Tag: chronic illnesses

Has Anyone Else Gone Down the Rabbit Hole?

The pandemic of 2020 will most assuredly go down in history. We’ve all watched in horror, as first reports ‘only’ a few were dying in China and within mere weeks, COVID-19 was a pandemic claiming tens of thousands, and it continued taking lives as it marched into Europe and then, America. Almost in the blink of an eye, our entire world was infected with the COVID-19 virus. A vicious, unrelenting virus that attacks the chronically ill, in particular, my health/age group… Through my Vestibular journey and because of my Vestibular issues, I’ve ‘met’ (via V.E.D.A., Facebook, etc.) people from around the world. Wonderful, beautiful, dizzy people. So when COVID-19 began ‘over there’, I watched our news as it hit Country after Country where I knew people. I prayed. I worried. Try as I might, I have gone down the rabbit hole, more than once in all honesty.

Staying at home is something that is my norm (normal for most of us with chronic illnesses), as I rarely go anywhere anyway. The difference now is, this virus could kill me. It has killed millions at this point and I don’t see it slowing down. I am horrified how the USA has handled this crisis. Americans want to scream and protest for their ‘right’ NOT to wear a mask! I am horrified and embarrassed. I’m in Texas and we’ve been hit hard. Regardless, Mike sees people refuse to donn masks, refuse to social distance. I became a germaphobe only after getting a virus that took away my balance. I AM a hugger, so this has been difficult. I was a ‘kisser’ prior to this. I am an extremely affectionate person, I am lacking nothing, I just appreciate human touch…

I took a ‘break’ one year ago when Mike retired, because we were going to travel the USA (which neither of us have seen much of), tent camping in our new 10’x19′ canvas tent, a ‘Cadillac’ of tents. The fact is, we’ve done literally nothing for us since his retirement. The only traveling? Back and forth to Dallas (six hours one way) every two weeks for our daughter to have her foot ‘rebuilt’. In 2005, she was in a horrid high speed accident in which her right foot was crushed, a front to back crush injury. One of the worst a person can have. A foot surgeon was called in, after being told ‘they’ would have to amputate, he said he could save her foot! Which he did do. What he did was amazing and we were so grateful. There was always supposed to be other surgeries but she just went on with her life. It lasted 17+ years. Eventually, the foot pain became unbearable for her and she sought a well qualified surgeon but in Dallas…

We committed to her surgery for November 2019 and follow up appointments but it really wasn’t well explained. Oh, the truth is, these types of doctor’s visits are long and difficult to go through. It was a 5 hour day with all the paperwork, MRI’s, etc. I think we went to four different areas and I guess we could have missed the one that explained things such as, every 2 weeks she’d have follow ups for the next three months! Besides the 6 hour car ride one way, the cost of staying out of town, I just don’t travel well… As a matter of fact, I stayed behind from her recent trip because I’m dealing with, shall I say, intestinal issues… These trips aren’t vacations, we’re still in quarantine. If only people would simply wear masks…

We also had a ‘rip, roaring’ three month trip to my Dads. Again NOT a fun trip. A stomach bug that he let get out of hand took him down, quite literally. He became very dehydrated, then his electrolytes went crazy and he wound up falling not once but three times, breaking his ankle. It was a hard lesson to learn in his 90’s but he has learned some great adaptive techniques. A walker has become his best friend, thankfully. One day (3 months later), he just said, “I think y’all need to go home to your family”. I knew it had been time for a couple of weeks but I wanted him to take the lead. We continue to travel to check in on him and do simple cleaning.

So, here we are, almost one year into a pandemic. I have definitely been in and out of the rabbit hole. I have a loving husband that keeps his hand open, to pull me out but there are so many people that have no one to help to keep them out of the rabbit hole. We need to reach out and check in on our family and friends who are floundering with the world as it stands now. If you have no one to pull you out, call your Mental Health Professionals. There is no shame in not knowing how to handle yourself in a situation NONE of us have ever been through.

I have missed ALL of you out there! Time really does fly…

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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…

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

 

The Weather and Dizziness…

As if having a Chronic Vestibular Disorder isn’t enough for a person to deal with, add in weather changes, I get worse. Why is that? I’ve noticed (in our Facebook Support Groups feed all the time), there are many people also affected by weather changes. I think the weather connection is considered with Meniere’s but not necessarily for someone with a lesion on the Vestibular Nerve. Is it the high or low pressure systems working their way through that increases my dizziness? Is it the allergens that come blowing into West Texas from who knows where? Maybe it’s plugged up Eustachian Tubes putting pressure on the nerve? I take allergy pills (to make myself believe that something will actually work) with ‘hit or miss’ results. Today is one of those days. It’s cloudy, cold, and rainy outside. Yesterday? It was a beautiful, bright, sunny day. It’s been this way for a number of weeks and I’m over it but doubt it’s through with me. It’s also the beginning of holiday season, sigh…

Oddly enough, or maybe not so odd, the weather also affects my Fibromyalgia symptoms. Why? Is there research to back this up? I doubt it.  I do know my body and certainly know when I’m in pain. So it’s been weeks of dizziness and pain and allergies and… I’m glued to my heating pad, slowly baking my skin into jerky. I’m walking around with my arms ready to catch me before I fall and haven’t left my home in many weeks, many. Have I become an Agoraphobic? I might be but I don’t need or want yet one more diagnosis. Mike does (rarely) force me to get out. We fight awhile and I either do or don’t go. He’d say, “I have to use a cattle prod to get her out”! It is the sad look in Mike’s eyes that makes me go…

I wish there was a magic pill (don’t we all?  I take too many meds now anyway…) to just stop the dizziness but there’s not. So what are some of the things I do when the weather isn’t cooperating?

  • I ‘try’ to stay current with weather patterns but the Meteorologists in my area are ridiculously inaccurate. They say it’s raining and the sun is out! Seriously. If I know a system is blowing through, I take a decongestants. Some can’t take these medications though.
  • I recently bought a humidifier, the kind you can add essential oils to. I use Lavender a lot! I use Eucalyptus to clear up breathing passages.
  • I sit in a hot shower. I’ve drained our 50 gallon hot water heater before attempting to feel ‘normal’. What is normal anyway?
  • I drink extra water. I know I don’t drink enough on a regular basis and it helps with sinus drainage. I find when my sinuses are pressured, my ear ‘stops up’ and my symptoms increase.
  • I try to get extra sleep. I’m lucky I don’t get dizzy when laying down, I know many of you do. So for me, if I’m sleeping, I’m not up and dizzy… Is this what’s called, ‘being in a hamster wheel’?

We recently ‘celebrated’ our Thanksgiving holiday and it was very (VERY!) laid back compared to years past. The cold, or whatever we had, made the rounds to everyone but Olivia, our 6-month-old granddaughter. It’s really quite amazing to watch a healthy immune system in action. We’ve pinned it down to the grandsons who began it. What kind of grandma blames the children? Me, I guess. They both shook it off very quickly but didn’t cover their mouths enough…or wash their hands enough…I didn’t sanitize after them well enough…I also noted,  as the cold passed through my family, the adults have all had a worse time. There’s been no fevers in anyone, that’s why I say it’s a cold and not the flu. Something else I noted, the adults in this family are the whiners! Especially me!

There really isn’t anything that I know of that will eliminate dizziness that worsens when weather systems come through. I do know, I am not the only one dealing with this same issue. If you’ve discovered that ‘magic pill’, let me know what it is…please!

*Update: I take a ridiculous amount of time writing these blog post and since beginning it and stating my fear of falling… I fell. I forgot just how bad it hurts and oh my, the bruising on my hip, elbow, and wrist! I was ‘simply’ vacumning and ‘simply’ bent down to pick up a Lego piece. I obviously bent past my point of no return! The worst part, knowing I was wiping out and actually going to the floor. I’m just thankful my hip didn’t break as I have Osteoporosis also. Sigh…

    vestibular.org

Having To Say Goodbye…

There are times I despise my Vestibular Disorder… The past number of weeks have been extremely difficult. They have been weeks filled with retrospect, sadness, peppered with laughter. There were two deaths of loved ones, only one week apart, not truly giving us time to grieve one before the other happened. The first, was Mike’s uncle, passing away at 92 years old. We traveled the 4 hours to attend his funeral and say goodbye to the end of an era. This was a man who had LIVED life to its fullest most of his years. He was an amazing story-teller, actually all the Byrne men are great tellers’ of tales, mostly stories involving oil rigs, drilling and ‘sweet crude oil’, and such. I do live in Texas and this is oil and cattle country out here (we just wish we owned some of it!). He had a beautiful service, but when it was time to go to the burial site, I just could not do it! I was so unstable feeling after dealing with the super high ceiling and lighting…It felt awful having to tell Mike I really needed to go home and as usual, he said “Yes” to me and “Goodbye” to his relatives. I have a selfless husband who does understand.

I think most of us go through a ‘funk’ after a death and funeral, it’s part of the grieving process and normal. You’re spending time reminiscing about the person, looking through childhood pictures, laughing and crying at the same time, and Kleenex! I definitely went into a funky mood. It was Mike’s uncle but after 43 years of marriage, he was my uncle also. We just sheltered in place for the following week, with Mike leaving only for work. We’ve lost most of our local friends due to Mike’s crazy schedule. No one we know has such a backwards schedule. Then there’s me and my Vestibular issues… It takes a funeral or a doctor appointment to get me out of the house! It’s frustrating, it’s sad, it’s infuriating, and there are times I truly despise my Vestibular Disorder!

During this oh so funky period, Reed, a long time friend of ours called. I didn’t answer at first, then thought talking with him would likely make me feel better, as he’s also a great story-teller! I decided to video chat with him. We talked about what was going on in their lives, he had a lot going on! A new job, in a new city, in a new home. His daughter and her family live in Rockport, Texas. Yes, that Rockport! The direct hit of Hurricane Harvey. They lost everything, yet still had it all because her family got out… I told him about Mike’s uncle and he casually said, “So, I guess you heard about Lin…”. At our age, I knew what that meant, he had died. I sat there in total disbelief, in shock, feeling numb. It was a video chat, Reed could see quite clearly, that NO! I did not know that he died.

When Mike and I  married 43 years ago, Lin was Mike’s Best Man, with Reed being an Usher at our wedding. We grew up with these people! We did all the craziness of the ’70’s and we all survived! Most of our lives, we remained close with Lin and his wife. We had game nights, homemade snacks, and I’m sure way too many libations. Then for whatever reasons (maybe my stupid Vestibular Disorder for one?) we slowly drifted apart. It’s only in hindsight that we see our down falls and I regret not putting more effort into seeing each other. Lin dealt with Kidney Disease for decades and had been on dialysis for 21 years (10 years is the ‘normal’ life expectancy once put on dialysis). He also had coronary Disease, so it’s not as if we didn’t know he was ill, we just didn’t know how fragile he’d become. Now, I was going to have to tell Mike when he got home…

A Memorial was planned for the next day. I cried myself to sleep after Mike and I talked for hours into the night. I had a panic attack after thinking about ‘What if you die, Mike? ‘What if I die?’ and other depressing dialogue. Mike is a powerful force in my life, he held me, calmly reassuring me it would all be okay.  When we woke up several hours later (we’d stayed up way too late), I couldn’t breathe, at ALL! All my crying had plugged up my head, I felt the ‘fishbowl effect’. My ears were stopped up and ringing (new for me, I assume it was Tinnitus?). I took  decongestants and lay in bed awhile longer. As I got up from bed, bam! I became so dizzy and nauseated, it made me ill. “Oh my God, not now”! It was now… Right now! That’s the thing with a Vestibular Disorder or other Invisible Disorder/Disease, we can look okay, one minute you’re coping pretty darn well, then it knocks you flat. A Vestibular Disorder truly doesn’t give a shit what plans or responsibilities you have, even for a funeral. Mike went to the Memorial Service alone.  I stayed home. I felt just horrible, both physically and emotionally. These are the times I despise being sick…

I’m feeling very mortal after losing Lin at only 63 years of age. A good reason? In my mind, it’s just too young to die (because that’s too close to MY age?) One thing I do know, I have no idea when I’ll die, none of us do. With all this sadness and stress, there is something that eases our pain, Olivia, our granddaughter. There’s something about the innocence of a baby that keeps us going. She is wearing me out this is true but it’s been 38 years since I had my last baby and almost 9 years since our youngest grandson. I’m able to do less with each one. I’m not the same person I once was, which makes me sad. I’m working on ‘staying in the moment’ which isn’t difficult with Olivia. She’s a ‘granddad’s girl’, no doubt. I’ve begun meditation again. I find it very ‘centering’ and does aid in my stress reduction, I don’t know why I forget about this very useful tool.

I believe there is an ebb and flow with life and death. I believe in the circle of life. I believe that Yin cannot exist without Yang. As one heartbeat fades, a new heart is strongly beating in a child just entering our crazy world…

 

 

 

 

vestibular.org

Can a Woman Have Too Many Shoes? Orthopedic Shoes That Is…

As a person living with a Chronic Vestibular Disorder, my world feels ‘off kilter’, ‘off balance’, or ‘spinning’… Daily. Every single day. So, what I chose to wear on my feet is a necessity for aiding my balance. “Balance is achieved and maintained by a complex set of sensorimotor control systems that include sensory input from vision (sight), proprioception (touch), and the vestibular system (motion, equilibrium, spatial orientation); integration of that sensory input; and motor output to the eye and body muscles”, as defined by the Vestibular Disorders Association/VEDA. The last thing I should do is wear shoes for only the sake of being fashionable. Wearing shoes that are just SO cute but offering no support, only make maneuvering through my world more difficult and hurt my feet. I feel I’ve come full circle with my attitude concerning Orthopedic shoes. Is it because I am 62 years old with broken old down feet or because I am dizzy and don’t want to fall anymore? A little bit of both, I think.

In 1973, literally months before meeting  Mike, I was prescribed my first pair of ‘Corrective’ shoes as they were called back then. At the age of seventeen! Corrective shoes were for babies or children, not 17 year olds! This was after the heel cups, shoe inserts and whatnot failed. After I’d broken my left 3rd, 4th, and 5th Metatarsal bones (the long bones in the foot) three times in two years. My dad told me, ‘if it happened again I’d have to get the Corrective shoes’. Of course, I broke my foot again! The attempts to hide my limping gait from my dad failed, when I was caught  limping down our hallway (it’s hard to walk on a broken foot!). I was going to have to get a pair of Corrective shoes. I never said I would wear them…

The only shoe store that carried these type shoes was a children’s shoe store, in the mall! I was so vain at seventeen, I thought ‘everyone’ would see me. See me sitting in a children’s shoe store, all 5′ 10″ of me. Oh, the pettiness of youth! On the drive to the store, I repeated over and over, ‘there was no way I’d ever wear them, that he was wasting his money, that I wouldn’t go into the store’, etc… I was very dramatic, producing big ‘crocodile’ tears (fake ones)  but nothing worked. He marched me in there by my arm and sat me down in a chair. A chair sized for a child!  I was livid! He calmly handed my prescription to the salesman. I hung my head as real tears began rolling down my face as my feet were measured. I wore an 8 1/2 AAAA shoe back then, a long and very skinny foot…

The salesman disappeared behind a curtain and came back with two boxes. Two huge boxes! I was horrified when he opened the box and ‘presented’ the shoes to me! They were very similar in style to what I pictured my grandmother wearing. I was a Hippie Chick and besides, they didn’t go with my hip huggers jeans and halter top… I was heartbroken when I realized the boxes contained the same style, just different sizes. The first size was obviously too small as my toes hit the end of the shoe. The second size swallowed my foot. He patiently showed me how I could ‘tighten the laces to make them fit’. Seriously? My feet were swimming in these dang shoes! Maybe if I over-lapped them, then tightened them, and wore the bulkier socks I had they’d fit! Dad paid for the (ugly) shoes and we left, my head still hanging low. I wore them exactly twice… I wore them to Church because there, I wouldn’t be ‘judged’ but bullies go to Church also… Sigh…

Fast forward to 2017… I just purchased my first pair of orthopedic shoes! Say what? This time though, the choice was mine and boy did I hit pay dirt! There are SO many Orthopedic brands that combine fashion and function now, it makes my head spin! These type shoes are expensive, but now, I look at it as an investment. In myself. Truthfully, my feet are a mess. Both are paying the price for being born with ‘joint laxity’, ‘ligimental laxity’, or  ‘double jointed’. I’d never heard this term until I became a C.O.T.A. and worked with children diagnosed with this. A doctor told me, ‘think of an elastic waistband that becomes old and stretched out, it no longer does what it was made to do’. That’s me. Many people have joint laxity but it’s in out feet that most obviously show it. Are your feet flat? Some are born with flat feet, this is different but they still need good support. My feet have become flat because all the tiny ligaments have stretched out and no longer doing what they’re supposed to. Do your feet roll inward? This is called Pronation. I have both, lucky me! One foot worse than the other, thanks to the breaks I had as a teenager and later in life.

Thanks to gravity, our feet and ankles take the bulk of its effect when we stand. We need a stable, sturdy, and supportive base that puts them in proper alignment. Proper alignment allows our feet and ankles to function as they should.  Wearing fashionable shoes were torturous for me but I did it, as most women do. My collection of shoes I’ll likely never wear again, like my 4 inch heels, are insane! I just can’t let them go, yet…Back to ‘sturdy’ shoes. Functional shoes! They have come a very long way and this time around, I’m on board! They even make SANDALS now that are designed with orthotics built-in! It’s been a trial and error (a lot of returns as I purchase online) but I think I have a good collection of Orthopedic shoes, boots, sandals, and inserts now. With insert orthotics, you can put them into most regular shoes to keep in fashion. Inserts have also come a long way. They even make them for, get this, HEELS! I haven’t tried these yet but definitely plan to. Why not? Oh, yeah. I could fall an extra 4 inches! My Dansko ‘Professionals’ are still among my favorites, talk about study support!

Some of my favorite brands of Orthopedic shoes, boots, sandals, and inserts are:

  • Dansko: Their ‘Professionals’ Line gives the firmest, most stable support. These are the clogs you see Doctors and Nurses wearing. I have about one dozen of them in every color you can imagine. Use their Outlet Store, you’ll save big bucks if you can live with a miniscule flaw.
  • Aetrex: My new favorite! Yes, you can wear a flip-flop ‘style’, if you don’t mind a 3rd strap that goes over the top of your foot. Most styles have a firm, yet soft and unbelievably comfortable footbed. Their line has metatarsal support (your mid-foot). I didn’t know how badly I needed this, until I tried these on! They also carry Lynco inserts, making most any shoe you already have more support.
  • Earthies: I love this brand, very comfortable. Their insoles aren’t supportive enough for me and that’s where the inserts come in. I think MOST people would find the support adequate and extremely comfortable.
  • Spenco’s: I have two pairs of their slippers and love them but I cannot wear their shoes or sandals as they are wide for my foot. They seem to fit like my very first pair of Corrective shoes…

These are just my opinions and have not been paid (I wish!) in ANY way. I’m the one who paid for my new, totally rocking, orthopedic shoes and sandals. No tears shed over wearing these!

 

 

Balance Awareness Week September 18-24, 2017 is brought to you by the Vestibular Disorders Association/VEDA

 

vestibular.org

Mending Broken Dreams

Let Go and Let God

As children bring their broken toys

With tears for us to mend,

I brought my broken dreams to God,

because He was my friend.

But then instead of leaving Him

In peace to work alone,

I hung around and tried to help,

With ways which were my own.

At last, I snatched them back and cried,

“How could you be so slow“?

“My child,” He said, “What could I do”?

“You never did let go”…

Unknown

Yes, this is a very simple and maybe a little sappy (?) poem, but I love it. A good friend gave it to me while I was in school over twenty years ago now. I was away from my husband and two children (5 hours away!), feeling very isolated, trapped and out of place. I was the only student who’d moved to attend this OTA program, everyone else were locals. I immerced myself in my education with 3 like minded students (older) and we would become best friends with the top 4 GPA’s in our class. They knew me well and were very familiar with my PTSD story, as I am an open book! My friend slipped this poem into my hand saying, “I hope this helps you Margaret. You need to let it go”. I taped it to my bathroom mirror, where it remained for the next two years, water spots and all…

I’ll be honest, I feel it did help me…back then. I realized I’ve reverted back to ‘working things in my old ways’. My ‘broken toys’ back then, our lives after Mike was run over. Now though, it’s my Vestibular Disorder. I want my life back! I hate being dizzy…forever! I miss my impulsiveness! I miss dancing! I am a great ‘seated’ dancer, if I may say so. I see now, instead of calmly ‘taking my broken dreams to Him’, I’m afraid I just dumped it ALL on Him, I may have even just chunked some of it, with a touch of bitterness added! Yeah, that’s a prayer He would hear! “Here you go Lord”, (piling the load higher and higher), “Fix this! I’ll be back later to help…” I say as I turned my back and left.

Leaving my problems alone, even after I’ve ‘given it to God’, is something I just might be working on until the day I die! I want to be ‘all up in His business’, but I do believe He works alone…”Uhh, okay God… I’ve been dealing with this Vestibular crap since 2003 and it’s so difficult… It’s 2017 now. I just wanted to check in and see where You are on my miracle”? Surely, I’m not the only one living with a Vestibular or any Chronic Disorder who wants a miracle or at least, wants it all to just go away? Just wants it to stop? Simply desire your ‘old’ life back? And you just thought you had problems before a Vestibular Disorder?

Patience may be a virtue, but I often lack it, sadly. I’m great at ‘snatching back’ issues that I feel aren’t answered quickly enough. So… I’ve been doing more of a tug-o-war with God than truly giving Him my broken dreams? How exhausting! Is it because I now have a wheelbarrow full of broken dreams? What is more irritating than having work to do and someone interrups you, asking questions, “What are you working on now”? “How much longer until you’re through”? “How are you doing that”? That’s me…

I think I found this poem for a reason… I needed to see it again. I’m way too out of shape to do tug-o-war anyway, especially with God! I find myself bitter at times that I ever wound up with a Vestibular Disorder and I find bitterness doesn’t serve me well at all. If I am bitter, I know Depression lurks just around the corner, then comes anger. I can’t live like this, could you? It’s totally unhealthy, it’s ugly, and it’s isolating. My age too, has something to do with how I feel at this point of life. Just as I’m working (yes, still!) on ridding my life of physical ‘things’, my emotional baggage has got to go! I’m becoming ‘picky’ about what I ‘give my energy’ to.

I put a lot of meaning to this childlike poem but it is deeper than it appears. I am going to try this again. This time, I will gently place my broken dreams/life before Him. I will (try my best to!) forget about them, leaving Him to do his work (Come on, let’s face it, there’s a lot to fix!) for as long as it takes. I will practice patience. And I will leave Him to work alone, without insisting on ‘my old ways’ of fixing things. My way hasn’t worked anyway. While He is working, I will busy myself re-learning to enjoy life! Life as it is, at this point…

 

 

vestibular.org