My Crazy Life

Fibro Flare

Last weekend’s trip has taken a toll on me. Combine that with my rationing my Advair to make a weeks worth last a month, I still haven’t recovered.

Fibromyalgia reared its ugly head and my entire body is tender and sore. We got home late on Tuesday, I was planning on staying at the house in Sacramento until the movers arrived on Friday. Surprise, surprise they arrived on Tuesday.

Ralph was about two hours out when I got the call. Since I didn’t want to sleep on the floor, he came back for me. I scurried around getting packed up. When Ralph arrived we removed some things from the car to make room for me.

Suffice it to say all of this has put me in a fibro flare. We have one thing left in the house to get to be delivered to friends. That is happening this weekend. We are going on the road this afternoon.

I don’t know when I’ll recover from this flare. I am exhausted. It’s difficult to get others to understand that I cannot do this. Still I persevere on.

Love, Peace and Light! Rita

Brain Fog

What is brain fog? Here is a definition from Google: Brain fog is characterized by confusion, forgetfulness, and a lack of focus and mental clarity. This can be caused by overworking, lack of sleep, stress, and spending too much time on the computer.

Brain fog is one of the most frustrating parts of being chronically ill. For instance, I lost my Advair. I looked everywhere since I was positive I packed it. I remember taking the new one from its package and putting it with my other one before I packed for my trip last week. Once there, I couldn’t find it. I searched my suitcase and the house where we stayed. I searched the car and my purse. Nada.

I have been trying to figure out how I would breathe for the next 30 days. Today, it dawned on me that I packed my nebulizer and the Albuterol for it. These are in silver packages like my Advair. Thankfully, when I checked where I keep them, my Advair was there.

This is brain fog… it’s frustrating and unpredictable. Unless I am struggling for words, I don’t realize I have it. Until, I find myself putting my cereal in the fridge or worse my clean dishes in the freezer instead of the cupboard.

I am just glad I found my medication. My biggest fear is being unable to breathe.

Love, Peace and Light! Rita

Think Positively

If I had a penny for every time someone told me to think positively, I’d be rich. And if positive thinking could actually cure me I wouldn’t have a chronic debilitating disease and other issues.

Unfortunately it is not a cure. And all people actually accomplish is to make me feel bad that I am not strong enough to overcome Meniere’s Disease. I know that it’s not my fault just as I know that positive thinking won’t make me feel better. It just makes me better able to accept my life as it is.

So many people offer advice, but they don’t have Meniere’s. They may have had vertigo or tinnitus, and something may have worked for them, but none of us are the same and a chronic debilitating disease isn’t easy to fix, otherwise it wouldn’t be a chronic debilitating disease.

So, before you offer advice to someone do your research to find out what works. Don’t just say think positively or use ginger or whatever your cure is. Don’t you think that I have tried everything aside from getting injections in my ears and having a labyrinthectomy that destroys the hearing and vestibular functions of the ear. I am bilateral so those aren’t an option.

I choose to take one day at a time and not worry about what may happen. Getting rid of the stress have been the most helpful advice that my doctor gave me.

I hope this helps those with “helpful” advice think twice before saying anything.

Love, Peace and Light! Rita

Insomnia

I usually wake up frequently and have trouble falling asleep at night. I’ve tried many things to improve. Melatonin, Relaxation, Exercise, Trazodone… I have been doing better most nights.

Last night I couldn’t sleep. I rested which will help me get through the day. I do not know what brought this on.

Facty Health has a very good description of the symptoms.

Difficulty falling asleep
Waking up during the night
Waking up earlier than usual
Still feeling tired after a long sleep session
A lack of energy and tiredness during the day
Anxiety
Depression
A lack of focus
An increased chance of error or accident
A reduced memory

Personally I think that anxiety and depression may be the cause rather than a symptom. It’s one one of those situations like which came first? The chicken or the egg.

Today I may end up taking a nap. I am that exhausted. Usually, I try not to nap unless I am not feeling well, because I sleep better at night.

Do you have trouble sleeping? If so what helps you sleep?

Love, Peace and Light! Rita

Listen to your body…

One thing I have learned in the 20+ years of dealing with chronic illnesses is to listen to my body. I know if I push things it will get worse.

I have lots of good days, since I learned this. As a result my downtime has lessened. Because I don’t have a job, I can do this easily. If I wake up and feel like death warmed over, I am going to take it easy.

I am back to exercising most days. Again this is where I need to listen to my body. If I don’t feel well then I either do a short yoga practice or do nothing.

I have created an office space with room to exercise. Blaze (my cat) exercises with me. It was always easier to get motivated when you have friends, so Blaze has stepped up into that roll.

The top picture shows her acting as my writing muse. She is a multi talented cat. I really don’t know what I would do without her.

She’s is a my therapy cat when I feel down. How can one remain sad when you have this beauty to cheer you up? But I digress.

I cancel dinners with family when I feel off. They may not totally understand, but I don’t let guilt get in the way. Sometimes staying home by myself is preferable to interacting with others when my head feels off.

Meniere’s isn’t something people can understand easily. But with tinnitus (cicadas) taking up residence in both ears 24/7/365 if my head feels off too, then I would not be good company. Even if everyone left me alone being at someone’s house and not my own is more stressful.

As we all know stress and anxiety can exacerbate our symptoms and I have no desire to try to trigger everything at once. It’s been awhile since all my issues coincided at the same time. And I want to keep it that way.

Right now I am having a Lichen Sclerosus flare and a little fibromyalgia stuff going on along with the usual Meniere’s balance issues. I definitely handle it all better when I am at home.

What works for you?

Love, Peace and Light! Rita

Listen to your body…

One thing I have learned in the 20+ years of dealing with chronic illnesses is to listen to my body. I know if I push things it will get worse.

I am back to exercising most days. Again this is where I need to listen to my body. If I don’t feel well then I either do a short yoga practice or do nothing.

I have created an office space with room to exercise. Blaze (my cat) exercises with me. It was always easier to get motivated when you have friends, so Blaze has stepped up into that roll.

The top picture shows her acting as my writing muse. She is a multi talented cat. I really don’t know what I would do without her.

She’s is a my therapy cat when I feel down. How can one remain sad when you have this beauty to cheer you up? But I digress.

Right now I am having a Lichen Sclerosus flare and a little fibromyalgia stuff going on along with the usual Meniere’s balance issues. I definitely handle it all better when I am at home.

What works for you?

Love, Peace and Light! Rita

Everything’s Connected

I have mentioned that our air quality has been poor due to smoke drifting into our valley. This has not only affected my breathing, but my allergies too. Throw in Meniere’s Disease vertigo and I hit the trifecta.

My usual allergy meds helped my sneezing, but I still managed to cough up gunk. So definitely sinuses were involved. When the world started moving without me, I took Valium.

It helped the vertigo, but it did not make me sleepy. Sleep would be nice when I feel like my head is out of sorts. It’s hard to explain the feeling. Kind of feels like it’s stuffed with jelly. It’s an odd feeling. Everything seems to be off kilter.

It took a few days to escape that feeling. I didn’t go into my full blown vertigo attack, just the spins. My balance is shot, but I think I may be the only one who notices. Walls are my friends. I am used to tipping. Maybe I should sing I am a little teapot and say, “tip me over and pour me out” when I tip? Of course I am too busy trying not to fall that I forget to make a game of it.

I hope this round is done for a bit. I have things to do. I am nearly finished with this round of edits in my novel, but it’s been hard to concentrate lately.

Love, Peace and Light! Rita

The Day After

Wow after being out in the smoky air on Tuesday evening, I have felt like I cannot breathe. My lungs felt tight and my throat was raspy at least it felt that way.

I stayed in all day. Used my inhaler to no avail. Finally before going to bed I used my nebulizer. Hopefully, I will feel better.

The air quality is still only moderate today. My lungs feel good so far. But having fun outdoors wasn’t worth the near panic I felt when I thought my throat was closing up.

I have had asthma attacks in the past where I had to go to the hospital and I never want a repeat. Having a nebulizer on hand is a good idea.

Love, Peace and Light! Rita

Smoke

The air in the Vegas Valley has been filled with smoke. It makes breathing difficult, especially if you already have breathing problems.

My asthma has been acting up. I have been doing good staying in the house. Until tonight. Friends invited us to the LV Aviators game. It would have been a perfect night except for the air quality.

Smoke makes me sneeze and makes catching my breath harder. It was a good game though. Do you do things that you know are bad for you!

Love, Peace and Light! Rita

Unpredictable

Just when I am starting to feel better, my old nemesis, Meniere’s, showed up this weekend. It’s so unpredictable, I can understand why it causes anxiety in many people. I used to be one of those.

Now I just go with the flow. Fortunately, my doctor prescribed Valium and it helped stop the vertigo. I don’t know why my ENT wouldn’t prescribe it. It truly is a lifesaver. I don’t take them ever day. Only when the vertigo begins.

I wish they would knock me out, but as with most medication nothing does.

I am glad we had a lazy weekend. The last time vertigo visited we were in Reno and I failed to bring my Valium that trip. I will never forget it again. I hope!

I hope it’s done with me for awhile. I really hate those days. My tinnitus keeps changing volume and a few times the outside world went quiet. It really sucks that even once MD takes my hearing I will still have the tinnitus. My tinnitus sounds like cicadas with other random sounds thrown in sporadically.

I refuse to get stressed by this diseases unpredictability. I am prepared for when it happens. I have a cane to help balance me. It won’t stop the vertigo or drop attacks, but it will give me a third leg to steady me.

I have Meclizine and Valium as rescue meds. I carry earplugs for hyperacusis. (Some sounds can hurt my ears.) My glasses are blue light filtering. I even have Sea Bands which seem to help a bit. Most of all I rest on the bad days and I enjoy life on the good days.

Love, Peace and Light! Rita