Discussion in 'Your Living Room' started by hollymm, Jun 22, 2011.
Way to go, Gert!
I stay home mostly all the time except for doctor's appointments except for very short trips to the store (with someone else driving), with a walker, all my meds, my cell phone, and someone to walk with me. I get more sick when I'm out. I'm very motion intolerant and I can't go being doped up on meds every day just to try and get out of my house, so I stay home on my couch where I feel a little better because I don't have to move. It's probably not the best way, but really, I force going out now and again. Just did today. Got out of the car after only a 6 mile car ride, fell flat on my face in the Target parking lot, everything spinning, just from being in the car. What else are you going to do?
I think if you feel you can get out, then you definitely should. I know being home so much wears on me. I have some anxiety and depression issues and after awhile of doing it, you get more dependent on staying home and more scared to even try to venture out of the house. It's not a good habit to get into, but sometimes you do what you have to do. Been there, been doing that for 7 years. Friends just come to me.
I should also say that when I get the blessed times where my symptoms are not "as bad" I do go out and do whatever I can in that time frame. Last year I went to 8 concerts with my friend, did a day beach trip with my kids, and some other things. After being housebound for so long, the push to get out there and try again is SO hard and full of panic for me because it's taking me out of my "safe zone" but coming from someone with lifelong panic disorder, if I can push through it and try, you can too, when you are ready of course. I like the suggestions from others about just trying to spend time in your yard, or going for a short walk (just have someone you can call if you get sick or dizzy while you are out) and then just go. And I used to feel silly with my walker. I've been using it a little over a year. People stare and it's uncomfortable but I know if I did not have it (I have the rollator with a seat on it) I would not be able to even venture out for my appointments. I'm in my 30's but I look younger than I am and people just see me with it and you can see the look on their faces like what is she doing with that? I have social anxiety and I hate people "staring at me" but I know it's probably just curiosity and I just figure my need for it is greater than what people think or if they are looking at me because of it, and I'm getting better with tuning that out and just saying screw it and using it whenever I need it. It's nice to be able to sit down and lean against the back of it when I'm too dizzy to hold myself up. Portable seat wherever you are.
Holly I bought my Mother a walker and she wouldn't use it outside for the same reason so I bought her a quad cane and that seems to do the same job without the embarrassment.
I wanted to buy her one of these.
.02 You just got a way with making me feel better First good laugh of the day!!
I'm so sorry, Shelly. Your post really got to me. Hoping you have better days ahead.
Thanks, Titus. I just started a very high dose of vitamin B2 as a migraine preventative and my pain level and tinnitus is way down. Don't know if it'll last but it's day 4 and even though I'm still on the couch and motion sick/dizzy, I'll take any improvement I can get.
Holly--saw your comment about no men here. Well, last time I checked, I was one, and while I would not call myself "housebound," since that implies I can't go out, I rarely do. Just to see doctors or do things no one else can, like sign legal documents before a notary. I rarely shop, and when I do, it's online. My wife handles all outside things--shopping, the dry cleaners, non-internet banking, dealing with service people, all telephone stuff.
For the first 2 1/2 years after I got Meniere's, while my symptoms were tough and attacks frequent, I refused to accept reality. I walked several miles nearly every day, would go grocery shopping and such with my wife, even had the occasional lunch in a restaurant with a friend or two, and <gasp> with earplugs, even went to some college football games here in town (UCLA and USC.)
Toward the end of 2005, things just got really bad. Over the next few months, I stopped doing all of those things. It has been over 4 years since I went to a restaurant for lunch. I never walk anymore, except up and down my driveway and in our backyard, and always with a cane. I spend my days in my room, which my wife super-insulated to minimize sound for me. I watch TV and do computer stuff or read my Kindle with BIG print since I have eye issues as well.
I am not depressed at all. I guess I am a fatalist. Going out causes pain and massive symptom increases, so it has no appeal. Having fashioned a narrow life that works for me here in our home, I am content. My wife, less so, but then so many burdens that used to be mine have fallen on her over the years that I feel very guilty.
And, not to end on a really down note, the reality is that if something were to happen to my wife, I doubt I would long survive her. There would really be no point. Our daughters live far away and have their own lives, and I would not saddle any of them with me. My greatest gift to them would be a graceful exit, since I have decent life insurance and some other investments, and it would make me happy that I could do a lot for them in this difficult world in which we now live.
But until that happens, being home for me is just fine. Mind you, if I COULD go out more, I would. It is not mental with me. It is ALL physical. And the cost is just too great to make it worthwhile. This is just anecdotal, but I wanted to weigh in as a male here, who very much misses his pre-Meniere's life but has come to terms with things as they are, as much as possible.
POP!! I apoligize to - Jaypr, Max, Hank, .02 and you Brownrecluse for that comment. It took me a minute to get my foot out of my mouth.
I feel for you. The honesty you bring to this thread is heartbreaking. You are so lucky to have someone who understands and does what you cannot. Being alone, I am forced to do things to take care of myself. I do go shopping meaning food shopping when it's absolutely necessary. I have to go to doctors visits and there have been many times I've cancelled at the last minute because I couldn't get out the front door. I am lucky that I have a computer, TV, telephone and people who care in my life.
My self-induced life style in not only physical in nature. There's some mental stuff going on there too. When this disease started, I would still force myself to go out even though the results were debilitating. Over the years, I have become more and more housebound because of how the outside worlds affect on my physical being.
People on this site try so hard to help me. Small suggestions to difficult questions to answer to. I've had to really search my heart to allow the truth to come out instead of another excuse. I am now, physically and mentally unable to go out into the world and function as a 'normal' human being. I function "outside" only as is needed to survive. I accept and am content with the choices I've made in my life as you are
You sound like a very strong minded person. I'm sorry you believe you'd be right behind your wife if she were to be gone one day. I've always found that you do what you have to, can do - to survive. I can only guess at how difficult your life must be because I am able to do what I have to whereas you are not.
Thank you for adding to this topic. It's comforting to know that we're not alone in what this disease has done to our lives. I read over and over about people successfully going on with their lives even through the hardship of Meniere's/MAV. I sometimes think I'm lacking in some basic trait that everyone else has. Although it's hard to read these entries, it's good for me to know that I'm not missing something that others have. I'm living life the best I know how with what I've been given.
P.S. I've discovered on-line shopping for clothes and things, like maybe a birthday present - things like that instead of going out.
Brownrecluse....... your words are so incredibly sad, it sounds as though you feel you would have no value if your wife was to leave this earth first. I do not believe that is true....... We all have value right here on earth.....Sometimes its hard to find it or see it but its there..... Do you really think your children would not miss you?? I obviously don't know your relationship with them but do you really feel like that much of a burden that you could offer more gone than here on this earth?? Your post sounds like you have given up on life, I hope you have not...... I know this disease is terribly hard in itself and you having other medical issues along with it must be overwhelming but I want you to know I value you not even knowing you personally... I read all your posts and enjoy them....I hope you will find your value because you have one and its important.. I hope you and your wife and figure out a way to do things together even if its in the home, or backyard or somewhere where its not hard for you to be........ I will continue to keep you in my thoughts and prayers and maybe something will come along to help you find your value...
Holly, this is a very good thread. People have been honest and supportive. Thank you for starting it. I've always tried to be open with my life so it might, somehow, help others. I'm past being embarrassed or secretive about my condition(s).
More than once, members have pm'd me saying "what if your employer reads this?" My co-workers and management know my disabilities and conditions. I feel a sense of freedom when I can be honest with my fears, weaknesses, and limitations.
I knew a man who managed a home health care organization. He would do the initial visit, then assign the case to an RN, LPN, or other medical person depending on what was needed. He was called out to a house where a man was paralyzed from the neck down. The man could speak, but pretty much needed assistance for every other thing he did. When Bob went in he was prepared to see someone who was bitter, depressed, or even suicidal. Instead, he found a delightful middle-aged man full of smiles and funny stories. After about an hour of asking the guy questions and assessing his medical needs Bob blurted out, "how can you be so happy in your condition?" The man told Bob he had a purpose. His purpose was praying for others and blessing them with happiness and cheer. He said he looked forward to each new day when he would speak to someone and had a long list of prayer requests he was working on.
I never forgot that story and it's what I think about when I think I'm "less" or "not what I used to be."
For some reason this thread made me think of that man and our "purpose." Remember that book, "Pay it Forward?" Sometimes I think some little comment I make or something I post just might make a difference for someone, somewhere.......
Anyway, thanks for honesty and truth
I feel the exact same way..... We NEVER know where a person is in their personal life, emotionally speaking.... I consciously make eye contact with people when I am able to go out and with that eye contact I always smile at them...... You just never know, that one eye contact and smile might make someone who is really down and out gather the courage to live just one more day and maybe the day after that and so on..... This is really a great topic so we can open up about how we have to live our lives... Its different from day to day sometimes but the MM is always right there it seems, stalking us in a way, ready to make its move at any time to try and make life so difficult, so hard, even the little things in life our hard for me somedays the things millions of people do everyday without giving it a second thought, they just do..........
Titus, that's a lovely story--inspirational, and puts everything into perspective!
It really is a touching story...... I tell ya never under estimate the human spirit, its really something.......That story is one I will print and read on days that I feel like MM is just too hard, too much to handle, just flat out don't want to do it anymore......
Thank you for sharing that story Titus......
I have some issues coming up that I honestly don't know how to handle.
My son has asked me if his wife, son (my grandson) and her other child can come and live with me in October when her lease is up. It will only be for "a couple months, while her new house is being built". I know this sounds horrible but I DON'T WANT TO DO IT!! It'll wreak havoc on my life. My symptoms will go through the roof! I will be in a constant state of anxiety. I know the house won't be completed on schedule because it's a housing project. People are expected to give thirty hours a week to help build them. With my DIL's job at forty hours a week, Guess who will be the live-in babysitter?
I can barely leave my home much less take to school and pick up two childred at different times every day and make sure the baby (one year old) doesn't hurt himself. All the while I'll be dealing with a seven year old child.
I feel so guilty and angry. Guilty because these people are my family - I should take care of my own and angry that my son would ask it of me. The rooms are full although I could try to fill up my son's storage shed with some of the stuff.
When the baby came along I knew I wouldn't be able to take care of him while my DIL was at work. I said so after much hand wringing and guilt but it was accepted, no questions asked. Now because I'm a convenient, permanent space. I'm being asked to do so much more than just taking care of a baby for eight to ten hours a day. I know I'm being selfish but this is the only place I can call my sanctuary the only place I can control my world, anxiety and symptoms of this disease.
I really would like some input. Even if you think I'm being a selfish, mean, unsuportive bitch.
"When the baby came along I knew I wouldn't be able to take care of him while my DIL was at work. I said so after much hand wringing and guilt but it was accepted, no questions asked."
Do it again.
Holly... You have nothing to feel guilty about. You have raised your children now it is time for them to raise theirs. You have earned your peace and quiet especially since you are suffering with so many symptoms. Your gut is telling you something you need to listen to because the stress of knowing they are coming and then them being there will not be good for you. I know for myself that there is no way that I could be put in that situation and not have it affect my health.
Here in Canada you don't have to move out when a lease ends it automatically reverts to a month to month tenancy which doesn't require another years lease to have to be signed.. I don't know if the same holds true where you live.
Sometimes saying NO is very difficult, but I think you need to give yourself permission to say it now before they start counting on it. You will feel better once they know.
First and foremost you are NOT being selfish or a bitch!!! Please believe that deep deep down in your soul, you are NOT!!! We have to take care of ourselves first!! We have absolutely no choice in that, NONE!!!! If we do not, we can be of NO help to anyone else including our children.... I know the guilt you are feeling, my daughter and son in law stayed with us for about 5 days a couple of years ago while the addition was being completed on their home... My daughter was 81/2 months pregnant as well.... It was waaaaaaay too hard on me and I learned I could never do that again, never...... Even now my grandaughter is almost 4 and my son in laws mother watches her while the kids work... I cannot do it!!!
You are going to have to sit down with them and have a "talk" I'm sure as a team you all can come up with a situation that will work for all of you.. Not being able to babysit when your other grandchild was born needs to be brought to their attention and hopefully they will realize it would be an impossibility for you......Have them read the spoon story, have them read before you judge me, tell them how much you love them and you will help out in anyway YOU can, (only what YOU CAN HANDLE)... Things like this have a way of working themselves out, they really do..... NO GUILT!!!!
We did not ask for this, we do the very best we can, noone can expect more than that........I totally understand every word you wrote, I get it, so will they.........
I will be praying for you that all will be fine, because it will........
Take GOOD care, Leanne
Holly, FWIW I'm 100% in agreement with Gert, Caroline and June..well said (all of ya!)