What you are about to read is very personal. I’m not even sure if I should be writing it. Please, do not judge me, and do not pity me. I will get through this, but I hit a big bump in the road today…and found out it was a sink hole. It’s going to take some work to pull myself out. But I know I can.
Do you ever have one of those days when you wonder if it’s even worth it?
Yeah, you know what I mean. The thing you don’t dare talk about.
How can I think that way? My life isn’t that bad. There are so many people who have lives that are so much worse than mine….but maybe, just maybe, they are stronger than I am. Or maybe I just want to feel like someone who can do something is listening.
I had the most lovely dream last night, I won’t go into the details. My husband just doesn’t understand why I let dreams get to me so much. It’s just a dream…but I know it’s my subconscious trying to tell me something. Some way to help.
Then I woke up, and realized that I was still here. And dang it, I can’t hear again. Then Stuart tells me that he talked to Dr. Gray’s appointment scheduler, and they were trying to get me in sometime in January, but it just doesn’t look like it’s going to work and they don’t have their February calendar open yet. What? It’s the middle of January, and you can’t give me a February appointment? That is just too frigging unbelievable to me. And yes, I know that they are busy, but I’ve been trying to get someone to help me since December 4th.
Well, everything went a bit down hill from there. And again, I won’t go in to any more details. But today has been a very bad day. After my complete melt down, I tried to sleep. I kept waking up. I was having the weirdest dreams…these dreams I don’t think meant anything. They were just weird. One dream, I was stuck looking at a recipe on how to make Sauerkraut. I know how to make Sauerkraut. I just told my husband today that I needed to start a new batch tomorrow, but I don’t think I needed to just stare at the recipe for the whole time I was asleep. Another dream, I missed jury duty because Stuart told me it was the wrong date, and they were going to arrest me. In that same dream dog poop was legal tender. They didn’t understand what checks were. I was so confused, and so grossed out at the same time. (but dogs were treated very well)
I’ve cried so much today that I feel like I have blisters around my eye lids.
I scared my husband today. I feel so bad. I do wonder if it is really all worth it. I very logically think. The problem is with me. If I were not in the picture the problem would be gone. Simple. He completely freaked. I’ve never seen him so freaked out. My husband is always so calm and collected. When I’m having an attack and thinking the world is ending he is my rock, and I saw the rock cracking.
I guess the problem wouldn’t be gone for him, not like I thought it would, I just never believed anyone could care for me that much. I need to realize just how it would hurt him more if I were not here. I may be a lot of trouble, but I’m his trouble, and he’s much more willing to deal with that than dealing with not having me here. My mother died over 17 years ago and I grieve for her every day. I never want my husband to hurt that bad, and I saw that horror in his face today. I have to find a way to deal with all of this better than I have been.
Some days I feel so strong. I feel like I can handle anything. Then other days it will only take a feather to knock me over. On most days I will think, how could I even think about such a thing? But then everything will just come crashing down again. I don’t feel like I hold things in. That I don’t allow myself to feel. But my husband and therapist say I do, then everything comes down at once.
Things will get better for a while now. I know they will. But I really need to be careful and not let things build back up like this.
Stuart and I are going to work very hard to find an outlet for us. To try to not stay cooped up in the house all the time. We need to find a place where we feel safe, welcome, and where there are people who have similar interests that we do.
Please, don’t worry about me. I’ll be fine. I have a good support group to help me. I’m only writing about this, in case it may help someone else who may have some of these feelings.
Picnic with Ants 
I think it´s good that you write aboute everything connected to being ill like this. It´s so important to talk about the worst thoughts and feelings and talking about it really can help others. I´m sure! Feelings of meaninglessness and of having a life not worth to live comes along with Menière for most people, more or less. You have to share the thoughts with someone outside who can give perspective and help. Our relatives can take care of our bodies while having an attack, but taking care about our minds when everything is meaningless can be too tough to stand for anybody who loves you. I´ll try to translate some words that have helped me – When you feel bad you can feel like your drowning and sinking to the bottom but “You have to sink all the way to the bottom so your feet can reach the bottom and help you take off for your journey up again”. (I hope you understand my swenglish!)
I send you a big hug!
Susanna
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Susanna,
Thank you so much. I really wasn’t sure that I should write about it. I told one of my friends and she reacted so differently than I expected. I felt judged.
This is a very difficult thing to go through. Especially, when you have been through many other challenges in your life, and now I have this to deal with too. (I thought I was free and clear after having cancer at 15, surely, that was it for me for a while. I will say I thank god that I still have no signs after 32 years. But dang, did I really need another challenge?)
At one point in my life I got in my mind that when people die you go to a place that has levels, you can decide to stay on that level and live out your afterlife, or you can decide to go back and live another life and see if you can progress to another level, however, you do take the chance of loosing some of the levels you have already gained. You get to choose, what kind of life you will live. Choose an easy life, and if you come out a good person you rise just a little; a hard life, and you come out a good person you rise many levels. (of course, if you come out a bad person you go down to less attractive levels.) I used to say…I really must have wanted to fly through all the levels at one time and reach the top if I chose this life to live.
I hope that makes sense. It is just a silly little story, but one that helped me get through some rough spots. I keep thinking, I must be living this for a reason, and if I can do it and keep my heart true, stay a good person, I will be alright.
Yes, I understand your swenglish! I just hope I don’t drown before my feet hit the bottom and I can launch myself toward the surface. : )
Thank you for the virtual hug.
Hugs back to you.
wendy
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Wendy,
I won’t be hurt or insulted at all if you don’t want to post my reply as it is just a personal reply to you. We have never met each other yet I feel I know you personally. We have been through the same trails and tribulations and together we will rise victorious. We will not let this disease beat us. We will win. It may not be today or tomorrow but in the end it always works out. What you need is the assurance that there are better days ahead and I assure you there is. I found my assurance in Jesus. He always there for me whether I am puking my guts out for hours in the bathroom or peacefully reading a book in the sun. I know that he is there and i know that he has an awesome future planned for me. There is a huge comfort in KNOWING that things will be alright one day. I wish I knew of a cool church in your neighbourhood with uplifting music that would encourage you. Please try to find one. You have way more in the south than we do here that’s for sure! I will search the net and check some resources for you. In the mean time, eat, love and pray!!!
Again, you don’t need to post this. Just know that I pray for you everyday!
Deb
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Deb,
Thank you very much for your heart felt reply.
We do have a little place we go to sometimes, and we are talking about going back more often. http://www.eruuf.org/
I’m pretty comfortable there, but I don’t think I should say it’s a little place any more, it has gotten pretty big. That is actually the biggest reason we don’t go more often. Neither, Stuart nor I feel comfortable in crowds, especially people we don’t know. But I think this is something that we need to do. Something that will get us away from focusing on my disability, and with more like minded people.
After the bad day I’ve had today, we may not make it tomorrow, but we do plan on going more often. (I am trying to build up the spiritual side of me too.)
Thank you for caring.
wendy
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First of all, really big and comforting hugs to you and Stuart. This is not an easy subject to acknowledge, never mind discuss.
It happened to me about 1 or 1 1/2 years after I first got sick. No one could tell me what was wrong with me. I had lost my job because I was unable to return to work. I was running out of money and knew I’d have to move out of my apartment. Just big time stress on top of the unnamed illness. I was lying in bed and thought about dying and for a few seconds it seemed like the answer. Then it scared me so bad that I had gone to such a dark place in my mind.
I am normally an optimist; they’ll figure out what’s happening to me, I’ll get back to work, life will return to normal, I’ll be able to deal with the hand dealt to me. But, sometimes darkness does enter the picture.
You said “On most days I will think, how could I even think about such a thing? But then everything will just come crashing down again.” I think those of us with a chronic illness think about the future and what may happen. We have a chronic illness and we are forced to look at the future through different lenses than what other people do and we have to do it seriously and at a younger age. It’s scary. It’s not a good scary of hopes and wishes and dreams.
I have to admit, I’m afraid of what the future will hold. I have a support system around me but I think it’s natural to look around, see what’s happening and look forward. Especially at times when we are feeling more sick and more stressed. But, you’ve got your support system and you guys are trying to find ways to deal with things.
I feel like I’m rambling now. I hope what I’m saying makes sense because I’ve got a cold and really, when all is said and done, what I want to say is you’re not alone in thinking this and {{{{{big hugs}}}}} to you both.
Maureen
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Maureen,
Thank you so much for sharing your story.
I’ve been reading some studies that say that the suicide, and attempted suicide rate for Meniere’s patients is very high. Of course, I can understand why.
It’s called “A Disease of Random Punishment”, we get the same feelings that someone does when they live on the front lines during a war. The fighting isn’t going on all the time, but you are always expecting it. The fear is always there.
My goodness, I still sound like I’m about to off myself don’t I? Really, I’m not.
I got a taste of what I thought my future was going to be. I was “normal” for 10 days after the procedure. We even started making plans to start fostering. Of adopting. (that’s what my dream was about, they were bringing us a child.) How can I make plans for the future now?
Even if I have the procedure done again, and it works…if I start feeling better….how can I trust that it will stay? How can I not continue to live in fear every day?
I guess sometimes a little fear is a good thing. If you weren’t afraid to cross a busy street you would get hit by a bus. So, I just need to remember, my fear just needs to be in relation to what is going on. Am I having any signs that I might have an attack? No? Then enjoy your day then dang it!.
Thank you for the ramblings.
I hope all your days are balanced.
wendy
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i think it’s so courageous that you have chosen to share this with us. it needs to be shared. i think most meniere’s sufferers have been there before. i know i have. by sharing this, you are allowing other people to know that it’s normal to feel this way and that it will pass. more importantly, that it’s okay to talk about. we should not be ashamed to talk about feeling like ending it all is sometimes how we feel. what’s great is that you give it perspective. when you mention losing your mother and how that loss can NEVER be filled for you, you make the rest of us understand how we would affect our loved ones. they are the ones who would have to carry on. we have too much love for them to do that. i like to think that’s one of our gifts.
on a side/medical note, i wonder if the weird dreams have anything to do with the topamax that you started. or even if the feelings you are having have anything to do with it. i know you have been on it before and that there is more to the story so i’m just guessing here but it popped into my head as i read your post. when i first started it, i had the craziest dreams! i don’t remember any anxiety but if memory serves, i think it can do a number on some people.
thinking of you and wishing you better, happier, stronger days ahead.
~nicki
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Hi Nicki,
Thank you for your wonderful words. You made me cry the most….no don’t take it that way, mentioning my mother always does that, and realizing what I was doing to Stuart really tore me up.
I didn’t sleep well last night, so today has been rough. Not like yesterday…but a rough day. I just need a good, long, sleep….and let’s reevaluate in the morning.
Yes, I do think some of my later dreams were drug induced. I don’t know if it was Topamax or not. I’ve been on this before, I don’t remember wicked dreams. But I took my regular meds way off schedule yesterday and I think some things were taken too close together. Plus, I forgot to take the Vitamin C with the Topamax so I got that stupid tingly feeling in the middle of the night. I hate that feeling, like just a little select part of you is trying to go to sleep. ick. (I did drink a swallow of Diet Coke today and it tasted fine, so I wonder what’s up with that.)
It’s very hard to figure things out with me and medications and what is normal depression with this and what if I might be a little off with my bi-polar meds? I think it’s normal to feel the way I’m feeling, but who knows, maybe I’m feeling worse because my bipolar meds aren’t quite right. Well, as Stuart said, we’d really know something was up if you were all giddy and happy! : ) at least we can still joke about it all.
Thank you for thinking of me.
I hope things are going well for you.
(I think the weather may be changing a little today, I’m getting a heck of a headache.)
wendy
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