I have Meniere's Disease
I have a disease!
I don't think I have ever said that before. It is not something I like to admit to myself. I have Meniere's Disease. An invisible disease that is very debilitating and life-changing. Not only for me but for my family as well. I have tossed around the idea of writing this blog for awhile. I really don't know why I have decided to. Maybe I can help somebody else, maybe somebody can help me, maybe both. Who knows, but I'm feeling an urge to write it.
I once read where a Doctor said Meniere's Disease is the worst disease that won't kill you. There have been many times when I thought it was killing me though. So many times when I am lying on my side with a bucket wedged under my face to catch the vomit because I can't move a muscle (especially my head) without feeling like I am doing backflips. I have no idea if I am falling off the bed or even where the edge of the bed (or car seat or wherever I have had the attack) is because everything down to my soul is spinning uncontrollably in outer space. I can't close my eyes through this, it only makes things worse. So I lay there for hours on end, spinning, vomiting, sweating, so tired but unable to close my eyes. This is so draining and makes me tired for days after.
That is a vertigo attack caused by Meniere's Disease and I have had more of them than I care to think about. I have had them at work and had to be taken downstairs in the lift in my office chair while vomiting into a bin. I have had to pull over in my car and lie on my side in the car, vomiting as there is no way possible for me to open the door because I would fall out on my face. I can't even manage to wind the window down and put my head out. I can't lift my head once the attack hits.
I remember saying to my hubby after one of these attacks, that anytime in my life when I have complained of being sick, even the two times that stand out in my mind when I had a really bad flu and ended up in Intensive Care in the hospital, that was not 'sick'. I have never known the true meaning of the word 'sick' until this disease. Such a tiny, almost pathetic sounding occurrence causes these attacks to happen and yet it has such a huge impact on my body, mind and life. A little sac in my ear fills up with fluid and doesn't drain out like most people's. So it fills and puts pressure in my ear, my head, on my eyes and causes so many symptoms. It doesn't sound so bad, does it? One tiny little sac filling with fluid. It feels like it is all of my head full of water. The pressure is unbelievable. It actually affects my whole body in many different ways.
With every attack, I lose more of my hearing in the affected ear and more of my balance. I have lost most of my hearing in that ear now. It surprisingly leaves you sensitive to certain pitches of sound though. It distorts your hearing as well. I remember in the first couple of years of having this disease each time the fluid was building in my ear, I couldn't listen to music. When I did I could only hear certain instruments and the tune was followed by a delayed whistle. It was the strangest and most annoying thing to hear. This was before I lost any of my hearing and doesn't happen anymore. Now I might not hear a person talking to me if they are on my deaf side, but I find the noise from a person across the room clicking their pen almost unbearable to tolerate. Certain squeaks and high pitched sounds actually make me dizzy. Certain sights make me dizzy, like a room with a checkered or heavily patterned floor, would be impossible to get across for me. Some lights make me dizzy. Fast head movement makes me dizzy. Blowing my nose makes me dizzy and I have hayfever a lot so this is a regular occurrence. Sooo many things make me dizzy and can trigger an attack.
Our bodies are amazing. Because my ears cannot keep me balanced now, my brain has taken over. It keeps me balanced by lining me up with horizontal objects in my sight. If one of these objects are moved without me knowing, I am likely to have what is called a drop attack and fall to the floor. If I move the objects myself, I am usually fine, because my brain is prepared and knows it is going to move. For this reason, I can't be in a chair with somebody leaning on the back and moving the chair on me, even slightly. I can't be on a lounge with somebody who is moving around next to me. I can't ever be in the compactus at work. It has gotten to the stage that I can't even move the compactus myself now. Some days these things bother me more than others.
I have tinnitus (ringing in my ears) 24/7. It never stops. I have three sounds, one is like a washing machine, the second is similar to a field of crickets and then there is a high pitched piercing sound. They go all day and all night. This one symptom almost drives some people insane. For me, it is the least of my worries. I have learnt to ignore it. It's not that mine isn't loud. It's louder than the tv or anything going on, I can hear it over busy traffic. I have just learnt to ignore it. I can let it get me down by thinking about it, but I choose not to. I guess we are all different and there would be other symptoms that don't bother others so much but really get me down.
There are so many other symptoms with this disease. It comes with insane jaw, head, neck and shoulder tension. My eyes feel like they are bouncing some days and I start seeing odd colours here and there. I have eye tension, unbelievable brain fog, and anxiety. It messes with my depth perception. If I go to step down the gutter or stairs it is hard for me to judge how far down it is and I often step too hard thinking it is further than it actually is. When I walk up a flight of stairs, I am fine for the first 5 or 6 steps and then I start kicking the step as I'm not lifting my feet high enough. I actually have to concentrate and cannot just walk up stairs while talking to someone or not be taking notice of what I am doing. A new symptom that has just started in the last couple of days is dizziness when I look into a mirror. I guess this is a depth issue too. I sway a lot when standing still and stagger a little sometimes. I try to avoid having to be in a queue. I move around all the time so that people don't see me swaying and think I am drunk.
Dark rooms are not fun. I have no balance at all in the dark, because my brain cannot line me up with horizontal markers as I can't see them. I trip and stumble a lot in the dark. For this reason, I sleep with the light of my essential oil diffuser on the bedside table all night and always have a light on somewhere in the house. If I wake through the night when the power has gone out and everything is dark, I get the spins immediately. This is enough to trigger an attack sometimes.
Overcast days when the pressure changes, are not good days for me. It affects the fluid in my ear. Too much salt also messes with this fluid. I can only have 1100mg of salt in a day and that has to be spread throughout the day. If I eat too much in one sitting I try to drink a lot of water to flush it through and dilute it down a bit. It seems to help. Sugar, caffeine and other foods also make things worse for me.
There are so many symptoms. I am trying to think of some others, but I don't dwell on them and like I said earlier, our bodies are amazing and seem to compensate in other ways to overcome symptoms. I have come to think of some of the things that happen to me as normal. I just don't think about it. I get about my day and try not to let this disease interfere with it until the vertigo hits of course. There's no pretending I'm normal when it hits.
At this stage, I am still working a 9 day fortnight with my administration job. I don't know how much longer I can do this. I have exhausted my sick and any other leave. I am so fortunate that I work for awesome people who are very tolerant of my sickness, so far. I do know that it is going to be too much to expect them to keep me employed there soon. I have just unexpectedly taken two weeks off due to prolonged dizziness. That has never happened for so long before. This is an unpredictable disease and everyone who has it has varying symptoms and to different degrees. The disease has a few stages and you think you have it worked out and then everything changes. At present, I only have it in one ear but have read where a lot of people with Meniere's go bilateral after a few years. I have had it for around 8 years now. Trying not to think about that thought though.
I guess it is in my life to teach me something. I don't know what yet. But I will work it out. I am part of a FaceBook group for people with Meniere's. Sometimes this is very helpful and other times I think of deleting myself from the group. I know what I have written above is very negative, but I am basically a very positive person. Well, I certainly try to be and these pages are just too negative for me some days. I was reading a post with a lot of comments where everyone was complaining that people say things to them like "Is there no cure for Meniere's?" and "Are you still sick with that?" or "Haven't you gotten over that yet?". These people were really angry and were saying that they just want to yell things back like "Yes, I am still sick, no there is no cure and there never will be. I have this for the rest of my life". That is just too negative for me. I am in no way, putting these people down, I am just stating that this is not the way I try to think. I absolutely know how this disease can make you think only negative at times, but I don't really want to be reading it most days. Some may call it denial, but I call it being positive and having hope. I am convinced I will come across a cure for mine. I won't stop until I do.
Meniere's can be caused by any number of issues. It can be from an allergy, spinal issues, jaw misalignment, certain vitamin deficiencies etc. My way of thinking is, I find my cause, my triggers, correct them and I'm cured, or at least have it controlled. So that's what I plan to do. I have already found things that help, but I have setbacks because I'm human. I will write another blog listing all the things that have helped me soon. It's not my favourite subject to write about. I usually write about happy things, so this is new for me.
If you or someone close to you have Meniere's Disease, please feel free to contact me if you have any tips or questions. Even if you just want to say Hi to another person who has this pain-in-the-bum disease, please contact me. Once I have written my next blog on things that have helped me I will put the link in here.
Thanks for reading
Karen xx
Related Blogs you may be interested in:
Comments
Post a Comment