There Once Was a Time…

There once was a time, I felt so young and free…

A time when I danced the night away

Without a thought

I wore spike heels and I strutted my stuff,

And yes, I thought I was all that…

I got in my car whenever I pleased, driving on highways to towns  hours away!

I drove on huge highway ‘mix-masters’ elevated multi stories, maneuvering the figure 8 curves, able to gaze below.

Without a thought, I once did so much.

Now, it feels  I have to give everything a thought…

“Will I be dizzy and nauseous today”? This is usually my first thought of my day.

“Will I be able to follow through with plans, even fun ones like getting my hair done (I didn’t the other day).

“Will I be able to accomplish anything”? I started 8 ‘projects’ this past week and didn’t complete one! They ranged from simple housework to writing my Blog (this being one of three I started).

“If Mike asked me to go out, could I”? Usually not… Oh, I have a million excuses for this one! A movie might have triggers, fun as it might be, no. As for eating out, places don’t stay open that late around here, besides the way smells affect me now which makes meals difficult.

I long to be the me I used to be…

So…This Is Retirement?

Well, Mike (my husband and rock) has been retired for just under two months and I’ve never felt busier! Oh, I’m still chronically dizzy. I’m still dealing with my multitude of other diseases or disorders but I haven’t moved this much since before my Vestibular Disorder. Mike has been…shall I say, encouraging me to accompany him on all the errands he used to do alone, all of them. By doing so, I came to the realization that when I was diagnosed, I just stopped movement, period. Not that I was bed bound, although I do spend a lot of time in my bed, but I found moving around was so difficult, I made my new routine to remain still as possible. My furniture arranged so I have something to touch as I wobble through my house. As a retired COTA, I knew I needed to move to assimilate/improve my balance but doing so made me feel awful. My first errand was to the grocery store (my nemesis), which was once a happy place for me, but I survived.

Armed with one walking stick and my husband’s arm, I strutted into the store. Well, I thought I was strutting my stuff as we entered the store. Whoa! Get me a basket quick because I was taken aback by the stores two story ceilings and the vastness of the space. I draped myself over the basket and got my bearings. Ugh, this is exactly where I stopped with my VRT, partially due to our daughter’s accident in 2005 and partly because…it’s HARD! I’d left off my home program of VRT with this exact task, going to the grocery store, to work on head turning while scanning up and down. So, with list in hand, we took off to buy groceries. I was grateful I’d made a list because brain fog set in quite quickly.

All these years, Mike has done our grocery shopping, I just gave up. This was a huge task as my first since we were restocking the pantry. I did okay with the visual scanning but when I stepped away from the safety of my basket, I had to think out and plan every single step, with the idea of falling a constant in the back of my mind. I wore my sunglasses inside, partly because of the noxious fluorescent lighting and partly because it kept me from making eye contact with others out of embarrassment. Ugh! Everything seemed to take so much effort, I was so over it but no, there was more on my list… I was so mad at myself for picking such a task but my anger came out on Mike, my love, my rock… Why?

I began this now ordeal, feeling kind of cocky but now felt defeated, exhausted, emotional, dizzy, and angry. This is not a pretty side of me. I disappoint myself when I go to the point of lashing out from this kind of stress. I tried blaming Mike for ‘making’ me go with him. Really? I was grasping at straws, not wanting to take responsibility for my choice to go on this errand. Mike remained calm and didn’t engage. He just let me rant for a while, actually, it was all the way home. There had to be a lesson in here somewhere. Once I was home and in my bed, I had time to think. A hilarious movie we love came to mind. It’s called What About Bob? starring Bill Murray and Richard Dreyfuss. Murray’s character has difficulty ‘managing’ his life and a therapist (Dreyfuss) suggests his theory of taking ‘baby steps’ to conquer his fears. THIS was my lesson! Baby steps!

Here’s what I decided I could have done differently:

  1. Pick a realistic task! This was such a huge task to choose as my first. Remember, Margaret, baby steps!
  2. Make sure you are in good operating order. Eat before and bring water.
  3. Make lists! I assure you, ‘brain fog’ is real and you may walk out without the things you need and a bunch of stuff you don’t.
  4. Take a break if you can. Some stores have benches, usually in the pharmacy area here
  5. If all else fails, there’s always tomorrow!
vestibular.org

The Waiting Game

I think all of us have played ‘the waiting game’ in one way or another and I realize… I suck at it! I’m playing it right now, waiting on the results of my recent Stress Test. I certainly didn’t plan to do the Stress Test, we should but rarely do, none the less, I had one earlier this month. Ironically, I find it very stressful waiting on results.

This all began the day after our off-grid vacation, oh so typical for my life. I had a routine appointment with my Mental Healthcare doctor. The nurse took my vital signs and I was so busy talking about our vacation, I didn’t ask what they were. Besides, they always seem to be the same anyway. When I was called back, the first thing my doctor did was take my vitals again, which has never occurred. I sarcastically asked, “What’s the matter? Am I dead?”. He just looked at me like a deer in the headlights and took it again… and again… and AGAIN! He sat down and asked if I felt faint or light-headed. “No…why? What is going on?” I asked, panic quickly setting in. He said my pulse was ‘dangerously low’ at only 40 beats per minute. This was really odd because I have a benign type of tachycardia (P.A.T.) which is a very fast heart rate that hits out of nowhere.

My visits with him are, in general, around 15 minutes because he is the doctor who ‘medically’ manages my issues of PTSD, Depression, Anxiety, and Insomnia with drugs. I would have to go elsewhere to talk with a psychologist. If this sounds stupid, it is but this is what our insurance pays for… Anyway, within a matter of minutes he tells me, ‘As a Geriatric patient, your body has built up the Xanax (anti-anxiety med) and I want you off of it by next week…’ First off, my brain shut down when he called me a Geriatric patient. I will fall into this category soon enough but I’m certainly not there yet! He asked if I thought I could do this and I said yes, I thought so. I did say, “You remember I’ve been on this forever, right”? My Geriatric brain was still stuck on my ‘classification’ and I forgot to ask any questions. Better yet, he told me he was going to be ‘gone’ most of the month. I shuffled out of his office. Now it was me looking like a deer in the headlights.

The first thing we did was purchase a blood pressure cuff and I made a call to my regular doctor. Sadly, I just went off and he got the brunt of my frustration. “My heart isn’t beating right! The other doctor said…”. This is what I love about him, he’s calm, soft-spoken, knowledgable, and he listens. Even when I sound like a fool! He’s in excellent health and has a resting pulse in the 40’s. I reminded him how unhealthy I am… He gave me a schedule to titrate me off Xanax. Dang, I was totally stressed out now!

The next day, I made an appointment with Mike’s Cardiologist. I still felt like nothing was truly wrong but that new blood pressure cuff verified something was wrong with my heart. My readings either gave a low heart rate (still under 50) or it said ‘Irregular Beat’, not reassuring at all. Oh, yes, Mike was taking his blood pressure with me but his reading were clear, definitive. I actually got into the doctor within a few days. My first visit was what I expected, a detailed history and an ECG (Electrocardiogram). He informed me there was an ‘irregularity’ and he wanted to do a Stress Test and have me wear a Holter Monitor (a portable loop recorder ECG worn for 24+ hours). I’d have to wait (again…) two weeks for the testing. This is the type of waiting that brings anxiety to me. Sigh…

Doing a Stress Test, has been something Mike has pushed me to do since he was forced to have stints placed a number of years ago. I really doubted my ability to physically do a Stress Test. I was ready to give it my all on test day. It was just the doctor and I in the room. I reiterated my Vestibular issues and he was unusually understanding. He also made a point to show me where I had an Emergency Stop button and we began. The treadmill faced a window which I thought would be a plus, it wasn’t as it made me see a ‘false’ horizon. I’d just acclimated to this illusion as he sped it up. I was concentrating so hard on this, I forgot a quick head turn can be a trigger. He asked me questions throughout and I answered him staring straight ahead. So, when he asked me something (I don’t even remember what), I turned my head and WHAM! A full-blown Vertigo attack hit me, I tried holding on tighter when it suddenly stopped. The doctor knew immediately what was wrong so he hit the button. “Dang it! Oh, I’m so embarrassed, please let me try this again…please, I know I can do it when I get over this”! I was pleading to do something I had resisted for years. “No, I have enough information…”, he said as he left the room. I felt like a failure. Before I left, the nurse put the Holter Monitor on me, I just wanted answers AND assurance, I am okay.

It was almost another two weeks before I got my answer, a very stressful and anxious two weeks. He began with, “There is definitely something wrong but it’s not life threatening”… Uhhh, good news? He told me I have PVC’s (plastic pipe, what?) Premature Ventricular Contractions. We all have a ‘battery’ in our hearts called the Sinus Node. It puts out an electrical signal but in my heart, the signal gets ‘confused’ in the Ventricle Chambers. I know, I don’t fully understand it yet but the oddest part of this is, my heart is beating ‘normally’ but if you take my pulse, it will never be accurate. You have to listen to my heart itself for accuracy. Oddly enough, they don’t know the cause, it’s most common in ‘white women in their 60’s’, oh good Lord! I’m on a very low dose of a medication to help with electrical function, time will tell… I go back in another month and will write an update then. Until then, I will be meditating more…

Oh,Yes I Did!

Last week, Mike and I went to a concert, the first one since acquiring a Vestibular Disorder. That means, it’s been a very long time, as I was diagnosed in 2003. It’s amazing the things we allow to go by the wayside due to our Vestibular Disorders and it’s really quite sad. We love music, all kinds but our favorite type is good old Rock and Roll! So when I heard Melissa Etheridge was/is doing a 25th Anniversary Tour of ‘Yes, I Am’, I had to find a way to go. This album came out the year I graduated from the OTA Program, so I was still living in Austin. It was on cassette tape, do people even know about cassettes anymore? Google it. I played mine, almost continuously, until it came unwound, twice! Just how badly did I want to go this time around? My desire to see her for the fifth time overrode any sensibility.

I bought tickets well ahead of time, so I could sell if I realized I couldn’t go. Just as I began thinking, “How cool is this?”, anxiety began creeping in. All the ‘what ifs’ spun a web in my brain trying to strangle my desire to go. I decided to be proactive instead of reactive. I know, I sound so ‘deep’ but it’s really not that hard to be proactive, I’ve just become lazy. The first thing I did:

  • Educated myself on the venue we were attending as it was our first time there. This was very easy to do via the internet. Complete with photos and a video. We were on the 2nd level, so I knew that meant stairs. Elevators were also available.
  • I picked aisle seats because I didn’t want to try maneuvering myself in front of someone and possibly falling into a strangers lap… I don’t know, it might have fun! Hahahaha!!!
  • Accept the fact that I can plan all I want but things happen. I planned my outfit, my hair, my make-up (which I ‘never’ wear), I was going to look so good! When I showered that evening, seated on my shower chair, I shifted my weight and my foot slipped… Straight into the wall! Seriously? I broke my big toe… So, instead of the cute booties I planned to wear, I was sporting my lovely walking boot from my countless broken bones. I certainly got my moneys worth from that thing!
  • Remember to eat and drink plenty of water. I know, most people don’t need to remember to eat but meds I take decrease my appetite to the point I need reminders.
  • Breathe…

We arrived in plenty of time to scope the venue out in person. I decided to take the elevator because of my broken toe, why complicate things or make them harder? With drinks in hand, we got to our seats, they were better than I thought! As the lights began to dim for her show, I felt all my anxiety melt away and was replaced with excitement. I was really doing this, I was really here! I ‘sang’ along with every song and still knew every word. I screamed, yelled, whistled until I was hoarse! I ‘chair’ danced (no standing) the entire time, to the point I was sore the day after. We had FUN though, so much fun! I’ve given too much ‘power’ to my Vestibular Disorder. It’s time to baby step my way back into this thing called life.

I felt like giving myself a pat on the back after accomplishing this and I think even Mike was impressed. Vestibular Disorders definitely make life more challenging, less spontaneous, and less autonomous. I am truly tired of feeling this way and have recently begun grabbing these rare occasions when I feel ‘okay’ and going for it. I’ve been going with Mike on various shopping trips, which really push me past my comfort zone but that’s a good thing for us Dizzies. I even went to the movies with our daughter, now that was extremely challenging but so enjoyable!

Last week was also VEDA’s annual Balance Awareness Week which was recognized this year by our Government here in the USA. So, besides flooding my Social Media with facts about Vestibular Disorders provided by the Vestibular Association/VEDA, I worked on my own balance awareness.

Yes, I did!

 

http://www.vestibular.org

What I Discovered When I Unplugged For One Week …

Living life with a chronic Vestibular Disorder can ‘suck’ your energy, leaving you exhausted, foggy brained, and at times, depressed. I can understand why people have a difficult time understanding something that’s almost always invisible, like a ghost. It’s the uninvited house guest who moves in, making themselves comfy. For these reasons, it’s so important to take care of ourselves. You may not need to unplug to the degree we chose but the need to unplug from our challenging lives is real.

“You cannot see, what you cannot see…”

Margaret Byrne

We (because I go nowhere without my husband) decided to unplug ourselves and go on a week-long retreat this year for vacation. Just the two of us, in a small but lovely home, on top of a bluff that overlooks a huge valley. Cell phone reception was lost almost as soon as we exited the Interstate. A moment of panic ran through me when I saw the words, ‘No Service’ pop up on my now useless phone. Mike put music on to distract me, which worked well until it didn’t. It’s a very curvy road with way too many up and down areas for me to be comfortable. My wrists wore the anti-nausea bands per usual travel attire which seem to work well for me most of the time. It’s a road that forces you to slow down and in doing so, it’s amazing what I notice! If I look off in the distance, it bothers me much less than attempting to look up close, it’s still a challenge.

Prior to the ‘Tiny House’ Movement, going off-grid was something I thought, no way could I do this but we just returned from a FIVE-day off-grid experience. It was heavenly to unplug from everything, no cell phone, Wi-Fi, or television. Just us… and nature… the only sounds we heard came from nature, ourselves, and if the wind was blowing in a particular direction, we could faintly hear singing coming from a camp. It was so wonderful and so relaxing, we didn’t want to come back to civilization. Of course, we had to but we began planning our next visit on our way home.

I wish we could have enjoyed all five days the way we enjoyed the last three but exhaustion had other plans. We knew we were both tired but certainly didn’t think we would actually sleep for the first two days. Sleep as in, 18 hours, so into the next day. We only got up to snack on something, take our medicines, and go to the bathroom. Tuesday was exactly the same but when we woke up on Wednesday, we were ready to explore this beautiful property, besides, I bought a pair of walking sticks I was wanting to try out (they are fantastic!). Mike brought his camera, documenting the beauty that engulfed us. From trees to flowers to rocks, the river, and huge boulders that fell long before to dozens of hummingbirds feeding on various native flowers all over, we felt immersed in nature!

Evenings were spent on the porch swing, watching the sunset into the horizon of the valley. Mike grilled dinner as we waited for complete darkness to star gaze. Most of us live in areas with so much ‘light pollution’, you can barely see a few constellations, “Yup! That’s the Big Dipper and Little Dipper”… Up there though, it was almost pitch black (the moon was a sliver) so you see almost every star! I saw constellations I hadn’t seen since earning a Girl Scout badge! At one point, I burst out laughing at the two of us, arms extended, pointing towards the heavens, jabbering away at the same time, like little kids seeing stars for the first time! We sat on the porch swing until around 3 am, knowing this was our last night, we didn’t want to leave… I wondered how long we could carry these moments, hours, and days spent together and how to keep it.

It’s been almost one month and so far, so good. The moon is always visible, even though the stars almost disappear out here. I have been able to just gaze at the moon and I’m back on top of the bluff, in a house that replenished us… Try it, I truly believe you will love it, too!

 

 

http://www.vestibular.org

 

H.O.P.E.

Hold On. Pain Ends”…

I think the majority of us take our ability to hear for granite, I certainly have. Imagine a world in which this wonderous sense has gone awry. What if your reality was, ‘hearing’ a noise so loud that it alters your life. A sound that only you hear.  So is the life of a person living with tinnitus. Recently, the story of a woman who had tinnitus to the degree she wanted ‘out’ came to my attention. She actually chose euthanasia to escape the ‘noise’ in her head she’d lived with for decades. She felt she was being driven crazy and it affected every area of her life. She wanted to leave this world, far too noisy for her, on her own terms. Yes, there are Countries that practice euthanasia as a choice, one not made impulsively. Their Medical communities acknowledge a person has the right to euthanasia. A Physician works with the person and oversees this decision. Medicines known to give the result as peacefully and dignified as possible are administered by either the Physician or taken by the individual. This woman left a very detailed account of her choice, how she would spend her last days, who she would spend it with, what meals she would eat, and where she wanted it to happen… Her wishes were met.

The Vestibular Disorders Association/VEDA defines it as:

“Tinnitus is abnormal noise perceived in one or both ears or in the head. Tinnitus (pronounced either “TIN-uh-tus” or “tin-NY-tus”) may be intermittent, or it might appear as a constant or continuous sound. It can be experienced as a ringing, hissing, whistling, buzzing, or clicking sound and can vary in pitch from a low roar to a high squeal.”

The past few months have proved to be difficult ones for me and for once, it has nothing to do with my Vestibular Disorder. With the recent suicides of two American/world icons, Kate Spade and Anthony Bourdain, I was left speechless. Two people I had huge admiration for, who by all accounts, ‘had it all’. It left me in a deeply reflective mood. Both of these amazing, talented, creative, yet obviously tortured souls had lost hope. They chose a permanent solution to temporary problems. Whatever those problems were, their perception of them, left them feeling that only suicide would bring the solution. If they were living with the darkness of Depression, one could say, “Well, that doesn’t surprise me…”. But does it really? Rarely do we get the reason they chose suicide. It gives us no answers. There’s not always a note/letter left behind explaining  their choices, either. Writing a note would take time and possibly make them change their minds… I wish they had held on to hope…

I am not writing this with any form of judgement as I do not believe suicide to be a sin. Those last seconds of life are between the individual and God (or not, if they don’t hold my belief system).  I was not living their lives and they weren’t living mine. I feel many of us, living with Chronic Illnesses, there are times it’s  difficult holding on to ‘hope’. When we feel there is no end to what we are living. The concept of forever can be quite daunting. The idea of feeling dizzy, nauseous, exhausted, and foggy brained, until the day I die? Really? In my case, the answer is yes BUT somehow, I have been able to hold on to hope. Maybe because I know who suffers the most when someone commits suicide. The survivors suffer, usually family and friends, those who loved them.

Sadly, my life has been touched by the aftermath of suicide multiple times. My response to first hearing of it has always been the same. I feel anger. I find myself feeling furious that they chose to leave this world prematurely. I lost two close friends in High School to suicide. I thought we were close. I knew they were dealing with Depression, yet never thought they would choose suicide. For years I carried guilt that I didn’t pick up on ‘this or that’ but I wasn’t educated about the warning signs. I had not yet known the darkness of Depression myself.

When I lost my Uncle to suicide, I was livid! He was such an amazing man but the demons from the Korean and Viet-Nam Wars followed him  home. He kept them at bay for many years, then they took him from us. When I was first diagnosed with PTSD, he was the first person I reached out to. I thought he, more than anyone, would understand. His response hurt me but it was coming from a 20 year war veteran. He told me ‘only weak people’ claimed PTSD. He never spoke of his time at war (Red Flag!). The most he ever said to me, “Kiddo, I saw things I can never forget”… The impact of his suicide never left me but for my Mother it was devastating.  ‘Depression Era’ kids, theirs was a story of true survival but they had each other. Family was everything for Mother and as the oldest, she made sure they remained very close. She wrote countless letters and sent packages  throughout his multiple tours. Her long, detailed letters always about her family. I wrote him long, rambling letters about my teen-ager, Hippie life. On paper, he sounded good, almost upbeat (Red Flag!). He never wanted us worrying. We continued a close relationship (I thought…),  up to the morning Mother was notified by Police… He had lost hope with our world and I suppose wanted to leave on his terms.  I am still mad at him for doing it…

I feel, suicide is not the answer because it’s almost always an impulsive act, too often meant as a cry for help that goes wrong. It’s an irrational decision made by someone who may have Mental Illness but not always. This was certainly the first time, I’ve heard of someone with a Vestibular Disorder making this choice but as I said earlier, I wasn’t living their life and they weren’t living mine. For today, I chose to hold on to HOPE, will you join me?

 

 

http://www.vestibular.org

“Margaret, you just can’t have anymore falls”…

I’m still laughing over being told this by my doctor, after my second fall this year. “Oh, really?”, I said. “Keep in mind, I DO have a Vestibular Disorder”. I do believe my ‘regular’ doctors forget I have one. Why? Likely due to the fact I rarely, to never, go anywhere without my stability, Mike. We see some of the same doctors and schedule those (annual) appointments together. My other doctors, I really don’t know what they think, they just seem to accept his presence. No, he isn’t in the room for my Gynecologist annual! Having to remind my doctor of my Vestibular Disorder got me to thinking, why do they forget?

  • Because it was diagnosed in 2003 and is permanent?
  • Because I haven’t included it in my medical history (impossible!)?
  • Because they aren’t treating me for it and I take no medication for dizziness?
  • Because they don’t notice that I ‘wall-walked’ the entire route to the exam room?
  • Because I am already seated when they enter the room?
  • Because I don’t wear a scarlet ‘V’ (vestibular) on my chest?
  • Because it’s up to ME to keep them informed? Well, yes…
  • I know! Because I don’t look dizzy! Ahhhh!

So, just exactly how does my Vestibular Disorder, that was diagnosed in 2003, and is permanent actually affecting my daily life? Now, after all this time? Number one, above all else, I lost myself. Yes, e-v-e-r-y single day is off-balance, with bouts of dizziness that can ruin my day. A side effect of this appears to be breaking bones for me. With my recent falls, they happened while vacuuming (housework is dangerous!) but two different situations.

When I am having a ‘good’ day, I go for it and that means laundry and vacumning (since I am basically homebound, self-induced…), these are two chores I can do and oddly enjoy doing. On the day of my first foot break, I’d done both, big mistake. I was exhausted but this is where something like OCD kicks in. I’m on a roll! Come on, just one more thing to vacuum! I was truly so tired, I should have stopped but without even thinking, I inverted my head. This is my sure-fire way to a bout of Vertigo. I immediately knew I’d gone past my point of no return but stood straight up (why?) only to very quickly fall down. Unfortunately, I was in-between furniture and I fell on top of my foot…my elbow caught the edge of one piece of furniture and my hip caught the edge of the coffee table (I thought I could catch myself). Besides some really big, ugly bruises, I was back in my ‘walking boot’ for 6-weeks (I’ve had it since the 90’s!)…

Lesson learned? Not quite. Blame it on brain fog… I was completely healed from the break but having an exhausting, frustrating, and in general off day. This time, I wasn’t actually vacuuming though. The vacuum had been left where I last used it, in our bedroom. It wasn’t neatly put away. It was disassembled from using various attachments, the cord was in a jumble around it on the floor. Yes, I am this messy… Again, without thinking, I’d gone to adjust my blinds so I could take a nap. In order to do so, I intertwined my feet all up in that vacuum cord (again, why?). I’m in the middle of this mess when the phone rings. Brain fog, short attention span, I don’t know what I was thinking! I’m realizing, I don’t appear to do a lot of thinking… I totally forgot my feet were in the tangled cord and just turned to ‘walk’ over and answer the phone. Down I go but this was so scary because this time, I was hyper aware I am going down! Oh, the pain was insane! I tell you, I apparently do things with/to my poor feet, I’m told happen to maybe 2% of the population. This time, 1 break (5th Metataursal/Pinkie Toe) and 4 hyper-flexion sprains of my toes (sprains hurt much worse, I think).  I’ve had enough with falling…

But am I ‘ready’ to use a walker? No, I’m not quite there. A recommendation will soon be coming I’m sure, as ‘I can’t fall anymore’, this from my doctor who also just let me know my osteoporosis has progressed. After much research (and procrastination), I’ve finally decided to take the medication for it, which is still scary. A medication given by injection that lasts 6 months! I’ve mulled it over for two years when he first recommended it. “No, I’m going to start walking”, I said with conviction. Yeah, yeah, yeah! How are you going to walk on broken feet or when I’m dizzy or when… Change of some sort is coming soon. The closer it gets to Mike’s retiring, I know I don’t want this to be our ‘golden years’! It’s time for some major changes!

I believe we all need a ‘reset’ button of some kind, periodically. I’ve had plenty of time while healing broken bones for this reset. I’m healed now and ready to start my Summer Herb garden again, something that fell by the wayside a few Summer’s ago. I find working with a garden very therapeutic, also. More to come on my garden to come!

 

 

vestibular.org