a bit to go to my therapy sessions. How weird is that?
I often don’t know how to talk about anything other than health issues. My life revolves around my health, and most of my friends have chronic illnesses and their life revolves around their health issues so we don’t have a problem talking. But when I meet other people, when I need to make conversation with people outside of my chronic illness circle, I’m a bit lost.
Often I have no idea what someone just said to me, so I fake it. When there is small talk being said and I miss part of it because I just can’t hear, I nod and smile a lot and hope I’m not smiling when someone just told me something sad. It is way too hard for me to constantly ask people to repeat themselves, especially in a setting where I know I probably won’t be able to hear them anyway. Often when I’m with Stuart I just stand there and smile and let him deal with the conversation. It’s hard on me, not being able to participate, but it’s harder to struggle through it.
I love my recliner. I never thought I’d be a middle aged woman who spends most of her time in her recliner, but I do. I love this chair. I got it when I got my hip replaced, I don’t know what I did without it! I get through my vertigo attacks much easier in the recliner, I don’t have to lie all the way down, I don’t have to sit all the way up, it’s just so much easier. It’s my comfort spot, it’s where I write, read, watch TV….and that’s okay with me.
I don’t shower of bathe regularly. Taking a shower or bath is an ordeal. I have a safety issue with both. Taking a shower is harder for me because I often get vertigo when the water hits my head, even using a shower seat with a hand held shower head doesn’t solve the problem. Taking a bath is easier, but it’s much harder to get in and out of the tub. I’ve also had vertigo start with me in the tub a few times. I have to have someone with me when I shower or bathe. It takes a lot of energy out of me. I often have to lie down and rest afterward. I never thought I’d say that I’m lucky I have dry skin and hair but since I do it’s not that big of a deal if I don’t wash my hair for a couple of weeks. No, I’m not gross, I do wash up. But taking a full on bath, takes a lot.
Sometimes I’ll wear the same “clothes” for days. When I don’t feel good I wear the same clothes for days. By clothes I mean a tee and shorts or sleep pants. I will move from the bed to my recliner and back. Who needs to change clothes? Truthfully, I don’t think I could if I wanted to. But sometimes I don’t change clothes simply because it’s easier.
I’m hard to live with. I get grumpy, grouchy, moody, bitchy….but I’m also loving, happy, joyful…. Let’s just say, I’m confusing.
Are there confessions you have? Want to share? Do you share some of mine? I’d love to hear!
(photo by and of W. Holcombe. All rights reserved)
Finish every day and be done with it.
You have done what you could.
Some blunders and absurdities, no doubt, crept in.
Forget them as soon as you can,
tomorrow is a new day;
begin it well and serenely,
with too high a spirit to be cumbered
with your old nonsense.
~ Ralph Waldo Emerson