Tag: Invisible Illness

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

 

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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

The True Cost of Being Chronically Ill…Part II

As working, tax paying Americans, money is withdrawn from our paychecks, each and every time we are paid. We are told, that a portion of this money goes into Medicare. That we’d receive the benefit when we turned 65 years old…That in ‘old age’ we’d have some help with our medical needs after retirement…Medicare was never intended to be our sole coverage, it was meant to assist us. I grew up believing this. My career was cut short by acquiring a Vestibular Disorder. I made good money when I worked, really good money. If you earn no money, nothing is put into the funds. When I went on Disability, Medicare gets used prematurely. By the time Mike and I are able to retire, there will likely be nothing left of our Medicare System. The long, sticky fingers of our government have been slowly, but surely picking it clean for decades. It’s the ‘bait and switch’ game the government plays with our money. Funds are ‘borrowed’ from one ‘system’ and used for another failing ‘system’. I suppose this falls into the ‘life is hard’ or ‘don’t believe everything you hear’ or ‘yes, life sucks’ categories.

One thing I do know to be 100% true, not ONE person that has a chronic illness wantedto be sick every day, for the rest of their lives! Who would? Why would they? I will admit, that before becoming a chronically ill person, I did kind of enjoy the attention given to me if I had the flu or something. It gets ‘old’ being ill…quickly. As a young mother, I so rarely got sick it’s hard for me to believe what I’ve become. This was the ‘me’ before stress went from being a great motivator to something I could not cope with. Mike was in two near-fatal car accidents. We almost lost Sarah at 7 months due to a HUGE misdiagnosis and our Church abandoned us. All of this happening within a matter of just 3 years.

This near endless stress from this short time period obviously took its toll on me with my first chronic conditions, PTSD (Post Traumatic Stress Disorder) with insomnia. Most of us associate this with war veterans, but it can happen after any traumatic event. That was quickly followed by diagnoses of Depression and Anxiety Disorder. A 2 1/2 years separation from Mike and our children while I earned my OTA Degree and another chronic illness, IBS (Irritable Bowel Syndrome). I was diagnosed with Thyroid Cancer the final months of school and had surgery only 3 days after sitting for my Board Exam. No stress there! I would be diagnosed with Reflux and Ulcerative Colitis a few years later. My career as a COTA was a relatively short 12 years before my Vestibular and Fibromyalgia diagnoses. That was enough for me, more than enough and I never asked for any of it!

For me, the true cost of being chronically ill is not only financial but it’s been the loss of self. With each diagnosis, I lost a little piece of me. I’ve had to morph myself many times (wife, mother, caregiver, Therapist, back to the wife, now Disabled wife, and grandma). How do I do this, yet once again? Take a breath. Break down tasks. Listen to my body.

  • I begin by not allowing my illnesses define me. Of course, this is difficult on one of ‘those’ days but I try my best because I am so much more than a bunch of disorders.   You are too, never forget this!

  • I’ve  accepted that there will always be people who doubt me (remember, all are invisible disorders). These individuals are either uninformed or creepy people who make ‘fun’ of me or my situation. The uninformed are easy, I educate them. The creeps? Ignore them when possible, engaging with a person on that level will get you nowhere.  I have engaged with that caliber of person…I accomplished nothing more than embarrassing myself.

  • I have a number of books that are motivational, spiritual, and medical. I love reading books, real books. Education is power!
  • Journaling is so therapeutic. This is a way to ‘say’ whatever I want to whoever without ramifications. Only my eyes will see it.
  • I continue with my VRT throughout my day, as I’ve adopted a mindful approach to almost everything I do. A daily goal? Moving more without falling and I’m doing well with that!
  • I try to do something every day that I love and can still do, art! It can be a cool outlet for those living with Vestibular Disorders. In doing the drawing or painting movements, you are doing VRT and don’t even know it. You need to track the lines drawn/painted as they’re made to complete a picture. Have fun with this! Draw in all the planes, horizontal, diagonal, verticle or circular lines. Make your own pattern to use in your VRT or hang it on your wall!

                                                                  vestibular.org

The TRUE Cost of Being Chronically Ill…Part I

The state of our medical care, in America, has come to a ‘head’. We have two political parties who do nothing more than squabble with each other, playing with the lives of Americans. The chronically ill are entangled in a spider’s web, flailing about helplessly, as we’re entangled tighter and tighter, waiting to be eaten alive (by insurance and pharmaceutical companies). I think anyone who reads the news knows, before our recent election, we were told one thing and now, that seems to be changing…daily. ‘Nothing will be changing, we just are getting rid of Obamacare’ and ‘We will cover pre-existing conditions’ to the most recent ‘Pre-existing will not be covered’. Think about just that, the not covering pre-existing conditions. IF that does become our truth, Mike and I are sunk, and I’m sure we are not alone. I know we’re not alone! The last time we were in a situation of needing to buy our own insurance, we were told we were ‘high-risk’ customers now. Interesting, as it was the same company that had been covering us. It was going to cost over $1800.00 a month, which was more than was being earned at the time! Thankfully, Mike found work before we were forced to pay that utterly ridiculous amount.

Another year and yet, ANOTHER change in our insurance companies! In these 43 years of marriage, I’ve lost count of how many different companies we’ve had, I would guess at least one dozen. Each one with their own requirements and deductibles. Costs are astronomical for the ‘average Joe’ (us) and it appears the ‘benefits’ are more on the side of these companies, not us. Our medical communities are in burnout. Mountains of ‘red tape’ paperwork keep doctors buried and away from treating patients. Doctors are closing or limiting their practices due to the cost of Malpractice Insurance (‘everyone’ wants to file lawsuits, just watch T.V. ads!), slow reimbursements from Medicare, and new requirements to provide insurance if you employ ‘x’ amount of employees.  Mike lost his GP of 10 years when he decided to become a ’boutique’ physician. These doctors have said, ‘Screw all this’! They take no insurance and you pay a set amount (up front) for ‘x’ amount of visits. This type care is for the wealthy only. We may feel a sense of ‘comfort’ by being insured, but at what cost and to who?

Is a change in your medical insurance ever a good thing? Maybe for those employed by a ‘Top 10 in the USA’ company or those earning a great salary, it might be. Mike and I are just living our lives, ‘one day at a time, one bill at a time, one prescription at a time’. We live a modest life, a fairly solitary life, just doing our best to be good people. I know we’re not alone in a life such as ours, there are millions of people in our situation, struggling through life. I realize also, that many of you in other Countries, have very different Medical Systems than ours and even more Countries, with no coverage at all.  I’m simply saying, I had absolutely NO say in this matter and the new insurance has coverage that not only costs more but covers less! So, who’s side are they on? It’s a business, they want to make profits. Don’t we all?

Here’s an example of how our new insurance pays. Last week,  I refilled a prescription as usual. With our last insurance, the medicine cost $20.00 (how I budgeted it with a manufacturer coupon). And with our new one? $116.00…Yes, one hundred sixteen dollars, more than 5x what we budgeted! Oh, and they don’t ‘accept’ coupons. I was forced to go without that medicine for 3 days, waiting for our next check. DEEP sigh…I take seven prescriptions, this was just the first one I’d filled. Needless to say, we’re going to have to rework our budget as we begin the process of refilling each one…I’ve already received letters from the insurance company with their ‘suggestions’ for alternate drugs. I don’t have a problem with saving money, I need to save money. It’s that their suggestions are medications I tried and no change or had a reaction to it. The representatives I talk to, know nothing about me or my conditions, they are just reading a ‘script’ about ‘this condition or that condition’. Sigh…

*Continue reading Part II

For more information contact: vestibular.org

What The Hell Is That Smell?

Hyper ‘smell-a-vision’, as I call it, is something that occurred when I became ill with the Vestibular Disorder. As if the Vertigo, the vomiting, and the falls weren’t enough, my sense of smell became alive. I smell everything now, real or imagined! Now, I have more of a smell/gag reflex and it drives Mike crazy. “Hell, I’m the one living with this!”, I remind him over and over. Food was a huge part of our lives, we loved cooking gourmet meals together, dining at fine restaurants with a good bottle of wine. That was then, this is now. Is this a side effect of the original infection? If it traveled to my inner ear (in your brain!), why not to the Olfactory System? Who knows, but it does affect my life. It affects my appetite. It affects my willingness to go out where smells might be, as silly as that sounds. I’m weird, I know.

I’d noticed this funky smell in my kitchen recently every time the dishwasher ran. I use vinegar as an inexpensive rinse agent for the hard water in our area. So this was a vinegar AND another funky odor smell. I thought I’d try a dishwasher cleaner, that would surely resolve it. No, it was still there. Maybe it was the disposal? We don’t even use the garbage disposal, but maybe our grandsons put something in there. So, I bought a garbage disposal cleaner (how many different cleaners do they make?). And…it’s still there! I persisted with the “I smell something funky in my kitchen” rant. Mike looked at the dishwasher and said, “It just has two screws holding it in, I’ll look at it on my days off”, which brings us to today. His ONE day off this week due to a change in schedule.

Well, to begin, the dishwasher had SIX screws holding it in, not jus two. After removing the last screw, the footplate fell off and dark water flowed out. GAG! We weren’t prepared for that! The scatter to locate our old ‘ring style’ mop and bucket looked like a Three Stooges episode, us all running in different directions! I use a steam mop now, happy to be rid of that mop, so it was finally found in the shed outside. Mike partially pulled the dishwasher out and stuck the mop in. The mop came out very dirty (GAG!), but only damp. I shone a flashlight in the cabinet. “I thought there wasn’t water in here Mike”! He comes back quickly, “There’s wasn’t”! “Mike, there’s water all over the floor and it’s still coming in”! I’m such a help with my flashlight, doing nothing but pointing out the horrors yet to be known. There was water, though… He pulled the dishwasher completely out.

We mopped up the water, but where was it coming from? With the dishwasher out, he could check all the hoses and hookups. Thank God, I have him to do these things, as I don’t like’dark and dank’ places (does anyone?) and lacking the funds for a professional to fix this. One by one, he carefully cleaned, dried and checked each hose and connection. They all appeared fine, so he did a ‘test’ run using only the rinse cycle. It made sense at the time…The cycle completed and began to drain, we gathered around as if it were the most interesting event ever! Everything seemed to be working properly. The question remained, where did that water come from? Ask, and ye shall receive…”Mike! Water is running back in”! His response contained way too many expletives to write, but let’s just say, he wasn’t happy…

Upon closer inspection, we realized the water was coming from behind the cabinets! Behind the cabinets is a sheetrock wall and behind that wall, the main plumbing…This is going to be a MAJOR job! We (Mike and our son, Lewis) will have to fix it, working under the sink, inside the cabinet, to cut a hole through both the cabinet and the wall to discover whatever else awaits us…THIS is how Mike spent his one day off, then had to leave it in disarray, until a later date…I have much more important things going on at this same time. My dad. I will be driven back to his house for a number of weeks on Monday. Sometimes, when you think you have it bad until something worse happens, it puts life in perspective. This is one of those times. I have no doubt it crossed Mike’s mind, “I wish she’d lost her sense of smell instead of her balance”. But no! I get a hyper sense of smell from…a virus? Explain that, if you can, because I sure can’t!

This was just a ‘day in the life’ of post. Would it be any different if I weren’t dizzy on a daily basis? Of course not, but I might not have this ‘Bloodhound’ nose, though. Am I glad we found this out sooner than later? I suppose. Is there ever a convenient time to have a disaster happen? As it stands now, we are without kitchen plumbing. Dishes are done in two dishpans in a bathtub, for now. So wish us luck learning how to DIY plumbing, sheetrock repair and reinstalling our dishwasher, we’ll need it!

I just had to know what that funky smell was…

For Every Step Forward… Another Awaits

I am still recovering from the Holidays of 2016, how about you? Were you able to be part of it or was your world too topsy turvy to enjoy it? I do know, I’m happy to say goodbye to last year and ‘HELLO!’ to 2017. I have many hopes for this new year, one of which is to become more active. I have a new pair of Keen shoes I won as part of VEDA’s 2016 ‘Defeat Dizziness’ social media campaign, just waiting for me to use! Not that I haven’t worn them already, I just love them for the comfort and they make me look fit! Our treadmill awaits me…Yep, still there…Dang, it! Just waiting for me to take a step forward because another step awaits!

We had a lovely Christmas, my greatest gift being a dizzy free 2 week period! Our grandsons were here for a full two weeks, which is both a blessing and a curse. The younger grandson came with a cough, which always terrifies me. I can’t help fearing illnesses after the way I contracted my Vestibular Disorder (through a sneeze). Regardless, I accomplished so much in those 2 weeks, that just didn’t happen in previous years. I decorated our home (after Mike and Lewis brought it all down from the attic!), put up a tree (again, Mike and Lewis) and actually decorating it (this, I did do alone). Unexpected emotions took me over as I unwrapped ornaments. The majority of them were given by my mother. Her gifts were always so thoughtful and personalized, even her Christmas ornaments, which she gave us every year into adulthood. Bittersweet memories and many tears later, our tree so beautiful in the end. I really couldn’t make sense of my ‘non-dizziness’ that was going on, but I was going to go with it! I made Chocolate Truffles and my ‘trademark’ Vanilla Lavender Shortbread, three batches over the two weeks of feeling, dare I say, good! I actually went with Mike to a store for a little shopping (note I say ‘a’ store. A single store, with a list, still using the shopping basket). I’ve done 100% of my shopping on Amazon previous years, so to actually get out and to actually shop was exhausting, but I did it! I wrapped gifts. I attended the family Christmas dinner at my brother-in-law’s home and actually enjoyed myself! All the things I consider ‘Christmasy’, I was able to do…What was going on with me? Should I even question not being dizzy?

Some might say, “You did half what I did. What’s the big deal”? Well, the big deal, the huge deal is, for the past number of years, I was unable to do any of that. My home didn’t have one thing to even insinuate Christmas too many years. When I was feeling so horrid, I could have just let it pass altogether, but with children or grandchildren looking to you to make it happen, it’s difficult. For those of us dealing with Vestibular Disorders, the Holiday Season presents so many triggers! The lights, the sounds, the smells are all wonderful IF you can handle it. Smells are either wonderful or noxious to me when I’m nauseated. My husband can say, “Mmmm! Doesn’t that smell good? Do you want some?”, as I’m literally gagging from the odor. This is an odd ‘side effect’ from throwing up for so long prior to diagnosis and never went away. I’m left with a ‘hyper gag’ reflex, meaning I gag a lot! Certain smells, thinking about something gross, seeing something gross, all of these make me gag. I can laugh about it at times, but when it happens in front of others, it’s very embarrassing. Lights are another trigger. If they are non-blinking lights, it doesn’t bother me, but blinking or strobe type lights do me in. It seems there’s a trend for increased movement with Christmas lights. Homes now have lights that move to music! While this an amazing accomplishment, is not enjoyable for me to watch…at all!

So, I have these two great weeks at Christmas, the timing perfect, just before Christmas and almost a week after. Then I got a cold (remember our grandson with a cough?). While it passed quite quickly with about three days of head congestion, it brought back dizziness. Of course, if I’m sick, Mike also gets sick. We were well for only a short time when it hit us again, but this time with a vengeance! We never ran a fever, but we felt like we had the flu. No, it was ‘just’ Bronchitis…I’m still plagued with a nasty cough, but we’ve finally rid ourselves of that mess! My OCD came out during this sick period, using up a can of Lysol, and cleaning everything with Clorox (over and over and over…).

What did I learn from this recent bout of illnesses? I learned (yet, again!), if you’re sick, you’re sick! Give in to it. Meaning, listen to your body and treat it accordingly. Miss work if possible, you will only pass it on to others and possibly catch it again (like us). Mike’s job has no sick leave (seriously), so when he missed one day of work, he has to work a double shift to make it up (seriously? Not one day for illness in 365 days?). But taking that one day off, to take Nyquil and sleep around the clock, made a huge difference! Taking care of ourselves seems like such a no-brainer, yet how many of us actually do this 365 days a year? How many people and responsibilities do we put in front of ourselves? For me, it’s more than I can count, I even put things I can no longer do, on my to do list…why? Old habits, old messages of what I should do. These are things I have a hard time keeping in their place. Being a full-time mom tends to make us become that person who puts their needs on the back burner. I used to joke years ago, when our whole family was sick, “Mom can’t be sick…”, but the truth is, we sure can and we do! We just don’t ‘show’ it, right? If I was sick, who’d take care of the family? ME, of course! This was when our kids were young, prior to me having anything, of course! As life has its own jokes to play on us, Mike is now the one to take care of us all…

For now, I will focus on and be grateful for those two weeks of non-dizziness. I will be grateful for all I was able to accomplish during that time. I was so grateful for getting my tree up and decorated…it’s still up! Oh my, isn’t that bad luck? Too bad, I’m looking forward to a fantastic 2017. It may have begun with a couple of bumps in the road, but my excitement over the new year, ‘trumps’ anything! (pardon the bad pun, but I couldn’t resist!).

It’s Not Selfish To Put Yourself First

In your life, you’ve likely held many roles, such as a student, an employee or employer, a wife or husband, a caregiver to a parent. Life at certain times dictates that we put others needs first, such as when you have children. Of course, they have to be first, they are totally dependent on you and for 18+ years at that!. We, the chronically ill, have certainly been the center of attention for many months or years dealing with your Vestibular Disorder. I doubt that was enjoyable for you, all the questions, the testing, and a diagnosis you didn’t ever want in the first place. For me, it was two years of true Vertigo and Nystagmus and yes, all eyes were on me (watching me fall). This kind of attention can wear a person down. Privacy becomes a thing of the past. Even though it was done ‘for my safety’, it still  felt an invasion of my privacy. Being the center of attention is not the same as putting yourself first and doing so is not selfish, it’s you taking care of self. At some point, we have to put ourselves first and cherish the mind, body, and soul that needs nurturing. How do you take care of self, without feeling selfish?

As a child, I watched my mother give selflessly for all of her children for 18 years (x4). She was a stay at home mother, by choice, as she was a College-educated woman. She instilled us all to become self-sufficient adults, but somewhere along the line, I got the ‘message’ that it was selfish to put yourself first. Maybe because I don’t remember her doing that. Her role in the family was multi-faceted, but being the caregiver was her most treasured role. What a surprise that I too have the caregiver role in my family! Since my 2003 diagnosis, family roles have been thrown up in the air for sure. My husband (the provider role), had to hone his caregiver skills. He was an involved dad, changing diapers,  bathing, feeding, learning  you can do all kinds of housework with a baby on your hip! By the time I got ill, though, his skills needed some coaching. He’s since taken over the grocery shopping and most errands. He vacuums and mops, he’s a keeper for sure! He’s never says anything but praise for me and ‘all I do’ for the family.

Personally, I struggle with all my loses…but, I’ve  begun keeping a Gratitude Journal. I’m finding my lists of losses grows shorter as the gratitude list grows longer. I find myself being grateful for the ‘little’ things, such as surviving a recent two-hour grocery store debacle! Yes, I said two hours…the store had rearranged all the isles, so it took about 3x longer than it should have. In reality, this was a good thing, as it can be considered VRT. I was miserable after about 1-hour, but I was doing it, that’s something to be grateful for! I’ll be honest, I wanted to bail on Mike more than once and I was totally draped over the shopping cart by the end…I did it,though! Happy dance! I was absolutely zapped the next day, my head was swimming, I felt off balance, my out of shape body ached all over. In the past, I was getting massages 2x a month, but I can’t afford to do that any longer. So, how could I treat myself while having no money? One way is to get in our hot tub and relax. I am blessed to have a hot tub.  That was my gift to myself years ago (well, I guess it 2004 for the Fibromyalgia), so to use it now doesn’t cost a penny! It’s still a treat and extremely relaxing…

Some other ways to treat yourself for little to no money:

  • Take a bath or shower…linger…(light some candles, put in some Epsom Salts…)
  • Start your own Gratitude Journal (just a spiral notebook will do)
  • Sit outside and enjoy nature. Look above, below and all around. Then, close your eyes, taking in all the sounds and smells
  • Watch a new or favorite movie (Beaches anyone? Four Rooms?)
  • Give yourself an easy body scrub using sugar and vegetable oil (I do it in sections over a couple of days, as it does take energy to do a scrub)
  • A manicure or pedicure (even if you’re the only person to see it)
  • When was the last time you turned the phones off and read a book? Make it a ‘real’ book (not a Nook). I grew up with a home library with all the Classics and more. A book has such a comforting scent to me…
  • What about some ‘guilty pleasure’ T.V. shows? Real Housewives or Toddlers and Tiaras? Trash T.V. at it’s best!
  • I’m an Art lover and used to go to Museums, but now, thanks to the internet, you can take a tour of Museums from all over the world.
  •  If you can help another person, just one, do so. I can’t tell you how great this can make you feel! Can you really put a price on making someone smile?
  • Listen to your favorite music or try something new. YouTube rocks for this! The first 2 or 3 years of our marriage, music was all we had, as we didn’t yet own a T.V. I should have never bought a T.V. as watching it can be so consuming. It’s all about balance (it really is for us Dizzies!)…
  • Dig out that old hobby that was left by the wayside when you became ill.
  • Meditate…
  • Do some Yoga stretches. There are many I’m unable to do because a particular position makes me dizzy (Downward Dog)
  • Play dress up! When was the last time you wore high heels? I occasionally get all dressed up, just to lay in bed, because I miss my heels…I can’t walk in them, yet am not ready to get rid of them!

I hope you see the importance of taking care of self. We may not have control over many areas of our lives, but we can do something to make us feel better. If only for a short while. These Vestibular Disorders take so much out of us. Isn’t it time to put yourself first? Give it a try, I think you’ll enjoy it!

The Decision…

In the above picture, the story goes, I said to one of my cousins, hands on my hips, “You’re not the boss of me”! Oooh, Little Miss Sassafrass!  What a little spitfire! What happened to her? I search deeply into my eyes for that Margaret, with that spark, but what looks back are eyes that have been through a lot, seen a lot. Too much for just one person, one family to have lived through in 43 years of marriage. Mike is my main caregiver, yet has survived 2 near fatal car wrecks, the first was a rollover with ejection from the truck. The second, a drunk driver ran into a crowd hitting Mike. He was drug under it for 75 yards. I watched in horror as he disappeared into the darkness. We had just been sitting and talking…Here’s an example of how different we all are, I wound up with PTSD and Mike has nothing after that experience. I wish my Vestibular Disorder was the only stressor in my/our life, but it isn’t.  I wish so many challenges hadn’t been put upon us, it wasn’t fair, it wasn’t right. But, if I hadn’t gone through them, I wouldn’t be who I am today, either. I struggle to find my identity, my new identity.

So much time has passed since my diagnosis in 2003, you might think I should just have ‘accepted’ it. I ask you, would  you just accept it? Don’t you think hope would remain? We are all survivors in this game called life, in one way or another. For some, just to wake up another day is something to be celebrated, and it should! Others, like us, too often wake up with a feeling unrested, having a ‘foggy’ brain and the sense of uncertainty (will I have symptoms today?). If we’re lucky and it’s a no symptom day, then, we celebrate! If we wake to a world off-kilter, the feeling is more  one of dread. I chose hope and I am a person of Faith, so I hang in there another day. In all this time, though, Science and Research chugging along, making progress with certain Disorders and continued confusion with others. I feel the biggest confusion comes from doctors  not taught nearly enough about the Vestibular System (the 4 Systems involved). I could never have become a doctor, their responsibilities are mind-numbing! The truth is, if something doesn’t change, there will only be more people in my position. Then, they too will be forced to make a decision.

The decision to go on Disability was one I did not take lightly. First, and foremost, I felt shame. I worried what others would think about me. I know people using the ‘system’, people who didn’t really need it and that pissed me off. Obviously, I didn’t want to be perceived as one of ‘those’ people. It was seven years of working to ‘get well’. Seven years of keeping up my Continuing Education and license, because I was going back to work, after all. Yeah right! It was seven years of learning everything I possibly could about both my Vestibular issues and the Fibromyalgia diagnosis. I have no doubt, I had Fibromyalgia for over one decade before diagnosis. Their overlapping symptom? Dizziness. I changed so many aspects of my life in this attempt. I changed my diet (just a healthier diet), my sleep habits (sleep hygiene), and tried to lower my stressors (never happened). I started numerous exercise programs, but my balance continued to hinder my success with anything but yoga (Downward Dog is out). Discovering the Wii did more than just games, I found the ‘evaluation’ Wii used, addressed balance and it was fun! Hmmm…I need to reclaim it from the grandsons’ bedroom, bring it back into the living room. After seven years, I gave up the concept of returning to work and began the process to apply for Disability. Was I one of those people now? Oh, what shame…

I did have help with the massive amount of paperwork, not a Lawyer but a Social Worker. I’ve heard nightmare stories of people’s attempts to obtain Disability. Lawyers are puking out  television commercials to ‘help’ you get what’s needed, what you and I spent our lives working for. Every paycheck, it was taken out of our checks, like clockwork. What really sucks, what about all the women who chose to be a stay at home mom? I was one for 15-years, and I loved it. I took pride in doing it, but it left me with huge empty chunks on my Social Security. $0.00 is your value while raising children here.  In the USA, to qualify for Disability, it must be ‘proved’ that you will never be able to return to work. Now that, was a big pill to swallow, never…really, never? Actually, you can try to go back to work with a 9-month window allowed.

For me, I was approved the first time and paid  3 months back payments (don’t get mad!). I have no idea what was done (or not done) differently, but it was not the stressful event my mind had imagined. I feel for those who are having difficulty with the process. Because when you feel like we feel, we do not need this extra stress. Part of the problem is political. I feel our money has been tapped into one too many times.

My Vestibular issues aren’t my only health issues. I also deal with Depression, Anxiety/Panic Disorder, Fibromyalgia, Sleep Disorder, IBS, Ulcerative Colitis, Reflux, with the PTSD and Vestibular Disorder to round it all out. Oh, and I also had Thyroid Cancer in 1994. I was still in school when the doctor called with the “Margaret, you have Cancer”call. I had 2 months left to complete my rotations, for school to be over! I gave him the, “I’m too busy right now. I’ll get back with you” answer. Stupid, very stupid I know! I had the surgery 2 days after sitting for my Board Exams. Putting this all down on paper it’s shocking to even me! It’s crazy, I know, but some of us are just that lucky…I want to scream at the top of my lungs to all my illnesses, “You’re not the boss of me“!

 

 

http://www.vestibular.org

 

 

 

 

Still Working On Team OT…

For the past few months, I’ve worked diligently on VRT, but using  Occupational Therapy philosophy this go around. There’s no ‘miracle’ to report, but what has changed is my activity level and that can’t be ‘bad’. I’m also, using a mindfulness approach, which simply put I am forcing myself into really thinking how I go about my day. I’m working on my posture. I’ve talked a bit about how OT looks at every area of our lives and how we do it. I’ve made simple modifications at home. Also important is energy conservation, considering how much energy it takes for say, showering or running errands. Do you really have enough energy on this particular day, to do both tasks? Showering and washing my hair are very exhausting tasks for me, I know, it seems so simple, right?  I’ve done all these things. I consider these things now, throughout my day.

Yet, I still can’t invert my head without dizziness. Think through your day. How many times do you bend over without a thought? “What IS that under my bed”? “Do I really want to know”? Bend over to wrap a towel around your wet hair? Bend down to dry your lower half? Doing a somersault? Okay, I’m joking with that last one, but the list goes on. Just take a count of how many times you bend over in your daily life? It’s probably many more times than you think. How might you handle it?  One reason I’m working on my posture is due to an accommodation I’ve picked up from the beginning of my Vertigo. Accommodation is something we do without consciously thinking about it. We do it in order to complete the task. An example of accommodation: In a seated position, you need to reach for something above your head, just out of reach. As you reach, your hip (on the same side) raises off the seat.Try it yourself, you’ll see. Besides, I kinda like my 5′ 10′ self!

Since I’m unable to hang my head down when bending over, I began hyperextending my neck, which is not good for us. It pinches Cranial Nerves causing numbness, tingling and more in my arm. I recently discovered I have two Cervical Vertebrae that are so offset, the Neuro-Surgeon thinks I likely ‘broke my neck as a child and don’t remember it’. Really? Yes, I still live in the same place as my misdiagnosis of a Vestibular Disorder. No, I’m not having anything done at this time for my neck as he wanted to use surgery to repair my ‘broken neck that I don’t remember’. What happens when I hyperextend my neck is distressing. My left arm goes completely numb. I can still move it, use it, but without feeling what I’m holding, accidents can/will happen. I began using neck exercises from an early round of PT, no improvement. I’ve seen my MRI pictures and there are two vertebrae that, at some point, will likely require surgery. It won’t be done here, though!

Some of the modifications I’ve made to my home:

  • a shower chair is essential! I use it in the shower and when my husband colors my hair (don’t be a hater!)
  • my furniture is arranged for both tactile cues and a place to plop should I become dizzy
  • food prep: I sit at my kitchen table
  • laundry: I sort clothes with my feet. Then, in kind of a football stance (bending at my waist with neck extended, which is not good for us! I load/unload washer/dryer.  I’m working to get my husband to build platforms for the washer/dryer set, then hardly any bending would be required
  • I’ve recently begun using a cane (VERY reluctantly!), after a recent situation I couldn’t get out of, my husband’s medical testing. I had to maneuver some very difficult solid white hallways. White ceiling, floor, and walls. I had to take 2 breaks and had non-medical employees ask if needed help, very nice! I am using one from our daughter’s accident. It’s functional, which translates to ugly. If I’m going to start doing this regularly, I want a ‘pimp cane’!

These are just of few of the modifications I put into place, making my home safer, as I do believe seven broken bones is enough for me.

vestibular.org

Questions Galore. I Question It All!

I’ve started about 6 different posts and completed not a single one. Am I having brain fog or am I just scattered? I think it’s a little of both, but no matter, I still need to complete one of them! I continue to come back to this question, how did I wind up here? A 60-year-old woman, forced to retire from a career I loved because I am chronically dizzy? “If you can’t see it, then it’s not there“. We all know the feeling of having someone not believe you. WHY would anyone fake a Vestibular Disorder? Attention? I do NOT need this kind of attention, believe me!  I have come to realize, it takes a strong person to deal with an invisible and chronic disorder, a very strong person. I’ve come to believe I am this strong person. The old saying, “Walk a mile in my shoes”, comes to mind. To walk in my shoes, you’d have to be willing to take a fall at the drop of a hat and break some bones, multiple bones! Yes, a Vestibular Disorder is invisible as it lays within our brains, but the symptoms are surely visible. At the very least, they can see the bruises I bear from ‘clipping’  doorways or tables or the footboard of my bed. The fact is, I don’t get out much, not much at all. Nine times out of ten, it’s to go to a doctors appointment. So yes, I do a lot of wondering what got me here, besides the original sneeze…

If I look back at my medical history, I guess I have always been a ‘sickly‘ person. Aside from the usual childhood diseases of the era (circa 1958). My oldest sibling brought them all home from school. Most of these diseases either no longer exist or we now have vaccinations for, such as Measles, Mumps, Rubella, Scarlet Fever, Chicken Pox, Whooping Cough…My poor mother watching helplessly, as each disease traveled down the line of siblings. Catching one after another from sibling to sibling, all within a couple of months. My mother was the only one unaffected by that first school visit. Mother documented this period on a calendar and it was crammed full of notes, who got what when and such. It overlapped into the Christmas holidays, yet we still had our regular holiday, just 4 children opening gifts, covered with scabs! We all survived, with the worst side effect was scarring from the Chicken Pox. The Small Pox Vaccination was a ‘badge of honor’ for our generation, leaving a scar on our shoulder (Mike received two due to a distracted school nurse!). Small Pox no longer exists because of vaccinations. Was my mother a Saint? The simple answer, yes!

The only difference after that, my appendix was taken out when I was six-years-old ( this is me at that age above). I caught a Staph Infection at the hospital, prolonging my stay. This is the infection that, I believe, made me susceptible to every single thing that followed. It wasn’t a Superbug of today, but I’ve had a lifetime of some kind of illness, way more than the average person. Is this scientific? Of course not, but it’s my hypothesis…None of my siblings were hospitalized in childhood, just me. None had health issues like me. I was ‘teased’ for being sick. Isn’t that what siblings do, though? So I really wonder about Staph...Back then, simple Penicillin ‘cured’ it, yet it recurred over and over in me. We now know the overuse of antibiotics, makes us resistant to them. There was a time, I didn’t think twice about taking them, but I am now resistant to take antibiotics! Most of the diseases we get are viral anyway, making antibiotics useless. I think it makes us feel better that we are given prescriptions after seeing a doctor when we’re sick. Because when you feel so bad, you want that magic pill.

America is a prescription pill Nation. I’m beginning to question all the medicine I take after a mix up with my Lyrica (NOT my fault!). Most meds, I’ve been on so long, I don’t even look at the label to see if it was written or filled correctly. I just filled my pill holder until they’re gone, then call in for a refill. A few weeks ago, I ran out of the Lyrica (of course, it was a Friday…) and called in my refill only to be told, “It’s too soon”. Then, I did I look at the bottle. ‘Someone’ at the doctor’s office had called in half what it should have been! Of course, the person failed to properly document, thus remaining unidentified. really? According to the pharmacist, “She couldn’t call my doctor” (*note: Do not be ugly to the person who might save you) and according to my doctor, he was “On call all weekend, they should have called me. You can’t go without that medicine”…Regardless, I had to go without them for 3 days. Three days of almost immediate withdrawal symptoms, nausea, vomiting, profuse sweating, and pain unlike I’d felt in years! Lyrica is a Class 5 Narcotic they say is non-addicting but after that??? Now, I want off of it but am terrified after that experience. I know the dosage is slowly lowered, but still…Back to researching…As I have more questions now…

 

vestibular.org