And The World Spins Madly On

Early yesterday the barometric pressure took a nosedive and my head went with it.   My head started to throb and the light was excruciating; I took meds and carried on…or I tried to.  I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup.  Then it was a sit in the chair and knit kind of day, and I was okay with that.

After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw.   I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo.  I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart.   He came and helped me to the bathroom and back to my chair.  The worst had not arrived…

As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad.  I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy.  (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds)  I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!

I tried so hard not to disturb Stuart.  He has to get up really early to go to work and I hate when I have to disrupt his sleep.  He stirred a few times and I admitted I was sick but told him to go back to sleep.  I knew I could handle it, at least I told myself that.  I did sleep some, on and off, all the while feeling like I was moving.  Every slight movement of my head caused the room to spin faster, and my stomach to lurch.  I was not doing well, but I was dealing with it.  I survived the night, and I didn’t vomit, that is a miracle.

Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down.  Now it’s all the other symptoms that go with vertigo that are still getting to me.  The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised.  It’s been a challenging day.

As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years.  It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years.  Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again.  I even bought a car a couple of weeks ago.  Now, I’m being reminded that this will always be with me.  I will never escape Meniere’s disease, and I’m scared.

The fear escalated through the night and all day today.  My thoughts keep running to the “what if”s.  What if this is a new stage and it’s worse?  What if I can’t drive and I just bought a car?  What if I need more help than is available now?  What if?????

Can you see me spiraling out of control?

Time for a reality break.  Yes, I have Meniere’s and I always will.  Yes, it is unpredictable.  Yes, it could get worse, or it could get better.  Nothing is certain.  Life is not as I expected, so I will change those expectations, or better yet, I won’t have any.  Now, it’s time for a deep breath and a good night’s sleep.  Tomorrow is a different day.

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Stress? Who’s stressed?

I swear if I hear one more person say that something that is wrong with me is due to stress I will scream!  I have felt this way for many years.  When I was having vertigo daily they said it was made worse by “stress”.  When my asthma went crazy, they said “stress”.  When I had severe GI issues for months, I was told I needed to reduce my “stress”.  You know the last time I looked stress does not cause Meniere’s Disease, or allergy onset asthma, or fructose malabsorption.  Don’t get me wrong, I know stress can do a number on you, but I feel like it’s a catch all.  If they don’t know, then it’s stress, after all if they can’t fix it then it has to be MY FAULT.

Finally, I am having issues that I think may actually be caused by stress.  I will be the first to admit the last few months have been pretty stressful.  My mother-in-law was placed in long term care, we moved across the country, I left my sister with the understanding that we may never see each other again, Stuart started a new job, I’m finding new doctors, I have to have surgery on my wrist on TUESDAY, I don’t know how long to expect to be out of commission to recover from said surgery (I hate being so dependent, not having use of my dominant hand is hard), we’re looking for a house (and not finding what we want), we’ve been looking at cars (for me),  I’m starting to drive again, we’re living in a small house that I can’t get organized because we don’t want to get too settled since we will be moving again soon, I’m suddenly surrounded by family (some of that’s good, some not so good)…………….WOW. writing all of that out was stressful, and I haven’t listed everything.

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This is me with a migraine, the right side of my face gets all numb and droopy.  #realmigrainepose

For over a month my migraines and cluster headaches were much, much worse, is this because of the stress, or is it causing more stress….short answer, Yes.  I must say though, for the past week they’ve been getting better, I think it’s because of the medical marijuana I’ve started using (more about that soon).  I’m having some GI issues that just don’t want to stop.  (it’s even waking me up at night, and I haven’t made it to the bathroom a couple of times…is this all from stress, who knows, but I doubt it’s helping),  I’m irritable, quick to anger, and just plain grumpy.  I’m overwhelmed and in pain, and I’m taking it out on everyone else.  I don’t like myself right now.  My anxiety has increased, but it’s not too bad, yet.  I’ve been a little depressed, but it’s not all consuming.  So, there’s a lot to be stressed about and it’s kind of taking it’s toll.

I’m trying to meditate every day, but it seems the more stressed I am the harder it is for me to meditate.  I feel like I’m not being very mindful either.  I’m living too much in the future.  We are buying our forever home and I keep thinking things like, “I don’t want a pool because I don’t want to keep it up when I’m 70”, “I don’t want any stairs because I might get sicker again, and I also we might now be able to climb stairs in a few years.”, and my personal favorite, as I’ve been going though things and deciding what to keep I keep thinking, “will anyone care about this when I die?” ….I just turned 55, I’m not that old, but I sure am living like I am.  (except I want a cool yellow car, that will keep me young)  I worry about how M’s condition will advance.  I worry about Dad, he spends all his time at the home what M, and she’s beginning to have moments where she doesn’t remember who he is exactly.  How is he going to handle it when she no longer knows who he is.  Then I think about what M’s daughter said, she told me about another relative who had Alzheimer’s and how they told her that they may not know who she is, but they know they love her.  I think Margaret will always know she loves Dad.  It breaks my heart every day though to see this amazing woman slip away.  (she just turned 77)

I really want to get back to focusing on living in the moment and simply not worrying about the rest.  Why worry about the now? It’s going to be gone in an instant.  I want to invite joy in my life.  I want to step away from the drama that I’ve found myself dropped into.  I need to nurture my inner self.

Little update on me: My surgery is scheduled for Tuesday, the 7th.  It is a minor surgery, I’m not even put under general anesthesia.  They just put a little incision on the inside of my wrist below the thumb (on the side, not the palm) and snip a little to release the tendons.  When I saw the doctor in Charlotte, NC, he told me that often when the injections don’t do anything that there are actually 3 tendons running through the sheath instead of 2.  He said they don’t know why but it often doesn’t show symptoms until middle age.  This is even more probably since I have it in both wrist, luckily the injection worked pretty well in the left wrist though.  The doctor here didn’t mention it, but he did comment that the orthopedics department at Atrium Health (formally known as Carolinas Heathcare System) is one of the best in the country.  (right now they are ranked number 3)  So I kind of believe the doctor at CHS.

My migraines have improved some since I started using medical marijuana.  Most of what I’m taking is a very high grade of CBD oil.  I will write a post soon telling you all about my journey through getting a card, learning what to buy, and my experience in the dispensary.  The gammaCore has still not arrived.  The doctor’s office dropped the ball when ordering it, then they didn’t put in the request for the free trial for the first month.  (they did change offices this month, and my doctor is new and has been the only doctor in the group to prescribe the gammaCore, all of those factors led to the good up)  The gammaCore company called Stuart last week and told him that it should be no problem getting it approved by my insurance.  If that is the case, why haven’t I received it yet?  I sure could have used it this past month, the cluster headaches have been killer (literally, if I thought I had to live in that kind of pain all the time, I’d kill myself.  Cluster headaches are called Suicide Headaches, because of that very reason, people will kill themselves to get relief.  I start Botox in about a month; I was supposed to start on Thursday, but that was my original surgery date so we cancelled it.   The monsoons are causing a lot of severe barometric changes almost daily, I’m sure this has been one of the reasons my migraines have been so bad, so hopefully they will get much better in a month of so, when the monsoons are over.

 

It’s late and I have a headache, so this post was not even read over to check for errors, please forgive any typos, grammar errors, or other atrocities.

 

 

 

 

Do you feel inspired?

inspire

We all see them, the chronically ill who are living amazing lives, even doing things above and beyond what most “normals” do.  They don’t let their illnesses stop them.  They thrive despite their illness.  These people are supposed to be an inspiration.  We are to be amazed and we’re supposed to look at them and realize, “Hey, if they can do it so can I.”  (does that really work?)

There always seems to be a celebrity who has the same disease you do.  As a spokesperson for our illness they are supposed to be an inspiration, after all, if they can do it, why can’t I?

Do they really inspire you?  Does it give you hope?  Or does it make you feel inadequate?  Does it make you feel bad because you haven’t been able to do what “normals” would define as remarkable things in spite of our illness.

For me, it’s often the later.  I feel inadequate because I simply cannot do the things I used to, let alone do extraordinary things that I’ve never even thought of doing.

It concerns me that people will compare me to those “inspiring” people and think that I’m exaggerating the severity of my symptoms.  I’ve had well-intentioned friends and family members send me articles about someone who has Meniere’s Disease and how they are are either living amazing lives despite Meniere’s, or they were “cured”.  This happened a lot when Dana White (president of the United Fighting Championship), underwent a treatment for his Meniere’s and it was a “miracle cure”.  What they don’t realize is that there is more than one cause of Meniere’s, so his treatment may do nothing for me; he has Meniere’s in one ear, I have it in both.  They also seem to ignore the fact that he had to go to Germany to have this procedure done….ummm, who’s going to pay for this?  Not my insurance that’s for sure.  and just how safe is it?  After they send these messages, I wonder, do they think I’m not doing everything I can?

When we hear that someone is an inspiration, it is supposed to be a positive thing, but inspiration can be negative.  You can inspire people to do bad things.  Look at Charles Manson or Adolf Hitler, for example, they inspired people to do all kinds of horrible things.  They were very inspirational, just not like we have been conditioned to think of the word.

The people who inspire me to try harder, to live more fully, to embrace life, and simply care more are the amazing people I meet who have chronic illnesses and can still love their life, with all it’s limitations.  I’m amazed by the people who undergo many painful medical procedures and still greet each day with love.  I’m positively inspired by those who are able to push through and do the everyday things, even when life is just so hard. The people who show compassion and support to others despite the fact that they get so little themselves, these are some of the people who inspire me to be the best me I can.

I’m not saying that famous people can’t be a positive inspiration, I’m simply saying that is not always the case.  When I see a list of famous people who suffer from vertigo, it doesn’t inspire me to do anything.  I feel compassion for them, and I often wonder exactly how much they battle with their illness behind the scenes.  What are we not seeing?  The phrase, “but you don’t look sick”, sure hits home when we see someone like the beautiful Selena Gomez, who has Lupus.

Then I hear things like, “Nicolas Cage suffers from vertigo all the time”.  Ummm, really?  All-the-time?  I could believe he has disequilibrium all the time, but full blown vertigo, no way.  I simply do not believe it.  If he has vertigo all the time and can function as well as he does, that would be a miracle.  I can believe that he may have recurring vertigo, but not constantly.  I’m pretty sure I’d kill myself if I had full blown vertigo all the time.

 

Who inspires you to be the best you can be?

Do you get positively inspired by famous people who have your illness?

Does it make you feel inadequate when you hear that someone who has the same illness that you have has done something like run marathons, or started a successful business, or has won the “Golden Buzzer” award on America’s Got Talent, like Mandy Harvey did, who is deaf?

Am I the only one who is rarely “inspired” by these stories?

 

*image is a screen shot from Dictionary.com

 

Mindfulness Monday – Dizzy

dizzy winter

“Looking up gives light,
although at first it makes you dizzy.”

~ Rumi

 

“I am trying so hard to live in the moment and
enjoy it while it’s happening,
because it feels like a moving freight train that I just got on,
and I’m trying not to look back and get dizzy!

~ Laura Bell Bundy

 

“To be alive is to be dizzy
and not to know exactly where to go.”

~ Ander Monson

 

*image by W. Holcombe, please do not use without permission.

 

 

A day of trials

 

caring hands

Yesterday was filled with the trials associated with migraines and slow vertigo.

I barely got out of my chair today, and that’s okay.  I spent the day focusing on self care, taking it slow, and not beating myself up because I couldn’t go to PT, or do any of my exercises.  Luckily, hubby worked from home today, so he was here to help me any time I needed to navigate the world around me, like…umm….going to the bathroom.  My walker is great, but it doesn’t make me feel as safe as he does.  (if I really start to fall, the walker just comes with me, hubby holds on tight….I wish everyone had someone like my Stuart in their lives)
How do you handle a day of trials?

 

*image by W. Holcombe, please do not use without permission.

It takes how long?

When you have a chronic illness chances are it’s an invisible illness, others have no idea what you have to do to get through the day.  With my illnesses some days I look sick, some days I can’t get out of the chair and you can tell, I’m sick.  Other days I can get it all together and don’t look sick at all.  It’s those days that confuse people.

I’ve learned that it takes me longer to do things than it does the average human.  There are many days that I can’t accomplish anything, but let’s not talk about those days.  I want to talk to you about the days I am able to do a few things.  The days I appear normal.

Yesterday I started to do the dishes.  The dishwasher needed to be emptied, and there were dirties that needed to go in.  For a normal person this would just take a few minutes.  I started to unload the dishwasher, I got the top unloaded and put away, then I had to rest.  I came back after a bit and started on the bottom, I put away the silverware, and needed a rest.  After about 30 minutes I went back and finished up putting away the rest of the dishes, and started loading up the dishwasher.  While loading it up I took 2 breaks.  Therefore, at the end of this it took me over 3 hours to unload and load the dishwasher.  At this point all I could do was make myself a cup of tea.  This was the end of my ability to do chores for the day.  No one would think that doing the dishes took 3 hours out of my day.  I must say that I’m okay with this.  I’m grateful I can do the dishes at all.  I only wish I could do them every day.

Last week I had an hour to take a bath before a TV show came on that I wanted to see, I thought that would be plenty of time.  Boy was I wrong.  I need to have help getting in and out of the tub because of my balance, that takes a little bit of time, but not much.  I started to take a bath as normal, a little rushed because I wanted to make sure and get out in time, but just a normal bath, then I got dizzy.  Very dizzy.  Try getting a soaking wet 135 lb woman out of the tub when she’s very dizzy, it’s just not that easy, but it’s something that happens a lot around here.  (the reason I am dirty a lot of the time 😉  Getting me in the tub, taking a bath, and getting me out of the tub, took over 2 hours.  Luckily I did have the DVR set for my show.  I know that getting dizzy in the tub is a fairly regular occurrence so I should never put a time limit on it.  But how many people do you know that can’t get a bath done in an hour?

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I don’t look sick.  Taken at a wedding, July 2017

Then there are days when I seem to be able to go non-stop.  Recently I had a weekend like that.  We went to a wedding a couple of weeks ago.  On the day of the wedding, I had my hair done, then I rested a little bit, then we had the wedding at 3pm.  The wedding didn’t actually get under way until about 4pm.  Luckily, I was just sitting talking with people.  After the wedding, we had the reception to attend.  On the walk over, I had a mini vertigo attack, because of my vertigo we didn’t intend to stay long and we had planned to have dinner with my sister and her husband.  Then I started seeing people I have known for over 40 years, and adrenaline took over, about 2 hours later, we were finally leaving  (know that all I did was sit and talk with people).  We went back to our hotel, changed and were off to dinner.  We were finally back to our hotel around 9pm.  I was going full out, all day long.  Boy was I beyond tired.  Not only was I exhausted from the simple physical exertion of it all, and the mini vertigo attack I had at the church, I was completely off kilter from trying so hard to hear all day.  (I did find out that my lip reading skills have improved dramatically.)  Of course, I couldn’t sleep due to painsomnia (insomnia due to pain).  There was only 1 station on the TV that would show captions (yeah, what was up with that?) so I was stuck for hours, watching something dumb, I can’t even remember what it was.  This trip was very enjoyable, I wouldn’t trade it for anything, but boy did it take a lot out of me.  It took a week or more to recover fully.  For a “normal” person they could have made the trip in one day.  It’s about a 3 hour ride (I can’t drive).  We could have gone down for the wedding and come back that night, if I were a “normal” person.  Instead we went down Friday night, so I would be well rested for Saturday, and we stayed until Sunday so I could recover as much as possible before the ride home.  I had a lot of support for this trip or I never would have been able to make it.  My neurologist (headache specialist) sent me home with a series of shots to be given over the weekend to help with migraines and cluster headaches, both of which have increased dramatically recently.   The specialist I’ve been seeing for my back called in extra meds for me for the weekend.  If these two doctors had not increased my treatment for the weekend, I would never have been able to go and enjoy myself.  I will be forever grateful.  While there my sister took me to have my hair done, she made sure I could understood everything, even though I couldn’t hear in the salon.  She then came back to our hotel and ironed hubby’s shirt.  Without this help, I don’t know if I could have made it.

To summarize: We don’t always look at bad as we feel, we often need to rest more often than what is considered “normal”, sometimes we have to have a lot of support to do things that “normal” people do without thought….and that’s okay.   We normally appreciate things much more than “normal” people.  We care deeply.  We can still live a full life, it’s just different than a “normal’s” life.  and that’s more than okay.

 

 

Distraught…well, not that bad.

I’m sorry.  I haven’t been paying attention to my blog and I haven’t been supporting others.  I’m sure you all think I’ve dropped off the earth….maybe not, maybe it’s just me.

I mentioned in a previous post that I hurt my back.  Um, kinda.  I started having back spasms as side effects to a medication back in May, then the med was changed and I was put on another that caused akathisia (the need to move – like restless leg all over), this caused my muscles to tighten even more.  I saw my GP about it and she gave me muscle relaxants.  It didn’t get better.  I was sent to PT.  It didn’t get better.  I was put in steroids, they seemed to help some.  I was sent to a specialist, he gave me lidocaine injections in my back.  I was much worse the next day.  After a couple of days of that, I was once again put on steroids.  This time I think I’m having every negative side effect you can have from a short dose of steroids.

These side effects are hell.  (they are getting better)  My moods, oh my goodness.  I’m so sad, I am crying all the time.  I’m scared, I keep having feelings of intense fear wash over me.  Two nights ago, I was convinced I was dying.  I’ve been having slow moving vertigo, I barely see it moving, but I feel like I’m moving, and I can’t walk without help.  My head has been killing me.  Extreme nausea has plagued me.  I can’t sleep.  and I’ve had 2 seizures.  Oh, let’s just say, I’m going through a rough time.  But don’t worry, it’s getting better.  I know my mood swings are from the steroids, but it’s hard to deal with.  Poor hubby.

Speaking of hubby, he has worked from home the past 3 days.  He hasn’t wanted to leave my side.  I’m so very grateful to have such a supportive and caring spouse.  He makes me want to be a better person.

After all of this, my back still hurts.  I still have 2 days of steroids left, and I have exercises to do, hopefully that will get me on the road to recovery.  To be clear, according to x-rays I have no damage to my bones, it’s all muscular.  The muscles simply will not relax and they spasm often.  I have not had an MRI.  I cannot have an MRI because of my cochlear implants.  If they need more imaging it will have to be a CT scan.  We’ll cross that bridge if it comes.

Forgive me this post of self pity.  I will try to post more often, and get out there and support others too.  I miss you.