I find that the mornings are emotionally very difficult for me. After sleeping during the night, when I wake up I forget that I am ill for a whole 2 seconds and then I remember. This happens every morning. Each and every day, I just cannot believe that I am still ill - it is such a surreal feeling. I just cannot believe this is my life. I do eventually get out of bed to walk onto a rocking floor and feeling exhausted and flu-like, despite sleeping fine. I do get out of bed, but I just feel so saddened by all this. I finally make it downstairs (no easy task), have my cereal (which is all so hard to do), and I will push myself to go outside to my backyard, as the weather is beautiful today. Do others get that feeling everyday that you just cannot believe any of this? It is just so darn surreal. I guess hope will get us through this. I need to think that this will end, as I cannot live like this forever.
I know the feeling that you are talking about, I just don’t get it every day. Most days I wake up fine, but then there are the days that I struggle to sit up straight when I wake up. Then I have other days, where in the middle of the day, sometimes in the middle of some event, I get hit by a dizzy spell and I react the same way as if I was just getting out of bed.
How do I deal with it? I am still trying to figure that one out like you. I pretty much start cussing, not again, and start cancelling plans. My wife is completely blind and very supportive of my circumstances, she keeps telling me this is the initial phase of emotionally dealing with a disability (I hate that word, but I am learning to accept it) and that at some point I will move past this stage and just accept it. She has been through it and many of her friends have been as well.
For me, the biggest frustrations is that I am going to have to give up on most of my goals and dreams in life, and how I am going to support my family. Just not knowing what is going to happen to me and my family. Once I get the insurance mess and the income straightened out, I am hoping that I will be able to accept this more.
Brian
Hi Lisa, my mornings are the worst for me, although it doesnt generally get much better during the day. I wake up almost every morning with an anxious feeling and dizzy before I even get out of bed. I stumble through my routine trying to avoid my wife and kids because I am frankly unpleasant to be around. After breakfast my anxiety settles a little but then I take an ativan to help it settle more. Then my routine is more of general dizziness, weakness, and imbalance that increases with movement or activity. I try to push myself to get out, whether to work or just out, which does help sometimes but it is hard most days. I too cant belive that this is what my life has become and it makes me sad for the rest of my family not just me, BUT I do beleive that we will all get better, maybe not cured but better and find ways to enjoy life again…I just hope it comes sooner for us all! Ben
Hey Lisa,
I can totally relate, although outside of riding in a car, I never forget that I have this illness. I go to bed rocking, am awoken multiple times during the night with dizziness, until I am finally woken for the day too early by the dizziness. As much as I feel emotionally devastated when I wake, I am somewhat relieved the horror of the night is over. I just keep telling myself to just get through the day without trying to lose hope for the future. I go through all the range of emotions throughout the day… anger, sadness, hopelessness, and I do take a lot of it out on my mom, who has been with me every step of this journey. Literally every step. I really am working on not doing this, but sometimes I need a sounding board. I know exactly how you feel, and I wish I had better answers. I think once you start seeing just a little bit of light (maybe through meds when you are ready and able) that will be enough to keep you going. When things are really bad and I am feeling at my worst, I just try to remind myself that nothing ever happens, I’ve felt this before, and I get through it. What a way to get through life.
Hang in and let’s try to hold on to hope as others have gotten better and we will too!
Warmest,
Lisa
Guys
Even though I’m travelling and my life seems very rosy, I still wake up every morning feeling exactly the same. Oh god, another day of feeling like crap. It is really hard to push on and I go through phases where I have more energy to battle it than others. At the moment, I’m in a real low patch, emotionally and physically and things are tough, espeically with the Topa trials. I have actually been having real dark thoughts, that I dont normally have and this is m life forever, how will I have a family woman blah blah and why dont I just jump off a cliff.
But lets be POSITIVE. I can tell you, even though I’m in the dumps now, I have been 100% well once! For a good 18 months I was totally normal. I was drinking and parting and having great fun! I feel lucky to have had that. I’ve been back in the dizzy saddle for 16 months now - far too long, but I guess patience is the only thing. Try not to dwell on it, hard I know and occupy your mind. Most important of all is make sure you laugh a lot!
I wont be online for a bit, but I hope this gives you some inspiration and hope that it is possible to feel well.
Thanks everyone for the kind words. I honestly don’t know what I would do without the support of this site. Lisa, I can relate to taking things out on loved ones. I am just very angry most of the time. Ben - I also avoid my husband at home at times, more so, because I cannot walk next to him. If anyone walks past me, I am thrown off even further. I guess my husband is just an additional stimuli that my brain cannot process right now. but, thankfully, he is very supportive. I feel like I’m constantly mourning a loss. In this case, the loss is my “old life.” I will try my best to hang on to hope. Brian - it is very difficult to accept this illness, especially because it is hopefully temporary. I guess it is good at least if we can accept our current state. I am going to try to go back outside. Sitting in the sunlight helps my mood a bit, and I’ve been trying to read. It is difficult to adjust my eyes to reading, but I do it anyway, as difficult as it is to read.
I can relate to all these feelings too. I’m currently telling myself “I will get better, I will get better, God will help me” about 100 times a day. Do any of you have moments when you feel normal? I do, no matter how short they are they give me hope!! I think we all need to be careful of the big depression monster it makes this so much worse! Fear is an almost constant companion of mine, so I have learned to keep people around me almost constantly, it helps.
WE WILL GET BETTER
Tammy
Thanks, Tammy. Yes, hope is crucial. I have been so sad that I am very withdrawn and actually don’t like when people are around me, except for my husband. I find that it is so frustrating because my eyes cannot focus on anyone and my dizziness becomes even worse when people walk past me. I swear - even if someone blinks or moves in the slightest way it throws me off more. That being said, I’m sure it doesn’t help my depression. It is good that you are still having people around you.
You know it is funny or odd , whichever term you want to use, but I am better first thing in the morning because it seems that my symptoms get worse during the day and towards afternoon so mornings are better for me.
But as the day wears on and symptoms and especially the anxiety kicks in it is tough, really tough many days.
I like all of you wish for my old life back or a least a glimer of it at times. I rarely go out these days as I am afraid to go out alone for fear that something will happen. Mind you I am not convinced that all that is wrong is just MAV , perhaps I am wrong but I am pretty in touch with my body.
I look at the world around me and see folks living and know that is not what I am able to do these days. How do I get going emotionally every morning, the only thing that gets me through the day is a faith in a higher power and knowing that everything happens for a reason. Right now I have no idea what that is but I will keep searching and trying to find out the answer to that question.
“This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.”
Timeless- thanks for the kind message. My symptoms actually get worse and worse and worse as the day progresses. But, emotionally, I find the AM very difficult.