Appreciate Life

One thing living with a debilitating disease has taught me is to enjoy life. Yes, I may have to cancel some things due to this disease, but it’s no different than having the flu. The difference is that I appreciate every single good day I have. It does pay to be flexible though.

Having friends and family who are supportive helps tremendously. There were several months, nearly a year, that I couldn’t drive. And friends and family helped me get around. Taking me back and forth to doctors appointments, getting me out of the house. Without them I would have become housebound, because even taking a walk can be frightening when you’re dizzy all the time.

My point is on the good days, even some dizzy days I try to have fun. Most importantly I appreciate each show, each lunch or dinner, each trip and every moment that I am not dizzy. I even appreciate the dizziness and general lightheadedness, since it’s not vertigo. Vertigo is the hardest part of this disease to deal with for me. Some attacks cause severe after affects that last a couple of days for me.

 I really do appreciate the days without vertigo. Sometimes my natural grumpiness emerges and I may not seem so thankful, but I am. I am working on becoming a more peaceful me. I am a work in progress and I am continually changing. I am thankful that I can work on me.

I am choosing to be happy and I appreciate all the good days. Sometimes I may just need to be reminded of this.

I love my life. I hope you are spin free!

Love, Peace and Light! Rita

Living Despite Meniere’s

I think living with a debilitating disease is often about timing. I know I feel better during the day than the evenings. So if I want to do anything it’s best to plan daytime activities.

Now that’s easier said than done, since most of my friends have jobs. It makes socializing harder, but not impossible. I just need to make sure I have a ride if I do evening activities. That’s what husband’s are for...

There are some days that I may have to cancel plans. It would be nice if my disease was predictable, but it’s not. If it’s frustrating for others, think about how I feel. I do not like being housebound. Not being able to drive is difficult. Even on good days I have to figure out how bad the brain fog is affecting me. Today it’s not so bad, but I still began to cook my oatmeal without water.

Imagine if I am driving and I see a squirrel.  🐿  Okay, not really a squirrel, but anything that takes my focus off what I am doing. I could put others in danger as well as myself. So, I rarely drive anymore.

I am fortunate that my brother lives with me and can take me to appointments if my husband cannot. Oh and Uber and Lyft are viable ways to get around.

The days I get out and enjoy myself make it easier to cope with the bad days. Anxiety and Depression are part of life for me, but I continue on.

I have lost 15 lbs in 5 months, because I had to stop eating wheat 🌾 and cows 🐄 milk. It cuts out so much of my previous diet. Strangely enough, I am not constantly hungry since eliminating my food allergies. And I can still have meat, fruit and vegetables.

My husband gave me a Simply Fit Board for Christmas which is helping me get into shape and it also helps with my balance. On bad days I cannot do it at all. It’s kind of funny watching me try to do the twist or even stay of the board. On good days and even my first time on it, I have no problems at all. I think because my brain is already working to keep me upright.

As I get healthier, I am feeling better. Being healthy is not a cure, but it does benefit most of what ails me. For instance, my knee isn’t causing me as much pain since dropping 15 pounds.
I refuse to give in to this disease, but I know there are days that I must. It’s all about balance and realizing that not everything is possible.

I hope you are spin free!

Love, Peace and Light! Rita

Thinking

Ouch that hurts! LOL! Seriously, though... I want to write a nonfiction book. It’s a bit frightening to leave the worlad of fictional monsters to write about me. 

I want to use my experience in living with chronic illness as a basis for a book. I don’t know if anyone would want to read it. The reward will be in helping others. Even if only just one person is helped by my experiences then it will be worth it. 

Now do I pitch the idaa to publishers or just write it? I know publishers of nonfiction prefer to be pitched the idea and an outline. But if I write it first and then pitch the idea, I won’t have to stress about making deadlines.

Decisions... The ideas are flowing so I will probably be able to put together an outline. Since it’s not fiction, I will not be able to use my usual pantser method. 

I have to do one thing that all writers need to do... Put butt in chair and fingers to keyboard. So, I am thinking of a book about living with chronic illnesses. I will be putting me out there for all to see. Can I do this? I don’t know, but I am going to give it a shot. 

I hope you are all spin free!

Love, Peace and Light! 

Uncluttering

It seems the trend right not is to declutter. People are determined to downsize their lives by getter rid of things they don’t use or need or doesn’t make them happy. I have been slowly getting rid of clothes that do not fit. Thank God I didn’t get rid of all my smaller sized clothes as I am loosing weight.

The real thing I want to work on is uncluttering my mind. This is not as easy as it seems for someone with anxiety. Everything plays in my mind over and over. 

So my solution is to try to deal with it through humor. I made this meme because someone called me a bitch, because I called them mean.  And now I have as little to do with this person as possible, bless her heart. 

So I guess what I really am doing is cutting out the negativity in my life. Kind of hard when I have a knack of being negative myself. But since I can only change me, that’s what I am choosing to do. 

The Serenity Prayer has been my mantra for years, so I will continue to repeat it as often as needed. 

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

I am choosing to focus on me and the things that make me happy. I am choosing to eliminate negativity from my life and if this is in the form of people then so be it. It may not be a popular position, but I feel it’s a necessary one. 

So though I don’t make resolutions, I am working on me. I always am working on me. I am a work in progress.

I am still always going to be real, though I don’t go out of my way to hurt others, I also, don’t shrink from calling others out on their bullshit. I certainly won’t tolerate snide comments or backstabbing. I will call it out, but don’t worry because I have no qualms about cutting whoever out of my life. 

This is for me and the happier me that I envision. I think by being truer to whom I want to be my husband will be happier. And that to me is the most important thing in my life. 

I think this is something we all can benefit from. I hope you are spin free.

Love, Peace and Light!  Rita

Living with Ménière’s

      My friend Julie White and fellow Ménière’s Warrior from Twirly Girl Art sketched this to show what we go through. She’s an amazing artist. Check out her page. 

I had hoped that the water pill would help decrease my vertigo. I did have some reprieve, but January 4, I had a small attack. It was strange because though it was brief (only a few minutes) I felt as if I was in the after effects of a major attack. Mine usually last for hours.  

                       

I screenshot this from my video after the attack.

Since then I have a general light headed feeling and dizziness. Trying to pick up the dog toys yesterday caused vertigo. It’s frustrating and I feel incompetent or is a better word impotent? 

I am trying to persevere though my head feels heavy. My ears (tinnitus) is super loud and the tones are constantly changing lately. I can deal with the cicadas that never shut up, but not the whirring or test tone noise that keeps popping up. I feel I need to say that I am not suicidal. 

This disease keeps changing on me and it’s difficult to get a handle on it. It’s totally unpredictable. My husband asked, “Do you really think that you could fall in public? My answer is, “I don’t know? It could happen.”

What I do know about it. In the past I have been slammed backwards without warning in public or at home. It’s sort of like the drop attacks except that wall or risers at the store have broken my fall in the past. It’s violent and quick and comes on without warning. The last time I had one was in May before my full blown vertigo attack. That time I did fall because our bathroom is big and I missed the wall. 

I was trying to tell him the benefits of getting me an Apple Watch Series 4. I have been preparing for the days when this disease is bad. I already use a cane on off balance days. I bought a walker with a seat to assist me if things get worse or a lot of standing might be involved. I have yet to venture out with it. 

It relieves my mind to be prepared. Taking away some of the anxiety about a disease so unpredictable is a good thing as anxiety can exacerbate the symptoms. It’s one of my main triggers. 

Each of us have different triggers. There are some things the doctors find many have in common. Alcohol, salt, stress are just a few. Alcohol is not a trigger for me, but salt makes my tinnitus scream. It doesn’t seem to cause a vertigo attack. Stress/anxiety does, so I try to avoid it. 

It’s finally a blue sky day. We’ve had variable air pressure, rain and clouds for awhile. I hope I will get back to normal for me soon. Normal is tinnitus and balance issues. Even when I was in remission, these never went away. 

I could use some peace and quiet, but fear even when I go deaf I will never have silence. The two things I knew about Ménière’s is that I would eventually go deaf and totally lose my balance. I have since learned there is no time table for this. It varies for each individual. There is no cure. Only things they can do to alleviate symptoms for a little while. 

So, here I am trying the diuretics. They were helping or may have been a placebo effect. Now they aren’t. The ENT said the next step would be to try steroids. I am thinking the injections, but she didn’t really say. 

We’ll see. Like I said most remedies are only temporary. But even a few weeks reprieve was better than nothing for me. 

     Also by Julie White. 

I hope you are spin free. 

Love, Peace and Light! Rita

Sleep/Stress-A Neverending Cycle

I wish I could sleep consistently 5-8 hours a night. Unfortunately, that rarely happens for me. 4 hours is a good nights sleep for me, but even then I don’t feel rested when I awaken. 

This is a screenshot of my sleep patterns as recorded by my Fitbit. You can see how little I sleep. Wednesday I slept really well for me.

I am always tired when I go to bed, I should be able to sleep well. Yet, I don’t. Why? Anxiety often keeps my brain busy going over everything and anything that it perceives that I did wrong or others have done to me. It seems no amount of exhaustion,meditation or relaxation can quiet my mind. 

I have taken Trazodone in the past and it put me to sleep, but if I woke up for any reason, I could not get back to sleep. 

I try to reduce stress in my life. Unfortunately, there is always something that can trigger it. Money is one of the biggest triggers. Family is another. As much as I would like to not deal with people who cause anxiety, I can’t disown family. I can only limit my interactions with them. Sometimes that doesn’t help. 

I am a light sleeper so my husband moving or snoring can awaken me. My bladder is another problem, though it’s gotten better since I am on a water pill. Oh and a cat who meows to be fed at 3 am doesn’t help matters. Dogs wanting in bed who whine to get a light on it are spoiled, but what can I do if I want to go back to sleep? Then said dogs hog my pillows or covers and walk on top of me. 

At least the cat will purr when they lay on me. That is the most relaxing sound to me. I guess I need an app for that. 

Lack of sleep is a trigger for many of my Invisible Disabilities. If I don’t sleep I wake up sore and achy. I feel as if I am getting the flu. Sometimes it triggers vertigo, but more often than not I am just lightheaded or dizzy. Which creates more stress, because I am reliant on others. I like being able to do things on my own, but cannot drive when dizzy.

I think losing my independence is probably the most stressful thing that has happened to me. Stress triggers vertigo so it’s a never ending cycle. Though I have been relatively vertigo free since starting the diuretic, I still get the head pressure and lightheadedness associated with vertigo. Which makes me fear an attack is imminent. It’s a vicious cycle.

Then you throw in people who don’t believe that there’s something wrong no matter how you try to explain it. So stressors are everywhere. I continue to try to educate others about my invisible disabilities and other such things as well. Sometimes, something I say helps someone who has been struggling with issues themselves. That makes it worth it to me. 

So why do I let these things stress me? I don’t. It’s something in my brain or genetic make up that causes these things to stress me. Stress contributes to my lack of sleep, the lack of sleep contributes to my anxiety. It’s a vicious cycle that I want to break. 

I will continue to meditate and use relaxation exercises to try to find the inner peace and place where no stress exists. I have done it before and will again. 

I hope you are spin free.

Love, Peace and Light! Rita

Live and Be Happy

Life is not guaranteed. I learn that lesson over and over! My beautiful friend of over 25 years passed away yesterday. 

She was fun with an infectious laugh. She didn’t let anything get in her way of being happy. 

Valerie is the one in the middle. We were all much younger here. I saw her before Christmas and she spoke about the past and how much fun we all used to have.

In honor of my sweet friend, I am going to enjoy my life. I am letting go of old grievances and starting today as brand new! This year will be a new year and I am going to do my best to honor Valerie. 

So Live your life and be happy! Enjoy every moment, because life isn’t guaranteed. 

I hope you are spin free!

Love, Peace and Light! Rita

Happy New Year!