— Begin quote from “MAVNY”
Rich and Joan,
Thank you so much for these incredibly wise and kind words. I am far from where you guys are, but I am trying to navigate the world a bit more. Just a bit, such as short trips to supermarket, getting a haircut, etc… yes, very exciting life I lead. I always get so demoralized as anytime I go into a busy environment such as these my symptoms exacerbate from my pretty bad baseline. I get so upset and beat myself up, thinking I will never be able to do these simple things in life that others can do so comfortably. I will try to apply your words to where I am in my journey as well…
— End quote
No problem whatsoever. I read your post here and think to myself, wow, you are getting out to get haircuts, the supermarket, etc! When I first had my big MAV crash back in January last year, I could not go anywhere! I was completely housebound for the first few months and in fact I spent much of my time in bed. I look back and I can’t believe just how bad it was. The first time I got out, it was to rent a video. I just went there, got the video, and came straight home. I had to sleep for 5 hours before I could even watch it because I was so exhausted from dealing with the disequlibrium, the “spongy” feeling of the ground, the “visual sensitivity”, like having the world coming at you at 100mph but the reality is that everything is normal, and you simply can’t process the information, and the intense light sensivity. Those were just my surface symptoms. Nevermind the valsalva induced dizziness (like from blowing my nose, coughing, bending over, going to the bathroom, etc), brain fog, head vibrations, ear pressure, my God I could go on and on. So, the fact that you are getting out is a good thing, even if it’s only on a limited bases. I was so disabled I thought I was done for sure. I couldn’t walk more than 8 or 9 steps in a row without feeling like someone was violently shoving me in various directions, or feeling like the ground was falling out from underneath me. I would almost fall over in the shower. The point to my rant is that now, I can do just about anything. I do manual labor for hours on end and I feel nothing If I can get well, I honestly believe that anyone can. I do consider myself to have been a particularly violent case, as did my doctors at Johns Hopkins. The key is of course not to give up, and to not believe, but KNOW that you will get better if you keep trialing meds, and keep working hard to make sure that this thing doesn’t win. If you do, it can’t win, it just can’t, because eventually you will find your med or med combo. I’ve seen some sick people here, people sick for more than 5 years become very well just by finding the right medication or combo. Keep at it!