Housebound v.s. 'The World'

Discussion in 'Your Living Room' started by hollymm, Jun 22, 2011.

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  1. njspingirl

    njspingirl unilateral menieres..had vns and gent injections

    Ive been through this also. Trust me when I tell you.. GET OUT OF THE HOUSE!! It will get worse if you dont do something about it. Not only will you be housebound, but you will start to get very depressed . Yes, you do feel better staying inside because you dont have to deal with the symptoms of panic. There were times i would not even step into my backyard and walk across the lawn because I would fear the dizziness and heart racing. Today, I drive and go places that I use to dread going, even with a friend or family memeber. If I get the spins, I would just sit back somewhere and deal with the symptoms. Most of the time, the feelings went away. If they didnt, I would go back to my car and go home. BUT, at least I tried. It takes practice to stay outside your little world. Please dont stay inside. So what, you need a cane or cart ! Use it, get out. You will gain the confidence to do more and more.. the more you push yourself. The dizziness gets much much worse with panic. Sometimes we fail to see this and blame it all on the menieres. In our minds we only think "what if" cant talk yourself out of doing things. You need to push yourself to the limits. In time, your time outside the house will get longer and longer. I do take xanex daily for panic . I use to feel quilty for useing it. Not any more. I feel like a better person when I can conquer a new task, Like, driving further and further away from home. Its becomes a high and makes you stronger.
  2. gert157

    gert157 New Member

    Yes Holly. SUNGLASSES like Lulu said,A HUGE HELP!!!!!!! I forgot to mention that in my post, I've been doing it for so long its second nature now.. But wear them!!! Even on a cloudy day!! My sister suffers from panic disorder and she wears sunglasses day or night, I tease her sometimes but she knows that I know why she wears them, she makes no apologizes for wearing them, they help her.....
    The biggest thing people have said here is it is conquerable, it is..... Baby steps, do what you can on your good days and DON'T beat yourself up on your more challenging days...... WE are are own worst critics, noone can beat me up as well as I can beat myself up, NOONE!! I too struggled with dr. shopping for a good therapist, they are few and far between....Today I got a call reminding me of a hair appt. I have on Sat., I immediately went to oh God, hope I can get thru that..... Lights especially in a salon or grocery store or dr. office are the worst, I hate them.. So much so when I am waiting to be seen by my dr. I shut the lights down until he comes into the examining room.....I too feel the symptoms are far worse out in public, our senses are all out of whack, its HARD!!!!!!!! Please don't give up, the depression will indeed get worse, the panicky feelings will intensify that's a "for sure"... We are all right here for you, put your feelings here it helps to talk about all of this.....Most importantly WE GET IT!!!!!!!!!
    Take care, Leanne
  3. hollymm

    hollymm Me, 'in' a tree.

    Wow! this has been a real eye opener for me!! I guess I just didn't realize how many of us have or is going through REALLY hard times getting out into the world.

    I gotta say right away that I don't feel imprisoned by my house, I feel it's a sanctuary. I love having people over and they, mostly, understand what's going on with me. I've had so many people tell me that if I need something from the store to just call them up and they'll get what I need/want and bring it to me. I have not done that yet although I do appreciate the offers. I make myself go do those things that must be done. I've even tried to drive with someone just to see how far I could go. I made it to two hours before exhaustion took me over and I had to almost litterally pry my fingers from the wheel (I think I pushed a little to hard).

    Today, a friend of mine came over and we talked about what I might need from the store. I told her I'd go if I could get past the invisibled barrier of my front door. When she left I did a mime of having a barrier at the door and we both cracked up.

    INS said something that somehow struck a cord with me. "There are plenty of happy hermits around. Homebodies. Wolfpacks of one. People living rich, full internal lives away from the busy-ness, noise and fuss of The Big Wide World.

    Holly - you have family, you have friends - you are definitely still connected to the world. And your dogs!"

    It made me feel like it's ok to be where I am. It immediately took stress off me when I read it. Oh, I still need to get out more there's no doubt about it but I kinda feel like it's not an emergent thing and that it's really ok to be here, in my sanctuary, connected in my own way with my family and friends. And being allowed by my family and friends to be that way.

    I do have a chance to go to the beach around September of this year. As soon as I was asked my head screamed "NO!". ...But I didn't say it. It'd be an overnight stay and there'd be much noise and people around (a retirement party for a very good friend of mine). The thought of leaving my house and pups for a night is very scary to me but I have the time right now to get up whatever I need to get me there. The good thing is that even if I don't make it, it's forgiven. I really do have some of the most understanding people in my life.

    I live on a culdesac and so going outside isn't so much a problem as the noise isn't bad.

    The sunglasses are a great idea! I do wear them a lot outside because I'm very sensitive to the sun and get headaches when I'm out in it too much. I never thought of wearing them in the store. I think that might help a lot. I'm going to try it today. I "have to" go to the store and get a few things.

    I hope more people read this and join in with their own stories. It's for selfish reasons of course. It makes me feel better to read them :)
  4. Titus

    Titus New Member

    I wear my sunglasses every time I go outside because the sun triggers migraines, for me. I used to carry an epi-pen because I had some bad reactions to unknown food on a salad bar. Then I started carrying Xanax because I started getting panic attacks. Slowly, I "accumulated" various fears and adaptive behavior. Finally my doctor said I needed to take regular doses of Xanax and that worked pretty good for me.

    Then a couple of years ago I started having this awful pressure in my head and ears. The doctor thought it was just MAV or mm symptoms. Now I know it's cervicogenic vertigo and my neck is a big f'ing mess. Add that to the fibromyalgia, MAV, heart arrhythmia and the list goes on...... I ended up taking meds whenever I felt like I needed them and it gets me through the day. I've missed out on a lot but the risk wasn't worth taking. I stopped flying in 2004 and probably will never fly again (unless it's from some drug :D.....just kidding, all my drugs are legal. That's not to say I wouldn't take something illegal if it would relieve my symptoms.)

    Anyway, Holly, you don't have to push yourself if the reward isn't worth the effort. It sounds like you have a great support system of people who ACTUALLY GET IT!!!!! That's rare and I envy you. My friends think I'm crazy. I can't imagine why (she says with a big laugh.) Nope, I know crazy and this ain't it. I expend a lot of effort "playing normal." Frankly, it wears me out. I went to work today and they were remodeling my building. I was assaulted with chemicals and dust. I don't know how much was panic and how much was a true reaction but it doesn't matter because I had to leave.

    Hey, Housebound vs. the World.......I think the world is overrated :D

    Warm thoughts and positive energy being sent your way.
  5. Titus

    Titus New Member

    I'm waiting for you to fly here.....please???? If I DO fly, it'll be us going to OZ......if Lee will have us. We'll pack our thera-canes and the trigger point manuals and off we go.....puking our way across the sea in hope of a cure......legs up, I'll have my Uggs on mate!
  6. gert157

    gert157 New Member

    I have never looked at my house as imprisonment either, it was and still is my sanctuary, my safe place.... Just wanted to clarify how I feel about my house, much like you do.... If it felt like imprisonment I think I would feel the NEED to get out for fear of going insane...That is certainly not what I feel.....Hell, somedays my house doesn't feel completely safe to me because I have a full flight of stairs to deal with in order to get downstairs.. There are many days I don't see the downstairs of my house.. Washer and Dryer are down there, but husband carries laundry baskets up and down for me and I can deal with the laundry upstairs....
    I have read all the posts on this topic and it really does touch on 2 ways of handling what you are talking about... Either stay at home and don't kick your own ass for it or push yourself abit to get out and do small things, totally your call..... I do worry about you getting depressed though because of the isolation.. I find Menieres an isolating disease to begin with and then feeling the need to stay at home I fear the risk is higher to feel even more alone... You do have a good support system though, HUGE!! You are blessed there for sure......
    At the end of the day we just do what we have to do to survive and get thru this hellish disease
    On the days I feel I can handle going out and I do so successfully (no major MM symptoms) I do feel a sense of accomplishment, it makes me feel good about myself.... I will look at my husband and say "I did it!!!" I used to say right after that, isn't that pathetic that I feel I conquered the world by going to the drug store without an episode.. I no longer feel that way or think that way, because I've come to realize it IS a big deal for me, its HUGE!!! If people who do not have this f#$%ing disease only knew what our lives truly are, how difficult the smallest of tasks are for us, but they don't and never will.........
    Wishing you days of peace ahead, just do what you feel you can and then say screw it to all the rest..............
  7. jaypr

    jaypr New Member

    I Used to live in Perth it is beautiful
  8. Imnoscientist

    Imnoscientist New Member

    Holly - in many ways you've created the perfect world (except for the shitful bit about being really sick). You've filtered out all the crap and the best bits of the world come to you! And with the interwebs and everything these days there are even more ways to stay connected with what's going on.

    So much is perspective - as long as you're in sanctuary and not prison it's all good. When you need to get out, you will. You are one strong lady and nothing will hold you back! Also you can take one of the pits with you and people will get the f*ck out of your way!
  9. hollymm

    hollymm Me, 'in' a tree.

    INS - You crack me up!! When I do take both the pits with me, people really do sit up and take notice! ;D

    Intrepid - you're right on about two opinions going on here. It's the balance I guess that I have to find for myself. The biggest hurdle to overcome is the one I read thoughout most replies on this entire website; the outside affects us/me tremendously and we have to find ways to overcome that. But I see that I'm not crazy - unless everybody else is too :D

    Gert - We are on the same track it seems. I always feel a sense of accomplishment when I leave my house to do anything. Always glad to get back but I tend to give myself a little pat on the back ;)

    Baby steps - going to the mailbox, making simple trips, getting out in my backyard are not to bad for me. It's the long trips and the doctors appointments and the noise in theaters or resturants - even the 'slow' hours are hard for me to take. Going over to a friends house is difficult too. I have a tendancy to make my stays pretty short - when I do go (rarely, very rarely)

    I think the thing I miss most is going on trips or outings with my sisters. The Avatar (at the beach in 2010) was the last real trip I was on and it was extremely difficult. I even broke down once pretty bad. My sisters took good care of me, I wouldn't have make it out the door otherwise.
  10. Imnoscientist

    Imnoscientist New Member

    I saw a couple of Australian movies recently (low budget ones so they probably won't make it OS). One was called Gryff the Invisible - about a guy who lives in a fantasy world and is bullied for it, and one called Mrs Carey's Concert - a doco about a girls' school where they all have to participate in a huge musical each year, whether they want to or not.

    The take home message I got from both (although I wasn't meant to from the second one) was to create your own life and be happy with it. F*ck what everyone else says you should or shouldn't do.
  11. Imnoscientist

    Imnoscientist New Member

    Maybe she was just conversating. People like to do that.
  12. hollymm

    hollymm Me, 'in' a tree.

    I want to be like I 'was' and find I can't. I try to be like I 'was' and find I can't. My intent was to talk about how people felt about it, how they overcome/overcame it and maybe some suggestions on how to potentially get back to some semblance of what I 'was'. I'm not unhappy in my current situation but I do miss the outgoing, traveling, going out with friends person that I used to be. Maybe I haven't come to terms with what I can't do anymore. Maybe I'm wishing on a star. I'm not asking for confirmation - just discussion on peoples thoughts and lives regarding being housebound and living with this disease in the outside world.

    It could be that those who have been able to rejoin the world in some fashion don't suffer Meniere's as dibilitating as they once did. They've found something that helps them reduce their symptoms or relieves them completely. That's something I'd like to know too. Not everyone who posts on this board have the same symptoms in the same descriptions or depth. I know I sound like I'm defending my purpose and maybe I am but I believe this to be a conversation worth having and I'm glad that people have responded. It's helped me feel that I'm not alone and that most have suffered with this 'side-effect'.
  13. CarolineJ.

    CarolineJ. New Member

    For me I have had to give up the dream of being as I once was to move on to what I can be. We all know that it is not easy and some days it is impossible but that is all part of our individual journeys. We just keep pushing forward and doing the best that we can on any given day.

    I really think you got some excellent responses about being housebound and it is always nice to have the support of people who have experienced the same problem/issue. ;D
  14. June-

    June- New Member

    I know I am glossing over the nuance but my suggestion is, that whatever you want to happen you take one very small step in that direction today. Not tomorrow, today. Just one very very small step towards whatever you want to be able to do. Tomorrow never comes. We can only make progress today. It will be easier than you think.
  15. burd

    burd New Member

    You aren't alone Holly, not even close. For 3 years I was afraid to leave my house. I did but it was only for necessities, only a few miles from home, and I got back home as quick as I could. What made it become easier then was taking the "what if" fear out of going out. Having a plan in my head for the what-if's, having what I needed with me for the possibilities, and that took away a large portion of the fear. Making myself go out, short lengths of time, then expanding. I worked up to day trips, then a short camp trip close to home, then a longer one farther away, then a road trip out of took years to get that freedom back. I did start getting better and a sense of control, which has been good for me. I still have restrictions on how I travel, but I am able to do so. I still plan for what-if's, but I lost my fear and now my independence is 2nd nature. My steps started small and it took time to get here. You will too. :)
  16. June-

    June- New Member

    I like an accounting method too. For each day you take a step towards achieving whatever YOU want to achieve, add a paperclip to a chain or put one of those little fruit stickers on the calendar or make some other simple visual means of accounting. The tiny steps rely on consistency. Like turning the pages of a telephone book. Only one thin page a day but at the end of a year, you've got something.
  17. hollymm

    hollymm Me, 'in' a tree.

    Now that was some good feedback for me Sarita - thanks!

    I know you've had issues too. Was it more mental or physical with you? I mean were you able to get to some of the symptoms and alleviate them or was it attitude?
  18. hollymm

    hollymm Me, 'in' a tree.

    Sorry my question was to personal for you to answer. I do however believe you brought quite a bit of your personal experence in your answer. I don't mind deviation from the topic a bit. I think we could get it back on track. Don't most of our topics go off for a while?

    At this point, my physical runs my mental responses in regards to staying home. I know what's going to happen physically and so do what's necessary to limit that response. As I've said before, I'm not unhappy with my current living situation - I am glad I like my own company though :D

    By the way, I like mind/body/brain ... stuff ;D

    June - I think that be able to tick off your accomplishments is a good thing to do. On those bad days, it's good to look back to see what you have accomplished and remember it's just a bad day not a set back.

    Burd - I know how hard it's been for you. You have so many triggers that you don't have control over once you leave your house. To see how you've overcome all of that to do what you want is a huge accomplishment in my book.

    Whoa! This screen is starting to look inverted - I think I need a short break from it...
  19. Titus

    Titus New Member

    After I returned from walking today, I had a vertigo episode. I wouldn't call it a full-blown attack but the kitchen started spinning when I moved my neck to look in the sink. They I was totally off balance. I noticed that my neck hurt more than usual. I've been dizzy all day with short spins and very off balance.

    I did not expect this but think it might be a result from too aggressive physical therapy. My head has the familiar band around it. I woke up with energy and a plan for the day but ended up in the house, not able to go out.

    I wear progressive lenses and they are giving me a headache. I can't put my contacts in because I'm too off balance.

    How I feel a migraine coming on.

    This is one of my bad days. I won't leave the house.
  20. hollymm

    hollymm Me, 'in' a tree.

    I'm sorry Kim, but hopefully it'll go away soon. Do what you need to - dark room with a puke box or not. I feel for you sweets. come back soon...

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