Carving Out a Life for Myself

I have had to make some adjustments in my lifestyle.

I tried driving; at this moment, I get nauseous and dizzy if I am in the car too long.

I tried getting jobs; it seems almost anything I try makes me dizzy and exhausted.

It's stupid, really.

It's not like I have some ominous disease. Yet the vestibular issues combined with fibromyalgia make my life difficult.

So, I have been trying to work around them.

I stay out of the car when at all possible.

And now, I have been working a lot from home.

I do online tutoring and freelance writing.

I work very hard for my money. I just do it in my bedroom (wow, that sounds bad!).

I will go to the neuro on Friday to talk about the motion sickness. However, I don't think there is much they can do.

The one thing I miss is socializing.

I need to find some online communities that I can call home.

Facebook ain't it.

I don't have anything against Facebook; I just feel like I am outside of everybody's world there. I guess because mostly all of my Facebook friends have actual lives.

I will figure this part of my life out, though. I managed to figure out the job part.

Eventually, I will have something close to a life.

If I wanted your opinion...

The other day, I posted some rules and advice for dealing with a dizziness disorder. I admitted already that it is hard for me to follow my own advice. And so, I have no problem letting off some steam while I, once again, do not do what I tell others to do because I know it's right.

I am so sick and tired of trying to "defend" my illness to people who feel the need to try to diagnose me or my symptoms with NO knowledge whatsover about what they are talking about.

It should not bother me at this point, but it does. Terribly.

First of all, I feel like crap when I'm told by people that my symptoms must be psychological because they are happening at such-and-such a time. For example, my mother says the motion sickness and disorientation that I am experiencing in the car must be psychological because it is happening since I started driving more and working a little bit.

I try to explain to her that 1) These and other problems happen all of the time throughout the year and when I also have nothing going on. They happened all those years I wasn't driving or working at all. As they have been happening over the past 13 years. So for them to happen now isn't any different.

And 2) One of the things that triggers symptoms is stress. Any kind of stress, not just emotional. Physical stress, mental stress, dietary stress, overstimulation, overexertion, overtaxing, and just plain overdoing it. So, when I go from being inactive and working at my own pace at home, where everything is familiar and I have very few deadlines to working, driving around, adding myself as a means of transportation, trying to learn an unfamiliar area, deadlines, demands. This is piling on every stress at once. Seems obvious to me.

Of course, I know my mother also considers that I have a past history of emotional issues. Yes, yes I do. So many of them pertaining to this very same illness, particularly at the beginning of it, during all the years of misdiagnosis and mistreatment, and when I came to realize that I probably will have this the rest of my life. I also had other issues that I was dealing with along the way. Let's just say it's hard to maintain healthy relationships, friendships or habits when you become so incapacitated and, as a result, depressed, anxious and hopeless.

People, in general, are under the assumption that those who suffer any kind of mental difficulty are not worthy of being counted as whole people. That having, say, obsessive-compulsive disorder or panic attacks means that every physical symptom that person feels must manifest from a place in their head, not to be taken seriously.

And so, because I've been depressed, my complaints surely must be psychosomatic.

It really sucks to be treated in this manner. But it doesn't stop there.

Because I was depressed, not only are my symptoms in my head, my entire vestibular disorder is in my head. Despite the medical opinions of several specialists who are in agreement, after testing and treatments. That all doesn't count, because I was depressed. Over getting sick in the first place.

What makes people think it is alright to talk about my illness like they know better than myself or my doctor? And I don't buy the "because they are family" line. I'm not going to ask my mom how her gynecology exam went. I understand boundaries. Some things are personal. Some lines shouldn't be crossed.

It hurts to be told I should go to therapy to deal with the "problems" which cause my balance issues. If only I could heal my vestibular system with talking. I'd be on a couch tomorrow. Can a person "talk" their broken leg into getting back together? Or "analyze" their high cholesterol into resolving itself? This is different how?

Surely not because stress makes it worse. Stress also makes diabetes worse, high blood pressure worse, migraines worse, PMS worse, colds and flu worse. Do people who deal with those ailments get told they have to go to therapy? This is different how?

Because it's invisible? There actually are tests which can help to diagnose BPPV, Meniere's, and other vestibular conditions. How do I know? Because I TOOK them. I wasn't just RANDOMLY treated.

I also happen to keep myself informed. I read about vestibular issues and I speak to others who also suffer from them.

NO MATTER HOW many times I offer this as validation of my physical illness, I encounter flak.

It's frustrating as hell.

Not sure if I feel better now. Still, it had to be said.

dizzy rules

I haven't written in a while because things have been stable. And by stable I mean pretty good.

Yes, I have symptoms every day, but that seems to be the way things are.

I used to think that 13 years is a long time to be dealing with chronic dizziness, but I have talked with people who are into 20+ years with it.

In order to keep things from getting too out of control, I have to live by a few rules. I'm sharing them with all of you, especially those in dizzy hell with me. They are:

1. Don't turn your head too fast. Just don't. No matter what you hear or see. I break this rule all the time, especially when I drive because I need to see my blind spot when I pass people.

2. Don't get up and down too fast or too much. Usually doable, but sometimes I still forget.

3. Don't bend if you can possibly avoid it. Makes doing housework, shaving my legs and putting on footwear quite difficult.

4. Don't nod along to people when they are talking. A VERY hard rule for me to remember.

5. Avoid extreme temperatures and weather. Both searing hot and freezing cold temperatures will get my symptoms going. Forget wind. Wind is not my friend. Especially freezing cold wind. Rain? Rain is not the greatest, either, particularly when it falls on my head. And the atmosphere is not comfortable before and during rainstorms. Ice and snow on the ground is a joke. I keep threatening to move South just to avoid snow. However, then we have the extreme heat, so how do you win?

6. Avoid overly salty meals, especially with foods containing MSG. I adore Chinese food. However, no matter what restaurant says that they cook without MSG, they do anyway. Trust me on this one. Also on the "bad" meal list are foods like ham, hot dogs, chips, pretzels, things like this.

7. Avoid too much caffeine. I used to avoid all caffeine, but I missed my coffee in the morning. Sometimes it affects me more than others. I have to live with this or go back to cutting out all caffeine again. Don't even mention cigarettes. Of course I am supposed to quit, for obvious reasons, but also because they are another no-no for people with balance issues. And I haven't. That's my bad.

8. Get enough sleep. I am also living with fibromyalgia and migraines, so I NEVER get enough sleep. Too much sleep is not enough sleep. However, if I get less than I am used to, I can count on having the next day being horribly symptomatic.

9. Avoid alcohol. Another treat I have to limit. I get the spins if I have more than say, two drinks. Sometimes even at one. I pretty much don't ever drink anymore. That one is just not worth it.

10. Try not to get too stressed out. This one is a complete joke. I have a lot of stress in my life (who doesn't?). How do you cap that?

11. Avoid busy environments. Like grocery stores, warehouse stores, malls, arcades, carnivals and such. This really limits where I can go and how long I can stay there. And I truly used to enjoy all of those places. Forget carnival rides, even the merry-go-round (it goes in circles). Oh, any EVERY concert these days has the potential of having a light show.

12. Don't let anyone touch your face or head. Number one, I have kids. My little one especially is always touching my face or my head. It's like a magnet for her. Number two, I work with people with autistic spectrum disorders. They, too, often touch my face. While I can explain to my daughter not to do this (whether or not she remembers is another story), I can't usually explain this to most of the individuals I work with. Other people seem to want to touch my face and head, too. I don't know why. Maybe I just missed the memo.

14. Don't let anyone point in your face. See rule #12.

15. Don't let your blood sugar get too low. As fat as I am, my appetite is like a canary. I go through most days eating one meal, sometimes two. Don't do this, if you can possibly help it. It is a double problem: if you don't eat, your blood sugar drops and you get dizzy. If you wait too long THEN eat, your blood sugar spikes and you get dizzy. I'm working on this one.

Imagine going your whole life like this. Perhaps some of you already do, especially my fellow dizzies. No fun, is it? However, along with these rules, keep the following in mind (it may help maintain your sanity):

1. One bad day does not equal the rest of your life. You may have been symptom-free for weeks, months (years?) and then suddenly wham! you're riding the dizzy train again. Focus on the good days and remember you will be there again. This, too shall pass. (I should get that tattooed on my body somewhere)

2. Try not to take it personally when other people don't "get" your illness. They can't see it. They haven't experienced it for themselves. Many people don't give a damn. Oh, and how many think it's "in your head"? It's so hard to hear that, but you just have to ignore them or try to educate them, and realize THEY are the one with the problem, not you. You simply have a vestibular problem. This is quite easy for me to say, way harder for me to put into action. Still, I know I'm right.

3. You don't have to put up with inferior medical treatment. If you have an unpleasant or uninformed doctor, nurse practitioner or physical therapist, find a new one. If you have to go through a dozen medical professionals until you find the right one, by all means do so. Of course, sometimes insurance, finances, time and distance play a role in this. Still, if you can remedy this problem in any way (like seeing a different doctor or therapist in the same practice, for example), it's worth it. YOU are the reason THEY have jobs in the first place, and when they lose sight of that, it's time to move on.

4. You are not alone. You may have never met a single soul who shares your vertigo nightmare. Believe me, though, we exist. Before I got dizzy, I knew exactly one other person who experienced the same thing. For whatever reason (luck was on her side!), she received a diagnosis and good treatment with her FIRST attack. Unlike myself, who took 12 years to get a proper diagnosis and meaningful treatment. At first, NOBODY else had ever heard of dizziness/balance/vertigo issues. I found a few people online, then a few more, then a few more. As I racked up years of dizziness under my belt, though, I have met more and more people outside of the Internet who have had these problems. Or knew someone else who did. I have discovered that more people have heard of Meniere's than BPPV, so I say I have Meniere's. To be completely honest, I don't know which of the two I actually have. Or if it is something in and of itself. Still, it's Meniere's to most people. At least they get it that I have a dizziness problem.

I hope I have helped at least one person understand this condition more. I can't give professional medical advice, but I can pass on what I have learned. If anyone wants any more information, or just support, I would love to hear from you. Be well and hang on. Literally, hang on to whatever you have to. I do it every day.