Who Turned My Life Around?

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

 

Advertisements

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

 

How Do Dizzy Moms Survive Raising A Child?

I don’t know how many of you are dealing with a Vestibular Disorder and a baby but somehow, I am back in that mix. Americans have created a new ‘norm’, grandparents raising/keeping their grandchildren. Some grandparents do it because their choice is, raise the child or loose them to the ‘system’. Mine was a choice, sort of… Mike swears it was my choice but that’s not quite how I remember it…not unusual in our marriage. I found myself, back in time somewhere recently. A time before I found my voice, when I didn’t or couldn’t say, “NO”!  Mike and I were on our last day of a long over due vacation this past Summer. Our daughter Sarah, called us in a panic! There had been a ‘snaphue’ with her childcare located at her work place. If she’s in a panic, then I become panicked, not the best mom trait I realize. It is just part of my PTSD and if I’m honest, I am a ‘problem fixer’. While in this (out-of-body) state, I apparently agreed to keeping our new granddaughter until the ‘slot’ opens! Brain fog, I tell you! What did I get myself into???

In reality, Mike is doing more than me, I could NOT do it alone. I am sure there’s a dizzy mom (or two!) reading my blog and they understand what I am saying. How do YOU do it? I give you mothers’, doing the immense job of raising a child while dealing/living with a Vestibular Disorder, a standing ovation! Here’s an example of our new typical week We get up at 6:15 am to be ‘ready’ for Olivia (put on a robe?) at 6:30 am.  It’s a mad rush for us just to get to go to the bathroom and make coffee (must have coffee!) before she comes. Sometimes, it’s an ‘either’, ‘or’ situation. Occasionally, we actually pull it off. Sarah is very prompt and after a quick hand off, Olivia is ours for the next 10 hours, yes, TEN hours! Mike continues working nights and I continue waiting up for him. We are now getting 4-6 hours of sleep (just like a real mom) then, trade-off catching naps.  I have to get sleep or I will have a flare of Fibromyalgia (ME! ME! ME!). When does Mike get any sleep? Usually while holding Olivia… Some days, I am able to ‘let’ him sleep for more than a few hours (aren’t I generous?). It just depends… and that SUCKS!

Do I regret ‘making’ this decision? Not at all but doing this while dealing with a Vestibular Disorder totally changes the experience. When Olivia was an infant, I rarely had problems as it was all feedings, diaper changes, and gazing at her while she sleeps. I hold her in my lap ‘croaking’ out show tunes from ‘My Fair Lady’, all the usual childhood songs, 1,2,3’s, ABC’s, etc. She is a ‘normal’ baby, so this stage didn’t last long. She quickly learned to roll, twist, turn, pivot (all developing her Vestibular System!) and before we knew it, she was sitting, then quickly mastered crawling. Now, she’s trying to walk! In reality, Mike and I were able to see all her ‘firsts’ and watch her huge smile go from being just toothless gums to now having 5 (going on 6) teeth!

Among her favorite things, turning her head upside down, similar to the Downward Dog Yoga position and I can’t do that simple thing… she loves throwing herself backwards while sitting in our lap (better have a good hold!) and look at her world upside down. I can’t do so many simple, silly, and fun things that I could before I acquired a Vestibular Disorder. I know I’m not alone in this… I know also, I have accomplished some things I thought I couldn’t. Keeping a baby is one of those things and it’s a fantastic form of VRT, also. I’ve tried laying on my back, flat on the floor with her but it always made me dizzy. At least I was already on the floor, where was I going to fall, then? I modified this play activity by stacking pillows to raise my head to my optimal position and I could do it. I wasn’t laying actually flat though…

This time will soon end for us, when she begins daycare. Will I miss her beautiful face and her giggle, and her chubby legs and precious little fat feet and…? Of course! We will still see her every weekend. I envision myself being a ‘better’ Memaw because I won’t be the Zombie I/we have become.

 

 

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