Anyone else out there feel guilty when you feel better? We all know this comes in waves. When you're good, you're good. When you're not, it feels like the end of the world. Nothing can alleviate the crappy sensations. Fullness, spinning, overall malaise. But like a light switch, it can get better in an instant and then you feel like you've been over dramatic, like a kid getting jilted for prom. It ends up that it's not the end of the world. The walls stop spinning. You can actually answer the phone. The feeling of relief from the symptoms almost makes me feel worse. Like I've been "bothering" everyone with my little condition. Can you tell that I've just gone through three days of hell? No "vertigo", as defined by my CURRENT ENT. Not rotational in nature, just uneasiness. Constant pressure. I even got to the point of muscle spasms in my temple and around my ear. Any thoughts?
I just finished about 2 months of the howl, pressure and Hypercusis. No guilt. Only relief and the analysis of triggers.
Good post Coach Betz. I know what you mean. When I'm feeling good, I forget how bad it can be. When I've had a number of good days in a row, or a full week, I start to think, "maybe my MM isn't SO bad. Maybe I don't need surgery. I can deal with this." But then when it comes back again, I'm all, "you cocky idiot! Your life is NOT OK."
being fairly new at this I feel like a whiner but think that eventually I'll stop comparing myself to people with "much worse plights" and just deal with symptoms as they come I've always judged myself harshly and was taught to shake it off, be tough and keep going. Now I think more in terms of paying attention and taking care of myself.
Coach, Guilt is an emotion we experience when we know we have done. something wrong. Having MM or some other vestibular disorder does not qualify for doing something wrong. This blasted disorder that we are afflicted with is brutal. When we get a break from it we should rejoice and embrace the respite. There is nothing to feel guilty about. Focus on getting as well as you can, however you can and ditch the guilt. It's counter productive. Best wishes to all who have to figure this crap out, but don't feel guilty, it's a waste of time.
Agree Melc. However I think Coach was using "guilty" in a very general sense. Not the best choice of word. I think he just means "forgetful". When we get a break from MM for a bit, we are forgetful of how bad we feel most of the time. Like Marie said, we shouldn't compare ourselves with others. All the recovery groups rightly stress this point. I was in physical therapy for my MM. And everyone there was much worse off than me. People who'd been in car crashes. People with MS, etc. Most people could barely move. It made me feel..."guilty" for feeling bad for myself. But then then I also realized the falsity of this notion. All people with ailments are all equally f**ked in our own way. To compare is human. We're always comparing. But it's not good for the brain. Be kind to yourself.
Thanks for the words of encouragement. That's what we all need. When I mentioned guilt, I meant feeling bad for what this disease is putting everyone in our lives through. Feeling bad, "guilty", for all of the extra burden the people around us have to deal with. I don't feel "guilty" when I'm going through my episodes, just when they're over and I feel like a normal person. I feel bad for all of the things that I miss. Forgetful is a good term as well. When you feel better, you forget how bad you did feel. The dragons we fight may not be as big the dragons you fight, but they are still dragons.
I understand coach. I guess I misunderstood your use of "guilty". Your dragon sentiment is bang on. Keep on keeping on.
Just a mild counter to the 'we're all in the same boat' notion. And it's more an issue of propriety than anything. Meaning, when actually in someone's presence who's worse off than me, I wouldn't go on about my MM. Like when I was in physical therapy surrounded by really tough cases, I kept my voice down to my therapist about the problems MM was causing me. Likewise, this week I'm going to visit my sister in-law who's struggling through chemo. You can bet I won't be dominating the conversation with talk of my dizziness (I'm just chirping here. This hasn't much to do with the essence of the topic.)
Like you Coach, my guilt comes from feeling bad for those around me. I know my boyfriend sacrifices quite a lot to be with me and that can weigh on you. In addition to always canceling on friends, calling people to pick me up when I can't drive due to vertigo, having family take me to appointments, etc, etc. - I have a lot of guilt over that since it is something that may NEVER get better or go away!!
That's rough TLB. I can still drive with my MM. But if I couldn't, I'd feel like you I guess. I feel guilty that I can't be the boyfriend I used to be with my girlfriend. I just sent her off on vacation. I'm paying for everything. I don't mind. It's the least I can do for not being able to accompany her on any vacations in the last 2 years because of my MM. She loves travelling. It's her absolute passion. And here I go and get MM on her. But she's so kind about it all, that it helps with my guilt. And it helps that she knows how to be alone. How to self-entertain. And she has friends. So that takes the burden off me quite a bit. If I had a needy gf she'd have broken up with me by now. What with my dizzy, fatigue, and fog. I feel bad not driving to see my older parents. But I get nervous now in LA traffic. And they moved to Santa Monica. Which with traffic can be a 2 to 3 hour drive in stand-still traffic. They lived in Pasadena, which was kinda far from me... then decided to move even farther away from me (prior to my MM) so I don't feel TERRIBLY bad. I've told them to move closer to me if they want to see me.
Coach, my emotions are all over the place. I feel guilt that I subject the two people I love most to changing their lives to meet my needs. I get excited when I feel better thinking I am going to get better, but it has not happened. I feel down when things are bad and think I am on a downward spiral. I don't know how to feel with this illness since it is so irregular and unpredictable. It is almost like this illness tests us consistently just to see if we can make it and not go completely insane. Right now the screeching in my ears seem to drain me, not to mention constant and frequent dizziness. Happy, sad, nervous, crazy, crying, optimistic, pessimistic, tired, up and down.... that describes me over the last few months. One thing I do know Coach, is that your thoughtful and empathetic conversations and descriptions have helped me. Thank you for being the person you are! Jimmy
Thanks Jimmy. This is one hell of a roller coaster ride. I've gotten a lot from the people on this site as well.
...and there was me thinking it was just me. I think also part of the problem with this disease is that there are no obvious signs. Most people don't see me having the full roll on floor dizzy thing but those times you're out, and just feel unsteady, and can't hear the conversation properly so end up hardly talking all evening and people just think you're dull and uncommunicative. Those times I feel guilty that I'm kind of holding my wife back.