IT IS ABOUT MY ILLNESS

I try not to make everything about my illness. That is hard when it’s so unpredictable. The people you’re with need to be aware of what could happen.

Plans may have to change on the spur of the moment or canceled all together. Sometimes things will be interrupted in progress.

I know I’ve said this before, but flexibility is key! Since Ménière’s and Migraines are unpredictable, as are so many other things. Awareness is key.

Do I look different?

If I fall because of a drop attack or vertigo, (which can happen at anytime) my husband, friends or family need to know what to do. If a migraine is triggered and my triptan doesn’t work we may need to leave an event. By the way… I am triggered by second hand pot smoke, lights and sound for both migraines and Ménière’s.

So, yes it is about my illness, even when it’s not supposed to be. It’s hard for others to accept, because I don’t look different. Unless you look really close. You might see it in my eyes. That doesn’t mean I am not suffering.

Love, Peace and Light! Rita

Managing Chronic Illness

I am still trying to get a grip on everything that is wrong with me. I absolutely hate going to the doctor, but not as much as I hate my symptoms.

I am concentrating on getting one issue under control at a time. First my GERDS, which is mostly managed now. I have less issues with GERDS, IBS now that I have cut wheat and dairy from my diet.

It was easy to ignore the Ménière’s when I was in remission, but all that changed in December of 2017. Unfortunately, my ENT only increased my Meclizine and put me on a diuretic, my PCP took me off the latter as my blood pressure had dropped. I have normal blood pressure. It didn’t help anyway. Fortunately, it’s been over a year without a full blown vertigo attack.

I saw a cardiologist, because I thought maybe some of my dizziness maybe related to my heart, but my skipped heart beat and undetermined fast heart rate aren’t the cause.

I have come to realize in the past few months that my everyday dizziness may be related to my migraines. So, I am seeing a neurologist. I just finished the last test on Saturday and I am hopeful we can stop me having daily migraines. All tests are back, my brain is healthy, so I will be starting Topiramate. I hope it will help prevent my daily migraines.

The next thing will be getting a referral to a rheumatologist for my fingers. The fingers on my left hand are becoming as painful as my right hand. I’d like to stop my left-hand fingers from getting as crooked as the right.

Left Hand
Right Hand

So, I take a pill for this and a pill for that. I am trying to get healthier through diet and exercise. It’s not always easy when fatigue is often stronger than me, but I fight it most days. Sometimes I just can’t.

Even as I lie here typing this little bouts of vertigo keep striking. And this is a good morning after nearly uninterrupted sleep. I feel okay except for the stupid mini spins.

I have mentioned this in the past, but Ménière’s is totally unpredictable. As is it’s management. What works for one may not for another. AND Ménière’s always comes back, no matter what. It’s a sad fact.

So, I try to manage everything, but nothing is curable yet. I am hopeful that a treatment will alleviate my symptoms.

Love, Peace and Light! Rita

Letting Go

It took awhile for me to accept that my life will never be the same. So many things have happened since the onset of Fibromyalgia, Ménière’s and Lichen Sclerosis. Some for the good.

Beauty is all around.

I may not be able to do everything I want, but I live a fulfilling life. I take trips… camp, cruise, travel and live in the moment.

Fulfilled my dream of visiting Cuba.

I know I sound like a broken record, but it’s great advice. “Live on the good days and rest on the bad.” Life doesn’t have to stop because you have a debilitating disease. It just changes.

Before a migraine hit. We finished this tour and went back to our hotel to sleep.

Once I let go of the fact that I will never be like others, I was able to make peace with my new normal. I spent many nights grieving the old me. I learned to breathe.

After resting for a few hours, we were able to enjoy the game.

Breathing is one of the most natural and underused tools we have for getting through anxiety, depression and the fear that nothing will ever be the same.

Even now when I find myself sinking into negative thought patterns, breathing and being mindful (aware of what is happening) can stop me from sinking into despair.

I chose to recognize that I was prepared for the rain, instead of letting it ruin my enjoyment of the game.

Once I accepted life would be different, I was able to live. Life is better, because I appreciate the good days and the things I can do. I may not ever be able to skydive, but I have zip lined. I’ll probably never go on an excursion zip line tour again after the one in Belize didn’t have brakes only a person to catch you at the end. That was a scary ride that went too fast to enjoy the scenery.

If you’re not feeling well take a break. Know that there is always tomorrow. It’s not the end of the world if you can’t do everything you want. Pace yourself, be flexible and most importantly breathe!

Let go of the past and enjoy the now. Use all your memories as a crutch to get you through the bad days. Most of all live!

Love, Peace and Light! Rita

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One Thing Leads to Another

A cold seems simple enough. Take some medication or let it run it’s course. Combined with Ménière’s it’ll screw with your balance, tinnitus and even make you dizzy or have vertigo.

When you get a cold, flu or something else it’s a battle to not give into anxiety of an attack, which may trigger the attack.

I try to rest as I do before or after activities. It’s all one can really do besides load up on medication for the cold symptoms and preventatives for the Ménière’s, eating healthy and drinking plenty of fluids is helpful.

So while I feel as if a storm is brewing, I can be proactive. I know it will pass and the sun will come out again!

Love, Peace and Light! Rita

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Work Hard, Play Hard

Ralph feeds a lorikeet.

My husband has been working late nearly every week day for a week or so. He’s salaried so he gets no compensation. He cannot take a day off without digging into his vacation, personal days or holidays.

He never complains. We all could learn a lot from Ralph. He works hard, plays hard and loves fiercely! I love him.

I can’t say I don’t complain that he’s working so much. It’s in my blood. As I write this post, I learned another thing I personally have to work on.

The Astros won against the Angels!

I am going to focus on our time together. I’ll try to sensor my words and hope that Ralph makes it home before I go to bed.

Love, Peace and Light!

Rita

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To Sleep or Not to Sleep

I often have trouble falling asleep. Between the tinnitus and my racing thoughts, I have difficulty falling and staying asleep.

I take an antidepressant before bed which helps stop my thoughts and makes me tired.

I have tried everything, except for actual sleeping pills. I do relaxation and meditation, I play ocean sounds. I read before bedtime to wind down and detox from my screens. (If I am reading on the iPad, I have the brightness turned down.) I’ve tried warm milk. (Before I knew I was allergic.) I’ve even gotten out of bed until I thought I could fall asleep.

Nothing works. The anti anxiety medication helps, but doesn’t knock me out, nor does it keep me asleep. In the past it was the same with the antidepressant I was on.

I found this article on things that might help. What do you do to help you sleep?

Love, Peace and Light! Rita

Happiness Begins Within

Being happy isn’t just an illusion as the song claims. Though sometimes it may feel that way. Truly there are always going to be other emotions even for the happiest of people.

How does one achieve happiness? As a person who goes in and out of depression, it is hard. Hard but not impossible.

A bit of rain tried to sour my mood, but I realized I was prepared and it was only a sprinkle.

For the most part I am happy. It took me a long while to get here. I had to retrain my brain to be more positive. It’s still something that I have to work at.

Being mindful of negative thoughts and emotions plays a huge role in my peace of mind. I can change the thoughts to positive ones. I can usually come up with two positives for every negative thought.

My morning meditation helps set my mood for the day, whether it mellows or energizes me. If I do it faithfully I don’t start to fall back into old habits. I was a pessimist who hoped for the best. Now, I am more optimistic about the future.

How can I not keep trying when I have this wonderful man by my side taking me on adventures and understanding that I have limitations caused by chronic illnesses.

Once I accepted that the only person I can change is myself, I started to work on me. I am not always successful at not reacting to others negativity, but I am getting better. Depression has a way of sending me back to square one.

Still I keep on trying to improve. And that’s all anyone can really do.

Love, Peace and Light! Rita

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Desensitization

I can sit under a ceiling fan without problems. I am still working on multiple ceiling fans.

When my Ménière’s first began, I couldn’t run the ceiling fan while I was in the room. After going through Vestibular Therapy, I figured out that exposure to things that triggered nausea or dizziness made gave it less power. Now, I only have a bit of trouble under multiple ceiling fans.

I wish exposure worked for everything. Unfortunately it doesn’t work for odors or lights. Lord knows I’ve tried to desensitize myself to fluorescent lights. I had one in my kitchen for years. The worst lights aside from strobe are LED. When LED shines in my eyes it is an automatic trigger for migraines if not Ménière’s.

This lamp doesn’t bother me.

VT had me look out the window at a fixed point as traffic passed by. So, I try to apply the same principles when I desensitize myself to moving things. Or if I am moving, I try to focus on a point in front of me. That however was a bad idea and my neck got stiff because of not moving. Now I just try to find something to focus on as I turn my head back and forth.

What works for you?

Love, Peace and Light! Rita

October- a month of Awareness

October is a month of Awareness. October 13-19 is Invisible Disabilities Week. The Invisible Disabilities slogan from last year, “Invisible No More”, is one I have adopted, because I refuse to be silent.

October is Depression Awareness Month. Many of us with chronic illnesses have depression and many without do as well. There is help. Don’t give into depression. Call the National Help Line. SAMHSA National Helpline: 18006624357 or 1-800-662-HELP. Someone cares! If you are struggling reach out to a friend, family member or call the help line.

October is also National Breast Cancer Awareness Month. Get you mammograms, perform self-examinations. Keep your girls healthy! Do this every year. I’ve had so many friends fight breast cancer. The earlier you detect it the better.

Here are some more awareness campaigns for the month of October.

• Domestic Violence Awareness Month

• Eye Injury Prevention Month

•Health Literacy Month

• Healthy Lung Month

• Home Eye Safety Month

• National ADHD Awareness Month

• National Breast Cancer Awareness Month

• National Bullying Prevention Month

• National Dental Hygiene Month

• National Down Syndrome Awareness Month

• National Medical Librarians Month

• National Physical Therapy Month

• Pregnancy and Infant Loss Awareness Month

• Spina Bifida Awareness Month

• Sudden Infant Death Syndrome (SIDS) Awareness Month

• World Cerebral Palsy Day (Oct. 6)

• Mental Illness Awareness Week (Oct. 6–12)

• World Mental Health Day (Oct. 10)

• National Depression Screening Day (Oct. 10)

• Bone and Joint Health National Action Week (Oct. 12–20)

• Metastatic Breast Cancer Awareness Day (Oct. 13)

• International Infection Prevention Week (Oct. 13–19)

• Pregnancy and Infant Loss Awareness Day (Oct. 15)

• National Latino AIDS Awareness Day (Oct. 15)

• World Food Day (Oct. 16) • World Pediatric Bone and Joint Day (Oct. 19)

• Respiratory Care Week (Oct. 20–26)

• National Health Education Week (Oct. 21–25)

• National Healthcare Quality Week (Oct. 20–26)

• International Stuttering Awareness Day (Oct. 22)

• World Psoriasis Day (Oct. 29)

I hope you are healthy, but it’s better to be aware of the things that go bump in the night.

Love, Peace and Light! Rita

The Downside of Travel

Angels v Astros in Anaheim

I had a fun filled weekend, despite the migraine on Saturday. Now that I am back home my body is screaming at me.

This is the downside… pain, fatigue, disequilibrium and screaming ears. Fortunately, no full on vertigo attacks. Just the small ones.

Seahorses

I rested up in between activities. My legs are stronger from daily walking so my feet aren’t killing me. My body should have followed suit since I’ve added yoga to my routine, but it didn’t.

I think it’s the 4-5 hour car ride with no breaks that did me in. Or maybe it’s just payback for enjoying myself.

Our seats

I suppose it could be worse, but how do I get my energy back? I need to walk the dogs and do a bit of yoga. I think I’ll begin with meditation.

Love, Peace and Light! Rita