Sunday, September 8, 2019

Two Websites



I know I told everyone to hop over to my website, ritalsmith.com, and you can still do that. However, I managed to get the website mycrazylife2go.com, so check it out too. I am transitioning my blogs to Wordpress, but no matter which I blog on you can find it on either of my websites.

I am in the process of writing a book about my life, which I hope to have released next year. Though that depends on what the publisher wants to do or if I publish myself. I have a page on Facebook and a group if you want to connect with me.

I hope you join me on my journey to living life around my disability. As always, I hope you are spin free.

Love, Peace and Light! Rita

Sunday, August 25, 2019

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

Friday, August 23, 2019

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

Thursday, August 22, 2019

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

Friday, August 16, 2019

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

Thursday, August 15, 2019

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

Tuesday, August 13, 2019

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.