Transition

I am transitioning my blog to my website. If you want to continue following my posts, hop over to My Crazy Life. 

If you have been reading this blog on my website at https://ritalsmith.com you are here, just look in the menu for Blogs or across the top of the page depending on your device. It’s finally becoming easier to access writing blogs on my site.

I will miss blogger, but it’s good transition.

I hope you are spin free.

Love, Peace and Light! Rita

People Don’t Understand

This was a good day. No dizziness. 

Unless others have a chronic debilitating disease, they don’t understand. Why don’t I look sick or disabled? Because my bad days are spent at home, usually in bed. On so-so days, I am great at pretending to be well. Still I try to subtly let others know that I’m not well. I tell my husband to stay with me. We are both bad at this.

I rarely have non-dizzy days anymore. If I am lucky I’ll have a good day once a week. I am a morning person, but find myself staying in bed longer so as not to over exert myself too early. I find myself in bed anytime between 7:30 and 9 most nights. I try to stay up, but my eyes will begin watering which is a sign that it’s time to hit the sack.

The nights when I have something to do, I conserve my energy during the day, so I can enjoy whatever activity I am doing. Yes, I don’t look disabled, but my body is no longer mine. It attacks me at every turn. Asthma (thankfully controlled), costochondritis, osteoarthritis, fibromyalgia and the worst of all meniere’s disease fight me everyday. Notice I didn’t capitalize them?  They have too much power already.

Sometimes taking a shower uses up too much energy. Yet it’s the one thing I refuse to stop, unless a full blown vertigo attack strikes! Should I use the spoon theory? Sometimes I start with 25 spoons of energy, but other days I start with 3. If I have 25 spoons I might be feeling pretty good. But realize that people without my issues have an unlimited number of spoons.

One of my biggest pet peeves is people who say, “I had that, but I did so and so... Now I’m cured.” What is it about an incurable chronic illness that they don’t understand? If you have Ménière’s, you aren’t cured. You might be in remission, but it always comes back. All the surgeries, steroid injections, medication that may help. Eventually though MD returns when you least expect it.

I was in remission for about 6 years. I knew Meniere’s was still part of my life, because I still had tinnitus, brain fog and balance issues. Still it took me by surprise when I woke up after having spent the previous day at Universal Studios, before heading to Disneyland, with the walls waving up a down. I carried on and regretted it after getting sick after riding Space Mountain. It’s normally my favorite ride, but one that I’ll never go on again. Darkness, combined with roller coaster movements with occasional flashes of light are not good for Vestibular issues.

So, no I was not cured. Ménière’s Disease isn’t curable. The most we can hope is to control it.
 It still knocks us for a loop by the unpredictability of its return. I get no warning whatsoever before an attack. Fortunately, it’s been over a year since my last full blown vertigo attack. I get mini spins frequently.

So, no you were not cured or you didn’t have Ménière’s. So don’t try to make me feel that I am not doing enough. Believe me I am doing whatever the doctor suggests. Some things I know have worked to help others, my ENT won’t even consider. So I try to live the best life I can. There is no way to make anyone understand, but compassion goes a long way. I will never doubt you are sick, so don’t doubt me when I say I am.

I hope you are spin free!

Love, Peace and Light! Rita

Reinventing Myself

Waiting on my EEG. This is a good day for me, but I would have preferred to do something enjoyable. The technician confirmed I have a brain!

I felt worthless last week, because I couldn’t drive to help out my husband, nor did I feel comfortable being in public by myself. Two drop attacks the past week had unnerved me. I realized the other day I may not be able to work, because of the unpredictability of Ménière’s, but I can write. I can try to reach one person who needs to hear that they are not alone. I can tell them I see them. I can advocate for invisible disabilities and the people who have them.

I have been doing that for awhile. Sometimes I even reach the person who needs to hear my message. I will continue to write about my experiences. Even I needed a reminder that I am not useless. I have a voice that I can use through my blogs and my support group.

A debilitating illness means you must learn who you are with it. You might grieve your past self. You may go through the stages of grief over and over. For me it’s inevitable. Something will throw me into despair, and I will grieve the old me. That is okay. I came through it and realized that my disability may limit what I can do, but it doesn’t define me.

I define myself. I am an adventurer with limitations. I am a voice for the invisible. I am worthy of the life I have been given. It has helped me feel better when I realized what I’ve been doing is try to help others.

In a former life, I worked in Mental Health as a Social Worker. I always wanted to help others and I will continue to do so. I just don’t get paid for it. I AM NOT INVISIBLE! I AM AN INVISIBLE DISABILITY ADVOCATE!

I hope you are spin free!

Love, Peace and Light! Rita

Live

Live on the good days and they will carry you through the bad days. You might be able to tell that wasn’t a good day, but a so-so one for me. I still got out to see Barenaked Ladies and Hootie and the Blowfish. I think I would have crawled to see Barenaked Ladies. I love them that much. On a worse day last week I had to miss Weird Al. I was having too many mini spins. I don’t think concert noise and lights mix with even small bouts of vertigo. Not to mention my balance was shot.

Lately I’ve not felt myself at all. My head is almost constantly dizzy with burst of vertigo. Plus all of my other issues have decided to flare, as I said in my last blog. This combination makes it hard to live or even get out of bed. Though I still wake up early, I stay in bed longer trying to alleviate some of the symptoms. I promised myself that I would never stay in bed for longer than necessary after those years so long ago where I only got out of bed to do anything, unless I visited family.

Despite how I am feeling, I still have plans. On Tuesday we are going to see Def Leppard. I will rely on my husband and maybe my cane to get me there. I rely on aids more and more lately. Cane, earplugs, and blue light filtering glasses.

These activities make the bad days more bearable. So when I have an attack or am too dizzy to function, I can think of all the good times I’ve had and the good times to come. I try to smile like today.

It’s not always easy to put a smile on, especially if I feel worthless. The good days remind me that I’m needed. My support group reminds me that I am needed. My dogs and cats remind me that I am loved. Most of all my husband loves me and brushes off my moodiness. He is there for me, though he can’t always tell I am not feeling well. He does get frustrated st times, but that is normal for any care giver. When we got together we decided to have amazing adventures and we have! We will continue to do so, even if we have to alter plans a bit.

Even a simple camping trip is an adventure and an escape from my illness, even when having symptoms! So live everyday you can to the fullest. I promise it helps get you through the bad times.

I hope you are spin free .

Love, Peace and Light! Rita

The Struggle is Real

Living with one debilitating disease is hard. Especially when I am almost always dizzy, have balance issues, feel as if the ground is moving. Throw in a drop attack or two where I feel as though someone shoved me backwards. Oh let’s not forget the constant tinnitus. Even when I went in remission the tinnitus remained to let me know that this disease would be back. This is what I feel on a daily basis. Lately, it’s rare for me to not experience dizziness. Even if you see me out with my hubby, I am probably not feeling well. 

Oh, I almost forgot vertigo. Though I haven’t had a full blown attack of vertigo that lasts for hours, I do have mini spins. These are short usually only lasting a rotation or three. I can’t think straight much of the time, because my head feels foggy. Brain fog makes me forget words too. 

My problems don’t stop with Ménière’s. And lately they all seem to be ganging up on me. The Fibromyalgia is causing me to feel as if I have the flue. That achy, nauseous feeling and sort throat that characterizes the flue is how I am feeling. The nausea is also a symptom of the Ménière’s. 

In addition to the Fibromyalgia pain, I have Costochondritis, which is inflammation of the cartilage that connects the ribs to the breastbone and it’s flaring as well. My Osteoarthritis in my hands, feet and knees is also acting up. My Lichen Sclerosis is out of remission too. This is a vulvar disease and it’s painful and itchy. Oh and my migraines are almost a daily thing. I thought they were gone when I went off my water pill, but they’re back. It’s good that I see a neurologist on Monday.

I have already wrote about the depression. That’s a different kind of pain. All of this makes for a very moody Rita. I am good at faking being well, except for my emotions. They are all over the place right now and come out in the most unexpected places. Telling family to go to hell for one. 

So most days I am by myself at home and that is good. No one to go off on. The pets are around to give me lots of love. It’s frustrating that I am stuck at home, until Ralph is home or if my brother is around to take me somewhere. 

I think giving up my independence is the hardest. I can run my car on one tank of gas for three months. That’s how often I don’t have some type of dizziness. And I don’t go far from home lately on my own. The two drop attacks this past week as frightened me, They don’t give any warning. I don’t know when the next one will be. So I am kind of afraid to be out on my own. 

I hope you are spin free. 

Love, Peace and Light! Rita

Depression: The Downside

Today I feel useless. I can’t do anything right. I’m too dizzy to try. Mini spins are too frequent for me to feel comfortable out by myself. I am afraid. 

Afraid that I am not needed. Afraid that everyone would be better off without me. Afraid to live. I am afraid. 

I am so overwhelmingly sad. How do I go on when I think everyone would be better off without me? Ralph’s friends don’t want to hang out with him, because of me. 

I feel utterly alone. I wish my emotions would stop so I couldn’t feel this pain. Numbness would be preferable to the pain of feeling as if I don’t belong in this world.

I know this is the depression talking, because I am happy when it’s not present, but today I am sad. I hurt and it’s no ones fault. It’s only a matter of time before it ends. Unfortunately, others have been at the end of my explosive emotions. Usually I can laugh things off, but depression takes that ability away. 

I wish I was different. I wish I wasn’t living with this pain. I wish that I didn’t cause others pain. I wish I could be who you want me to be. I wish I could be who I want to be.

I am just so very sorry for everything. Today I am sad.

The Upside of Depression

What Upside? I can hear the question as I type this.  Bear with me A moment. Depression is not easy. It’s not anything that you want to keep around. It makes me irritable and explosive. My emotions jump all over the place.

So how can depression have an upside? My muses seem to be able to talk to me when I am depressed. But you blog all the time... yes, but when I blog I am talking about myself or things I have experienced. And if you knew me, you’d know I talk a lot. Blogging is just an extension of my voice. I have always wanted to help others. I hope my blogs get through to at least one person.

I am writing again, not just blogging. Hopefully, I’ll turn out something readable. So though depression is awful for me and those around me that take the brunt of my mood swings, I am doing something.

I dabbled in writing here and there the past 7 years since my second husband died, but nothing has really gotten me to put my butt in the chair and my fingers on the keyboard, except for depression. I am not sure why I am more creative in a depression. I know logically that I should be able to write when I am happy.

Maybe it’s that I don’t make the time. When I am depressed I can’t be distracted by other things. I seem to have tunnel vision when I’m in a depression. Good for writing, bad for everything else. Maybe I’ll snap out of it soon. I was not even aware that it had crept in, until this morning. I woke up grumpy having slept very little. Maybe the fact that I recognized the depression, I will soon be out of it.

Mine is cyclical and not as devastating to me as some people’s depression is to them. We are all different, even our disabilities are different. We each exhibit and deal with depression differently. For me keeping busy helps. Occasionally, I need medication to snap me out, but it’s been awhile since I’ve been on anything.

So, I will use this time to listen to the voices in my head, so I can tell their stories and mine too. I have been pondering writing a book about me, so I can reach more people than I can here. Hopefully, by getting back in the habit, I can continue writing even as the current depression ends.

I hope you are spin free!

Love, Peace and Light! Rita

Words Hurt

I have learned to say thank you when someone compliments me, even though it’s not my first thought. My dad never learned to say anything nice. I don’t think he meant to inflict the damage on me, my siste’s and my brother’s psyche. He did though, because we felt fat. I felt ugly even after my freckles lightened, I got my braces off and didn’t wear glasses for many years between. I also felt stupid. I have to remind myself that I am the only one in my family who graduated from college. My dad told me when I graduated that out of all his children he never expected me to graduate. I think he meant it as a compliment, but that is not what I heard. I heard that I was dumb.

I just want to let you know that you are not alone and it is possible to change your thoughts. My brother worked hard at not being like our dad with his kids and didn’t allow them to call each other names, nor did he. I am proud that he figured out that words hurt long before I did.

I hope all parents make their kids feel that they are important, can do anything they put their mind to, and that they are beautiful. Bullying comes from all places. When you judge someone based on their looks, when you call someone four eyes because they wear glasses, and when they struggle in school and you make them feel dumb.

I got my dad into trouble with Sister Thomas Miriam when I was a senior in high school. She wanted me to apply for grants. I told her why should I my dad says I’m too dumb. Boy did she let him have it. I wish I could have been there.

It’s not too late to heal your broken psyche. I try to think something positive about myself every morning. A friend said to list all your accomplishments along with everything you’ve overcome. Your list will be longer than you think. Write a list of all your positives, you may have to look past your discomfort to see them. Write your negatives down, and then next to them write a positive or what you can do to change it. There are many more exercises that you can do to help you change your perception of yourself. The hardest thing for me to do was to say thank you , when someone complimented me. Rather than arguing or brushing it off, simply say thanks. If you need more help get counseling or google exercises that you can do at home.

Everyone is beautiful and perfect. We are all individuals and different! Being different is a good thing. We’d be boring if we were all the same. If there is something about you that you still don’t like, you can change it. I don’t meant change your face, because you are beautiful. Don’t argue with me, you are, but that too can be changed. It’s just not necessary. Overcoming our thought processes will help so much more than plastic surgery can. Even with plastic surgery we are still the same broken person underneath. So we need to change how we think of ourselves.

You are all beautiful! I hope you are spin free.

Love, Peace and Light! Rita

Plans Change

I have tickets to see Weird Al tonight. Unfortunately, many of my invisible disabilities are causing me grief today. I am having pain from fibromyalgia, arthritis and the costochondritis. Unfortunately, the Ménière’s has decided to show up to the party as well. I am dizzy and having mini spins, short bouts of vertigo.

I bought the tickets months ago. My brother was to be my date. Since I am feeling unwell, I asked his wife if she’d like to go in my place. My husband thinks I should wait to see if I feel better later. Somehow, I don’t think I will without a good night’s sleep.

Today Ménière’s wins. It does sometimes. Unfortunately, I was looking forward to seeing Weird Al, because he’s a musical genius and makes me laugh too.

I just took this picture and I can see my smile is only slightly masking how I feel. I wish I could say that I’m always able to middle through, but that is not the case. There are people who think I fake being sick, but in reality most days I fake being well. I do occasionally get good days where I feel normal, but they are few and far between.

I hope you are spin free!

Love, Peace and Light! Rita

Invisible No More

My disabilities might be invisible, but I am not. I am here. I have a voice, a rather loud one too!

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My goal is to educate and hopefully find that one person who needs to hear what I have to say. I am always happy when I am able to help others to feel not so alone. Or even to point them in the right direction for a diagnosis.

I don’t care if people get tired of hearing about my disabilities. I don’t care if they think I am seeking attention. I may be seeking attention, but not for the reason they think. I am trying to reach that person who needs me. Whether they are the afflicted or someone who knows someone who has an invisible disability.

Sometimes you just need to understand what your friend, significant other, mom or dad, son or daughter are going through. And hearing it from someone who is not close to you helps. That is why Ralph is in my support groups. I think he has a better understanding of Ménière’s by being part of the groups. He certainly is more understanding when I am unable to accomplish my goals.

I have friends who don’t talk about their issues. And that is fine too, but I won’t stop because it makes someone uncomfortable. I am not embarrassed and I have no reason to hide. Granted it might seem strange to outsiders that I am able to live my life. What they don’t see is me napping to recharge my battery, so I can. Nor do they see the days when I pay for taking that walk or going on that trip. For every bit of fun I have there is always consequences.

I know that I may pay and I am willing, otherwise I will curl up on my bed and never leave it, because I’d be too afraid of the days I need to stay in bed. I know that’s sort of an oxymoron. You’re damned if you do and your damned if you don’t. I will always choose living. It makes the down days so much easier.

It’s up to each individual what they are willing to trade. I go prepared most of the time. There are times I’ve forgotten my earplugs or refused to carry my cane that I have regretted it. Fortunately, my blue light filtering lenses are built into my glasses. I need to be more diligent about being prepared. Sometimes no matter how well prepared I am, nothing can save me from my Disability. It is always there and its totally unpredictable. I am talking about Ménière’s and migraines. The Fibromyalgia is a bit more predictable. Weather changes, overdoing activity are sure signs that I will end up paying. Is it worth it? Yes!

This is me! This is my life! And I will live it however I see fit!

I hope you are spin free!

Love, Peace and Light! Rita