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…

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

“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

I’ve Fallen Again But Not Like You Might Think…

This is a year  I will never forget  (I say that often, huh?) and I’ve been consumed by it! I know it must seem that I forgot about my Vestibular Disorder (I wish!) and my blog, I haven’t forgotten anything, I promise. I’ve just been so distracted by the fall I took on May 20, 2017 and I broke nothing! How can that be?

You see, on this date, our first granddaughter entered into this crazy world! I ‘fell’ in love so fast, it did make my head spin. I fell so hard, I sent out shock waves! Mike and I are ecstatic! This was never supposed to happen for our daughter, Sarah. She was told 15 years ago that having a baby was not in her future by her Doctor. See? Misdiagnosis happens to people in all kinds of situations.  I suppose God had other plans though! I feel He held onto this baby for her.

Sarah accepted her ‘infertility’ with grace and went on with her life. When she first became pregnant (but still not knowing), she went to her Doctor, just 2 weeks prior, for pain in her breasts (duh, usual first symptoms). ‘It was likely the change in birth control’, he told her. A few weeks later, we were awoken by a 9 a.m. phone call (a normal time of day for normal people but we don’t live a normal life. Mike works nights and we sleep in the day). Sarah blurted out, “Can we come over”? “Uh, yeah baby. We’re still sleeping, what’s up?”, I mumbled. “I have to come over mom. I need to talk to you!”, she had a franticness to her voice. So up we were!

When she came in, she was waving not one, not two but three pregnancy testing sticks! I immediately knew what they were but Mike was asking, “What ARE those things?”. She was illuminated with joy! I wasn’t going to question the ‘how’s’ of this wonderment. I knew where this tiny soul came from. She was truly Heaven Sent! Sarah was such a trooper through her pregnancy, I was in awe. I worried what the increasing weight might do to her pelvis, foot, and ankle but she only put on the weight of the baby! She did have to ‘go on bed rest’ the last month due to her blood pressure increasing, oh she hated being idle!

This precious angel was born via C-Section on May 20th. I am so very proud to introduce you all to my wonderful, beautiful distraction and heart of my hearts, Olivia Ann… As you can see from her photo above, she’s boycotting pictures! Mike and I are helping Sarah out for a short(?) while and keeping ‘Livvie’ (as Sarah nicknamed her). Olivia will be 4 months old next week and she is already ‘bored’ with my sedentary life but loves me singing ALL the songs from ‘My Fair Lady’! I know the songs to most Musicals of the 1950’s and on, much to Mike’s dismay! Mike does all the walking, walking, walking with her. He changes diapers, even poop ones! Who is this man? We are not the same grandparents we were for our grandsons, that became clear early on. This is a temporary(?) situation, Olivia will start daycare that is actually at Sarah’s work. It’s a bittersweet time for us. We’ve truly enjoyed this time with her but we ARE looking forward to getting back to our (ridiculous) schedule. I want to nap again!

Oh, Mike has reminded me (thanks so much!) that I actually did ‘hit a wall’ twice when lack of sleep caught up with me. Mike just calmly took the baby and told me to go to bed. I was out for almost 5 hours! I truly don’t think I could do this alone, actually I know it. I am very blessed though. Blessed in life, in love, and in laughing with grandchildren!

 

 

*Balance Awareness Week is September 18-24, 2017  Brought to you by the Vestibular      Disorders Association/VEDA   Website: vestibular.org

**More, lots more is coming very soon! Thanks guys.

 

Using a Cane With a Vestibular Disorder Can Be Dangerous to Your Health…

With my background in Occupational Therapy, I should have realized using a traditional cane to aid in my balance was a poor choice. I think I just chose to ignore this fact. It seemed the least obvious, to others, of my choices. As compared to walking sticks,  a walker, a wheelchair, or a scooter. I would gladly use a scooter these days if they weren’t so cumbersome to load and unload. Some of you may be able to use a cane with great success, not me though. I was recently forced into using my cane while visiting my dad in the hospital, but while attempting to stop a spinning spell by leaning on the cane, I almost fell! When I put most of my weight on it, it failed me, or maybe I just failed. The cane didn’t support me as I anticipated. Instead,  I began a wobbly stagger in a circle…That red-hot flush of embarrassment hit my cheeks as I managed a feeble smile at whoever happened to see me. I thought I was over caring what people thought, obviously,  I’m not. I had to re-evaluate how I was going to tackle this…

There are so many options, but I was ill prepared. It was up to me, myself, and I. With each visit (2x daily most days for two weeks), I discovered some coping mechanisms that helped me and I wanted to share. Maybe someone can learn from my errors, I hope so!

  • Use a backpack instead of a purse. The first day, I left the house with my mug of coffee, my usual large tote, 2 newspapers still in their wrappers, and my cane. Not until exiting the car, did I realize I had more stuff than hands! The tote is cumbersome anyway (my life is in there!) and when worn on one shoulder, it throws off my balance. Then, I grabbed my coffee and cane. Oh, and the two newspapers. Off I go, quickly having to readjust myself, over and over and over again…Using a backpack frees up your hands and shifts your balance upright. It also held my tote, coffee, and anything else he requested! I ‘graduated’ to using a small crossbody purse after a number of days, which is a great option also.
  • Wear sunglasses. I’ve always had sensitive eyes and they not only protect our eyes from the sun, I find them helpful when maneuvering the sometimes overly bright, white hallways. White floor and walls are very disorienting to me. I used the colored lines on the floors (meant for patients) to help me.
  •  Fluorescent lighting is an irritating stimulus for most of us. Wearing sunglasses indoors can cause stares from people wondering, “Who do you think you are? A movie star”? I just tell them, “Why, yes I am and I’m incognito. Please don’t tell anyone”… Bad Margaret!
  • I found out (at the end of the stay), they offered wheelchair loans while visiting. No, I didn’t utilize them. Darn false pride! When the next time comes around, I will call the hospital and inquire what they offer, before going.
  • I did have a few people (mostly elderly) ask me why I needed a cane (as I’m such a youngster at 61 years!). I took the opportunity to briefly explain my Vestibular Disorder. All of them could identify with dizziness and one had Tinnitus. Never miss an opportunity to educate, you never know!
  • Ask for help if needed! It is a hospital after all.
  • Take care of yourself! Caregivers need care, too. I tend to put on the bravest face possible, so it’s difficult for others to understand when I’m crashing because I ‘look just fine’…Don’t we ALL since it’s invisible? I did crash a few days…Maybe I need to take my own advice!

Success, Large or Small, Is Still Success

I don’t consider myself a ‘whiner’, although it may come across as just that when I talk about living with a Chronic Invisible Vestibular Disorder. Now, that’s a mouthful in and of itself! I’ve talked about the many things I am no longer able to do (with ANY sense of confidence, anyway), that I forget the things I was/am able to do. Just because I deal with dizziness and imbalance daily, doesn’t make me ‘useless’. Just because I can no longer work for pay, doesn’t make me useless. I think I’ve proved to myself, by starting this blog, that I can write. Mother would be so proud! I think I’ve proved I can step outside my comfort zone by becoming an Ambassador for VEDA. I’m part of an Online VEDA Support Group Network. Now, I’m helping an aging parent. Can a chronically ill person really take care of someone else? Time will tell…

Whether or not it comes to fruition, a recent request to use ‘my’ story for the Vestibular Disorders Associations/VEDA newsletter, made me remember something. During my years of undiagnosed Vertigo and vomiting and taking tumbles that resulted in broken bones, I did accomplish something, a really big thing! Somehow, during one of the worst times in my life, I designed and made our daughter’s wedding dress. Ten yards of fabric, 748 gold beads, 372 pearl beads, 3 fabric roses, fully boned corset style bodice with a hand picked zipper=one totally extravagant wedding gown! Less than one yard was used to make the bodice (top) and NINE yards was used in the skirt! How on earth did I do that?! Did I ‘will’ myself to do it? Was it a miracle from God? I’d say, a little of both…

In my now 61 years of living, I’ve had more than one career, not that surprising. My first (and most important) career was a stay at home mom. Prior to becoming an OT Assistant, though, I actually designed wedding and evening gowns for over 10 years. I’ve sewn since the age of 7, an apron with matching potholder was my first project. I was taught sewing by my mother and her mother, the seamstresses in our family. My grandmother taught me all the finest couture techniques (hand work) during my Summers as a teenager. As a young mother, I became part of a Designers Guild, putting on multiple fashion shows a year. I thought it was glamorous and it was a blast! It was a lot of work, but I loved it. Our children sometimes watched me constructing the gowns from the other side of a ‘kiddie gate’.  We all know these barriers are only useful until they learn to climb over it! More than once, Lewis ‘helped me’ by removing pins that held fabric EXACTLY where I wanted it on the dress form, then re-pinning the fabric into his design…Working out of your home doesn’t always work… I did this long enough, though, for Sarah to expect me to design hers one day. I think my feelings would have been very hurt if she’d wanted to buy one, Heaven forbid!

When that day came for her many years later, I had to do it. I just HAD to! But, it would take me 3x longer than in the past, because I was so sick and still undiagnosed. My ‘usual’ timetable for an original gown would be around 3 months or more depending on the complexities of the design. Here’s some of my process from when I had my business. I met with the client, listened, looked at their magazines or pictures. Then, I’d sketch out a few designs, meet again, and they’d pick one. From there, I took a ‘million’ measurements (kidding…kind of!) and made a pattern from a special paper (NOT the tissue paper you get in a store pattern!). Once the paper pattern was made, the entire gown is cut and constructed from muslin fabric. The muslin gown is fitted and altered (it better not need altering!). Then, it’s disassembled to become the pattern. All this is done prior to cutting the gown fabric. I learned this the hard way! I HATE to alter gowns, absolutely hate to! My work is meticulous. My gowns fit! I loved to show the client how the inside of my gowns was just as beautiful as outside (couture work)!

Oh, I did complete Sarah’s dream wedding gown, but I was working on parts of it until the last second. As in, literally the last second! I did most of the beadwork over the months while sitting in bed, a tray full of golden beads with needle and thread ready to sew. Mike grew fairly tolerant of waking up with gold beads stuck to us in the morning. Actually, any and all handwork was done on my bed or the couch, which was the bodice/top of the gown. Sarah had lost so much weight during the making, that it was likely half of that by the end, the dress is a size 0! You know, that made up dress size that didn’t exist when I was young…  Then, I had to gather the remaining 9 yards of fabric for the skirt and attach it onto that tiny little top! Ugh! It weighed a ton! It was hot! I was so sick and oh, was I tired!

Finally, all that was left to complete was the hem. Again, under normal circumstances, I would have done this by hand. Beautiful. Delicate. Invisible. Yes, all 9 yards would have been hand hemmed, but not this time. I used my serger and did a machine hem. Oh, the shame! Oh, the horror!  That’s all I had left in me, a machine hemmed gown for our daughter…A serger is a machine that both cuts and sews a seam or hem like they do in factories. Go ahead, check the seams of your garments…It’s a very cool machine and I love it, but not for Sarah’s dress. But this time, I did. Zzzzzzzzzzzz….I was almost to the end of the hem, only about one yard left. It started dragging and I started pulling. “This isn’t happening!”, I screamed in a pitch that hurt even my ears.  The cutting blade had become dull, no longer cutting the fabric properly. I pulled that damn fabric through it, though. Yes, yes, I shredded some of that last yard, but it was done!

The finishing touch was to hand sew a label my mother made for us (with her computerized embroidery machine), which read, “Made With Love by Mom”…And that it was! So, I did accomplish some things during one of the worst periods in my life…Huh! Think about it… I’ll bet you too, have made accomplishments during these very trying times that you may have forgotten or not given yourself credit for. You got out of bed today? You showered? You played with your children? You were actually able to work this week? Big or small, they are still your accomplishments, celebrate them!

For more information please contact vestibular.org